Goschi

Hi Andrea, Low Vit D and Magnesium as well as high Cortisol can be markers for dysautonomia (resp. results of dysautonomia). For example, my Vit D was always extremely low (some docs couldn't believe the results...) my magnesium always pretty normal and my cortisol was too high most of the time in 2013 (didn't have it tested again since then), definitely because of the stress. To my understanding, low Vit D and magnesium are quite typical for dysautonomia (though mostly regarded as a result, not as a cause) and high cortisol is simply a marker for stress, that can also vary from day to day. In addition there is a specific cortisol circadian rhythm, i.e. it fluctuates quite a lot in the course of the day. At which day of time was yours taken? Why not trying Supplements for Vit D and magnesium? If you start carefully with doses (see, how you tolerate them), maybe some very particular symptoms may improve?? Good luck and best wishes!! Goschi

I never tested my blood sugars myself - but I was tested many times in hospitals, right when I had this certain Kind of spell that felt like hypoglycemia. The figures (sugar, insulin) were always ok. Anyway, this is definitely a dysautonomia thing, never had it before... It´s just so much annoying that I get it more often right now, when I am actually in a very (surprisingly!) fast process of recovery....

Same here! It actually got worse for me recently... :-(

Sorry, can't contribute to this issue... I have tried different types of compression stockings - ALL of them make my POTS worse (push up my standing HR!!) and increase the tingling, numbness and especially the weakness in my legs... :-(

And I agree that a Tilt Table and a Schellong Test can really give quite different results! Anyway, If both tests confirm POTS, it is usually no doubt that the person has it.

The "poor man's tilt table test" is actually the "Schellong-Test". It is named after its inventor, the German cardiologist Fritz Schellong. However, outside of Europe the term "Schellong-Test" is rarely used.

Hi again dear Andrea! Thanks for your personal message - I will answer it tomorrow, at the Moment I am only on my mobile in a doctor's office. Your Schellong-Test would confirm POTS - a rise in heart rate from 66 to 109, that makes a rise of 43 beats from lying to standing. A rise of at least 30 beats is the diagnostic mark. (By the way, your measurements are almost exactely my figures on a potsy day). All your other symptoms - getting sick, nauseous, dizzy, etc. from eating, talking, moving around in general would again be absolutely normal with POTS. Lots of members here would confirm that. However, a Tilt Table Test would be a helpful addition in order to see what's going on in your system. And finally, you should look for an autonomic Specialist in Berlin (probably a neurologist, some cardiologists do have a good knowledge of the condition too). You will probably need some patience, I guess - at first for finding a Specialist and second for trying out which kind of treatment will help you. However, POTS is treatable, and you will eventually improve!! Don't worry! I send you much energy and confidence!!

If you don't find a hospital offering a "Kipptischtest" (though I guess, the Charité should have it!) ask docs for a "Schellong-Test". Any neurologist or cardiologist should be familiar with doing it properly!! Best wishes - everything is going to be ok!!

Hi Andrea, what you describe sounds absolutely typical for dysautonomia/POTS. The skin on my and legs and arms gets very "patchy" in different colours, the longer I am upright. The tingling and numbness, particularly in feet and lower legs, is again very typical for POTS patients. I would suggest that as a first step you look for a hospital that offers a Tilt Table Test (Kipptischtest in German). This test can confirm POTS. As a next step, you can start looking for possible causes, as for example small fiber neuropathy. However, don't worry too much now! (Easily said, I know...). You will have a proper diagnosis and treatment quite soon! Best wishes from Vienna to Berlin!!

Being hyper vigilant AND being alone with yourself definitely can make things worse. I remember one incident this summer - it was one of my first longer walks around my neighbourhood (about 20 minutes) and I came back to my apartment house feeling extremely potsy, sick, nauseous, dizzy, etc. I was really afraid If I could make it back to my apartment. However, in front of the entrance door to my house I met a neighbour. Not now, I thought to myself and really panicked. Anyway, she started a conversation, and I joined. We talked for 5-6 minutes - and I actually started to feel better and better... In fact my symptoms didn't really go away, but being distracted helped so much. I finally came back to my apartment and felt very happy, relieved, and proud of myself...

