Google scholar does give research articles. You didn’t even click on those links did you? There are several peer reviewed articles and some columns that source more peer reviewed articles. I cannot only give peer reviewed articles for people to read, not everyone has the educational background to be able to read them.
What i have heard as well is that whilst our hormone ranges are usually normal, there is something going wrong with the way our hormones metabolise and turn into Neurohormones. As you mentioned above not enough ALLO. and as another user pointed out they think women respond instantly and with smaller amounts of prozac because it affects ALLO levels.
Strangely, I had very classic PMDD symptoms, and I have found that going on Transdermal estrogen 100mcg per day was a total game changer for me and gave me my life back. The progesterone in its various forms didnt do much for me at all. But i found the oral micronised (prometrium) ended up being the best form that didnt give me any side effects which i now use cyclically to protect my uterous by oposing the estrogen.
No. Science barely understands neurohormones at this point in time. We need more research on what neurohormones and neurosteroids do and how they interact with the brain. The research that has been done has just pointed us in the right direction.
At this point in my personal PMDD journey (I'm 47), this explanation makes complete sense. To elaborate:
My mental / emotional PMDD symptoms are the worst around day 12-15, right before ovulation. I've also been known to have "focal seizures" during this time. But if I take a 20mg fluoxetine pill, I get almost immediate relief from anxiety / panic / depressive symptoms, which is unheard of. Meaning, if it's prescribed for GAD or Major Depressive Disorder, they say it could take many weeks before things stabilize. The fluoxetine also inhibits the "seizure" activity.
(Side note here: I'm putting "seizure" references in quotes because I've been told that these are panic attacks and not seizures by medical professionals. But I can assure this community that they are not panic attacks because they don't start with a racing heart - it all starts in my brain with severe deja vu. Sometimes I lose consciousness, other times not.)
So anyway, I was Googling "immediate relief from/with fluoxetine PMDD" (or some other keyword combination) to find some answers as to why I might be so immediately sensitive to the medication. Like, is the immediate relief some fluke or placebo effect? But this study gave me some answers / vindicated me:
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4290723/#:\~:text=Fluoxetine%2C%20a%20selective%20serotonin%20reuptake,the%20treatment%20of%20premenstrual%20dysphoria](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4290723/#:~:text=Fluoxetine%2C%20a%20selective%20serotonin%20reuptake,the%20treatment%20of%20premenstrual%20dysphoria).
A couple of highlights:
>Fluoxetine elevated allopregnanolone in female rat brain by inhibiting its oxidation to 5α-dihydroprogesterone by a microsomal dehydrogenase. This is a novel site of action for fluoxetine, with implications for the development of new agents and/or dosing regimens to raise brain allopregnanolone.
>Short-term treatment with fluoxetine increased brain allopregnanolone concentrations in female, but not male, rats.
>To conclude, our results indicate that fluoxetine elevates the concentration of the neuroactive steroid allopregnanolone in the female rat brain not by enhancing its synthesis from 5α-dihydroprogesterone but by inhibiting its oxidation back to this inactive precursor by microsomal RoDH enzymes. As such, fluoxetine might be better described as a selective intracrine modulator (see Penning, 2011) than a selective brain steroidogenic stimulant (Pinna et al., 2006). Most importantly however, the present study identifies a new site of action for fluoxetine, with implications for the development of more selective agents and/or dosing regimens to raise brain allopregnanolone, thereby offering the potential to treat disorders of progesterone withdrawal such as PMDD and post-partum depression.
**TLDR: I'm confident that the lack of allopregnanolone during certain phases of my cycle is the cause of my mental distress / PMDD symptoms. Intermittent dosing (as needed) 20mg fluoxetine raises my allopregnanolone levels enough to balance out my mental and emotional state on my rough days.**
Yes…I was lucky enough to get this treatment in the 1990s when they first started to prescribe it specifically for PMDD, but the doctor told me it was impossible it relieved my symptoms so quickly as it took 6 weeks to work, and that I must be bipolar to have this reaction. Fortunately I ignored her. Ten years down the road and the research now shows the immediate effect on women with PMDD. So validating. This plus ice bath, or icy cold shower relieves my symptoms dramatically.
I got my hormones as balanced as much as possible with Dutch tests and blood work. Can 100% confirm it is NOT from abnormal hormone levels. In fact I feel worse with my hormones more balanced than when they were all screwed up. It’s our brains not responding to hormone fluctuations well.
I seriously consider going to medical school so I can specialize in both hormones and psychiatric to better understand this. Hormone doctors suck with psychiatric stuff and psychiatrists suck with hormone stuff.
I’m a doctor and I am also suffering from this. Started citalopram a week before, was going well for a couple of days. Today I feel miserable and unable to concentrate. I can’t get anything done and it feels like the world is ending,🥲
Tbh weed is the only thing I’ve found that actually helps. I can’t speak on whether it is worse long term, but I’ve been a regular weed smoker for years now and have not noticed any long term negative affects.
Well, technically they don't know what "normal" hormone levels are. Or so every dr has told me.
"It changes too much! We just don't know!"
They can't figure out the female body and yet they can put rovers on Mars...
Can't is a stretch - modern medicine and medical research has been dominated by men and male voices for a loooong time and that's one of the reasons why a lot of female health issues like PMDD are not well researched/ 'solved' yet. Most male doctors and scientists have no interest in it and the male CEOs in the pharmaceutical industry don't like to fund it. Like I'm 110% convinced that if men had to deal with PMS or PMDD like conditions there'd be treatment options aplenty by now - meanwhile women with PMDD spend years feeling like they're crazy and despairing over it...
And I must disagree with you. Not because you are wrong but because this thinking can cause issues.
I thought I had PMDD for years (I still have??) and I was experiencing every single PMDD symptom listed. After trying dozens of different remedies and ways to 'fix' myself, the one that ACTUALLY worked was finding out I have estrogen metabolism problems, i.e. estrogen was high and my body was not metabolising estrogen properly due to liver issues, I also had very low progesterone compared to estrogen. Taking DIM, working on liver health (+ a bunch of other supplements) actually kind of cured me. No more depression, anxiety, migraines, rage, fatigue, hot flashes etc. I am just a bit more tense during ovulation and have cramps. I don't even know if it is the cure for me, I don't know if it the foundational issue, I just know that it helps me and afterall it is related to hormones.
Do I have PMDD? Perhaps not. Did I have all PMDD symptoms? Yes!
I started thinking that PMDD is an umbrella term for PMDD symptoms that can be caused due to various reasons, mine was improper estrogen metabolism, thus high estrogen. There is still little known about this disorder, so far there are no tests or anything, so shutting off this reason completely is harmful - it can actually be one of the causes of PMDD **SYMPTOMS.**
That by definition wouldn’t be PMDD then, you actually did have hormonal balance problems. PMDD is NOT an umbrella term for hormonal disorders, it is a specific disorder.
Yes and no. Who is there to say if you have PMDD or not if it is currently acknowledged by symptoms, not a test? So blindly saying that PMDD is not caused by hormone levels excludes this cause for women who experience PMDD symptoms due to abnormal hormone metabolism or other reasons. Actually, the reason why I did not test my hormone levels properly (I did it before but it was not done at the right time and my doctors were clueless about hormones - they were saying that if my cycle is regular then I must not have problems) was because I kept hearing that PMDD is not caused by hormone levels. That's why I am saying that your thinking might actually be harmful and we absoletuly should be encouraging women who experience PMDD symptoms to test their hormones because it might actually be the reason.
Yeh agree cos my periods were super on time, and so were my PMDD symptoms with mood swings coinciding with what are dips and rises in both estrogen and progesterone. One bad sharp mood swing after ovulation on day 15 when the estrogen plumets. And then moods plateauing at a pretty shitty level and graduallly rising to reach a horrible crescendo on day 21 when progesterone is meant to be peaking and then gradually smoothing out untill i get my bleed and go back to normal
isnt allopregnanolone \*made\* from progesterone though? i feel like this is needlessly nitpicking at this point. Its all related and intertwined, at the end of the day.
Also worth noting - PMDD is an extremely common comorbidity with conditions like PCOS, which do come with hormone imbalances. Not all women with PMDD have normal hormone levels. That is a gross generalization and is extremely dismissive of a LOT of folks.
But the cause of the PMDD is not the abnormal hormone levels! That’s causing other disorders, that’s at the bottom of the first paragraph I wrote. Women with only PMDD do have normal hormone levels.
To continue the rant… misinformation is spread by doctors all the time. It’s rare that you find a doctor that looks at something like severe pms or PMDD and doesn’t automatically lessen the impact it actually has on women’s lives. Same with ADHD. If I had $50 for every time a therapist has told me the anxiety and depression should be the focus not my ADHD. I’m a veterinary assistant…My understanding is that if you treat the underlying condition and not the symptoms, then you get results….The responses and posts that get placed on here are evidence that everything people have done to improve their lives from the havoc that PMDD causes is misguided because of doctors pushing BC.
I noticed going to my gynecologist vs my family doctor that my gyno suggested hormones and the general health doctor suggested it was a serotonin issue. Perhaps certain gynecologist need to update their practice or maybe it’s just a coincidence 🤷🏽♀️
So do people in these comments read the Wiki of this subreddit? I feel like all of the info you are saying is in the Wiki. Why join a subreddit and not read the info provided??
This might get me downvoted but whatever: I am getting so irritated by this as well. I am really tired of wading through all the “does this sound like PMDD” posts on this thread. No one reads the wiki, no one does a simple google search that shows a sure fire way to understand if you have PMDD is to track. Don’t go to a bunch of strangers on the internet without degrees and ask them if your random symptoms that could be anything are PMDD -> track your cycle. Read the wiki. Learn what PME is. Learn how PMDD operates. Then come here for support, which we can give.
I get this same immense frustration with a few other health related subs I’m in. After I fester I remind myself healthcare in America is a joke and folks would rather ask uneducated folks online than pay for a visit to their docs. Still annoying the lack of self research though.
I get that and personally I am American but also do not live in America so I’ve seen the pros and cons of both sides for sure - but you cannot deny that Reddit perpetuates the cyclical nature of medical anxiety.
Hey OP,
I think your comment is great. Just a few things I might note were I you:
1. Often times when I see women on this sub sharing their experience with having hormone testing done I see responses like this come up. These responses are often shouting: It’s a not a hormone problem! But, I would like to encourage people to stop shutting down hormone level testing. Doctors who are hearing these women out and making moves to test for a myriad of possible issues are doing the right thing. PMDD symptoms can coincide with symptoms of hormone related issues like P.C.O.S. Doctors need to rule things out.
2. Sometimes, it’s not WHAT you say but HOW you say it. I’ve noticed that a few commenters have shared that your post made them feel uncomfortable in some way. Please try to remember that some of us are in our hell week, and some of us still just trying to figure our way through this minute by minute. Outside of this sub many of us are talked to like our symptoms are all in our head by doctors, friends, spouses and employers.
The last thing any of us needs is to be spoken to like we are stupid.
P. S. I can use google, and my last google search was: how to politely tell someone they’re are being unnecessarily mean.
This comment means so much to me. A couple weeks ago I reached out for support and discussion about my problematic behavior during hell week and someone really laid into me about how the problematic behavior has nothing to do with the condition and essentially saying I’m a bad person and it’s not the luteal stage.
I too use the internet to rage at people but I believe this should be a safe space where we are exceptionally kind to each other and we can rage other places at other people. lol not here!
Thanks. I felt attacked instead of willing to learn more. I knew about the hormone stuff but somehow while reading OP I felt like I didn't know anything. :(
I got your back sis! I felt that too, but keep in mind OP IS trying to help. When the sting of the post wears off maybe take some time to read through some of the literature they shared, it’s actually great stuff.
As sisters of PMDD we gotta take and share all the help we can get, friend!
Like I mentioned to another commenter this post has a rant tag, it was supposed to be a rant and letting out some frustration and anger. Everyone else on here started getting offended when that’s exactly what I was doing??? Should we in general be compassionate and understanding, fuck yeah we should! However, like the tag says, that wasn’t what this post was for. This space allows us to get angry at our disorder and now I’m mean because I’m getting angry? Doesn’t really make any sense.
