Janey

All Dysautonomia Symptoms Worse During Menstruation

21 posts in this topic

I haven't noticed this before but I've been keeping a diary of my crashes recently and I had a big one today. I looked at the diary, and every crash seems to start on the 20th-23rd of each month, EXACTLY when I start to get PMS. And I'm not confusing POTS with PMS symptoms, they are very different, but I haven't been able to get up all day, food's not going down, I'm dizzy, my chest is heavy, I have a lump in my throat, I'm sweating, bloated etc.

Does anybody else get this? And does anybody have an idea why menstruation would make POTS worse? Is it to do with hormones/blood flow?

I'm so pleased at this revelation because if it's true, it means I can PLAN my days so much better and not book things from 21st-27th of each month!

Janey

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I'm always worse at PMS time, too. Digestive and bladder discomfort seem particularly worse.

Why, I do not know. I'd guess hormones, but it would just be a guess.

Amy

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I am the same way... much much worse the week before my period starts. That is also the time when I get severe, I mean the worst pain you can imagine in both of my legs...multiple doctors have told me it is just due to the hormone levels and that when my levels are like that something with the blood flow upseting the EDS which is why my legs get so bad. Sorry that was not a very technical answer but I think its pretty common that woman have bad epsiodes and pots flare ups around that time of the month.

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YES YES YES it happens every month sometimes right before, sometimes during, sometimes after, makes me worse and nonfunctional every single time! I thought something was wrong hormonal I even wanted to get a hysterectomy until I found out this is normal with POTS. Doc said increase meds during that time.

Lissy

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I don't think what you're feeling is unusual at all! I think there are bunch of people on here who take BCP's just to suppress how many periods they get so that they don't have to deal with it. I can't take BCPs because of clotting issues but a hematologist recently gave the ok for a very low dose patch of estrogen for a few days around my period - interested/nervous to see how that goes.

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I really want to take back-to-back contraceptive pills, but I just get my period whether or not I take them. My body just takes over!

So glad to hear you all get the same. It's good news for me, because I used to feel out of control of my crashes. :lol:

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I was told that the blood loss reduces your blood volume which is what tends to make POTS symptoms worse.

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I was told that the blood loss reduces your blood volume which is what tends to make POTS symptoms worse.

Although I can see how this line of thinking could hold water - especially if you bleed A LOT - I think most of the issues are due to hormonal changes. I myself have had a partial hysterectomy so even though I no longer have a uterus (and therefore do not bleed) I still have my ovaries - and therefore still cycle. Which means I go through all hte same stuff other women do - PMS, ups and downs of hormones, etc... and that's what seems to affect my dys.

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I completely understand this! I just noticed this weird vertigo like dizziness coming with my cycle this month. I had that in the very beginning but it went away so I was surprised to see it back again! I only have my ovaries but my body still goes through all the motions that's for sure! I am already dreading a girlfriends outing next month due to it being that time of the month! What we go through as women! :-)

KC

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vanderbilt are currently studying whether estrogen has an impact on this apparent cycle in many patients. Secondly one form of POTs is caused by impaired catabolism of angiotensin II - which fluctuates and is highest before menstruation.

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I'll be seeing my GYN on wednesday about meds to cease my periods. I notice a steady increase in POTS symptoms from ovulation until day 2 or my cycle, when I suddenly improve.

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I don't know why, but when I've ended up in the ER due to severe flare, notoriously, I will be on the 2nd day of my period. Hmmm, must be some connection.

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Yup, the same thing happens to me. My dizziness gets so much worse around my period.

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I hadn't made the connection of POTS and menstration and my symptoms getting worse, but after reading the post, I realize that is what is happening. Even if I was feeling better, I almost always end up in the bed for 4-5 days. I talked to my doctor about it and he told me to just stay on my pills and not come off. The only problem with this is that my insurance won't pay for the extra packs of pills.

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vanderbilt are currently studying whether estrogen has an impact on this apparent cycle in many patients. Secondly one form of POTs is caused by impaired catabolism of angiotensin II - which fluctuates and is highest before menstruation.

I'm intrested in this do you know if that is part of autonomic tests they usually perform? When I had my severe change of health it happend my 1st cycle after having my child and got worse each cycle untill almost all my days were affected. I was so positive it was hormonal I keep going back to the OB doc telling her something was wrong with my estrogen or something and she ran every test she had available with no luck.