Definitely yes!! I experience it every day, how much difference psychological factors make... When I was very sick and started to walk again outside of my apartment house, the further I walked away from the house, the more "potsy" I felt (but not just the feeling, also the heart rate!!). Already after 3-4 minutes I was often in fully blown panic... When instead I just walked up and down in front of my house, I could walk up to 15-20 without any worsening of symptoms (and without rise in heart rate!!). Don't get me wrong: POTS/dysautonomia is by no means a psychological illness. But if you have it, it can severly damage your mental strength.

Hi Amy! I do like biofeedback with deep belly breathing very much too - but only when I am lying down really flat, then it is wonderfully relaxing. However, when I try to deep belly breath when I am upright (standing, walking) I get presyncopal almost immediately! Especially the breathing out leads to shudders through my belly... Therefore I always do a very, very shallow and extremely slow (!) breathing when I am upright. That keeps my HR slow too. (mostly). Did you also experience this extreme difference with deep belly breathing and posture? Best wishes for even more improvement!!

Best luck for further diagnosis!! It's the key for any further progress!!

Ok, I see - so what kind of information did you get concerning your underlying cause? As you mentioned that you have secondary POTS.

So wonderful and encouraging to hear!! I wish you a steady progress, back to full health!!! Just one question: You mentioned venous insufficiency - did I get you right that this condition is underlying your POTS? I have a high risk for venous insufficiency from my maternal line, detectable back to my great-grandparents; no doc ever ever tested me for it, nor did the POTS docs mention a possible connection with POTS. But maybe....?

Status report after one week of scenar use: It didn't do any "miracles", but some effects are: - A kind of better "general feeling", difficult to describe. More energy, less fatigue, not so often feeling of "jelly legs". Yesterday I went for a walk for 40 minutes - couldn't do that for half a year. - Definitely less pain in my legs. Both in general as well as after being upright (including sitting). - The moons on my fingernails are coming back! This is of course nothing that improves my quality of life - however, it is a surprise and I guess (hope) it should mean something, as the moons disappeared when my worst POTS flare started last summer. So, scenar is surely no "fast miracle cure". But at least for me it shows (positive) effects. I will continue to treat myself with it.

I actually would like to know why this very uncomfortable symptom is connected with dysautonomia - and what we can do to adress it! Occasionally, this is the most debilitating symptom for my every day life, everything else I could handle... :-((

Your story sounds almost literally like mine... That's exactely how my dysautonomia flares always started...

I still don't use a wheelchair (though I would, far away from being too "proud") - at the moment, I am in a state where I feel much better when I am standing/walking (though not for very long times) instead of sitting. When I walk short distances, I feel even close to normal. When I have to sit down, I start to feel nauseous and my legs go numb and achy very soon. So strange, how symptoms are changing over time...

Had my first scenar-treatment session today. Interesting experience, the feeling was actually calming and very pleasant. Afterwards I felt fresh and powerful, but it seemed to wean off after 2-3 hours. However, the therapist told me he isn't really sure he can help me and in case of a chronic autonomic condition it may take up to 10 treatments to see it's full effect. However, after 2-3 sessions a clear and stable effect should be there. I will give it a try.

As far as I understood it, this device is both a diagnostic and a therapeutic Instrument. It should be able to detect, whether the ANS is on overdrive (and in that case calm it down) or is running to low and then stimulate it. It's main purpose is to create autonomic balance, where this is out of balance. I am so curious for my first treatment - but will only believe all that when I feel any improvement.

Interesting with the tingling hands, never had that. But the soles of my feet get very tingly. And yes, BP and HR goes down afterwards, which is not bad...

Will have my first treatment on next tuesday and will give a short report about its effect!

Don't know yet - but it seems to be available in most countries. I was told that there is a version for the use by medical professionists and one for "private use". The latter is said to be smaller, not so strong and cheaper. However, I haven't found any info about costs yet.

Physical exertion of any kind is not easy to handle for me - that includes this issue too... However, I am really puzzled by one fact: Whenever (no exception!) I get very potsy from physical activity (just "normal" ones), right afterwards my libido gets literally on overdrive. There must be a kind of biochemical process triggering this. No doc ever could give me an idea about the cause, everybody was very much surprised... And I personally don't like this phenomenon at all, it really bothers me, to be honest...