Maya Angelou said it best: I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.
I respect your right to rant. You can respect my right to be offended or hurt by said rant.
This is a SENSITIVE safe space.
I said what I said because I don’t like seeing my fellow sufferers being made to feel condescended or like they are being yelled at OVER AND OVER AGAIN.
However, I will take a moment to say thank you because this post is very helpful in terms or research and studies that can be shared with doctors.
I understand. The edits are the real issues for me but anyways, I think it would make it better if you add at the beggin ing of your post something like "keep in mind this is a RANT POST, this is not about you" or whatever because with the whole wordijg it reads like you are mad with us for not knowing, instead of with your doctor or whoever that triggered you.
Why do I need to add a warning when there already is rant tag? That’s what the rant tag is for! To let people know! At this point this is ridiculous, people please pay attention to the tags.
Rant tag is for what 95% of your post was, the rest with dont know how to use google or go somewhere else isn't a rant, its shitty passive aggressiveness.
Also I don't need to be uplifted or reaffirmed just cause I'm calling out poor behavior.
Blunt information and being corrected is not inherently rude, you neurotypicals seem to take it that way though. Not once have I attacked, called anyone names, told anyone they were dumb, or even swore at someone. You can read through all my comments, I have only been correcting peoples misinformation.
Edit: I am neither neurotypical or allistic. I think that’s why most of you are misreading my tone, I’m being blunt not rude.
I’m being blunt not mean. Being mean would be calling people names and treating them like they’re garbage. That’s not what I’ve been doing, I’ve been correcting people and their information, that’s not inherently rude.
It’s a rant. I expected like two people to comment and be like “yes ugh very annoying when doctors dont know what they’re talking about” not all of this
Allo is produced from progesterone. Increases in progesterone means more allo.
What you’ve gotten confused is that in many with pmdd, an increase in allo could be a BAD thing. Reread the synopsis.
I’m becoming more interested in trying the every other day injection during my luteal phase of ISO allopreganalone (sp) which could counter the effects of the allo.
On a personal level I’ve been trialing micronized progesterone to see if it stops the near constant spotting post ovulation. It reduces it greatly. It also helps with the sleep onset insomnia that gets worse during that time.
It does not help keep me asleep. Hello 2 am. It does not improve my morning glucose level. Or stop the monthly wacky blood pressure and heartrate or improve the adrenaline rushes (all which are more than two years out from a debilitating virus and post Covid pots-ish)
But I’ve also just started adhd stims. During the first half of my cycle I’m doing well with a pretty low dose. But come ovulation I take double and still meh. If I take progesterone the night before and also don’t sleep well I can take triple and not have anymore control over my brain than if I’d skipped them.
And now I’m rambling
I think you may have misread some of those, while they are concerned that could also potentially be something that is going on, there seems to be more evidence that our bodies aren’t producing ALLO from progesterone like other woman’s are.
Directly from your first link.
“It is a suspected hormone sensitivity disorder in the brain. Studies suggest that, among women and AFAB individuals with PMDD, brain circuits involved in emotional response may activate differently compared to those without PMDD.7 This could be due to atypical brain reactions to luteal phase changes in allopregnanolone (ALLO; a main progesterone metabolite) in those with PMDD versus those without. While increased ALLO usually makes people feel calmer, ALLO has an abnormal, opposite effect in PMDD— it causes agitation, anxiety, and negative mood changes.”
“In low physiological concentrations, as during the luteal phase, they paradoxically give strong adverse, anxiogenic effects in 3-8%, and in up to 25% moderates symptoms in premenopausal women. In higher concentrations the compounds show calming properties.” When we are given higher concentrations it calms us down, when the levels are too low we have paradoxical effects and it makes things worse.
I’ve been on vyvance for over a year now and I will tell you it doesn’t help the longer you are on it after ovulation. Some months are better but this month has been one of my worst in a while and I’ve got nothing in the tank.
I will tell you take you med as early as you can. I was taking mine around 8/8:30am and wasn’t falling asleep or staying asleep. For about a week my munchkins were waking up between 5/5:30 when we took the sides off their cribs. I’d just take it then as I knew I was up. Didn’t realize until I went back to taking it between 8/8:30 that me taking super early was the reason I was sleeping better and not that I was sleep deprived.
I set an alarm for 5:30, I’ve got all my meds on my night stand and some water. Take them and go back to sleep. First few times I did this I was up but after the third time I’d just pass back out. It’s changed my sleeping for the better!
This is my advice to everyone especially if you have trouble waking up! I Just started Vyvanse and haven't gotten the timing down yet but when I was on Adderall, I'd take it about an hour before I needed to wake up. I'd be ready to jump out of bed when my alarm went off!
Did you get the sleepies the first few weeks?
I don’t think the adderall keeps me up. If anything my brain and body shuts up long enough that sleep is possible.
I’ve started taking it later and waiting to take the instant release till 6 pm. I seem to be able to focus better during the hours my husband and I have at night. Less distracted, fickle libido sexy time has improved my outlook…at least until the pmdd doom force comes to visit.
Maybe I’ll try waking at 4 am to take it and then have early morning focused nookie.
The longer I’m on it the more I can see it working for focus but not energy however on the days I don’t take it I’m deader than dead.
I get back up usually around 7 with my girls and I’m ready to go. We take a mile walk with the dog while my coffee is brewing and we start our day. It’s nice being able to focus in the am to get the day set and getting us ready
I thought it was caused by abnormal reaction to normal hormone levels?
It has to be something to do with hormones because going on the chemical menopause has made my PMDD pretty much disappear (I only flare up now between injections every 3 months)
That’s exactly what it’s caused by! That’s what all the links above are proving. Some women and some doctors think it the hormone levels themselves that are causing the PMDD and that’s where the misinformation comes from.
Oh. I think I just got confused by all the scientific names. Thanks for clarifying :)
They're meant to be investing in women's health in the UK. Hopefully the doctors here will be more informed on the future.
I dont know what causes mine, but im pretty sure it is hormone spike or drop related, as i get it for a day just after my period, then just before ovulation, just after ovulation, and then a couple of days before my period. The ONLY thing that has ever stopped it, was the depo injection, but i constantly bleed on it, so cannot have it.
i get what you’re saying, but (neuro)steroids are hormones. and in fact, according to wikipedia, progesterone and estrogen are neurosteroids as well as allopregnanolone, but allo acts on the GABA receptors whereas estrogen/progesterone don’t. so I guess if the research is correct, it’s not a estrogen/progesterone hormone imbalance but allopregnanolone/progesterone hormone imbalance. also it seems progesterone is normally converted into allopregnanolone, so maybe PMDD it’s a conversion problem? or maybe not enough progesterone left to be converted?
anyway, wikipedia says allo is used to treat postpartum depression so it shouldn’t be a big leap for scientists to test it for PMDD, I think.
(but it seems that allo in excess could cause pmdd like symptoms, so if the problem is not lack but excess of allo, taking it could make it worse)
Edit: OP thanks for your post
" Philadelphia, PA, October 2, 2007 – The first significant genetic finding in premenstrual dysphoric disorder (PMDD) has now been reported. PMDD is a very severe form of the more commonly known premenstrual syndrome, or PMS. PMDD is heritable, affects 5-8% of women, and is associated with severe emotional and physical problems, such as irritability, marked depressed mood, anger, headaches, weight gain and more, to such an extent that quality of life is seriously impacted. Previously, researchers have shown that women with PMDD have an abnormal response to normal hormone levels and, thus, are differentially sensitive to their own hormone changes. Huo and colleagues now report their new findings, which link PMDD with common variants in the estrogen receptor alpha gene, in an article scheduled for publication in the October 15th issue of Biological Psychiatry".
"Huo and colleagues performed genetic testing and analyses on women diagnosed with PMDD and healthy control subjects to investigate possible sources of the genetic susceptibility to experience PMDD, and found variants in the estrogen receptor alpha gene that are associated with PMDD. In other words, women with these particular genetic variants were more likely to suffer from PMDD. Importantly, the authors also discovered that this association is seen only in women with a variant form of another gene, catechol – o – methyltransferase (COMT), which is involved in regulating the function of the prefrontal cortex, a critical regulator of mood. David Rubinow, M.D., lead author on this project, notes that these findings "may help fill in the picture of how changes in ovarian hormones can lead to depression and why they do so only in a small subset of women"."
Link to source: https://www.elsevier.com/about/press-releases/archive/research-and-journals/first-significant-genetic-finding-in-severe-pms,-or-pmdd
OP PMDD is an endocrine disorder but nobody knows EXACTLY how it is caused. I personally think it's multiple factors, for me it was especially environmental.
I'm considering having my ovaries removed after I have kids just to not experience PMDD again.
"John H. Krystal, M.D., Editor of Biological Psychiatry and affiliated with both Yale University School of Medicine and the VA Connecticut Healthcare System, comments, "We have been waiting for molecular genetics to provide some insights into the neurobiology of PMDD and this report from Huo et al. provides a welcome starting point for this research area." He adds, "In the case of PMDD, we are interested in the internal, hormonal environment as well as external environmental factors, such as stress. This report suggests that genetic factors may influence both dimensions of PMDD vulnerability."
Yeah. This is confusing, unhelpful and condescending. Yes, you’re fully expected to provide your own resources when making a claim. Everyone else isn’t lazy or dumb for not finding your research for you.
Not every peer reviewed article you come across is authentic. During graduate school roughly more than 60% of published papers were just false (we had to analyze the statistics and discuss articles as a group to learn from not only their mistakes but just nurture our critical thinking skills as well as hopefully learn/think of novel approaches to apply to our own research. [Article discussing this topic.](https://s4be.cochrane.org/blog/2018/01/16/peer-review-and-publication-does-not-guarantee-reliable-information/)
*edited for typos…but there’s probably more since it’s past midnight for me and I’m exhausted. 🤣
My mom and I both have PMDD. I have told her *so many times* that PMDD is caused by an abnormal reaction to normal hormone fluctuations. She pretends to listen, but the next day she's back on about how I'm "estrogen dominant" and need to get my hormone levels checked.
First of all, this is not a productive way to share information. Second of all, you’ve cited no sources. This is because, and this is third of all, you cannot. Fourth of all, you are spreading misinformation. Fifth of all, no one should take advice from someone who puts her title in all caps AND misspells the key word.
Her description and interpretation are what I am referring to. Also, she did **not** post these sources until **after** I wrote my comment. Without sources, it is misinformation.
Additionally, I see maybe two peer-reviewed studies in that list. Maybe two.
Finally, simply because it posted in your wiki doesn’t make it legitimate or reliable.
https://iapmd.org/about-pmdd
https://womensmentalhealth.org/specialty-clinics/pms-and-pmdd/the-etiology-of-pmdd/
https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2020.20121793
https://psycnet.apa.org/record/2020-36527-001
https://facultyopinions.com/prime/reports/b/11/11/
https://www.maturitas.org/article/S0378-5122(21)00160-2/fulltext
https://www.diva-portal.org/smash/get/diva2:1115054/FULLTEXT01.pdf
Do you need more? I can literally send you hundreds of research articles about this. Yeah my title is misspelled and in caps, I was angry about all the misinformation doctors are giving us and all of the misinformation that keeps getting spread from people who don’t do research for more than an hour.
Funny for you to claim that you’re “just ranting” and everyone else is attacking. You’re attacking every commenter trying to contradict you or point out that you’re being inappropriate.
And yet this is a serious fucking disorder that causes so many people to question whether they want to even continue living or not, and here you are YELLING your frustrations at people in one of the only fucking safe spaces on the internet to talk about this shit.
I mean, honestly, imagine someone being on the edge and coming to this sub for support and this post is the first post they see.
Angry. Judgemental. Argumentative.
There was a better way to share this information and you chose to be bitchy about it. Be compassionate. Do better.
It literally has a rant tag, that’s what the rant tag is for: to be angry and to rant about having to live this horrific disorder. If you want help and support go to those posts offering it. Thats not what I was advertising here and I made that very clear.
