Poor (Woman's) Ttt

[stellaluna]

I am undiagnosed POTs. I have mitral valve prolapse with regurgitation and have become increasingly POTs symptomatic in past 6 months.

My question today is .... when you do a 10 min or so poor man's TTT at home, afterward when you lay or sit with feet up, do you experience tingling or extreme pins and needles feeling in your feet?

[Praxxtor]

Instead of my feet if i raise my arms to shoulder length or higher my arms will emit that pins and needles sensation with numbness.

[corina]

I don't experience the tingling or pins and needles. I have been told that due to orthostatic intolerance your breathing pattern could change which may lead to hyperventilation. Not to confuse with hyperventilation in healthy people of course!

[Alma]

Hi Stellaluna, I have mitral prolapse and regurgitation as well. I definitely get the pins and needles after the poor man's ttt. My drs are still undecided as to how severe my regurg is (different echos have shown different results), but they did several poor man's ttts at hospital, and I have tried at home. I definitely get horrible pins and needles afterwards, and numbness in my pinkies and ring fingers up to elbows.

[momandmore]

Alma, about the mitral valve prolapse and regurgitation. I had a cardiologist tell me that the prolapse will look worse on an echo if one is dehydrated. I suppose that could also affect the regurgitation. I was almost over-hydrated during my last echo (showed up on the blood and urine tests) and my MVP and regurgitation were clearly present so I wonder if I'm worse on my low volume days.

[Alma]

That's very interesting, momandmore. I will bring that up to my cardiologist next time I meet with him.

[stellaluna]

Alma, thanks. I wonder if its MVP related in combo with POTs.

I just had a Tilt Table Test yesterday. The pins and needles feelings were a bit more intense than at home and also felt in the hand/arm that had the blood pressure monitor on it. Only after quite some time and after they administered the nitroglycerin--hope I never have to take that again. That was an awful feeling (the nitro effects not the pins/needles) but I tend to be chemically sensitive with many things.

[Alma]

I'm chemically sensitive, too. I actually wonder if it's an autonomic problem that makes me very sensitive to chemicals and medications.

[yogini]

It would not be unusual to have pins and needles with POTS, whether or not you have MVP. For example, you may have pooling when you stand. That means blood may be rushing to your feet from gravity. Then when you sit or lie down the blood moves upward and you get the pins and needles. Chemical sensitivity also isn't unusual.

MVP is actually very common in women. I've heard 1 in 4 or 5 women has it but most are "fine". Your doctor could advise whether your symptoms are from MVP or something else.

[stellaluna]

Makes sense that pooling can have an effect on pins/needles feeling.

Current diagnostic criteria leads to estimate of less than 3% pop. with MVP.

[Alma]

I think MVP is related to dysautonomia, in the way that ED is often related. Whether there is a causal connection going one way or the other, who knows, but it seems to be correlated for a lot of people.

This book says that 40% of people with MVP also have dysautonomia, which they also call Mitral Valve Prolapse Syndrome.

http://www.amazon.com/dp/1572243031/ref=rdr_ext_tmb

Makes me wonder whether having my valve repaired would help my symptoms after all.

Stellaluna, you say you have become increasingly POTS symptomatic in the past 6 months. Me, too. Is your regurgitation getting worse? Mine has.

[stellaluna]

Alma, I was diagnosed with mild MVP (no regurg) aprox. age 8-10yrs. I have had chest mild pain & palpitations I have always associated with MVP and was told it was fine. In the past few years, echocardiograms showed it was changing slightly (other valves involved) and now some regurgitation, though sounds like no where near your ordeal reading your blog. Doctors are not suggesting a MVP plan right now. I was on Inderal to deal with tachycardia, palpitations and BP issues for MVP in my 20s.

This summer I had severe dizziness and near fainting. Looking back, I may have had POTS symptoms much early than past 6 months but only recently orthostatic issues of (standing/walking). I had a CT scan (unrelated begnign lesion issue; 8th CT in many years but this time I reacted) that seemed to set everything in to overdrive this summer. I think it may be the chemical sensitivity piece though maybe also the dehydration of fasting before the CT scan contributed to it.

My cardiologist says I need to stop thinking of myself as "sick". Her words... I went to her with concerns about my dizziness and BP. She also said, And even if it is POTS, there is nothing she can do. Lovely, huh. I had to suggest the idea of POTS and the tilt table to her so looks like I will be heading for a new doctor with POTS education.

I have had that book for many years. I see the MVP dysautonomia connection in many people. I don't know if it is disproven as it is a bit outdated but I still pick it up now and then. Little did I know when I first got that book that the POTS part when be important info for me...

[Alma]

Thanks, Stellaluna, it sounds like we have a lot in common! It sounds crazy, but I think I preferred it when I thought I needed open heart surgery to this we-can't do-anything-for you and dismissive attitudes from doctors! I am in a situation where my cardio sent me for heart surgery, and when I got there, they said, 'you're fine, go home,' I just want this fixed, but it seems like that may not ever happen, the more and more I read. Glad to know I'm not alone in this, anyway.

[stellaluna]

The fighter in me (not all days...) will continue looking for a doctor who will provide good care OR refer to someone who can offer expertise. I know what you mean. Sometimes knowing someone understands or empathizes can make all the difference. This summer, when a nurse took the time to do a modified tilt test in the ER and time stopped in my head and I realized what was going on; POTS... I was actually relieved because she was listening to me. The doctor then came in though and said I was just dehydrated.

I know many people on here are probably family with with Spoon Theory but I only first read it a few months ago... and I cried; for two reasons. One, I connected with it and it explained what I could not yet. Two, I am I teacher. I have always thought that I was sympathetic and thoughtful about the needs of families with medical issues. But I never really understood. I didn't realize the struggles and effort of the little things like walking up to the school building door to pick up their child every day. In this way, I suppose POTS is making me a better teacher even if I do have to sit down more often.

www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/