Goschi

Ok, that's exactely my diagnosis... But I am trying to find out the underlying causes, yet without success. Good luck for you!!

Hi Gjensen, I can relate to the neuropathic pain (in my legs and partly my chest) is the worst in the evening before I go to sleep. Did any of your docs suggest anything about a particular type of underlying neuropathy?

Hi Robin, I am still searching for a doc who can do anything with my SPECT results. Up to know, I only get reactions like "these results are fairly impossible - just ignore them!".

Good luck and best wishes for Tyler!!!

I had that for 2-3 months this spring. It came within a couple of weeks and went away about 2 months ago. No idea what caused it, docs weren't helpful either...

Thanks for your replies, "glad" I am not alone with this almost schizophrenic pattern. @Always hoping: (what a wonderful nick!! ;-) That sounds exactely what happens to me. But it goes beyond physical abilities, the fluctuation also effects my cognitive symptoms. For example, last friday around 10am, I felt so bad physically as well as mentally that I would have failed to fill in a simple form with my personal data. (literally. I couldn't even talk a few words to my wife...) On the same day, (!!) between 5 and 8pm I wrote a short scientific article for an online magazine, afterwards went for a 30minutes walk in my neighbourhood. What crazy kind of illness is this??? At the moment I am mostly bedridden in the am and I feel like needing to go to the ER all the time till noon, whereas I could easily hold a part time job from 4 to 8pm.

I recently experience symptom patterns along the course of the day that I almost can't believe this is still reality sometimes. I do sleep quite well (most nights) and also wake up feeling not bad at all. But about 30 minutes after I got up, symptoms of all kinds start with such a severity that I often literally believe I am going to die right now. Then I am always convinced that something much more serious than pots is going on in my body. However, between 1 and 2pm most of my symptoms get better very fast. And by 3pm or 4pm on most days I literally forget that I am ill at all and I can do whatever I want, being practically free of any symptoms! This wierd pattern has repeated itsself now for almost one week. The difference between the two halfs of the day is so extreme that I start to believe I might be dreaming either the am or the pm. Both conditions can't be present in one person during one day. It feels so unreal... Anyone else ever experienced something crazy like this...??

I don't know about B12, to be honest. But concerning D, it is absolutely clear that a high percentage of dysautonomia patients have very low levels at times. So there must be a connection. On the other hand, having normal D levels doesn't prevent you from getting POTS, as well as raising (low) D levels when you already have POTS doesn't seem to be helpful in terms of improving any symptoms. So, from this point of view, there is obviously no connection. Very wierd and contradictive, indeed...

Hi Rachel, I know, in a retrospective view it is always difficult to reconstruct what showed up first and what may have been chicken or egg...? How is your son doing on plasmapheresis, did he already start? I keep my fingers crossed that this therapy will help him eventually!!! Concerning his antineuronal antibodies, would you be so kind to write which ones exactely were found in his body? I am getting back some lab results from my hospital stay now and would be curious to compare. Thanks in advance!!

It's so wonderful to read this, gjensen!! Congratulations!! However, continue to keep searching for the "real thing(s)" that cause your condition!! I wish you best luck for this struggle!!

Hi Boomerang, welcome! Pain is absolutely common in Pots - as f.e. coathanger pain, pain in legs and arms when they are dependent, pain in limbs f.e. because of small fiber neuropathy. So, you definitely don't need to have EDS to get pain - "simple" dysautonomia is unfortunately sufficient to produce regular pain...

Hi, Robin! I did get some treatment from the hospital - I take midodrine since and it actually helps "somehow". But it doesn't make the "big difference" the docs expected... Oh yes, I lose at least 20 IQ points when standing, probably even more. However, my cognitive ability is good when I am sitting - didn't expect that, as I feel very brain foggy... And yes, an IBZM-Spect is a brain Spect! If a kind of Parkinson is suspected, they usually do a DAT-Spect first. This one came back totally normal. In that case, they don't perform the IBZM, which is intended to make the diagnosis more precise. However, my IBZM was already scheduled and therefore they made it too - and bang, came back pathological! Which is per definition impossible with a normal DAT-Spect. At least that's what all docs told me up to now. So I (or rather my IBZM) remain a sheer miracle... But maybe the same happened with your Spect?? Do you still know, what type you had done? Maybe we are the only 2 people in the world having "impossible" test results...? ;-))

Hi, Rosey! Yes, I have this symptom! (scratch on a chalkboard is a very much fitting way to describe it!). I am on midodrine but have had this "nerve issue" for at least 12 months (midodrine since 4 weeks). I really don't know how to judge this symptom. Every doc I told it reacted simply by saying "very strange, never heard of it". Are there some triggers for you? I still try to figure out them, yet without success.

Hi, EGorman! I was diagnosed with POTS (multiple times, 3 TTTs) and have never heard about PPS, to be honest. I didn't find too much information on this condition on the Internet either. Would you mind to tell about some of the typical symptoms you experience? Are they very different from POTS...? I haven't had an ANSAR-test, heard about it from your post for the first time too.