I also can't take BC because of clotting issues. I don't know what to do really I have been so sick for this past week and just started today and it affects me so badly and I don't even feel alive!!! all I wanna do is lay down and I have no appetite or thirst or anything. I lose like 5lbs every month because it makes me so ill :D

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I am actually worse right after my period as the hormones are climbing and better the week before my period. I wonder why? Then get worse again pretty much the day I get my period. None of it makes sense. :)

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Another option worth considering is having having depo shots or an implant. It is no guarantee, but in lots of people their periods stop and this can bring symptom relief.

I had 5 years of depo shots and it solved the problem. Then I wasn't allowed to continue due to concerns about osteoporosis. So I swapped to an implant and got lots of bleeding, but still symptom relief. Not such a good solution, but still worthwhile. Admittedly, I am also trying to relieve menstrual migraines in this juggling act.

There are other threads to search on if anyone is interested in the longer term (but reversible) contraception.

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I am actually worse right after my period as the hormones are climbing and better the week before my period. I wonder why? Then get worse again pretty much the day I get my period. None of it makes sense. :)

Hey Naomi. Delighted to see you say this as I always thought I was the only one this happened too. I always feel better the week before my period and for the first day of it and then I plummet and hit bottom for 2 weeks after this. From day four to day 16-17 are always the worst days of my cycle. I've always wondered what it is that makes me feel better for those pre period days. If I could somehow simulate that same hormonal response I have the week before my period I'd keep it going all month round.

The only explanation that makes some sense to me is that maybe as pre period hormones increase water retention in the body perhaps the water retention is increasing our blood volume and making us feel a bit better. I've also read that progesterone, which is the dominant hormone during this phase, increase blood pressure. I think I've read here before too that oestrogen is a vasodilator which might explain why we feel worse for the first days of our cycle as that hormone begins to built from then. I could be wrong about all that of course. I'm no biologist! Whatever it is though I'd love to know.

Glad I'm not wholey alone with feeling that way.

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Aurora, interesting-- I am not alone. Yes, I was thinking the same thing... that maybe the water retention was helping. I just wonder then why does Fludrocortisone have such a bad effect on me and salt tablets do nothing at all? It's the same premise so why doesn't it work.

Someone above wrote this:

"Secondly one form of POTs is caused by impaired catabolism of angiotensin II - which fluctuates and is highest before menstruation."

Isn't angiotensin a vasoconstrictor? If this hormone is at its highest before menstruation maybe its helping us? Is it available in pill form!?

Naomi

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Aurora, interesting-- I am not alone. Yes, I was thinking the same thing... that maybe the water retention was helping. I just wonder then why does Fludrocortisone have such a bad effect on me and salt tablets do nothing at all? It's the same premise so why doesn't it work.

Someone above wrote this:

"Secondly one form of POTs is caused by impaired catabolism of angiotensin II - which fluctuates and is highest before menstruation."

Isn't angiotensin a vasoconstrictor? If this hormone is at its highest before menstruation maybe its helping us? Is it available in pill form!?

Naomi

I found Florineff a bit of a disaster too and while salt tablets make me feel worse I find including alot more salt in what I'm eating makes me feel better.I'd love to know what exactly causes the period boost. It makes such a difference to me in terms of stamina and symptoms that if I am well enough that is the week that I'll invite a friend up or plan to do something small extra. I wish we could find out what it was. Maybe now that there's two of us on the case we will!

Have you ever tried contraceptive pills? I've been very tempted to try them and see if they'd make a difference but I'm aftaid of the side effect backlash.

"Secondly one form of POTs is caused by impaired catabolism of angiotensin II - which fluctuates and is highest before menstruation."

I'd love to know if this is a part of puzzle. No doubt it is.So many things seem to influence blood pressure and I'm starting to believe that science neither knows nor care a great deal about what they are. If you ever find an answer in the future please PM me and I'll do likewise.

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Have you ever tried contraceptive pills? I've been very tempted to try them and see if they'd make a difference but I'm aftaid of the side effect backlash.

I haven't tried contraceptive pills because of fear of side effects too. When I was pregnant my symptoms (especially the dizziness) were ten times worse. Out of curiosity, I looked up Angiotensin in pregnancy and found that it is LOWER during that time. This could be a coincidence, but it's making wonder? Higher seems better, lower worse.

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