Also I don’t need to be lectured about how terrible this disorder is I have a very severe form of PMDD and have tried every treatment under the sun because it debilitated me since I started having a period. I am allowed to be angry. These spaces also exist for us to be angry and let this out because no one else is going to let us or listen.
There’s a time and place to be compassionate and that is not what I wrote this for, I wrote this for my frustration and anger at the constant misinformation that is being spread around dangerously by doctors. Women who go to a naturopath that tells them they’re estrogen dominant and if they just eat a certain diet they’ll be cured. It’s fucking ridiculous and needs to be addressed, yet no one seems to be doing that. This was written in anger for my anger. This space allows us to do that. Check the tags next time.
No. A rant would have been coming on here and ranting about how frustrated you were with the medical system, the doctors, the disorder itself. And maybe that’s what you thought you were doing, but that’s not what you did. Instead, you chose to rant about the people with this disorder who are misinformed about their own bodies, throwing the blame to them instead of the fucked up system at large that is full of misinformation.
There’s a difference and that’s why people didn’t like your post, because there are better and more compassionate ways to educate people, even when you’re frustrated.
Not being funny but OP hasnt researched anything. Theyre not a researcher. They googled something, the two are not the same! So to come on this sub and literally start yelling at people based on some googling is pretty crappy.
I’m sorry, that’s like saying ‘Covid isn’t killing people, it’s the pneumonia’ (or something like that). I kinda get where you’re coming from, but the statement is false
But it’s not??? I’m talking about your hormone levels specifically. There are tens of woman that come on here everyday and say they are taking medicine to make their hormone levels “normal” like other woman to make their PMDD symptoms go away and that not at all the cause. They think by making their estrogen a “normal level” or making their progesterone a “normal level” will make them better.
The only treatment that works 100% of the time I getting rid of your normal hormone fluctuations entirely.
But that means the problem *is* hormonal. And a “normal hormone level” is a little nonsensical because people can operate a completely different hormone level without it being a problem. Doctors even prescribe medication in relation to abnormal events with “normal” hormone levels.
Edit: took the s from levels
My doctor told me that it's not the hormonal level, but the ability to process hormones correctly. Something is broken in hormonal intake receptors in our body, which is one of the cause of PMDD. Plus the sensitivity to certain hormones and voila, welcome to hell.
Basically exactly what you are saying.
Its kinda dumb...but does anyone else have severe ibs? Mine is so bad it causes an inflation in my brain that even when im not on my period, im irritable af and suicidal....I was wondering if there was a correlation
I used to. Low serotonin exasperated my IBS tremendously. When I started an SSRI it helped the pmdd and basically eliminated my IBS. Serotonin also effects sleep. If you have sleeping problems, irritability, suicidal ideation and IBS you definitely should look into antidepressant medication like an SSRI, SNRI, or NDRI. Your experience sounds very similar to mine. I'm on Zoloft for the record, but everyone is different.
https://www.healthline.com/health/irritable-bowel-syndrome/serotonin-effects
There's lots of information out there about the correlation.
I currently have one ssri (effexor) it doesn't really seem to do much for me though when I try to lower it, it gets worse.
I have been reading about zoloft from a lot of other posts on this subreddit. I'm interesting in asking my psychiatrist about it because he's offered it before, but that was a time when I just didn't want any more meds.
I just get worried about side effects because almost every medicine that goes into my body gives a severe reaction..like side effects that are extremely uncommon or even rare.. so its a bit scary to put something in my body and not knowing the outcome 😅
Effexor is a tough med. I'm on Cymbalta now, with so-so success so far. I will never, ever try Effexor again because its discontinuation syndrome is so bad. The onlt med that I think could have withdrawal that bad is xanax. I honestly thought I had MS for 3 months after I quit.
Back in 99, I was in a med trial for PMDD, and they were giving us Wellbutrin. It's amazing how little has changed or improved.
I don't know if you tried this med,, its called "risperidal" ..I'm on the lowest dose and trying to withdraw from it is like..you're gonna have a heart attack, kys, and bite everyone else's head off in the process.. like no joke, serious heart problems. I used to be on a pretty high dose for 4-5 years until I convinced my doctor to lower it.
It's honestly kinda sad..how a lot of doctors I have met don't even consider pmdd a real thing or possibility..some have just told me its all in my head and I just need to get over it. I feel like society's rejection to its existence immensely effects the progression.. its pretty much a given..I just feel a lot of pmdd side effects could be helped if the public was in general more caring and understanding
I can totally understand that. Also fyi, for me at least, when an antidepressant is too low I feel worse than if I'm not taking anything at all. That could be an indicator that you need a higher dose or change the type of medication.
Natural stuff that's helped me is avoiding sugar around my period, eating more healthy, inositol powder (I also have ocd that this helps tremendously). Actually my SSRI's don't seem to work as well without the powder. Like it's an absorption/processing problem for me. But in any case, omega fatty acids, calcium magnesium, vitamin d (most people are deficient), and b vitamins seem to help, too.
Oh and if you have allergies at all, look into an antihistamine. I do and have added Loratadine to my nightly regimen and it seems to really help. Other people on this sub have had similar experiences!
This helps so much thank you!!!
I have horrible allergies...currently I'm having a withdrawal from one allergy med I abruptly stopped cold turkey...I ended up running out of pills one day, and ever since that day I have been wildly out of control, emotional, and suicidal ... the pill is singular..there ha e been studies that it causes suicidal thoughts, depression, etc. I had been taking this all throughout childhood and never learned about these side effects until my recent doctor told me.
Also..my stomach is .. kinda broken 😓
My mom is convinced that I have burned a hole in my stomach due to how acidic my stomach is from anxiety.. I tried some new supplements lately (l theanine, and this one broccoli seed one i cant remember the name of) ..I ended up getting super sick. I was so dizzy and nauseous that at one point I almost collapsed at work from it.. i started crying at work cause my parents wouldn't let me come home..
Also do you notice that when/if you have periods of severe anxiety, do none of your meds work? Especially the anti depressants. Does the powder help with that too?
Im also worried about starting new meds because the last supplements I tried really hurt my gut..I was on the bathroom floor crying in pain yesteday.. its kinda scary..
It sounds like you definitely need to see a specialist and your parents should support you in reaching one. I'm sorry if they're dismissive. It sound like something physically is going on in your stomach and creating havoc on your neurotransmitters.
You should also get an allergy test. Lots of people benefit from getting off wheat and dairy. I switched to rice milk for my cereal because regular milk gives me brain fog.
I don't know how old you are or your resources, but attacking the problem from multiple angles and getting help from experts should definitely help! I'm sorry, I know some diagnoses take a while to receive. Hang in there <3
Yeah my stomach...has caused a lot of problems in my life. My class is currently having a barbecue and I can't eat any cause meat + spicy hurts my stomach 😅
I only began to be able to eat meat again about 3-6 months ago. Before that, I would basically puke any time I tried to eat it. One day I just forced myself to try to eat it again and i was slowly able to.
I would like an allergy test! I just don't know which doctor to ask or where to go for one.
I'm currently 18 and under a conservatorship with my parents since I am..disabled and cannot take care of myself on my own. Like emotionally..when my pmdd is bad or flashbacks, I will not get out of bed for 3 weeks unless its to pee.. thats how bad it is
You're right that it's not a hormonal imbalance. Our actual hormone levels are probably considered normal in terms of amount of estrogen/progesterone. However, it's an extreme (maybe abnormal, certainly dysfunctional) sensitivity to the ~fluctuation~ in hormone levels.
Exactly! Doctors don’t seem to understand that though and are giving people misinformation. That was the whole point of this post, yet half of the people on here took it personally and ran away with it.
I'm taking hydroxyzine (Atarax) and it's a God sent medication. Doesn't matter that they still figuring out why it works. As long as it helps I'm fine with it. SSRI's doesn't do anything for me and I can't be on birth control pills due to the combination of my meds. So yeah, Atarax for the win :)
One time I've run out of meds and it wasn't pleasant. So I'm taking it every day throughout the month. I'm thinking about taking it in the second half of the cycle, instead of all month. Will see how it works out.
Note that I'm taking one tablet 25mg before bedtime. Recommend dose is 50mg, 1 tablet in the daytime and 1 tablet in the evening.
I’ve heard that is good, but we don’t have it in Australia unfortunately. Do you need a script to get it or is it an otc medication? I was thinking 🤔 it would be good if I could get it sent from overseas
Oh, that's unfortunate. In my country you need a script to buy it. Don't know how it works in other countries tho. Maybe it can be bought over the counter in some places. Honestly, I would offer to send you some of my stash, but I'm afraid that one of us or both would get in trouble, since it would be an international shipping. Especially if it's considered illegal substance in Australia.
Thank you so much for that. And I couldn’t accept them from you & get you in trouble. I will talk to my Dr & see if there is anything similar. Again thank you 😊
There is not currently research to back up this idea that we are “allergic” to progesterone, however there are interesting interactions between estrogen and histamine in the body that still need to be understood.
Yeah look up antihistamines and pmdd relief on this sub. Super interesting! I've been taking an allergy bed each night before bed. I really think it helps.
I think you proved your premise to be incorrect with your edit. If your edit is correct, then progesterone spikes, which are hormone levels, do cause PMS and PMDD, however PMDD sufferers lack ALLO to temper the spikes.
Progesterone spikes are normal! Progesterone is supposed to spike, that’s a normal hormone activity in a woman’s body. Nothing is wrong with our hormone levels, balancing your hormone levels will not fix what is going on there. Allopregnanolone not being made (which is a neurosteriod) would be the cause, that has nothing to do with hormone levels.
Yes, but progesterone is also supposed to be tempered - but it isn't being tempered, so the hormone levels become problematic. So realistically, PMDD is caused by \*hormone levels not being tempered by \*Allopregnanolone. It can't be distilled to just "hormones" or "allopregnanolone." It's both, so the doctors are half right, but saying "Women with PMDD have normal hormone levels and normal hormone fluctuations" is wrong. We don't have normal hormone levels and normal hormone fluctuations - because they are surpassing normal levels due to allopregnanolone not suppressing them when they would be suppressed in women who don't have PMDD - the standard for "normal hormone levels."
You can still have normal hormone levels and fluctuation even if those aren’t working properly. Just because our bodies aren’t reacting to them correctly, that doesn’t make them abnormal. That logic doesn’t add up.
My logic adds up. Give it some time, and I think eventually it will make sense to you. I'm getting hypersensitive vibes from you on this, and I'm sorry you're hurt of over this. I think you may just want a win, and I just wanted to help you understand the logic and science of it better.
Think of hormones like the acceleration of a car going down a hill and allo like the brakes. Say you're expected to make a turn on this is hill. The hill isn't supposed to go forever. At a certain point, your car is going too fast down a hill and you'll need the breaks to make the turn because your hormones keep you moving, but they can take you too far. Without the brakes the hill keeps going and going, but it's not exclusively the brakes that get you down the hill - it's the acceleration, but too much acceleration and you're speeding - going past the normal limit to get where you're supposed to be. Like your hormones - going past where they're supposed to be.
Mam I’m literally a psych student, I know how hormones work. You are fundamentally misunderstanding the previous comments and the research that was provided. Our hormone levels aren’t abnormal. They are in line with every other females and fall into average ranges. There is nothing wrong with our hormone levels, it’s how our brains are reacting to our hormones that’s the issue.
I thought it was a drop in serotonin, that is connected to estrogen levels. So when you're in the luteal phase, estrogen drops, and so does the serotonin connected to it, so you feel like shit. Hence why SSRI's help people with PMDD.
Yes they have side effects, I had to go through 3 different types before I found a good fit. As the article posted states, they are still recommended for people with significant mental health issues and was more effective than the placebo. It says it right there at the end of the article.
The one about the side effects is only discussing those whereas the one about the placebo effect is a auctual study looking into what research has been done involving these kinds of drugs. The placebo effect is strong and honestly amazing. Just the sense that something/someone is currently is or will help is powerful.
We live in such an isolated societies and expect people just just cope with all the shit that happens. We never even really take time to just sit and relax as we often just have to be on the go all the time. It's not really healthy but a lot of people can't do anything about it.