Once again I would like to thank everybody for his/her kind supportive messages when I was in hospital!! It really felt so good to know having this forum as a strong source of feedback and strength! Thank you all so much!!! I am back home since yesterday. I didn't get any clear answers about the cause(s) of my dysautonomia, which makes me quite sad atm. I only got the following diagnosis: "Severe autonomic dysregulation, probably of central origin with possible peripheral involvement." The docs then listed my Pots, my SFN, my mild sleep apnea, my pathological IBZM-Spect, some minor neurological abnormalities - in fact they simply summarized every test result that I got during the last 17 months. I could have done that on my own, I wouldn't have needed a 4week hospital stay now... The only "new" results were that my physical abilities fluctuate from day to day and that my cognitive abilities are excellent when I am supine and immediately drop when I am upright. Oh, what a big surprise... I guess, I need a couple of days to rearrange my thoughts and my overall strategy as I feel (once again...) jerked around by the medical profession...

I can definitely relate - lack of sleep makes the whole bunch of symptoms worse... @Soskis: Sorry to hear that you had such a stressful time. However, when I was still working (full time) and have had one full week of less than 4 hours sleep every night, I would have been a complete wreck at any time of my life...

Thanks to everyone - for the link to the list and the additions! I wonder, if there are some typical causes for very gradual onset, or - asked the other way round - if some causes are excluded, if you have gradual onset?

I was tested very thoroughly for B12-deficiency and definitely didn't/don't have it. However, mit D level was extremely low about 6-7 months ago (almost below measurement). I was given vit D tablets but couldn't tolerate them at all (made me extremely jittery and nervous). In March (without being exposed to sunlight) my vit D was surprisingly back in the middle of the range again. I didn't experience any differences how I felt concerning my dysautonomia, however my d and b12 levels were...

Thanks, kitt for your experiences with midodrine. I am sorry to hear that you are also having trouble with the right dosage... It's in fact a pity (if not to say quite annoying!!) that this med is so difficult to handle, as I can fell it would help me a big deal in general!!

Hi, Rachel - yes I am still in the hospital, but will go home on saturday. Atm I am quite disappointed by the diagnostic/therapeutic results so far, but I will post about that in thread about my hospital stay! I wish you and your Tyler all the best for the plasma exchange!! You really deserve to see improvements after the intense struggle and I keep my fingers crossed for you!

Hi, smish! I can relate very much to your experience! Before I got my pots diagnosis I got the obligatory diagnosis of "anxiety disorder", because I told my physician that I get strange attacks of uncomfortable bodily symptoms when I need to sit somewhere for a longer time. Oh, if I just knew about the truth... Btw, using a wheelchair is out of the question for me for this very reason.

I only know that the scientific literature used to define the usual ONSET of Pots in people between 15-50 years old. However, this starts to become debatable, as more and more patients younger than 15 and older than 50 get their first diagnosis. Concerning the chances for remission: Many teens who get it, seem to outgrow it after some years. However, there are still not enough follow-up studies for teens who got it at the age of 16 and outgrow it f.e. at the age of 22. There's yet not enough data to conclude, how they will be doing, when they reach their 30s and 40s. On the other hand, people who get their first diagnosis at the age of 45 may have had Pots in a very mild form for over 30 years already. So the question 1) of the age of actual onset and 2) the point of time of first diagnosis are still without clear answers and full of speculations, as one Pots doc recently told me. To him, it is most important for any patient to get a right diagnosis, to detect subtype and possible underlying causes, and eventually getting an individualised form of treatment. These factors will decide much more about the outcome than the patient's age.

Hi edriscoll, I am really sorry to hear that you experience this vicious circle too. I couldn't describe it in better words... I guess, the permanent fight or flight mode (high NE, high sympathetic activity) is mostly responsible for this ongoing restlessness. Our bodies getting weak from it adds even more feeling of malaise. Could you find some medications that provide relief? I am still searching. Thanks for the link to the article. Very scary indeed... Best wishes!!!

I still take 2,5mg midodrine 3 times a day, and after doing so for more than 2 weeks, I would still say that it helps me. But there are also some effects which I did observe and which I feel to be a bit cumbersome: 1) I takes up to 1,5 or even 2 hours for a dosage to kick in. Here in hospital, this doesn't play a role, but for every day life, I imagine this to be quite a challenge to organise when to take a dosage. 2) When the dosage finally kicks in, it feels a bit too strong at the beginning. For the first hour, I do get the typical goosebumps and itchy scalp. 3) The best effect of every dosage comes about 3 hours after taking it and already weanes off after 4 hours. So, from every taken dosage I have in fact just 1 good hour, very much delayed and not really able to plan when exactely I need to take the dosage in order to have this hour... Anybody else made similar experiences with midodrine? If so, how do you handle it, any "tricks" to get a good, consistent effect...?

Robin, one more question concerning your skin discoloration - does it correlate with the severity of your POTS-symptoms? I recently understood that as long as this "pattern" won't show up on my legs, I don't feel too symptomatic. On the other hand, whenever I feel very potsy, my legs will already have started to develop this "crazy mosaic". So there must be a very, very close connection between POTS and this leg skin phenomenon. What about you, do you also experience the correlation between mottled legs and feeling very potsy...?