Goschi

Brain fog is definitely my worst symptom. I can relate to everything said above. Feeling like beeing in a dream, everything happening in slomo, only being 70% present. Being unable to read. Sometimes I get the feeling that being stationery most of the day makes it worse. But as soon as I move, the pots kicks in, and there's no relief. Just a vicious cycle. Haven't yet found anything that helps for me.

I thought about getting a wheelchair but dropped the idea, as at least for me, it wouldn't do anything. I can walk for 10-15 minutes but then I definitely have to lay down to recover (sitting down wouldn't help at all). I can sit upright for 15-20 minutes, then again I have to lay down to recover. If I would be able to tolerate sitting upright for let's say 1 hour I would get myself a wheelchair immediately.

Ouch Goschi! That made me hurt for you just reading it.

Becia, it does hurt, no doubt! ;-) But I am actually glad to know that nothing more serious is going on!

Hope you are having a good (sun)day!!

That may be due to salt balance; you may be flushing out salt and lowering your BP when you drink too much water. Have you been monitoring your BP to see if it makes a difference to it?

Thanks Freaked, interesting point indeed! I don't know about the salt balance. I just noticed that drinking less would sometimes let my bp drop - which is actually not bad for me, as mine is mostly a but too high. I got the feeling that drinking much would raise the bp further, but I'm not sure if this connection can actually exist.

I have permanent cramps in my calves as soon as I am upright. Was told by a physical therapist, who looked at my gait that the cramps are a result of my feeling of having a very poor balance, hence I try to place my feet/calves as solid as possible on the ground which makes the calves cramp.

Hi Corina,

I experience exactely the same phenomenon! I can walk for some minutes without too many problems, also exercising in a recumbent position is mostly fine. But exercising on an upright bike brings me close to syncope in less than 40 seconds!

I am absolutely sure that leaning forward blocks blood circulation and also makes breathing more difficult.

I am looking forward to the answer of the medical advisors.

I really hope you already feel much better with exercises in a recumbent position now! You will very soon feel some benefit from it, don't worry!

All the best wishes!!

I am currently on clonidine (.04mg three times/day) for POTS and 15mg mianserine. The latter is a reminiscence from times when docs told me my symptoms where all in my head.

Till 3 weeks ago I also took ivabradine. It lowered my standing hr, but actually I felt worse, though I didn't meet the critera for POTS any longer.

Hi everybody,

I couldn't believe when I noticed that my POTS was better on days when I was definitely not drinking enough (=only about 1 liter).

I always thought this must be a strange coincidence. However, I recently decided to give it a try and drank very little for the last 4 days. My POTS didn't get worse at all, I would say that I feel somehow "better" in general.

I really don't know what to do about this - according to what I know about POTS, it should be impossible. Could it mean that I have actually to high blood volume...?

Thanks for any ideas and wish you all a pleasant weekend!

I do sometimes have very low grade fevers (37.0-37,5 which would be 98-99 F) when I have a cold.

In some cases I feel like having the flu, but don't have any fever. This is more likely the "POTS-flu", I guess.

Btw: I was dxd with POTS and told this excludes PAF (and the other way round). You were dxd with both conditions...?

I took Propranolol which did actually nothing for me except make me very dizzy and tired. I would really like to try Florinef, but my doc is too much afraid it would make my bp higher than it already is sometimes.

I have also tried every type of relaxation-breathing technique. Most of them worked fine when it was about "normal" anxiety, anger etc. Some of these techniques I know from my pre-POTS life and I always loved them, as they really reduced overall stress dramatically. I was quite disappointed when I learned that after I got ill with POTS, my reliable old meditation techniques would literally do nothing for "breathing arousals" any more.

At least I'm not alone! I thought it was some fluke but I've been testing it the last few nights. I also feel better sitting but if I sit too long I get pooling in my legs. I've noticed that if I sit straight up I get symptoms but not if I'm kind of slouched.

Again exactely the same here! Sitting is not so bad, but after prolonged time the pooling in my legs is really bad. Sitting straight up is the worst, actually worse than walking for a few minutes! I remember I was tempted to sit in a slouched position for many years, so I probably had POTS for quite a long time.