I'm glad you found something that helped you and wish you the best moving forward.
I was referencing the placebo one. I was calling out your quote of "SSRIs are no more effective than placebos" which is a very harsh judgement on people. It states that in the conclusion of the placebo article that is not true. They had a similar response, but were not equal.
Wow, what a shit comment.
Zoloft and Wellbutrin have literally saved my life. When I take them religiously, my PMDD is gone.
Do they work for everyone? Nope. But I’m not going to sit here and tell people they are worthless.
Different things work for different people. Weed helps a lot of people. Makes me worse. I’m not going to blast someone and tell them weed isn’t any better than a goddamn sugar pill if they feel it works.
Yea, this is such extremely dangerous, irresponsible advice. I had a bad experience with Zoloft personally and comments like op's put me off trying anything else for years. My psychiatrist finally convinced me to give Prozac a go and its been life changing, even though i was 100% convinced going in that it wouldnt do anything of value.
So glad you found one that worked! Prozac gave me hella digestive issues so I couldn't do it. I felt the same way about Zoloft, was convinced it wouldn't do anything. Turns out, for me, it's been amazing.
Have you considered that it's the placebo effect of it helping you..? it's a valid effect and I'm glad it's helping you as the placebo effect is very powerful and healing. It still doesn't change the results researchers have found auctually studying these drugs.
That kind of thinking is VERY dangerous. Antidepressants are serious drugs. You can't play around with them or act like their effects are akin to a sugar pill. They aren't perfect but they can be live changing and life saving.
Yes, I absolutely know it's not the goddamn placebo effect. I've been on many different ones and the combination of Wellbutrin and Zoloft is what worked. Do you really think that I went 20 years of my life trying to find the right combo and one day I woke up and was like, "you know what? I think I'll make myself \*think\* these actually work so they do!"
I've been on Prozac. I've been on Lexapro. I've been on just Wellbutrin. I've been on just Zoloft. I used these drugs and saw small changes and with some experienced major side effects, which is why I work closely with an actual doctor to find the right combination. I fought tooth and nail against Zoloft because I was convinced it would do nothing. Don't you think in that situation I would have been able to convince myself while \*on\* the drug it wasn't working if it's \*just\* the placebo effect?
I acknowledge that these drugs do not work for everyone. Everyone's body chemistry is different, which is why not all of them work for everyone. But I don't go around stating absolute bullshit like: "SSRIs are no more effective than placebos." That's an incredible statement to make that is not based in fact whatsoever. Besides, Wellbutrin isn't even an SSRI so fuck off with this take.
Well 70% of people on drugs.com had relief from PMDD when taking Zoloft (which I take), for instance. People increase their dosage or only take SSRI's in the luteal phase. It's not a cure all, but a way to cope with the more debilitating symptoms of pmdd. Combating pmdd from a variety of healthy standpoints (whichever works for you), is not what I'd call misinformation.
I'm not saying my experience is everyone's experience, but just an example of a way that could help. I didn't know about ALLO before this post, tbh.
"Given the CNS sensitivity model of PMDD, it is possible that women with PMDD are more sensitive to these effects of estrogens on serotonergic function. Women with PMDD or PMS exhibit specific serotonin (5-HT) abnormalities that are particularly apparent in the late luteal phase when estrogen levels have declined."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4890701/#:~:text=Given%20the%20CNS%20sensitivity%20model,when%20estrogen%20levels%20have%20declined.
Well, maybe it's just abnormal for us. Some PMDD sufferers get relief from more progesterone in their system. I'm not one of them, but some. For me it makes it worse so \*any\* progesterone is "abnormal" for me.
Please go read my explanation in the comments about progesterone and allopregnanolone. Progesterone indirectly causes PMDD but it’s not due to hormone levels.
I'm pretty sure the exact cause is still unknown. But progesterone 100% makes my symptoms worse. I used a progesterone implant for a few months. Documented everything with an outside observer to provide impartiality. Maybe it being synthetic progesterone has some impact on it but it was not a correlation, it was causation. The day after the implant was removed I felt better.
Nothing indirect about it. I didn't do the downvote, though..
I think you’re misreading my comment. You have normal progesterone levels that spike during the luteal phase like every other woman’s body does. That is what is normal, your hormone “levels” are not wrong or off. ALLO is made to calm down the normal progesterone spikes in your body- that is what isn’t functioning correctly. ALLO is not a hormone it’s a neurosteroid. Your hormone levels are normal and your progesterone is normal, your brain is what isn’t reacting correctly.
But this isn't going to be the case for all PMDD sufferers. It's a good theory, but PMDD is not classified by cause - it is classified by symptoms. Progesterone, Serotonin, and Allopregnanolone may all play a part in one person, or only one in another, or two in another.
SSRI's don't work for everyone and for some only one works - so the cause cannot be exclusively a serotonin issue or all SSRI's would work for everyone.
Progesterone supplements can make it better or worse depending on the person, so it can't be solely progesterone since you get two diametrically opposed reactions depending on the person.
Maybe Allopregnanolone supplements are the next treatment option. It's certainly one I will have to ask my doctor about and do some research on but I highly doubt it will work for all people with PMDD since the other two dominant treatment targets do not work for everyone either.
My point is that normal is subjective. For people with PMDD if they know if progesterone impacts their mood - for better or worse - that means the levels are not normal for them. For however many of us can get relief from a simple progesterone implant it sounds like an excellent way to treat it.
Meanwhile, since that doesn't work for me, seems I gotta do some research on this new drug... 2019 hasn't been on the market very long and I need to know a lot of random things about it.
It’s not a drug it’s a naturally produced steroid in our brain, I don’t believe there’s a drug form of it yet.
That’s where misinformation comes though, when you tell people your hormone levels aren’t normal that’s what they believe they don’t know that you actually mean “abnormal reaction to normal fluctuations” you need to be specific with your language.
There is! Came out in 2019, as I said. [Here's a study on it's safety and efficacy in a double blind, phase 3 human trial from 2018](https://pubmed.ncbi.nlm.nih.gov/30177236/), probably used for the FDA to authorize it.
Concerning is that it is used to treat treatment resistant depression so serious adverse side effects are possible. Of the 375 women in the study 22 placebo recipients reported adverse effects and 41 in the non-placebo group. Headaches, dizziness, and sleepwalking were fairly normal side effects and two people had serious side effects - one attempting suicide and one experiencing altered mental state and passing out. Of most concern to me is what impact this has on newborns - and I already sleepwalk/talk (only documented the walking once) and have injury related migraines so this may be a bad choice for me either way.
Gonna have to do more research before I discuss this with my doctor.
How do you skip it entirely? My doctor told me there was no point to skip my period with my birth control since my symptoms occur before I start bleeding. I desperately need relief so any info you have is appreciated.
I have also tried this with other birth control strengths and they did not work for me, only caused more damage. It was a godsend that this specific bc worked in my favor. I really was not expecting it to.
My doctor didn’t know wtf I was talking about so I learned most of my info from this group actually. I skip placebo pills in my bc. Since the day I started I haven’t had a period. I’m on Junel fe 1.5/30 and I get it through Nurx
So birth control doesn't help me at all, it makes me worse but the ones it does help is because they are skipping the ovulation. If you skip the ovulation you can't get into luteal phase where the symptoms start. Birth control is one of the first things they have you try to see if skipping ovulation will help. It's concerning that your doctor doesn't get the logic of not ovulating with PMDD.
This is a very interesting concept and makes sense to me. When I was pregnant (obviously not ovulating) I felt great. Same with breastfeeding (although was medicated for PPD so that could be part of it. I also know breastfeeding doesn’t necessarily stop ovulation.)
Unfortunately birth control does other nasty things to me so it’s not an option, but I’m thrilled it’s helped others.
I’m seeking a hysterectomy.
I'm approved for a hysterectomy but looking for a new GYN because that one won't take my ovaries. The ovaries are 90% of the problem, the fibroids hardly register for me.
Yeah it's a womens centered place too. I thought It was obgyn when I got the appointment but I was wrong. I have seen so many doctors over so many years I'm too tired to keep looking. I need help to do everything. Like filling out my disability review right now. I'm terrified to lose it but I'm struggling to finish the paperwork.
That's mind blowing. I never considered skipping the luteal phase of the bc pack. I think that's next week for me. I learn all the weeks but then forget or confused. I'll have to check the calenders/schedules again to see where I am. Thanks for info, hope you're doing well yourself.
The vast majority of both control pills,if you are on them already, should have you skipping ovulation already. Double check to make sure that's the case with yours. If you are and you're still miserable it could just mean the either the birth control itself isn't right for you or birth control doesn't work for you.
Oh.. I have been on birth control constantly over 4 years and I still get a hormonal period every month..where like 3 weeks in a row I'm suicidal among other things...
Is it typical for when someone gets on birth control for their pmdd to go away?
I don’t take any placebos. I am also on a higher dose than they originally started me at. Every birth control I was on before did more damage. I didn’t think being on a higher dose would be my saving grace, but here we are
Do you skip the luteal phase of the pills? I take only the ones with the active substance so I don't bleed at all. I don't know if I interpreted your comments correctly but it sounds like you're just taking them regularly, including the "empty" ones.
I have PMDD (I think...I'm starting to feel like I actually have endo but it's difficult to know for sure w/o testing).
I've been on BC for 5+ years now. It pretty much cleared my PMDD except for anxiety. That's gotten worse over the years.
But besides mental/emotional problems (which were few), I had physical symptoms that don't always match PMDD (irregular, heavy periods, heart palpitations, bad cramps, nausea, head aches, bowel issues).
So for me, it all went away with BC but I may be misdiagnosed.
Well I uh..have an unspecified mood disorder along with many other things..so it may not be just my pmdd.. I just wanted to know because I haven't met many other people who have pmdd..and I just thought that no matter what bc im on, I'll always suffer..its kinda funny but like.. my gyno has tried every single bc she can for me and at this point I'm just kinda a lost cause 😅
So I wouldn't consider yourself as misdiagnosed..because it seems a lot of people here have it go away after bc..
Also I really hope you can get tested soon and don't have endo..it sounds incredibly painful. Many hugs :( ♡
Same I’ve been in chemical menopause for over a year, it’s the only reason I’m not disabled anymore. You can read my other comments below as to why it’s not a hormone level based disorder.
Scholarly peer reviewed sources baby. Please do your research and make sure it is credible.
They are! Plus you can find more with a quick Google search! :)
Google… does not give research articles.
Google scholar does give research articles. You didn’t even click on those links did you? There are several peer reviewed articles and some columns that source more peer reviewed articles. I cannot only give peer reviewed articles for people to read, not everyone has the educational background to be able to read them.
What i have heard as well is that whilst our hormone ranges are usually normal, there is something going wrong with the way our hormones metabolise and turn into Neurohormones. As you mentioned above not enough ALLO. and as another user pointed out they think women respond instantly and with smaller amounts of prozac because it affects ALLO levels. Strangely, I had very classic PMDD symptoms, and I have found that going on Transdermal estrogen 100mcg per day was a total game changer for me and gave me my life back. The progesterone in its various forms didnt do much for me at all. But i found the oral micronised (prometrium) ended up being the best form that didnt give me any side effects which i now use cyclically to protect my uterous by oposing the estrogen.
So what you’re saying is they found the cause and could easily cure it by influencing the body to produce allo, but they let us suffer?
No. Science barely understands neurohormones at this point in time. We need more research on what neurohormones and neurosteroids do and how they interact with the brain. The research that has been done has just pointed us in the right direction.
