Mariposa: still hitting a wall 3 years drug free, reaching out

[Nypeaches89]

8 hours ago, Mariposa said:

Hi @Nypeaches89the whole thing is a bit of an awful mystery tbh. I know that hormonal issues are also tied up with unresolved trauma (this has been documented) so I believe its a big mess of hormones, ptsd, childhood trauma AND the neurological healing.

 

The good news in my mind is that there must be a way to smooth things out; the bad news so far is I don't know what to do other than keep going, as low quality of life as it is at the moment. Like you, I tried everything. Recently I added chaste berry, and while I don't know if it is helping, I have had quite a shift (again, as this healing seems to be non-linear) and the chaste berry may be helping?

 

My research says the issue is not hormone levels but how my body reacts to the shift in levels, so hormone testing, although mine was 'normal' wouldn't have helped anyway is what I've discovered. I was on meds, all kinds of meds (lithium, then later citalopram and lamictal, to name a few) pretty consistently for 15 years, from my 20s to 35 yrs.

 

So what I DO know is this absurd suicidality/depression that still dogs me relentlessly DOES seem to be PAWS, and it just turns into one big soup when my hormones flare up. 

 

I've not heard that pmdd can be 'post menstrual' because it is usually defined by symptoms in the luteal phase, anywhere from ovulation to menstruation. Could you be experiencing something else? Are you off all meds?

 

Someone gave me a monthly tracker to track symptoms. Are you doing that? If nothing else, it helps give you a pattern for what is going on...let me know if you have one or I will track the one I used down.

Yes I track my cycle on my phone. 
post menstrual is a thing! It’s way more rare, but it’s a thing, you’ll find articles about it. and of course I suffer from it as if Premenstrual wasn’t enough. I was asking about the hormones bc I did hear a horror story about a woman hitting menopause at 33 after a bad withdrawal… so yeah. Never got mine tested. 
I have chaste berry leaves, no effect here..

[Mariposa]

Yes of course I understand it’s a thing and you are suffering, I didn’t mean to imply it wasn’t real. I only mean seems like there might be another reason, if it’s in your follicular. So sorry, it’s so awful and really life altering and there’s so little information 😔. 
 

For what it’s worth, I think you have the right strategy in looking at lifestyle changes- I personally think my nervous system feels sensitive and fried from everything.  Could be early menopause for you if your cycles are shifting as you describe. I often have wondered if I’m peri menopause too but my cycles are still consistent every 28 days. 
 

for what it’s worth, this is what another member sent me to track. I used to track on my phone too but this really gave me a better picture. Also there’s some pmdd online and Facebook groups, have you looked them up? I think iampd offers support groups…

 

https://psychscenehub.com/wp-content/uploads/2020/10/Daily-Record-of-Severity-of-Problems-PMDD.pdf

 

wosh there were more answers for us. Please keep in touch as you learn more or things shift and I’ll do the same. 

[Ma205]

On 2/26/2023 at 5:58 PM, Mariposa said:

Hi @Nypeaches89the whole thing is a bit of an awful mystery tbh. I know that hormonal issues are also tied up with unresolved trauma (this has been documented) so I believe its a big mess of hormones, ptsd, childhood trauma AND the neurological healing.

 

The good news in my mind is that there must be a way to smooth things out; the bad news so far is I don't know what to do other than keep going, as low quality of life as it is at the moment. Like you, I tried everything. Recently I added chaste berry, and while I don't know if it is helping, I have had quite a shift (again, as this healing seems to be non-linear) and the chaste berry may be helping?

 

My research says the issue is not hormone levels but how my body reacts to the shift in levels, so hormone testing, although mine was 'normal' wouldn't have helped anyway is what I've discovered. I was on meds, all kinds of meds (lithium, then later citalopram and lamictal, to name a few) pretty consistently for 15 years, from my 20s to 35 yrs.

 

So what I DO know is this absurd suicidality/depression that still dogs me relentlessly DOES seem to be PAWS, and it just turns into one big soup when my hormones flare up. 

 

I've not heard that pmdd can be 'post menstrual' because it is usually defined by symptoms in the luteal phase, anywhere from ovulation to menstruation. Could you be experiencing something else? Are you off all meds?

 

Someone gave me a monthly tracker to track symptoms. Are you doing that? If nothing else, it helps give you a pattern for what is going on...let me know if you have one or I will track the one I used down.

hi, I know this post is older!! I am dealing with the same severe worsening of pmdd in w/d (previously had since 14 and why I was put on ssris). I also have severe endo and need to suppress my cycle so I am so hesitant to start birth control to try and control this. Have you tried hormones since w/d? 

