Goschi

I was prescribed Lyrica too 10 months ago, when my docs believed I had polyneuropathy, prior to my pots diagnosis. It made me a bit depressed and didn't help my "nerve pain" - no surprise, as it turned out I don't have polyneuropathy. What kind of nerve pain do you have? Is it pots-related?

My doc is hesitant to give me Florinef, as my BP is still slightly elevated (though no longer as high as it was a couple of weeks ago). But he suggested I might try Butcher's Broom, as it also has a vasoconstricting effect. Has anyone tried it and made good (or bad?) experiences?

gjensen,

I had a skin biopsy both for sensory and sudomotoric nerves, no Qsart. The biopsy came back negative for the thighs and very mildly pathological for the lower legs. It was done 5 weeks ago. My symptoms with severe and longlasting tingling after being upright were present already before and didn't change since then.

My Pots neuro doc is convinced that the small fiber neuropathy and the Pots are connected (ok, what else?) but that the tingling is actually not from the SFN but rather from blood pooling.

I get extreme tingling (and sometimes even shaking) in my feet (mostly soles) and lower legs always right after I was upright only for a short time. Sometimes 5 minutes on my feet can result in 2 hours of extreme tingling. I have a very mild small fiber neuropathy in my lower legs. However, I can't imagine this to cause such an intense and longlasting tingling after a couple of minutes on my feet.

I also suggest to get it checked! However, I do know another POTS patient who gets this on an off, so it could "only" be a normal symptom of dysautonomia. Therefore, don't worry too much in advance!!

Yesterday I had a sleep lab study and was diagnosed with a rather severe form of sleep apnea, most likely a central type.

The pulmologist from the sleep lab is absolutely convinced that almost all of my symptoms will resolve, as soon as I get CPAP-therapy. However, he doesn't know much about POTS, but it was quite striking that for every single symptom I mentioned (except STANDING tachycardia) he told me it's so typical for sleep apnea. I am getting curious.

My neuro-POTS doc on the other hand was quite surprised that I have sleep apnea, as he always tried to convince me that all my symptoms, particularly daytime sleepiness, breathing problems when falling asleep, arousals when waking up in the middle of the night short of breath, etc. are uniquely a result of my POTS.

Now he is actually confused. He too starts to be curious how much of my whole condition might actually improve from treating the sleep apnea.

I am just willing to wait and see. Anyway, I just got another proof that IT IS always worth looking for underlying and/or additional conditions!

My experience is almost identical to what ScienceGirl described!

Freaked, I really feel with you!!

I am mostly homebound since summer 2013 and I can absolutely understand how bad the isolation feels... Did you invite a group of friends? I have learned that I can handle it better to see just one friend at a time. And when I get too tired, I would just lay down on the couch. Your friends will understand, believe me!!

This part of our lifetime is so rough... But there will be a time when we all look back at these worst episodes, feeling strong and proud of ourselves for making it through them!!

Sending you all the best thoughts!!

Gjensen, that really sounds bad! I hope you can get relief very soon!!

I also had "reflux spells" while sleeping (they always woke me up of course) from time to time. I am not sure whether they are connected with a possible sleep apnea or not. Maybe I was just eating to much for dinner sometimes.

I think it is really worth you let your doc check these symptoms once more. Wish you to get a good night sleep again very soon!!

I have this on and off throughout the day. Mostly in my calves/feet and in my chest, sometimes also in my stomach. No doc ever could give me a good explanation for it. I personally guess it could have to do something with autonomic neuropathy, though I never got diagnosed with this.

Katy,

you are of course totally right - blood pooling is a feature, not the cause of Pots! However, to my understanding it is the indirect cause for our orthostatic intolerance - not getting enough blood to the upper half of the body creates all the symptoms we experience with being upright. Therefore, I wondered why patients with venous insufficiency don't feel potsy. But probably sue is right, our pooling is severe. We are just so special!

Most Pots patients do have blood pooling in their legs resp. their lower body. Ok, I understand this to be a basic mechanism for what we experience, in first place the compensatory tachycardia to get blood back to the upper parts of our bodies.

But "venous pooling" is in fact a very widespread medical condition, especially among people who suffer from venous insufficiency. Consequently, these patients also don't do too well with standing for a long time. But they don't get POTS (symptoms), as far as I understood. Why do WE get it...?

I take 300mg daily. My neuro thinks it should help with my small fiber neuropathy. I still don't feel anything (no side effects too!), but maybe I need to wait some more time. However, another doc told me recently ALA is only thought to help with diabetic polyneuropathy. (Don't have that...)