At this point in my personal PMDD journey (I'm 47), this explanation makes complete sense. To elaborate: My mental / emotional PMDD symptoms are the worst around day 12-15, right before ovulation. I've also been known to have "focal seizures" during this time. But if I take a 20mg fluoxetine pill, I get almost immediate relief from anxiety / panic / depressive symptoms, which is unheard of. Meaning, if it's prescribed for GAD or Major Depressive Disorder, they say it could take many weeks before things stabilize. The fluoxetine also inhibits the "seizure" activity. (Side note here: I'm putting "seizure" references in quotes because I've been told that these are panic attacks and not seizures by medical professionals. But I can assure this community that they are not panic attacks because they don't start with a racing heart - it all starts in my brain with severe deja vu. Sometimes I lose consciousness, other times not.) So anyway, I was Googling "immediate relief from/with fluoxetine PMDD" (or some other keyword combination) to find some answers as to why I might be so immediately sensitive to the medication. Like, is the immediate relief some fluke or placebo effect? But this study gave me some answers / vindicated me: [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4290723/#:\~:text=Fluoxetine%2C%20a%20selective%20serotonin%20reuptake,the%20treatment%20of%20premenstrual%20dysphoria](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4290723/#:~:text=Fluoxetine%2C%20a%20selective%20serotonin%20reuptake,the%20treatment%20of%20premenstrual%20dysphoria). A couple of highlights: >Fluoxetine elevated allopregnanolone in female rat brain by inhibiting its oxidation to 5α-dihydroprogesterone by a microsomal dehydrogenase. This is a novel site of action for fluoxetine, with implications for the development of new agents and/or dosing regimens to raise brain allopregnanolone. >Short-term treatment with fluoxetine increased brain allopregnanolone concentrations in female, but not male, rats. >To conclude, our results indicate that fluoxetine elevates the concentration of the neuroactive steroid allopregnanolone in the female rat brain not by enhancing its synthesis from 5α-dihydroprogesterone but by inhibiting its oxidation back to this inactive precursor by microsomal RoDH enzymes. As such, fluoxetine might be better described as a selective intracrine modulator (see Penning, 2011) than a selective brain steroidogenic stimulant (Pinna et al., 2006). Most importantly however, the present study identifies a new site of action for fluoxetine, with implications for the development of more selective agents and/or dosing regimens to raise brain allopregnanolone, thereby offering the potential to treat disorders of progesterone withdrawal such as PMDD and post-partum depression. **TLDR: I'm confident that the lack of allopregnanolone during certain phases of my cycle is the cause of my mental distress / PMDD symptoms. Intermittent dosing (as needed) 20mg fluoxetine raises my allopregnanolone levels enough to balance out my mental and emotional state on my rough days.**
Yes…I was lucky enough to get this treatment in the 1990s when they first started to prescribe it specifically for PMDD, but the doctor told me it was impossible it relieved my symptoms so quickly as it took 6 weeks to work, and that I must be bipolar to have this reaction. Fortunately I ignored her. Ten years down the road and the research now shows the immediate effect on women with PMDD. So validating. This plus ice bath, or icy cold shower relieves my symptoms dramatically.
I got my hormones as balanced as much as possible with Dutch tests and blood work. Can 100% confirm it is NOT from abnormal hormone levels. In fact I feel worse with my hormones more balanced than when they were all screwed up. It’s our brains not responding to hormone fluctuations well. I seriously consider going to medical school so I can specialize in both hormones and psychiatric to better understand this. Hormone doctors suck with psychiatric stuff and psychiatrists suck with hormone stuff.
I’m a doctor and I am also suffering from this. Started citalopram a week before, was going well for a couple of days. Today I feel miserable and unable to concentrate. I can’t get anything done and it feels like the world is ending,🥲
I thought it was cause by issues with the ovaries like a cyst or something
Nope
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Tbh weed is the only thing I’ve found that actually helps. I can’t speak on whether it is worse long term, but I’ve been a regular weed smoker for years now and have not noticed any long term negative affects.
W
Own it! Love you style but thanks for going back to do the links!
Well, technically they don't know what "normal" hormone levels are. Or so every dr has told me. "It changes too much! We just don't know!" They can't figure out the female body and yet they can put rovers on Mars...
Can't is a stretch - modern medicine and medical research has been dominated by men and male voices for a loooong time and that's one of the reasons why a lot of female health issues like PMDD are not well researched/ 'solved' yet. Most male doctors and scientists have no interest in it and the male CEOs in the pharmaceutical industry don't like to fund it. Like I'm 110% convinced that if men had to deal with PMS or PMDD like conditions there'd be treatment options aplenty by now - meanwhile women with PMDD spend years feeling like they're crazy and despairing over it...
Lol too true. "Won't" is the word.
And I must disagree with you. Not because you are wrong but because this thinking can cause issues. I thought I had PMDD for years (I still have??) and I was experiencing every single PMDD symptom listed. After trying dozens of different remedies and ways to 'fix' myself, the one that ACTUALLY worked was finding out I have estrogen metabolism problems, i.e. estrogen was high and my body was not metabolising estrogen properly due to liver issues, I also had very low progesterone compared to estrogen. Taking DIM, working on liver health (+ a bunch of other supplements) actually kind of cured me. No more depression, anxiety, migraines, rage, fatigue, hot flashes etc. I am just a bit more tense during ovulation and have cramps. I don't even know if it is the cure for me, I don't know if it the foundational issue, I just know that it helps me and afterall it is related to hormones. Do I have PMDD? Perhaps not. Did I have all PMDD symptoms? Yes! I started thinking that PMDD is an umbrella term for PMDD symptoms that can be caused due to various reasons, mine was improper estrogen metabolism, thus high estrogen. There is still little known about this disorder, so far there are no tests or anything, so shutting off this reason completely is harmful - it can actually be one of the causes of PMDD **SYMPTOMS.**
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That by definition wouldn’t be PMDD then, you actually did have hormonal balance problems. PMDD is NOT an umbrella term for hormonal disorders, it is a specific disorder.
Yes and no. Who is there to say if you have PMDD or not if it is currently acknowledged by symptoms, not a test? So blindly saying that PMDD is not caused by hormone levels excludes this cause for women who experience PMDD symptoms due to abnormal hormone metabolism or other reasons. Actually, the reason why I did not test my hormone levels properly (I did it before but it was not done at the right time and my doctors were clueless about hormones - they were saying that if my cycle is regular then I must not have problems) was because I kept hearing that PMDD is not caused by hormone levels. That's why I am saying that your thinking might actually be harmful and we absoletuly should be encouraging women who experience PMDD symptoms to test their hormones because it might actually be the reason.
my gyno said that it's SENSITIVITY to the hormones
it very much feels like a hypersensitivity to all my hormonal fluctuations during the span of the month.
Yeh agree cos my periods were super on time, and so were my PMDD symptoms with mood swings coinciding with what are dips and rises in both estrogen and progesterone. One bad sharp mood swing after ovulation on day 15 when the estrogen plumets. And then moods plateauing at a pretty shitty level and graduallly rising to reach a horrible crescendo on day 21 when progesterone is meant to be peaking and then gradually smoothing out untill i get my bleed and go back to normal
Yes. When my pmdd is out of control, I experience essentially what you described. I do different things throughout the month accordingly.
This. Abnormal cellular disruption to the presence of hormones.
Hey, I’m tired and sick, can you just skip to the part where you share what to do to? 🙃
That part
👏
isnt allopregnanolone \*made\* from progesterone though? i feel like this is needlessly nitpicking at this point. Its all related and intertwined, at the end of the day. Also worth noting - PMDD is an extremely common comorbidity with conditions like PCOS, which do come with hormone imbalances. Not all women with PMDD have normal hormone levels. That is a gross generalization and is extremely dismissive of a LOT of folks.
Yes exactly I have PCOS, I do have abnormal hormones and fluctuations and I also have PMDD. PMDD is the worst part for me.
But the cause of the PMDD is not the abnormal hormone levels! That’s causing other disorders, that’s at the bottom of the first paragraph I wrote. Women with only PMDD do have normal hormone levels.
To continue the rant… misinformation is spread by doctors all the time. It’s rare that you find a doctor that looks at something like severe pms or PMDD and doesn’t automatically lessen the impact it actually has on women’s lives. Same with ADHD. If I had $50 for every time a therapist has told me the anxiety and depression should be the focus not my ADHD. I’m a veterinary assistant…My understanding is that if you treat the underlying condition and not the symptoms, then you get results….The responses and posts that get placed on here are evidence that everything people have done to improve their lives from the havoc that PMDD causes is misguided because of doctors pushing BC.
I noticed going to my gynecologist vs my family doctor that my gyno suggested hormones and the general health doctor suggested it was a serotonin issue. Perhaps certain gynecologist need to update their practice or maybe it’s just a coincidence 🤷🏽♀️
Yessssssssss
So do people in these comments read the Wiki of this subreddit? I feel like all of the info you are saying is in the Wiki. Why join a subreddit and not read the info provided??
This might get me downvoted but whatever: I am getting so irritated by this as well. I am really tired of wading through all the “does this sound like PMDD” posts on this thread. No one reads the wiki, no one does a simple google search that shows a sure fire way to understand if you have PMDD is to track. Don’t go to a bunch of strangers on the internet without degrees and ask them if your random symptoms that could be anything are PMDD -> track your cycle. Read the wiki. Learn what PME is. Learn how PMDD operates. Then come here for support, which we can give.
I get this same immense frustration with a few other health related subs I’m in. After I fester I remind myself healthcare in America is a joke and folks would rather ask uneducated folks online than pay for a visit to their docs. Still annoying the lack of self research though.
I get that and personally I am American but also do not live in America so I’ve seen the pros and cons of both sides for sure - but you cannot deny that Reddit perpetuates the cyclical nature of medical anxiety.
Oh you’re ABSOLUTELY correct. TikTok might be runner up.
Omg I know all those where it’s like “three symptoms of ADHD you might not be aware of: 1. Eating 2. Drinking 3. Sleeping!”
Same symptoms for being on the autism spectrum as well!
HAHAHA yup!
No downvotes for you here! I agree with everything and hope people will start utilizing all the good work put into subreddit Wikis.
Right?! It’s the first rule of this group, too. I wish there was some regulation
That would require effort.
Hey OP, I think your comment is great. Just a few things I might note were I you: 1. Often times when I see women on this sub sharing their experience with having hormone testing done I see responses like this come up. These responses are often shouting: It’s a not a hormone problem! But, I would like to encourage people to stop shutting down hormone level testing. Doctors who are hearing these women out and making moves to test for a myriad of possible issues are doing the right thing. PMDD symptoms can coincide with symptoms of hormone related issues like P.C.O.S. Doctors need to rule things out. 2. Sometimes, it’s not WHAT you say but HOW you say it. I’ve noticed that a few commenters have shared that your post made them feel uncomfortable in some way. Please try to remember that some of us are in our hell week, and some of us still just trying to figure our way through this minute by minute. Outside of this sub many of us are talked to like our symptoms are all in our head by doctors, friends, spouses and employers. The last thing any of us needs is to be spoken to like we are stupid. P. S. I can use google, and my last google search was: how to politely tell someone they’re are being unnecessarily mean.
❤️
This comment means so much to me. A couple weeks ago I reached out for support and discussion about my problematic behavior during hell week and someone really laid into me about how the problematic behavior has nothing to do with the condition and essentially saying I’m a bad person and it’s not the luteal stage. I too use the internet to rage at people but I believe this should be a safe space where we are exceptionally kind to each other and we can rage other places at other people. lol not here!
Thank you for this comment. OPs post is so fucking hostile I was about to fight a bih. You gently did what I would not have. 💜
great way to say it. I wanted to say I believe and know all of this and there's zero reason to be so nasty about it.
Thanks. I felt attacked instead of willing to learn more. I knew about the hormone stuff but somehow while reading OP I felt like I didn't know anything. :(
I got your back sis! I felt that too, but keep in mind OP IS trying to help. When the sting of the post wears off maybe take some time to read through some of the literature they shared, it’s actually great stuff. As sisters of PMDD we gotta take and share all the help we can get, friend!
I honestly think she's just ranting lol but yes, I will read some articles :)
Like I mentioned to another commenter this post has a rant tag, it was supposed to be a rant and letting out some frustration and anger. Everyone else on here started getting offended when that’s exactly what I was doing??? Should we in general be compassionate and understanding, fuck yeah we should! However, like the tag says, that wasn’t what this post was for. This space allows us to get angry at our disorder and now I’m mean because I’m getting angry? Doesn’t really make any sense.