[Mariposa]

Hi @Ma205 sorry you're enduring pmdd symptoms too...I haven't tried hormones since w/d. Before and during my psych drug stint I was on bc and I remember it mostly flatlining me, which had its advantages, but had more disadvantages. The fact that I ended up on psych drugs despite the bc speaks to them not doing much for me.... Since then I've done my homework on bc and steer clear, but with this pmdd you gotta do what you gotta do. 

 

Recently I am exploring options with progesterone but doing some hormone bloodwork too, to make sure that my progesterone is not spiking during luteal, which would then give me the option to supplement with bioidentical. Not my first choice by any stretch, but at this point quality of life is so poor, something's gotta give.

 

If you have endo, of course, that's a whole other ball of wax and I know there's a lot of (non-w/d) resources out there for women with that condition, have you tapped into those? Sorry I can't be of more help.

[Ma205]

1 hour ago, Mariposa said:

Hi @Ma205 sorry you're enduring pmdd symptoms too...I haven't tried hormones since w/d. Before and during my psych drug stint I was on bc and I remember it mostly flatlining me, which had its advantages, but had more disadvantages. The fact that I ended up on psych drugs despite the bc speaks to them not doing much for me.... Since then I've done my homework on bc and steer clear, but with this pmdd you gotta do what you gotta do. 

 

Recently I am exploring options with progesterone but doing some hormone bloodwork too, to make sure that my progesterone is not spiking during luteal, which would then give me the option to supplement with bioidentical. Not my first choice by any stretch, but at this point quality of life is so poor, something's gotta give.

 

If you have endo, of course, that's a whole other ball of wax and I know there's a lot of (non-w/d) resources out there for women with that condition, have you tapped into those? Sorry I can't be of more help.

Ugh I’m sorry your going through that. I hope the progesterone helps.. for me progesterone is the trigger. I was put into menopause for 3 months for my endo previous to this wd happening and I almost fully tapered off my ssri on my own I was so happy. Then I got pregnant through ivf, miscarried and Iv been effed up ever since with wd. I might just push for a hysterectomy and oopherectomy I’m over it.

[Mariposa]

Do you mean progesterone triggered your pmdd?

 

I know the feeling of over it. I went to my dr with a hysterectomy discussion but she talked me out of it once she explained that HRT would be a definite if you do that, and the risk to later health. I know some women have good results, others not. There's no one answer I guess....just grateful if we can all keep talking about it and maybe that'll help get some more attention to the issue slowly but surely.

[Ma205]

Yes, progesterone and my luteal phase triggers it or progesterone in birth control or any rise or fall of hormones. 
 

My surgeon declined a hysterectomy, although I can’t really handle hormones to manage my endo which has already ravaged my entire insides. And I no longer can take ssris to handle my pmdd. I’d rather have it all out and deal with brittle bones and a heart attack in 30 years than deal with this any longer! 

[Mariposa]

oh thank you @Ma205 for your reply. Yes, same here, the fluctuations are intolerable for me and progesterone may be the culprit too. I hear the desperation, the feeling of dead end. It's a lot to handle and deal with. Fwiw, good to connect with others who are in it, so thanks for sharing. 

[Ma205]

On 8/16/2023 at 5:54 PM, Mariposa said:

Hi @Ma205 sorry you're enduring pmdd symptoms too...I haven't tried hormones since w/d. Before and during my psych drug stint I was on bc and I remember it mostly flatlining me, which had its advantages, but had more disadvantages. The fact that I ended up on psych drugs despite the bc speaks to them not doing much for me.... Since then I've done my homework on bc and steer clear, but with this pmdd you gotta do what you gotta do. 

 

Recently I am exploring options with progesterone but doing some hormone bloodwork too, to make sure that my progesterone is not spiking during luteal, which would then give me the option to supplement with bioidentical. Not my first choice by any stretch, but at this point quality of life is so poor, something's gotta give.

 

If you have endo, of course, that's a whole other ball of wax and I know there's a lot of (non-w/d) resources out there for women with that condition, have you tapped into those? Sorry I can't be of more help.

hey how are you doing? Did you get any testing or start the progesterone? My period this month was BRUTAL. Severe akathisia and SI. I should have started the pill today but I’m so nervous  it seems whenever my hormones drop I get akathisia and all my withdrawal symptoms are 10x worse