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concernedhubby

Pots / Dysautonomia And Hormone Levels

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Found this fascinating...

"Resting sympathetic outflow is greater during the luteal phase – when both oestrogens and progesterone are elevated – compared with the early follicular phase of the menstrual cycle – when both oestrogens and progesterone are low (Minson et al. 2000a; Carter et al. 2009b; Fu et al. 2009). During an orthostatic challenge, total MSNA (which takes into account the area under the MSNA burst) is also greater in the mid-luteal versus early follicular phase (Carter et al. 2009b; Fu et al. 2009) (Fig. 2)."

In other words, the sympathetic (fight or flight) response that causes tachycardia, tunnel vision, digestive issues, nausea, and so on (a.k.a. dysautonomia), is increased in relation to the amount of reproductive hormones in the system. Makes sense, considering a majority of POTs patients are women between 15 and 50.

This was taken from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3530109/

Nina Stachenfeld's research is focused on how hormones impact orthostatic tolerance. Very insightful stuff for those who believe they have POTs due to hormonal imbalances. I hope the POTs doctors are paying attention to her work.

The good news is that estrogen, a potent vasodilator, drops after menopause. For women with chronic low blood pressure (a common trigger for adrenaline release) that could mean more normalized blood pressure and hopefully fewer instances of tachycardia.

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Interesting work. Thanks for posting. I found I am unable to use any for of hormonal birth control that has estrogen in it and I have to use hormonal BC to stop my menstrual cycle or else I am extra miserable. I have to use Depo Provera which is progesterone based. There is other information I have read which also strongly implicates estrogen in inflammatory flares, which is another problem for me.

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Thank you for posting this. I have pregnancy induced POTS and 99.9% of my symptoms are attributable to hormonal fluctuations. I love reading studies and data that point to the origins of this. I am grateful that the researcher's focus is on how sex hormones effect autonomic control of blood pressure, body fluid regulation and temperature regulation.

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My wife also has pregnancy induced POTS. It slowly subsided a couple of years after the pregnancy, leaving my wife with a few years of feeling better. Then it slowly crept back during perimenopause and has been pretty bad the last couple of years. We're hoping the complete drop off in hormones after the change will make it disappear for good.

Estrogen-based BC made my wife feel awful.

I wish there was more data on this. I'd love to see a study of women with pregnancy-induced POTS that included a post-menopause follow up. It's hard to find reports of people feeling better because people tend to write forum posts only when they feel sick. (I don't blame them; they've earned the right to forget about their suffering and move on. I just wish they'd leave a post saying "Hey, I feel better now.")

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We do occasionally have members come back to drop a line about their success stories. I can't say they had pregnancy induced POTS or not but they are nice to read.

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I believe mine started during perimenopause...age 50. It was so bad that my periods stopped abruptly! Now I am 56 and have felt some improvement. I will post more details later but I agree that hormones play a role!

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"chronic low blood pressure (a common trigger for adrenaline release)"

Could you tell me more about this, please?

The only hormones I've been on were all progestogen-only (note that progestogen, also called progestin in the US, is not at all the same as progesterone),and they made me much worse. I'm not allowed the combined pill as I get migraines and that increases my stroke risk.

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Low bp makes your body release adrenaline which in theory forces your bp up (when your body functions properly). It is part of the cycle of your body trying to maintain homeostasis.

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I had pregnancy-induced POTS. I was disabled in the last trimester (had to stop working) and I was pretty sick for about 10 months post partum (unable to work or leave the house except for dr appts). Over time I improved, but I have had a few bad flare ups where I am disabled for a day or so. But I have been quite stable for the past 3-4 yrs with only minor symptoms.

I actually believe I had POTS prior to pregnancy, but it was mild and it was never of course diagnosed. Pregnancy was a major trigger.

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Katy - it's been suggested here that when I get episodes of waking up with total amnesia, that's caused by low BP. Doctors uninterested of course. Also I get atrocious nightmares, possibly worse since going on Ivabradine, and while I do have PTSD, they never used to be this frequent. The nightmares may have something to do with adrenaline, I'm told, and can leave me breathless for the whole day. Do you have any links you can point me at?

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concerned hubby, A few more details from angelloz. I started with feeling wired and unable to sleep, head pressure, severe feeling of extreme heat ( just turning over in beds would cause this. ) Numb spots, a feeling of not getting enough air, digestion issues, extreme weight loss that I didn't want and more.

Five years later I can now sleep more, fewer heat issues, gained back a bit of weight, breathing issues come and go. I have a few new issues such as pain in my hands and more body pain overall. I had developed some numb spots on my skin, one on the side of my knee that has some feeling now.

I have hypovolemia diagnosed at the CC. Some autonomic neuropathy ( Mayo Clinic ). the constant odd off feeling I had is lessened. I also often felt very tilted and off balance, that is better as well. I still have scary episodes where I get a blood pressure changes, shaking, weak and collapse or have pre- syncope. These occurrences are less frequent. I think I had some issues when I was young but not as bad and didn't even realize that what I felt wasn't " normal. " Don't know if I will have any other improvements or changes but I keep thinking that less hormonal shifts are helping.

