Altruism

Yeah, me too. HT888, I'm VERY interested in how POTS due to unidentified connective tissue dysplasia is treated in Russia? PD, hyper or else? Thanks a lot!

I'm a little confused... Acrocyanosis is legs turning purple which is due to pooling, no? Thanks for your responses.

Здравей, Анджела, българският език е много близък до руския, нали са все славянски езици. Хубав уикенд! Я попрoбвала поговорить по болгарскому язику, я думаю что Анжела можно разбирать. ) Прости мои ошьiбки! LOL I've never used 3 languages in 1 post before. Anyway, I find it very useful too. Do you have any idea why 30%?! of the Russian population has some form of Dysautonomia? Is it in the genes, in the air, the vodka ?

Thanks, E Soskis. I guess this is exactly the opposite of pooling? Not getting enough oxygenated blood to my extremities? It only happens when I stand up and I checked my oxygen level with pulse oxymeter and it was my typical - 98%. I'll definitely mention it to my doctor next time I see her.

I noticed the nails on my feet turn purple/blue the moment I stand up. Have you even experienced anything like this? What could it be? Denervation? Raynauld's? What was your diagnosis? My legs do not appear to be pooling, aren't too cold, just pale.

kimbellgirl, thanks for posting. Actually, I think it's the other way round - vegetative disfunction in Bulgaria is considered a very mild disorder due to stress with sweaty palms, nervousness, etc. and not a debilitating dysautonomia. Yol, same in Bulgaria. I can't find any info anywhere. I'm sure there are so many undiagnosed people... I might create a forum/website and spread awareness.

tpapik, I'm sorry for your loss and I'm sorry you have to deal with POTS on top of this. I started having mild symptoms like inability to stand still and "anxiety attacks" in my 3rd trimester, but I attributed them to just being pregnant. Then I had a VERY traumatic and difficult delivery and lost 2 liters of blood. Then immediately after childbirth my symptoms got severe and I was bedbound. I am still bed/housebound, but I feel a tiny little better 3.5 months later. I have a good day here and there and don't use a wheelchair all the time anymore. I hope in 1-2 years to become somewhat functional again. I completely agree with misstraci. I believe it's hormonal or autoimmune (despite negative ANA) as all my tests came back normal (except TTT). How have you all been?

I am researching POTS in several languages and in some of them I cannot find any information for Postural Tachycardia or Dysautonomia. Then I search for neurasthenia, but the information is quite outdated. So, how does autonomic dysfunction / dysautonomia translate into your language (if it's not English)? In my mother tongue - Bulgarian - the terms POTS and dysautonomia do not exist. The closest I've seen is vegetative (autonomic) dystonia оr вегето-сосудистая дистноия (vegeto-cardiac dystonia) in Russian. Do you think it's the same?

Disturbingly many! I keep wondering about the reasons. (I'm a PM, not a nurse.)

Proud to announce I survived the HORRIBLE surges and I'm now on 50mg Zoloft. Took me 3 weeks to get here, but I think I feel a difference already. My brain fog is gone, for example. I did not have any side effects apart from the increased (!!) anxiety. Is this normal? Does it mean its not working? No nausea, nothing.

Count me in... I'm so sorry for you and I sooo know how you feel. But! There are always good days ahead of us, remember it! Try vitamins, try moving, try surviving, try another diet, try seeing a new doctor... but don't give up!

Hi, I had my laying/standing norepinephrine tested twice. First time I rested for about 5 min only and was poked twice, so I was told the results are not reliable. My Laying down NE was 290 and my standing 7 min later - 997. A week later I had it redone in a more controlled environment - rested (not in a dark room) for 40 min and had an IV. My resting NE was 157 and my standing NE 12 min later was 597. (couldn't do 15 min) According to my doctors, this is not Hyper POTS, but I think it's borderline to the least. Plus, there are so different theories out there in terms of NE levels... I don't have high BP when standing. It doesn't change a lot actually, but can drop a little sometimes. We ruled out pheo and my MRI is clean. I don't have peripheral neuropathy (negaive QSART) and I don't have blood pooling. My blood work is fine. My MRI is clean, my CT scans are ok. Then what the heck could be causing my POTS?!

Don't panic. My grandmother has been on Klonopin for more than 10 years and is doing fine. I've been on Klonopin for 9 months and I know the withdrawal is not a piece of cake, but compared to my POTS related anxiety attacks... it was a piece of cake! So take it as long as you need it and taper off VERY slowly. You should be fine. Hugs. I'm on Klonopin now and I'm upping my dose to over 1mg for more than 2 months. Anybody who thinks this is a bad idea has no idea what to be in my shoes feels like. Same goes for you. BTW, my POTS and anxiety are overlapping as well. Did Klonopin and/or SSRI help you control these HORRIBLE attacks/surges? To what extent? How often do you get them?

Woo, nice! Just ordered the leopard print in L..

There are stand up(sitting) MRIs that are open and you even watch TV while getting it done. Find one and get it done there ) That's what I did.

My geneticist at UW did blood work.

Started in late pregnancy and got severe after a very traumatic childbirth.

This thread is scaring me. Anxiety is my worst POTS symptom right now and in order to somewhat keep it under control while SSRIs kick in I take benzos. Now you're telling me that benzos can cause POTS. Ok, I'm officially scared.

One good news for the last couple of months - my gene testing for vascular EDS is negative! Yay! If now the Zoloft could finally kick in and take away some of this horrible anxiety... I will feel back to "Normal" (= potsie normal) Happy Valentine's day, everyone! Just got my brain MRI report too - no Chiari and no lesions. Good day!!

How about the jet lag? Is it longer/worse? What if a POTS patient does not have enough oxygen onboard? Is there oxygen equipment? I'm planning a trip to Europe in 2014 and I'm trying to learn as much as possible.

Have you tried this to cope with severe anxiety? How did it work? Did it help with other POTS symptoms? I had my first session today and it felt better than I expected. I was able to relax a bit. http://en.wikipedia.org/wiki/Eye_movement_desensitization_and_reprocessing I'm also a little nervous about the rapid eye movement. Could it possibly trigger a fainting? I'm not a fainter, I'm simply desperate to find relief from my unbearable anxiety.

I change my vote. It used to be fatigue and lightheadedness, now it's SEVERE ANXIETY.

Hyper POTS is a POTS subtype, however, there are POTS patient who have hyperdrenergic component without being really hyper POTS. Like me - I have high NE but my bp does not increase when I stand up. I hope it makes sense.

Thanks, I needed to read this today!