Does Anyone Know Why Symptoms Are Worse With Menstrual

[mae]

Hi,

Its monthly time again and symptoms are way worse and become even worse after cycle???? Does anyone know why this happens if hormones are normally functioning? And does anything help? Also anyone have swelling in feet after bathing or standing / walking long? I know hot baths aren't a good idea but I am trying to lower temp its hard.... and one more question is the tilt table test necessary if you have high heart rate upon standing and low B/p upon standing consistently?

Thanks Mae

And how do they determine what type of dysautonomia you have ? (without being a labrat?) Im always overstimulated is that a sign?

[Broken_Shell]

Hi Mae,

Just a few thoughts on your question about the menstrual symptoms. I also experience a worsening of symptoms with changes in hormones and am currently looking for a hormone therapy to suppress any natural fluctuations in my hormones. (I am 27 years old). Since hormone fluctuations cause a lot of changes in various body systems, there are a lot of autonomic comprensations that must take place. For those of us with dysautonomia, our bodies cannot make these adjustments properly or handle these changes. Also, having your period causes blood loss - something that your body must also compensate for and react to, and I believe this contributes to the problems with increased autonomic symptoms related with the menstrual cycle. It makes sense if you think of it this way... our bodies can't handle it when we go from laying to standing or pass a bowel movement, etc. Therefore, we can't expect them to handle a ten-fold change in hormone levels.

I hope that helps explain my theories on your question.

~ Broken_Shell

[mae]

Thank you broken_ shell yes it makes sense I have been looking into safe well so called safe Birth control to lessen the fluctuations cause I indeed feel every cycle and not just once a month I mean the WHOLE CYCLE. I have read the depo shot was good, but since we can have negative side-effects that wouldn't be so great cause it takes many months to clear out of the system . The mini pill seems to be like a good option, have you tried anything yet? I'm 30 and have considered a hysterectomy because it gets so bad , but I don't have to much faith in surgery and keeping my vitals stable they don't know what to do with them now, so I know they would be clueless if I was put under.

And even then my body wouldn't handle no hormones to well....

Mae

****pray for a better day

[Broken_Shell]

Thank you broken_ shell yes it makes sense I have been looking into safe well so called safe Birth control to lessen the fluctuations cause I indeed feel every cycle and not just once a month I mean the WHOLE CYCLE. I have read the depo shot was good, but since we can have negative side-effects that wouldn't be so great cause it takes many months to clear out of the system . The mini pill seems to be like a good option, have you tried anything yet? I'm 30 and have considered a hysterectomy because it gets so bad , but I don't have to much faith in surgery and keeping my vitals stable they don't know what to do with them now, so I know they would be clueless if I was put under.

And even then my body wouldn't handle no hormones to well....

Mae

****pray for a better day

Hi Mae,

I know that if you search the archives there have been several threads on hormone and menstrual options. I had a hard time tolerating the high doses of hormones in birth control pills (I felt really jittery and like I could jump out of my skin), so right now I am in the process of finding something that will work well for me. For about 5 years I was on a combination of Vivelle Dot Patch and medroxyprogesterone pills. I just began a trial with the Combipatch a week ago. The only question is whether or not these low ?post-menopausal? hormone doses will be strong enough to suppress my cycle. My situation is also a little bit different because I was amenorrheic for a few years and just recently began having spontaneous cycles again. I know that several people on the forum have used Mirena (progestin IUD) or a continuous dosing birth control pill like Lybrel. The Nuva Ring might also be an option if you are looking for a lower hormone dose, as it gives hormone levels slightly lower than most birth control pills. Otherwise, there are a lot of birth control pills out there, and they would all ?shut down? your cycle. The trick is just finding one that agrees best with your body. Good luck and keep us posted when you try something new.

~ Broken_Shell

[ramakentesh]

Im a guy so I dont relate personally, but I read something interesting a while back.