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@angelloz, thanks so very much for sharing your story! I'm sorry to hear that you've struggled through so much. My wife's list of symptoms is very similar to yours, so I can appreciate the internal strength it takes to fight through those symptoms every day. I'm proud of you for it!

It's very reassuring to hear that your symptoms have been improving. Every voice that says "Hey, I'm feeling better" (even just a little) gives hope to the rest of us. My wife will really appreciate that you took the time to share.

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Thanks for posting this article. It looks great! I can predict my POTS symptoms based on my cycle. I have got to study the article more to find out if it's talking about the same thing I experience. However, I think we had a poll here about this at one point, and people said that before, during and after their period was the worst. That is what I experience. The other ten days of my cycle leading up to ovulation I feel much better. I will have to go back and look at the hormones again. I would like to understand this better!

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Hmmmm......well, right now I just started shots that are supposed to mimic full menopause due to endometriosis. I will let everyone know if I start to head on the upswing. I do feel I am starting (barely, but that counts lol) to gain some forward momentum. Maybe it will get better and better!

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Just sharing another study that points to estrogen as a factor in POTs...

"The impact of 17β-oestradiol (E2) exposure on autonomic control of orthostasis in young women is unclear. We tested the hypothesis that autonomic cardiovascular regulation is more sensitive to E2 exposure in women with low orthostatic tolerance..."

"In conclusion, blunted peripheral vasoconstriction and lower stroke volume contribute to compromised orthostatic tolerance in women; this inability to vasoconstrict is further exacerbated by exposure to E2. Furthermore, E2 administration increases baroreflex-mediated heart rate responses to orthostasis in low orthostatic tolerant women, which is likely to be a compensatory mechanism for the blunted peripheral vascular resistance and lower central volume."

http://www.ncbi.nlm.nih.gov/pubmed/23401618

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could the intolerance to estrogen based BC , the swelling episodes...be angioedema type 3 which I think is estrogen dependent? It is interesting because in the past I was tested of angioedema type 1 and 2 when type 3 was a new concept. My c reactive proteins were off but not to the level required for 1 and 2. It was supposed that I had this new type 3 but there was no testing for it back then.

One of the tells was these brown spots on my skin that would come and go or move around along with all the typical symptoms. It always got worse around high hormone times. I also has endometriosis and got it ablated as well as my uterus. That was the best decision I made but it took some doing because although I already had 2 kids and a long marriage, I was considered young and had to convince the dr that I did not ever want to be pregnant again. That did cause a decrease in symptoms as these endo cells grow wild and make their own estrogen mess. Also, I did not have the pain of menstruation but I still have my ovaries so I don't need hormone replacement.

At that time I also had a terrible time with chronic hives and weird red patches and seemed to be allergic to the sun and myself. I take antihistamines daily and if I don't it will be just a few days before Im an itchy mess again.

So now, I still get non pitting swelling that is clearly worse with hormone cycles. When it breaks, then GI symptoms are terrible. Then I work on rehydration....its one big puffy POTS cycle. Adrenaline is definitely an issue. I can feel it. Its like a long rush for no apparent reason. It causes that feeling of being disconnected, weird, or doom. During this time, there is an increase in sensory awareness that is overwhelming. It is easy to become aggressive in this mode. This might be consistent with a fight or flight experience.

For me, taking supplements for adrenal support is helpful.

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My basic understanding is that yes, estrogen causes or is related to an increase in histamine. In my experience this seems to be true - when I'm in an estrogen dominant part of my cycle, I will see an increase in hives and itching, as well as sensitivity to things like foods, sometimes even my "safe" foods.

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Hi all, 

I too believe hormone imbalance is to blame for if not causing POTS making it worse.

I developed it five years ago while taking BC pills for hormone balance. 

I've noticed mine is horrible just before or during the menses. Estrogen is pure evil.

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Thanks for the information. I was wondering if hormones play a role. Currently getting my hormones tested and will be trying bio-identical hormones. 

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Hormones definitely are involved. I have the same experience as others with symptoms around my cycle. Also have myometriosis (endometriosis in the uterine wall, not out in the abdominal cavity) so I have a little extra estrogen from that I guess (based on what earlier posts said...I haven't researched). 

But I have a cytochrome P450 variation that I'm wondering if others have? I am a poor metabolizer of CYP450 enzymes 3A4/5 and 2C19...those are the ones that metabolize hormones (and oral steroids). So, it seems there could be a link between higher estrogen levels (caused by endometriosis and the CYP genetic variation) and the dysautonomia. Anyone else been tested? These are genetic tests I had to get after being hopitalized for a possible absence seizure. My husband figured it out (he's a biochemist) based on the long list of medicines I can't tolerate and the big bad drug ketamine that I had a severe adverse reaction to when I received it for anesthesia (when I had some ovarian cysts removed). 

I'm 48 and eagerly awaiting menopause!!!

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