First of all, I would walk for at least 5 hours thru the streets of Vienna - my hometown, the most beautiful city in the world! ;-) The next day, I would repeat it!! Well, and then? Who knows, there's still so much time left!! :-)

Thanks, looneymom! I am exercising very, very careful now! The only possible reason I can imagine at the moment is the clonidine I take since three weeks. It makes me very weak and the POTS worse - no wonder, as it is a vasodilator... Will slowly taper it off now.

However, I am permanently searching for the underlying cause of my POTS! ;-)

gjensen, I have this symptom since 7-8 months! Always thought it was "just dysautonomia".

However, when I was in hospital last week for some tests, they checked my blood oxygen while I was sleeping, and it always feel below 90% right after I started to fall asleep. So they already caught it right on the "transition". I am now referred to a sleep lab next week, the doc strongly believes I have sleep apnea. Let's see.

Today I experienced once again, what I do know quite well since a few months:

I was washing dishes and did some other work in the kitchen, when I realised it's time to go supine.

After I did, I felt the Pots-symptoms improving within a few moments.

BUT: About 10 minutes later (still in bed) I suddenly became very nauseous, extremely dizzy, almost close to a near syncope! My hr and bp went up significantly. It took me another 30 minutes to get out of this "spell".

Did anyone else ever experience this kind of "delayed crash" after laying down? Any thoughts what could be the reason for it...?

Same here. It took me many months to understand that there's a connection between my ability to talk and dysautonomia. Even after I got my Pots diagnosis, other docs would tell me I got a depression and/or "burnout".

Chaos, thanks for the links!

Of course I already thought about ME/CFS too. But I definitely don't meet (all) the criteria, so it seems that I have "only" POTS or maybe POTS and something else.

Thanks a lot, Corina, for your nice and ever so supporting words!! My best thoughts are going right back to you!!

Lejones, thank you so much for your encouraging words!!

I am really glad to hear that you could leave these bad times behind you!! Wishing you all the best for the future!!

Thanks Giuliana!! I hope you are on a good way to recovery!?

POTS is my only diagnosis, except a recent finding of a very mild small fiber neuropathy in my calves. This seems at least to modify the first diagnosis of "Hyper-POTS", according to very high NE during my TTT.

However, I can't get rid of the general feeling that "something more basic is wrong inside my body".

But I know this is not unusual for dysautonomia sufferers.

Since my "breakdown" in Feb. I was on Ivabradine (didn't do anything), at the moment I am on Clonidine (makes me worse, will stop it). But I don't really blame the meds for not helping me - since I first got meds after my diagnosis last summer (Propranolol, Mestinon) I always had the strong feeling that what they do with my body has in fact nothing to do with what's "actually" wrong with it. Just a feeling.

This may be pure psychology - but since I simply can't recover to where I was two months ago, just because of one near-syncope, I really wonder...

If anybody has got some experience with that, I would be glad for every idea! Thanks in advance!!

I was dxd with Pots in Aug. 2013, but certainly had it since 2012 or maybe longer. Til Dec. 2013 I got worse and was finally bedridden and homebound.

After that, I started to exercise and was very soon able to leave my home for 5-10 minute walks. By mid Feb. I could go for 20 minute walks, 3-4 times a day. On Feb. 22 I "risked" a 45 minute walk - and almost had a syncope, I barely made it home.

Since that date, I never recovered and today I am again mostly bedbound.

Despite continuing with exercise (which is now much more difficult than it was in Dec./Jan./Feb.) I simply can't get even close to the state I reached before my "breakdown". I start to wonder if I "ruined" something in my body on this Feb. 22? Is this at all possible in dysautonomia?

I take Clonidine since 2 weeks now (0,04mg 3 times a day) and start to get slowly angry about this med, to be honest.

It is thought to get my adrenergic spells under control and thus "make my pots better", according to my doc.

The first is done somehow, the second - well not at all, I am afraid. My HR goes up higher than before when I am upright, my legs get shaky and weak from the first second I stand up. It almost seems to me, as if Clonidine does some vasodilation, as I can feel more blood pooling!? But why would it be rxd for pots then? Shouldn't it rather act as a vasoconstrictor?

Not to mention it makes me very tired, almost lethargic and slightly depressed. Also some strange "hallucinations" occur quite often. Can only be from Clonidine as I never had them before.

However, I often wonder if really all my cognitive impairments result from "brain fog". Concerning the problems with reading f.e., it feels much more that I am "too nervous", rather than too foggy.