Goschi

I get an "icy hot" feeling in my legs, particularly in my calves - but never in my upper body. However, I have not the least idea, what this could be... Maybe someone else knows..?

When I am upright, my calves feel very weak and sometimes shaky - as soon as I lay down, they start to really "burning" from the inside.

Anyone else gets this...?

Any ideas, what it could mean...?

Have a good day everybody!!

Hi kitt,

thanks so much for your Infos - good to know that I may not really need meds for my insomnia, I will ask my docs about these non-pharmaceutical methods!

Interesting to hear about a possible connection between dysautonomia and body type, I never read about that. (I am a tall, slim male).

And yes, Innsbruck is a very nice place! Though I do like my home city Vienna much more! ;-)

Thanks again, DeGenesis, for this detailed expertise!!

I have no problem with anxiety, it's just insomnia. I guess, I will ask my doc for a low dose of doxepine or Elavil.

Btw, you are so right about quetiapine - a psych doc gave me this one year before I finally got my pots diagnosis. She was sure I had a panic disorder... (and even in that case, quetiapin would be a malpractice....) However, this med really worsened my pots - and in addition, it was rather hard to come off quetiapin!!

Thanks a lot, DeGenesis and barb10!! I was quite skeptical from the beginning. Problem is, I don't tolerate SSRIs, thus my doc thought about an alternative.

I live in Austria (not to be confused with Australia, no kangaroos here! ;-))

A new neuro doc suggested a dose of 15mg of Mianserine in the evening to help me with my insomnia.

I just read Mianserine will raise norepinephrine levels in first place - maybe not so good for us...? Anyone took Mianserine and had good/bad reactions while on it?

Yes, I got this too for many, many months! Especially when I was upright, but sometimes also when being supine.

However, it completely stopped 2 months ago, now I am mostly rather pale in my face. very odd.

Thanks again, DeGenesis! I will give it a try!

Thanks DeGenesis for the link! - really sounds very positive in general! But your experience wasn't that good, as far as I understand?

I am following this thread regularly - and more and more start to doubt whether my diagnosis of Pots/dysautonomia (+small fiber neuropathy) is actually right... (Though confirmed by 2 TTT and lots of "Poor Man's TTT).

So many of you use a wheelchair - and I would do so immediately, I am certainly not too "proud" for it!!

But it wouldn't do anything for me :-((. When I was in hospital last week, I gave it a try: I had to get to a laboratory for some tests and asked to be brought there in a wheelchair. All in all I had to stay in that chair for about 35 minutes - and afterwards I felt awful, so extremely "potsy", just because of being (sitting) upright for this amount of time...

The following day I decided to walk to this lab (without having a test done there, just as an "experiment" for myself). To get there and right back to my room took me altogether 15 minutes of walking. Afterwards I felt actually less bad than the day before in the wheelchair.

So - what exactely does a wheelchair do for you?? Sorry, if this question sounds stupid, but I really would like to understand the difference between all of you and my condition...

Have a good day!!!

I know this is a very old thread - but I just found a product here in my country that contains Rhodiola rosea, so I just wanted to ask again, if anyone took it and what kind of experience you had...?

Thanks a lot, DeGenesis!!

My BP got almost only higher (up to 150/100) when I was upright , though this didn't happen every time. When I was supine, it was always pretty perfect (115/75).

With the recent use of a Betablocker (1.25mg Bystolic every morning), the BP never goes higher than 130/90 when I am standing, supine it even tends to get to low (100/65).

I will discuss the use of florinef with my neuro, he seems to be more willing to give it a try!!

Recently, my cardio thought again about giving me Florinef, but once again, he considered my BP being still a bit to high. When he saw my disappointment, he replied: "Don't worry too much about it, Florinef won't probably help you, as it has no vasoconstricting effect and thus won't prevent venous pooling."

I always thought Florinef acts right this way? But he denied again. Anyone knows about the mechanisms of Florinef...?

Hm, I am really not sure. And though it doesn't make any difference NOW, I would very much like to know. I had very mild symptoms from my ANS during some periods of my life, but never regarded them to be more intense than that what half of the Population experiences. By no means I had something like Pots before 2-3 years. I would remember the symptoms for sure.

Congrats, Potsie0002!!!

This sounds as if all your efforts really pay off now! May I ask, which type of work you are doing?

I have asked the question above to some docs - and got a kind of "maybe" answer. To be honest, I am not really satisfied.

I guess, mottled skin on my limbs should definitely mean "something" - and if it is a sign of blood pooling, this again should lead "somewhere" in terms of diagnosis. Can't believe that I really "want to know too much", as one of my docs let me feel....

Right now, I am going the wrong way.

Me too...

Thanks to all of you for the kind replies!!

I tried Butcher's Broom for a couple of days and at first I thought it may have helped "a little bit". However, after 1-2 days it seems to upset my stomach

Unfortunately I couldn't discuss it with my docs, as none of them "believes" in herbal medications...

Thanks a lot, arizona girl!!

Now I understand much more about this quite complicated matter.

In fact I had a TTT, (highly positive), a skin biopsy (result "borderline" for small fiber neuropathy in lower legs, thighs ok) and a qsart (clearly negative). However, no one diagnosed me officially with "autonomic neuropathy". I only got the diagnosis "Pots" and "probable small fiber neuropathy".

In addition, an immunologist ran a huge number of tests (results consist of 67 pages) and nothing really bothersome appeared.

The only point is: The neuro as well as the immuno docs never looked at the test results from the other fields ("So sorry, really don't understand enough", I got to hear from both sides).

Anyway, I can't imagine (or at least hope so) that the immuno doc really missed something...

I have been diagnosed with a very mild form of small fiber neuropathy in my lower legs.

However, I have been reading about "Autonomic Neuropathy" quite often. But yet, I didn't understand exactely what it means (i.e. what it IS) and how you get tested for it, and what Treatments are existing.

I asked a few doctors (Neuros!) about Autonomic Neuropathy and always got the answer: "This is just an incorrect term, there is nothing concrete behind it and thus of course no specific treatment available."

Can someone here shed more light on it...? Thanks in advance!!

Macca, that sounds terrific!! Congrats! When you talk about being able to walk for 45 minutes, does this mean mostly symptom-free? I can actually walk for 10-15 minutes if necessary, but being highly symptomatic after 2-3 minutes.

I do really love my two cats so much - and they are very helpful... Cuddling next to me when I have to lay down. On the other hand, I feel ashamed very often, as I can't play and run around with them as I used to do prior to my pots. Sometimes it really breaks my heart, cause they don't understand and I can't explain... :-((

Unfortunately, I always got significantly worse with any kind of exercise eventually. However, not exercising at all keeps me stable, but won't make me improve either.

Up to now, I still didn't quite understand what exactely exercise should/could do physically for us Potsies? Ok, our muscles will get stronger. But whenever I achieved that (mostly within a few days) I started to become (very carefully!) more active in every day life and consequently ran into a severe pots crash, followed by a relapse...

So, put short: I can exercise, I will be able to strengthen my muscles (legs, abdomen) but this would lead me nowhere in terms of a better quality of life.

Very interesting topic!! Prior to my Pots illness, I always felt that water tastes "metallic", regardless whereever in the world I drank it. Since I have Pots, water tastes "normal" (=without any taste) to slightly "sweet". I always thought this is just me, never even mentioned it to a doc or someone else.

Hm, noone ever tried it and made any experience...?