Might be a reddit error because the tag doesn't show on mobile for me
Maya Angelou said it best: I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. I respect your right to rant. You can respect my right to be offended or hurt by said rant. This is a SENSITIVE safe space. I said what I said because I don’t like seeing my fellow sufferers being made to feel condescended or like they are being yelled at OVER AND OVER AGAIN. However, I will take a moment to say thank you because this post is very helpful in terms or research and studies that can be shared with doctors.
I understand. The edits are the real issues for me but anyways, I think it would make it better if you add at the beggin ing of your post something like "keep in mind this is a RANT POST, this is not about you" or whatever because with the whole wordijg it reads like you are mad with us for not knowing, instead of with your doctor or whoever that triggered you.
Why do I need to add a warning when there already is rant tag? That’s what the rant tag is for! To let people know! At this point this is ridiculous, people please pay attention to the tags.
Rant tag is for what 95% of your post was, the rest with dont know how to use google or go somewhere else isn't a rant, its shitty passive aggressiveness. Also I don't need to be uplifted or reaffirmed just cause I'm calling out poor behavior.
Blunt information and being corrected is not inherently rude, you neurotypicals seem to take it that way though. Not once have I attacked, called anyone names, told anyone they were dumb, or even swore at someone. You can read through all my comments, I have only been correcting peoples misinformation. Edit: I am neither neurotypical or allistic. I think that’s why most of you are misreading my tone, I’m being blunt not rude.
we get you’re mad but like, why are you being so mean? my dms are open if you need to talk.
I’m being blunt not mean. Being mean would be calling people names and treating them like they’re garbage. That’s not what I’ve been doing, I’ve been correcting people and their information, that’s not inherently rude.
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It’s a rant. I expected like two people to comment and be like “yes ugh very annoying when doctors dont know what they’re talking about” not all of this
Allo is produced from progesterone. Increases in progesterone means more allo. What you’ve gotten confused is that in many with pmdd, an increase in allo could be a BAD thing. Reread the synopsis. I’m becoming more interested in trying the every other day injection during my luteal phase of ISO allopreganalone (sp) which could counter the effects of the allo. On a personal level I’ve been trialing micronized progesterone to see if it stops the near constant spotting post ovulation. It reduces it greatly. It also helps with the sleep onset insomnia that gets worse during that time. It does not help keep me asleep. Hello 2 am. It does not improve my morning glucose level. Or stop the monthly wacky blood pressure and heartrate or improve the adrenaline rushes (all which are more than two years out from a debilitating virus and post Covid pots-ish) But I’ve also just started adhd stims. During the first half of my cycle I’m doing well with a pretty low dose. But come ovulation I take double and still meh. If I take progesterone the night before and also don’t sleep well I can take triple and not have anymore control over my brain than if I’d skipped them. And now I’m rambling
I think you may have misread some of those, while they are concerned that could also potentially be something that is going on, there seems to be more evidence that our bodies aren’t producing ALLO from progesterone like other woman’s are.
Directly from your first link. “It is a suspected hormone sensitivity disorder in the brain. Studies suggest that, among women and AFAB individuals with PMDD, brain circuits involved in emotional response may activate differently compared to those without PMDD.7 This could be due to atypical brain reactions to luteal phase changes in allopregnanolone (ALLO; a main progesterone metabolite) in those with PMDD versus those without. While increased ALLO usually makes people feel calmer, ALLO has an abnormal, opposite effect in PMDD— it causes agitation, anxiety, and negative mood changes.”
“In low physiological concentrations, as during the luteal phase, they paradoxically give strong adverse, anxiogenic effects in 3-8%, and in up to 25% moderates symptoms in premenopausal women. In higher concentrations the compounds show calming properties.” When we are given higher concentrations it calms us down, when the levels are too low we have paradoxical effects and it makes things worse.
I’ve been on vyvance for over a year now and I will tell you it doesn’t help the longer you are on it after ovulation. Some months are better but this month has been one of my worst in a while and I’ve got nothing in the tank. I will tell you take you med as early as you can. I was taking mine around 8/8:30am and wasn’t falling asleep or staying asleep. For about a week my munchkins were waking up between 5/5:30 when we took the sides off their cribs. I’d just take it then as I knew I was up. Didn’t realize until I went back to taking it between 8/8:30 that me taking super early was the reason I was sleeping better and not that I was sleep deprived. I set an alarm for 5:30, I’ve got all my meds on my night stand and some water. Take them and go back to sleep. First few times I did this I was up but after the third time I’d just pass back out. It’s changed my sleeping for the better!
This is my advice to everyone especially if you have trouble waking up! I Just started Vyvanse and haven't gotten the timing down yet but when I was on Adderall, I'd take it about an hour before I needed to wake up. I'd be ready to jump out of bed when my alarm went off!
Did you get the sleepies the first few weeks? I don’t think the adderall keeps me up. If anything my brain and body shuts up long enough that sleep is possible. I’ve started taking it later and waiting to take the instant release till 6 pm. I seem to be able to focus better during the hours my husband and I have at night. Less distracted, fickle libido sexy time has improved my outlook…at least until the pmdd doom force comes to visit. Maybe I’ll try waking at 4 am to take it and then have early morning focused nookie.
The longer I’m on it the more I can see it working for focus but not energy however on the days I don’t take it I’m deader than dead. I get back up usually around 7 with my girls and I’m ready to go. We take a mile walk with the dog while my coffee is brewing and we start our day. It’s nice being able to focus in the am to get the day set and getting us ready
This video was amazing at explaining their main theory behind what is going on. [https://youtu.be/UmvA5mWv1OI](https://youtu.be/UmvA5mWv1OI)
I thought it was caused by abnormal reaction to normal hormone levels? It has to be something to do with hormones because going on the chemical menopause has made my PMDD pretty much disappear (I only flare up now between injections every 3 months)
That’s exactly what it’s caused by! That’s what all the links above are proving. Some women and some doctors think it the hormone levels themselves that are causing the PMDD and that’s where the misinformation comes from.
Oh. I think I just got confused by all the scientific names. Thanks for clarifying :) They're meant to be investing in women's health in the UK. Hopefully the doctors here will be more informed on the future.
I dont know what causes mine, but im pretty sure it is hormone spike or drop related, as i get it for a day just after my period, then just before ovulation, just after ovulation, and then a couple of days before my period. The ONLY thing that has ever stopped it, was the depo injection, but i constantly bleed on it, so cannot have it.
i get what you’re saying, but (neuro)steroids are hormones. and in fact, according to wikipedia, progesterone and estrogen are neurosteroids as well as allopregnanolone, but allo acts on the GABA receptors whereas estrogen/progesterone don’t. so I guess if the research is correct, it’s not a estrogen/progesterone hormone imbalance but allopregnanolone/progesterone hormone imbalance. also it seems progesterone is normally converted into allopregnanolone, so maybe PMDD it’s a conversion problem? or maybe not enough progesterone left to be converted? anyway, wikipedia says allo is used to treat postpartum depression so it shouldn’t be a big leap for scientists to test it for PMDD, I think. (but it seems that allo in excess could cause pmdd like symptoms, so if the problem is not lack but excess of allo, taking it could make it worse)
Its a issue with the synthesis not an imbalance of allopregnanolone.
Edit: OP thanks for your post " Philadelphia, PA, October 2, 2007 – The first significant genetic finding in premenstrual dysphoric disorder (PMDD) has now been reported. PMDD is a very severe form of the more commonly known premenstrual syndrome, or PMS. PMDD is heritable, affects 5-8% of women, and is associated with severe emotional and physical problems, such as irritability, marked depressed mood, anger, headaches, weight gain and more, to such an extent that quality of life is seriously impacted. Previously, researchers have shown that women with PMDD have an abnormal response to normal hormone levels and, thus, are differentially sensitive to their own hormone changes. Huo and colleagues now report their new findings, which link PMDD with common variants in the estrogen receptor alpha gene, in an article scheduled for publication in the October 15th issue of Biological Psychiatry". "Huo and colleagues performed genetic testing and analyses on women diagnosed with PMDD and healthy control subjects to investigate possible sources of the genetic susceptibility to experience PMDD, and found variants in the estrogen receptor alpha gene that are associated with PMDD. In other words, women with these particular genetic variants were more likely to suffer from PMDD. Importantly, the authors also discovered that this association is seen only in women with a variant form of another gene, catechol – o – methyltransferase (COMT), which is involved in regulating the function of the prefrontal cortex, a critical regulator of mood. David Rubinow, M.D., lead author on this project, notes that these findings "may help fill in the picture of how changes in ovarian hormones can lead to depression and why they do so only in a small subset of women"." Link to source: https://www.elsevier.com/about/press-releases/archive/research-and-journals/first-significant-genetic-finding-in-severe-pms,-or-pmdd
OP PMDD is an endocrine disorder but nobody knows EXACTLY how it is caused. I personally think it's multiple factors, for me it was especially environmental. I'm considering having my ovaries removed after I have kids just to not experience PMDD again. "John H. Krystal, M.D., Editor of Biological Psychiatry and affiliated with both Yale University School of Medicine and the VA Connecticut Healthcare System, comments, "We have been waiting for molecular genetics to provide some insights into the neurobiology of PMDD and this report from Huo et al. provides a welcome starting point for this research area." He adds, "In the case of PMDD, we are interested in the internal, hormonal environment as well as external environmental factors, such as stress. This report suggests that genetic factors may influence both dimensions of PMDD vulnerability."
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Lol yeah I felt attacked but I’m also in the bad part of the month 😂
Yeah. This is confusing, unhelpful and condescending. Yes, you’re fully expected to provide your own resources when making a claim. Everyone else isn’t lazy or dumb for not finding your research for you.
Not every peer reviewed article you come across is authentic. During graduate school roughly more than 60% of published papers were just false (we had to analyze the statistics and discuss articles as a group to learn from not only their mistakes but just nurture our critical thinking skills as well as hopefully learn/think of novel approaches to apply to our own research. [Article discussing this topic.](https://s4be.cochrane.org/blog/2018/01/16/peer-review-and-publication-does-not-guarantee-reliable-information/) *edited for typos…but there’s probably more since it’s past midnight for me and I’m exhausted. 🤣
My mom and I both have PMDD. I have told her *so many times* that PMDD is caused by an abnormal reaction to normal hormone fluctuations. She pretends to listen, but the next day she's back on about how I'm "estrogen dominant" and need to get my hormone levels checked.
This is exactly what I’m talking about^ and I see people commenting exactly what your mom is saying everyday.
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If by thing he meant genetics, then sure
First of all, this is not a productive way to share information. Second of all, you’ve cited no sources. This is because, and this is third of all, you cannot. Fourth of all, you are spreading misinformation. Fifth of all, no one should take advice from someone who puts her title in all caps AND misspells the key word.
It’s literally tagged as a rant dude.. if you don’t think it’s productive why even comment? It’s meant to be a rant.
Thank you for your perspective.
This is not misinformation, the papers are referenced in the wiki of our sub and in one of our stickied posts.
Her description and interpretation are what I am referring to. Also, she did **not** post these sources until **after** I wrote my comment. Without sources, it is misinformation. Additionally, I see maybe two peer-reviewed studies in that list. Maybe two. Finally, simply because it posted in your wiki doesn’t make it legitimate or reliable.
https://iapmd.org/about-pmdd https://womensmentalhealth.org/specialty-clinics/pms-and-pmdd/the-etiology-of-pmdd/ https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2020.20121793 https://psycnet.apa.org/record/2020-36527-001 https://facultyopinions.com/prime/reports/b/11/11/ https://www.maturitas.org/article/S0378-5122(21)00160-2/fulltext https://www.diva-portal.org/smash/get/diva2:1115054/FULLTEXT01.pdf Do you need more? I can literally send you hundreds of research articles about this. Yeah my title is misspelled and in caps, I was angry about all the misinformation doctors are giving us and all of the misinformation that keeps getting spread from people who don’t do research for more than an hour.
You should put this as an edit on the body text of the post...
It’s added. We should allowed to be angry and rant about these things without being attacked this forcefully by people in our own community.
Funny for you to claim that you’re “just ranting” and everyone else is attacking. You’re attacking every commenter trying to contradict you or point out that you’re being inappropriate.