Apparently Angiotensin II is elevated around the time of your period. Normally this would result in increased water retention. But Dr Julian Stewart believes that there is a fairly common form of POTS caused by elevated levels of angiotensin II which results in nitric oxide being reduced because Angiotensin II increases oxidisive stress (which somehow reduces levels of nitric oxide).

Nitric Oxide vasodilates veins and arteries. WHen there isnt enough of it, your veins and arteries become too constricted and this results in pooling and inadequate blood flow.

THis gets to your point because angiotensin II fluctuates and in females it increases during the period - so this would reduce nitric oxide levels further in theory, resulting in POTS symptoms worsening in this form of POTS.

[icesktr189]

I completely stopped my period for a year. I felt so much better but i was on YAZ and went through a crazy depression. Ever since being off i have a weight lifted off my shoulders feeling. But now im breaking out and have crazy periods and my POTS has been pretty bad lately. So he gave me Ortho Tri Cylcen.. but that has pretty high hormones.. im wondering if i should take it because the estrogen levels seen pretty high?

[Poohbear]

I can only share my personal story on this one.....

I had horrible problems with symptoms being much worse at certain phases in my cycle (to the point I ended up in the ER about every other month). A couple of years ago I ended up having to have a hysterectomy on an emergency basis not directly related to this illness. I chose to leave my ovaries because I'm still on the "young side" and not close to menopause. Nobody was sure what would happen in terms of how, or if, it would impact my symptom flares related to the dysautonomia.

All that time I suspected it was hormone related.

Now...after having the hysterectomy (but still having the ovaries) and still having normal hormone fluctuations (they have been tested a few times) I do NOT have the same flares. I still get some of the symptoms of PMS (bloating, more emotional, tender breasts) but I do NOT have the increase in dysautonomia symptoms with these hormone cycles/fluctuations.

In MY CASE, I suspect that the bigger problem for me was the frequent blood loss (I had very heavy periods and was also having them about every 2 1/2 to 3 weeks) and fluid shifts. It seems (in hindsight) that was more of an issue for me than the hormones in and of themselves.

It took several months after the hysterectomy for me to recover but once I got over the initial trauma of surgery I did notice I wasn't crashing every 2 or 3 weeks like I had been. I still have crashes but they are not related very often to my hormone cycle.

[tinkerbella]

All hormones always make my Pots worse. Wish I had known I had pots years ago, as looking back I can see things clearly now and my relationship to them. The gyn's who knew nothing about how badly hormones affected my pots tried to put to the IUD you spoke about in. My pc would not allow, and said everyone she knew acted crazy with them in and that was the last thing I needed as they were already using that med on me to stop abnormal post menopausal bleeding and it was making my pots so bad. I had to be put in the hospital several times. No more hormones for me.

Good luck to all of us woman.

[mae]

Thanks for replies, the angiotensin II sounds interesting I will have to look more into that....I have been trying to get very technical with all these problems Dysautonomia is a pretty complex illness. I haven't found myself able to have confidence in experimenting with any meds yet, I lost faith in the medical field after going to doc after doc and being told nothings wrong or its depression. Also whenever I take any type of medication (antibiotics, motrin etc.) I have EXTREME anxiety attacks and I get all the side-effects practically , so I don't take anything. I don't know how long I can take this!!!!hopefully I get something figured out soon.

Mae---have a great weekend if you can:)

[ramakentesh]

I can relate to that - none of the medication Ive tried for POTS thus far has been very helpful for me - i seem hypersensative to them all:

Florinef - anxiety

Ergotamine - ok, but spaced out and confused

Butcher Broom - felt great for a week, then tolerant and then extreme relapse

Salt loading - anxiety and increased symptomatic tachy

DHE - not bad, but again felt mental confusion

beta blocker - beautofully calm for a while, then even more dizzy

So my current regime is just licorice extract and moderate exercise like walking. Progress is slow, but im getting there.