Looneymom, I so much agree!! My POTS was definitely not caused by deconditioning, I was in very good shape, before it came up. To be honest, I even doubt if POTS could become worse from deconditioning. There are so many "healthy" people around, who are definitely "deconditioned", as they haven't exercised for years. Some of them get out of breathe, when walking 20 steps. However, they don't have POTS! I am still in a better shape than they are - and I have severe POTS.

I noticed something similar - it is even more "sophisticated", so to speak. I have normal hr/bp when I lie totally flat on my back, head not elevated. When I lay down on my sides, hr starts to rise (about 5-7 bpm). When I lay down on one side, raise my head a bit and support it with one hand (ellbow placed on the bed) my hr already goes up as much as 15bpm! This is actually more than I get, when I go from supine to sitting! (about 10-12bpm).

Consequently, I feel less symptomatic when sitting than when I lie on one side with elevated supported head. I have not the least idea, why this is happening, as there can't be any blood pooling in my lower body, as long as it is totally supine! I wonder, if anyone (medics/patients) already REALLY understands what's going on in POTS...

I have been tested negative too. However, I went gluten free for 5 weeks and didn't feel any difference at all. I would even say that I felt actually worse during that time, but this may be a pure coincidence due to the regular waxing and waning of my symptoms. I eat "normal" since then - at first I slightly improved, then recently got worse again. At least for me gluten doesn't seem to play any role at all.

Last week I got the the results of my skin biopsy. It turned out that I have a very mild form of small fiber neuropathy, confined to my lower legs. My cardio didn't take much notice of this test (neuro ordered it) and now wants me to try compression stockings.

I am hesitant - may the stockings be bad for the SFN? Maybe preventing a possible regeneration of the small fibers? My neuro wants me to try lipoic acid for this, my cardio has never heard of this med... It's all so tiring if you have to "balance" your docs...

Hi everybody,

I would like to ask all of you about your experiences with the time you need to "recover" when laying down after being upright.

I don't really mean the amount of time till you go back to "normal" vitals concerning hr and bp, but how much time passes till you feel "somehow normal" overall.

To my personal experience, this seems to vary quite enormously. Sometimes I was only on my feet for 10 minutes and it will take up to an hour to "recover", sometimes when I am upright for 45 minutes (and doing some strenous physical activity) I can "recover" from laying down for just 5 minutes...

How about your experiences, does anyone else feel this to be so irrational...?

Hope you all have a good day!!!

Thanks, Katybug! That's a very good aspect - all those activities are actually affecting the eyes, almost always involving electronic screens, which won't make things better, I guess.

Since app. 3 weeks I got a new symptom. Whenever I do "mental" activities such as reading, writing or even watching tv, I get very nauseous within a couple of minutes. Sometimes it gets better after some time, but in most cases it progresses steadily and I have to quit the activity eventually.

I have the feeling that this must be a POTS symptom, but it is new at least for me. Anybody else struggles with this?

All of my symptoms can be present both being upright or supine (even tachycardia!). There are even times when I feel slightly better when upright.

Hi summerbaum and sue, I am really sorry to hear that you are both struggling with this too. I hope you are feeling not to bad in general!

I had electrolytes checked recently and everything is ok. Also vitamine b (ok) and vitamine d (low, but still ok).

One of my docs is still not convinced that I don't have MS, though I did in fact have "every possible test on earth" to rule it out. My POTS doc has no idea about this symptom, as it is "certainly not a POTS thing", as he puts it. Very, very strange...

Katybug, thank you very much for your reply!

I was tested for all the 4 things you mention some months ago. Anyway, I will suggest some further testing (or repeating the tests), as this "stiffness" significantly worsened recently, while my POTS vitals (bpm) didn't.

However, the "stiffness" is always triggered by being upright, f.e. I always wake up without it in the morning. As soon as I get up, it starts. Therefore I thought it "must" be a POTS-symptom. Anyway, I didn't see anyone mention this in this forum, so I started to wonder...

Thanks, looneymom! I will look for Taurine, maybe it could help not only with the tinnitus!

Thanks artluvr! Will try to sleep on my stomach, I am curious, what it will do, regarding the brain fog!

I do dream most nights, sometimes good (=funny things!), sometimes not so good. Sleep itsself feels not so bad, at times I even dream that I sleep well! However, when I wake up in the morning, I always feel like I didn't have a refreshing sleep at all.