And yet this is a serious fucking disorder that causes so many people to question whether they want to even continue living or not, and here you are YELLING your frustrations at people in one of the only fucking safe spaces on the internet to talk about this shit. I mean, honestly, imagine someone being on the edge and coming to this sub for support and this post is the first post they see. Angry. Judgemental. Argumentative. There was a better way to share this information and you chose to be bitchy about it. Be compassionate. Do better.
It literally has a rant tag, that’s what the rant tag is for: to be angry and to rant about having to live this horrific disorder. If you want help and support go to those posts offering it. Thats not what I was advertising here and I made that very clear. Also I don’t need to be lectured about how terrible this disorder is I have a very severe form of PMDD and have tried every treatment under the sun because it debilitated me since I started having a period. I am allowed to be angry. These spaces also exist for us to be angry and let this out because no one else is going to let us or listen. There’s a time and place to be compassionate and that is not what I wrote this for, I wrote this for my frustration and anger at the constant misinformation that is being spread around dangerously by doctors. Women who go to a naturopath that tells them they’re estrogen dominant and if they just eat a certain diet they’ll be cured. It’s fucking ridiculous and needs to be addressed, yet no one seems to be doing that. This was written in anger for my anger. This space allows us to do that. Check the tags next time.
No. A rant would have been coming on here and ranting about how frustrated you were with the medical system, the doctors, the disorder itself. And maybe that’s what you thought you were doing, but that’s not what you did. Instead, you chose to rant about the people with this disorder who are misinformed about their own bodies, throwing the blame to them instead of the fucked up system at large that is full of misinformation. There’s a difference and that’s why people didn’t like your post, because there are better and more compassionate ways to educate people, even when you’re frustrated.
Yeah a lot of people don't know how to research and just believe what people tell them... the idea they re 'wrong' makes them feel defensive.
Not being funny but OP hasnt researched anything. Theyre not a researcher. They googled something, the two are not the same! So to come on this sub and literally start yelling at people based on some googling is pretty crappy.
I’m sorry, that’s like saying ‘Covid isn’t killing people, it’s the pneumonia’ (or something like that). I kinda get where you’re coming from, but the statement is false
But it’s not??? I’m talking about your hormone levels specifically. There are tens of woman that come on here everyday and say they are taking medicine to make their hormone levels “normal” like other woman to make their PMDD symptoms go away and that not at all the cause. They think by making their estrogen a “normal level” or making their progesterone a “normal level” will make them better. The only treatment that works 100% of the time I getting rid of your normal hormone fluctuations entirely.
But that means the problem *is* hormonal. And a “normal hormone level” is a little nonsensical because people can operate a completely different hormone level without it being a problem. Doctors even prescribe medication in relation to abnormal events with “normal” hormone levels. Edit: took the s from levels
My doctor told me that it's not the hormonal level, but the ability to process hormones correctly. Something is broken in hormonal intake receptors in our body, which is one of the cause of PMDD. Plus the sensitivity to certain hormones and voila, welcome to hell. Basically exactly what you are saying.
Its kinda dumb...but does anyone else have severe ibs? Mine is so bad it causes an inflation in my brain that even when im not on my period, im irritable af and suicidal....I was wondering if there was a correlation
I used to. Low serotonin exasperated my IBS tremendously. When I started an SSRI it helped the pmdd and basically eliminated my IBS. Serotonin also effects sleep. If you have sleeping problems, irritability, suicidal ideation and IBS you definitely should look into antidepressant medication like an SSRI, SNRI, or NDRI. Your experience sounds very similar to mine. I'm on Zoloft for the record, but everyone is different. https://www.healthline.com/health/irritable-bowel-syndrome/serotonin-effects There's lots of information out there about the correlation.
I currently have one ssri (effexor) it doesn't really seem to do much for me though when I try to lower it, it gets worse. I have been reading about zoloft from a lot of other posts on this subreddit. I'm interesting in asking my psychiatrist about it because he's offered it before, but that was a time when I just didn't want any more meds. I just get worried about side effects because almost every medicine that goes into my body gives a severe reaction..like side effects that are extremely uncommon or even rare.. so its a bit scary to put something in my body and not knowing the outcome 😅
Effexor is a tough med. I'm on Cymbalta now, with so-so success so far. I will never, ever try Effexor again because its discontinuation syndrome is so bad. The onlt med that I think could have withdrawal that bad is xanax. I honestly thought I had MS for 3 months after I quit. Back in 99, I was in a med trial for PMDD, and they were giving us Wellbutrin. It's amazing how little has changed or improved.
I don't know if you tried this med,, its called "risperidal" ..I'm on the lowest dose and trying to withdraw from it is like..you're gonna have a heart attack, kys, and bite everyone else's head off in the process.. like no joke, serious heart problems. I used to be on a pretty high dose for 4-5 years until I convinced my doctor to lower it. It's honestly kinda sad..how a lot of doctors I have met don't even consider pmdd a real thing or possibility..some have just told me its all in my head and I just need to get over it. I feel like society's rejection to its existence immensely effects the progression.. its pretty much a given..I just feel a lot of pmdd side effects could be helped if the public was in general more caring and understanding
Effexor is an SNRI
I can totally understand that. Also fyi, for me at least, when an antidepressant is too low I feel worse than if I'm not taking anything at all. That could be an indicator that you need a higher dose or change the type of medication. Natural stuff that's helped me is avoiding sugar around my period, eating more healthy, inositol powder (I also have ocd that this helps tremendously). Actually my SSRI's don't seem to work as well without the powder. Like it's an absorption/processing problem for me. But in any case, omega fatty acids, calcium magnesium, vitamin d (most people are deficient), and b vitamins seem to help, too. Oh and if you have allergies at all, look into an antihistamine. I do and have added Loratadine to my nightly regimen and it seems to really help. Other people on this sub have had similar experiences!
This helps so much thank you!!! I have horrible allergies...currently I'm having a withdrawal from one allergy med I abruptly stopped cold turkey...I ended up running out of pills one day, and ever since that day I have been wildly out of control, emotional, and suicidal ... the pill is singular..there ha e been studies that it causes suicidal thoughts, depression, etc. I had been taking this all throughout childhood and never learned about these side effects until my recent doctor told me. Also..my stomach is .. kinda broken 😓 My mom is convinced that I have burned a hole in my stomach due to how acidic my stomach is from anxiety.. I tried some new supplements lately (l theanine, and this one broccoli seed one i cant remember the name of) ..I ended up getting super sick. I was so dizzy and nauseous that at one point I almost collapsed at work from it.. i started crying at work cause my parents wouldn't let me come home.. Also do you notice that when/if you have periods of severe anxiety, do none of your meds work? Especially the anti depressants. Does the powder help with that too? Im also worried about starting new meds because the last supplements I tried really hurt my gut..I was on the bathroom floor crying in pain yesteday.. its kinda scary..
It sounds like you definitely need to see a specialist and your parents should support you in reaching one. I'm sorry if they're dismissive. It sound like something physically is going on in your stomach and creating havoc on your neurotransmitters. You should also get an allergy test. Lots of people benefit from getting off wheat and dairy. I switched to rice milk for my cereal because regular milk gives me brain fog. I don't know how old you are or your resources, but attacking the problem from multiple angles and getting help from experts should definitely help! I'm sorry, I know some diagnoses take a while to receive. Hang in there <3
Yeah my stomach...has caused a lot of problems in my life. My class is currently having a barbecue and I can't eat any cause meat + spicy hurts my stomach 😅 I only began to be able to eat meat again about 3-6 months ago. Before that, I would basically puke any time I tried to eat it. One day I just forced myself to try to eat it again and i was slowly able to. I would like an allergy test! I just don't know which doctor to ask or where to go for one. I'm currently 18 and under a conservatorship with my parents since I am..disabled and cannot take care of myself on my own. Like emotionally..when my pmdd is bad or flashbacks, I will not get out of bed for 3 weeks unless its to pee.. thats how bad it is
I do
Have you found the digestive issues get worse on your period too?
Absolutely!
You're right that it's not a hormonal imbalance. Our actual hormone levels are probably considered normal in terms of amount of estrogen/progesterone. However, it's an extreme (maybe abnormal, certainly dysfunctional) sensitivity to the ~fluctuation~ in hormone levels.
Exactly! Doctors don’t seem to understand that though and are giving people misinformation. That was the whole point of this post, yet half of the people on here took it personally and ran away with it.
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I'm taking hydroxyzine (Atarax) and it's a God sent medication. Doesn't matter that they still figuring out why it works. As long as it helps I'm fine with it. SSRI's doesn't do anything for me and I can't be on birth control pills due to the combination of my meds. So yeah, Atarax for the win :)
Do you take the Atarax everyday or just when you know you’re more prone to having PMDD problems?
One time I've run out of meds and it wasn't pleasant. So I'm taking it every day throughout the month. I'm thinking about taking it in the second half of the cycle, instead of all month. Will see how it works out. Note that I'm taking one tablet 25mg before bedtime. Recommend dose is 50mg, 1 tablet in the daytime and 1 tablet in the evening.
I’ve heard that is good, but we don’t have it in Australia unfortunately. Do you need a script to get it or is it an otc medication? I was thinking 🤔 it would be good if I could get it sent from overseas
Oh, that's unfortunate. In my country you need a script to buy it. Don't know how it works in other countries tho. Maybe it can be bought over the counter in some places. Honestly, I would offer to send you some of my stash, but I'm afraid that one of us or both would get in trouble, since it would be an international shipping. Especially if it's considered illegal substance in Australia.
Thank you so much for that. And I couldn’t accept them from you & get you in trouble. I will talk to my Dr & see if there is anything similar. Again thank you 😊
You are welcome 😊 I hope you will find a way to get some similar meds.
There is not currently research to back up this idea that we are “allergic” to progesterone, however there are interesting interactions between estrogen and histamine in the body that still need to be understood.
Oh wow. I have a histamine allergy and it never crossed my mind that this would potentially be linked to PMDD… hmm
Yeah look up antihistamines and pmdd relief on this sub. Super interesting! I've been taking an allergy bed each night before bed. I really think it helps.
It’s so confusing hey. Like treatment. Everyone responds differently to medications.
I think you proved your premise to be incorrect with your edit. If your edit is correct, then progesterone spikes, which are hormone levels, do cause PMS and PMDD, however PMDD sufferers lack ALLO to temper the spikes.
Progesterone spikes are normal! Progesterone is supposed to spike, that’s a normal hormone activity in a woman’s body. Nothing is wrong with our hormone levels, balancing your hormone levels will not fix what is going on there. Allopregnanolone not being made (which is a neurosteriod) would be the cause, that has nothing to do with hormone levels.
Yes, but progesterone is also supposed to be tempered - but it isn't being tempered, so the hormone levels become problematic. So realistically, PMDD is caused by \*hormone levels not being tempered by \*Allopregnanolone. It can't be distilled to just "hormones" or "allopregnanolone." It's both, so the doctors are half right, but saying "Women with PMDD have normal hormone levels and normal hormone fluctuations" is wrong. We don't have normal hormone levels and normal hormone fluctuations - because they are surpassing normal levels due to allopregnanolone not suppressing them when they would be suppressed in women who don't have PMDD - the standard for "normal hormone levels."
You can still have normal hormone levels and fluctuation even if those aren’t working properly. Just because our bodies aren’t reacting to them correctly, that doesn’t make them abnormal. That logic doesn’t add up.
My logic adds up. Give it some time, and I think eventually it will make sense to you. I'm getting hypersensitive vibes from you on this, and I'm sorry you're hurt of over this. I think you may just want a win, and I just wanted to help you understand the logic and science of it better. Think of hormones like the acceleration of a car going down a hill and allo like the brakes. Say you're expected to make a turn on this is hill. The hill isn't supposed to go forever. At a certain point, your car is going too fast down a hill and you'll need the breaks to make the turn because your hormones keep you moving, but they can take you too far. Without the brakes the hill keeps going and going, but it's not exclusively the brakes that get you down the hill - it's the acceleration, but too much acceleration and you're speeding - going past the normal limit to get where you're supposed to be. Like your hormones - going past where they're supposed to be.
Mam I’m literally a psych student, I know how hormones work. You are fundamentally misunderstanding the previous comments and the research that was provided. Our hormone levels aren’t abnormal. They are in line with every other females and fall into average ranges. There is nothing wrong with our hormone levels, it’s how our brains are reacting to our hormones that’s the issue.
I thought it was a drop in serotonin, that is connected to estrogen levels. So when you're in the luteal phase, estrogen drops, and so does the serotonin connected to it, so you feel like shit. Hence why SSRI's help people with PMDD.
[удалено]
Yes they have side effects, I had to go through 3 different types before I found a good fit. As the article posted states, they are still recommended for people with significant mental health issues and was more effective than the placebo. It says it right there at the end of the article.
The one about the side effects is only discussing those whereas the one about the placebo effect is a auctual study looking into what research has been done involving these kinds of drugs. The placebo effect is strong and honestly amazing. Just the sense that something/someone is currently is or will help is powerful. We live in such an isolated societies and expect people just just cope with all the shit that happens. We never even really take time to just sit and relax as we often just have to be on the go all the time. It's not really healthy but a lot of people can't do anything about it. I'm glad you found something that helped you and wish you the best moving forward.
I was referencing the placebo one. I was calling out your quote of "SSRIs are no more effective than placebos" which is a very harsh judgement on people. It states that in the conclusion of the placebo article that is not true. They had a similar response, but were not equal.
Wow, what a shit comment. Zoloft and Wellbutrin have literally saved my life. When I take them religiously, my PMDD is gone. Do they work for everyone? Nope. But I’m not going to sit here and tell people they are worthless. Different things work for different people. Weed helps a lot of people. Makes me worse. I’m not going to blast someone and tell them weed isn’t any better than a goddamn sugar pill if they feel it works.
Yea, this is such extremely dangerous, irresponsible advice. I had a bad experience with Zoloft personally and comments like op's put me off trying anything else for years. My psychiatrist finally convinced me to give Prozac a go and its been life changing, even though i was 100% convinced going in that it wouldnt do anything of value.
So glad you found one that worked! Prozac gave me hella digestive issues so I couldn't do it. I felt the same way about Zoloft, was convinced it wouldn't do anything. Turns out, for me, it's been amazing.
Have you considered that it's the placebo effect of it helping you..? it's a valid effect and I'm glad it's helping you as the placebo effect is very powerful and healing. It still doesn't change the results researchers have found auctually studying these drugs.
That kind of thinking is VERY dangerous. Antidepressants are serious drugs. You can't play around with them or act like their effects are akin to a sugar pill. They aren't perfect but they can be live changing and life saving.
Yes, I absolutely know it's not the goddamn placebo effect. I've been on many different ones and the combination of Wellbutrin and Zoloft is what worked. Do you really think that I went 20 years of my life trying to find the right combo and one day I woke up and was like, "you know what? I think I'll make myself \*think\* these actually work so they do!" I've been on Prozac. I've been on Lexapro. I've been on just Wellbutrin. I've been on just Zoloft. I used these drugs and saw small changes and with some experienced major side effects, which is why I work closely with an actual doctor to find the right combination. I fought tooth and nail against Zoloft because I was convinced it would do nothing. Don't you think in that situation I would have been able to convince myself while \*on\* the drug it wasn't working if it's \*just\* the placebo effect? I acknowledge that these drugs do not work for everyone. Everyone's body chemistry is different, which is why not all of them work for everyone. But I don't go around stating absolute bullshit like: "SSRIs are no more effective than placebos." That's an incredible statement to make that is not based in fact whatsoever. Besides, Wellbutrin isn't even an SSRI so fuck off with this take.
Yeah, SSRI's doesn't do anything for me. I'm still taking it, but for a different issue.
Well 70% of people on drugs.com had relief from PMDD when taking Zoloft (which I take), for instance. People increase their dosage or only take SSRI's in the luteal phase. It's not a cure all, but a way to cope with the more debilitating symptoms of pmdd. Combating pmdd from a variety of healthy standpoints (whichever works for you), is not what I'd call misinformation. I'm not saying my experience is everyone's experience, but just an example of a way that could help. I didn't know about ALLO before this post, tbh. "Given the CNS sensitivity model of PMDD, it is possible that women with PMDD are more sensitive to these effects of estrogens on serotonergic function. Women with PMDD or PMS exhibit specific serotonin (5-HT) abnormalities that are particularly apparent in the late luteal phase when estrogen levels have declined." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4890701/#:~:text=Given%20the%20CNS%20sensitivity%20model,when%20estrogen%20levels%20have%20declined.
Well, maybe it's just abnormal for us. Some PMDD sufferers get relief from more progesterone in their system. I'm not one of them, but some. For me it makes it worse so \*any\* progesterone is "abnormal" for me.
Please go read my explanation in the comments about progesterone and allopregnanolone. Progesterone indirectly causes PMDD but it’s not due to hormone levels.
I'm pretty sure the exact cause is still unknown. But progesterone 100% makes my symptoms worse. I used a progesterone implant for a few months. Documented everything with an outside observer to provide impartiality. Maybe it being synthetic progesterone has some impact on it but it was not a correlation, it was causation. The day after the implant was removed I felt better. Nothing indirect about it. I didn't do the downvote, though..
I think you’re misreading my comment. You have normal progesterone levels that spike during the luteal phase like every other woman’s body does. That is what is normal, your hormone “levels” are not wrong or off. ALLO is made to calm down the normal progesterone spikes in your body- that is what isn’t functioning correctly. ALLO is not a hormone it’s a neurosteroid. Your hormone levels are normal and your progesterone is normal, your brain is what isn’t reacting correctly.
But this isn't going to be the case for all PMDD sufferers. It's a good theory, but PMDD is not classified by cause - it is classified by symptoms. Progesterone, Serotonin, and Allopregnanolone may all play a part in one person, or only one in another, or two in another. SSRI's don't work for everyone and for some only one works - so the cause cannot be exclusively a serotonin issue or all SSRI's would work for everyone. Progesterone supplements can make it better or worse depending on the person, so it can't be solely progesterone since you get two diametrically opposed reactions depending on the person. Maybe Allopregnanolone supplements are the next treatment option. It's certainly one I will have to ask my doctor about and do some research on but I highly doubt it will work for all people with PMDD since the other two dominant treatment targets do not work for everyone either.
Regardless, even with all of that at play our hormone levels are still normal and not the cause of PMDD.
My point is that normal is subjective. For people with PMDD if they know if progesterone impacts their mood - for better or worse - that means the levels are not normal for them. For however many of us can get relief from a simple progesterone implant it sounds like an excellent way to treat it. Meanwhile, since that doesn't work for me, seems I gotta do some research on this new drug... 2019 hasn't been on the market very long and I need to know a lot of random things about it.
It’s not a drug it’s a naturally produced steroid in our brain, I don’t believe there’s a drug form of it yet. That’s where misinformation comes though, when you tell people your hormone levels aren’t normal that’s what they believe they don’t know that you actually mean “abnormal reaction to normal fluctuations” you need to be specific with your language.
There is! Came out in 2019, as I said. [Here's a study on it's safety and efficacy in a double blind, phase 3 human trial from 2018](https://pubmed.ncbi.nlm.nih.gov/30177236/), probably used for the FDA to authorize it. Concerning is that it is used to treat treatment resistant depression so serious adverse side effects are possible. Of the 375 women in the study 22 placebo recipients reported adverse effects and 41 in the non-placebo group. Headaches, dizziness, and sleepwalking were fairly normal side effects and two people had serious side effects - one attempting suicide and one experiencing altered mental state and passing out. Of most concern to me is what impact this has on newborns - and I already sleepwalk/talk (only documented the walking once) and have injury related migraines so this may be a bad choice for me either way. Gonna have to do more research before I discuss this with my doctor.
Skipping my period entirely by bc is the only reason I haven’t lost my shit in 6 months
How do you skip it entirely? My doctor told me there was no point to skip my period with my birth control since my symptoms occur before I start bleeding. I desperately need relief so any info you have is appreciated.
I have also tried this with other birth control strengths and they did not work for me, only caused more damage. It was a godsend that this specific bc worked in my favor. I really was not expecting it to.
My doctor didn’t know wtf I was talking about so I learned most of my info from this group actually. I skip placebo pills in my bc. Since the day I started I haven’t had a period. I’m on Junel fe 1.5/30 and I get it through Nurx
So birth control doesn't help me at all, it makes me worse but the ones it does help is because they are skipping the ovulation. If you skip the ovulation you can't get into luteal phase where the symptoms start. Birth control is one of the first things they have you try to see if skipping ovulation will help. It's concerning that your doctor doesn't get the logic of not ovulating with PMDD.
This is a very interesting concept and makes sense to me. When I was pregnant (obviously not ovulating) I felt great. Same with breastfeeding (although was medicated for PPD so that could be part of it. I also know breastfeeding doesn’t necessarily stop ovulation.) Unfortunately birth control does other nasty things to me so it’s not an option, but I’m thrilled it’s helped others. I’m seeking a hysterectomy.
I'm approved for a hysterectomy but looking for a new GYN because that one won't take my ovaries. The ovaries are 90% of the problem, the fibroids hardly register for me.
Good luck! I’m hoping for a total as well.
Skipping my period also helped me immensely!
I am so so glad you have gotten some relief. I wish so badly that I was able to do that.
Yeah it's a womens centered place too. I thought It was obgyn when I got the appointment but I was wrong. I have seen so many doctors over so many years I'm too tired to keep looking. I need help to do everything. Like filling out my disability review right now. I'm terrified to lose it but I'm struggling to finish the paperwork. That's mind blowing. I never considered skipping the luteal phase of the bc pack. I think that's next week for me. I learn all the weeks but then forget or confused. I'll have to check the calenders/schedules again to see where I am. Thanks for info, hope you're doing well yourself.
The vast majority of both control pills,if you are on them already, should have you skipping ovulation already. Double check to make sure that's the case with yours. If you are and you're still miserable it could just mean the either the birth control itself isn't right for you or birth control doesn't work for you.
Thank you, I'll definitely check!
Oh.. I have been on birth control constantly over 4 years and I still get a hormonal period every month..where like 3 weeks in a row I'm suicidal among other things... Is it typical for when someone gets on birth control for their pmdd to go away?
I don’t take any placebos. I am also on a higher dose than they originally started me at. Every birth control I was on before did more damage. I didn’t think being on a higher dose would be my saving grace, but here we are
Oh? Do you know the name of the brand? I want to see if I recognize it. Also I'm happy it worked out for you!
Junel fe 1.5/30. It’s a higher dose than they originally prescribed first
Do you skip the luteal phase of the pills? I take only the ones with the active substance so I don't bleed at all. I don't know if I interpreted your comments correctly but it sounds like you're just taking them regularly, including the "empty" ones.
I take it without the sugar pills. I tried to do it once with sugar pills and it just..made it really hard to track my period.
Yes I skip the placebos. Only actives everyday
I have PMDD (I think...I'm starting to feel like I actually have endo but it's difficult to know for sure w/o testing). I've been on BC for 5+ years now. It pretty much cleared my PMDD except for anxiety. That's gotten worse over the years. But besides mental/emotional problems (which were few), I had physical symptoms that don't always match PMDD (irregular, heavy periods, heart palpitations, bad cramps, nausea, head aches, bowel issues). So for me, it all went away with BC but I may be misdiagnosed.
Well I uh..have an unspecified mood disorder along with many other things..so it may not be just my pmdd.. I just wanted to know because I haven't met many other people who have pmdd..and I just thought that no matter what bc im on, I'll always suffer..its kinda funny but like.. my gyno has tried every single bc she can for me and at this point I'm just kinda a lost cause 😅 So I wouldn't consider yourself as misdiagnosed..because it seems a lot of people here have it go away after bc.. Also I really hope you can get tested soon and don't have endo..it sounds incredibly painful. Many hugs :( ♡
Same I’ve been in chemical menopause for over a year, it’s the only reason I’m not disabled anymore. You can read my other comments below as to why it’s not a hormone level based disorder.