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Posts posted by Goschi

  1. Hi Corina! Do you have it with your arms too...?

    And what do you mean exactely by "raising" legs? Just raise them as ballet dancers do? Do you bend your knee, when you raise your leg?

    When I sit down, my legs are pale, also when I lay down or walk around - they only turn red (rather mottled red/white/yellow) when I stand motionless in place for too long.

  2. Did anybody notice that if you raise just one arm and leave the other one dependant, the skin of the raised arm/hand gets extremely (!) pale (almost white) compared to the dependent arm after only 3-4 seconds...?

    Maybe this is a pretty normal mechanism in everybody (also healthy people) but I only realised it now... It looks freaky, to be honest...

  3. Is my impression right that most POTS patients who take midodrine (and can tolerate it and feel a positive effect in general) need to increase the dosage over time?

    Does this mean, this med makes you addicted and drives you into tolerance after so time?? I would not be so fascinated about that, to be honest. I'd rather quit taking it asap if this is what happens!!

  4. Consider a DAT-SPECT as well as an IBZM-SPECT of your brain. If both (!) would come back positive, there is a relatively high probability of MSA. However, the specific clinical signs have to be present too.

    Dr. Gregor Wenning from General Hospital in Innsbruck/Austria is one of the world's best specialists of this disease. You may get in touch with him (sending him an e-mail, also trying to reach him on his office phone), he will answer patients from abroad!

    You can also find some webinars held by him on youtube!!

  5. Hm. I guess, I understood it too - so I know I do have dysautonomia, good statement, gjensen! ;-)

    But I am the only one who thinks that this is in fact a very, very problematic article/study...?

    1) They pretend to have found "structural brain

    abnormalities" in POTS patients, which are

    responsible for the autonomic dysregulation,

    we experience. (to summarize it a bit


    If this turns out to be true, it would be quite

    a "revolution", as it transforms or condition

    from a predominantely functional one into a

    basically organic brain illness. Wow.

    2) These "brain abnormalities" also predispose us

    to get anxiety and depression. This is even

    more revolutionary. In contrast to all recent

    findings, our mental/psychological symptoms

    are not a mere reaction to what we experience

    physically, but instead again "built in" in our

    structurally abnormal brains??

    As a consequence, POTS as a whole will have to be redefined as an "organic brain illness"? The physical processes are a result of abnormally structured brains. And our "anxiety" is again just a result of "brain structures"? So it is finally proved that actually everything is literally in our heads??

    By miracle the physical process as well as the mental symptoms are just caused by our abnormal brains...?

    So - just forget about Ehlers-Danlos, MCAD, Small fiber peripheral neuropathy, Sjogren's, other autoimmune causes, etc. etc.??? The whole thing is simply caused by abnormally structured brains?

    If this would be true, the study (11 Pots-patients in it!) would smash every theory about the wide range of possible underlying causes studied during the last two decades.

    I can't remember having read such an overall nonsense about POTS since I started reading thru medical literature on dysautonomia.

    When I read this paper now, I permanently wondered whether I should laugh or cry. For psychohygienc reasons I chose the first option!

  6. Thanks, Nymph, for the links! Didn´t know any of them!

    I should really pursue my Sjogren´s diagnosis, I guess... Up to now, I do have a pathological test for dry eyes, a pathological test for the parotis (too little saliva produced) but lab tests all came back normal, as well as no sign for arthritis - however, I have SFN and POTS, so altogether it should be worth undergoing the lip biopsy. Problem is I didn´t yet find a doc here who is willing to do it. They all don´t take the dysautonomia as a possible part of the whole picture into consideration... :-(

    The next question would be about treatment options - usually only the sicca syndrome is treated. That´s not what really bothers me, to be honest, I didn´t even notice that I have dry eyes and not enough saliva.

    I would "simply" be interested in treating the dysautonomia caused by Sjogren´s, but that seems to be another challenge...

  7. @sunshinegirl: I think, you are totally right - who actually knows whether one condition causes the other at all? Docs seem to be not at all sure about that! And you are again right about the "1000 piece puzzle" - I

    too have MTHFR (proofed!) and probably MCAD in addition to POTS and SFN. Alle those conditions MAY be connected together, (probably they are, I guess) but what actually causes them ist mostly

    unknown - especially (!) to the medical community... So we have to go on researching on our own....

    @Nymph: You also describe the re dilemma quite well... Btw, you seem to be one of the rarer cases here on this forum who has Sjogren´s (?). Sjogren´s is often mentioned in medical literature as a possible

    underlying cause for dysautonomia, but in different dysautonomia forums one only meets Sjogren´s patients very rarely. Do so many of us get undiagnosed? Anyway, treatment for Sjogren´s should be

    available, what kind of problems are you experiencing getting treated...?

  8. Thanks to everybody's feedback!!

    I was also tempted to believe that SFN means you could have general autonomic neuropathy which eventually causes POTS. That sounds quite logical.

    However, it doesn't fit at all with my personal timeline. My first POTS symptomes date back to 2011 (maybe even 2010).
    In 2013 my POTS finally reached it's full flare, yet still undiagnosed. At the same time, I had my first skin biopsy for SFN - negative! A couple of weeks later I eventually got my POTS diagnosis.
    6 months later I had my second skin biopsy - "borderline" SFN! Shortly after that, my POTS started to slightly improve. Another 6 months later, my POTS was definitely improving more and more. At the same time, I got my third skin biopsy - now definite SFN!
    Today my POTS is still improving and I am on good way to recovery I would say - however, I do have clear SFN...
    And the POTS recovery can not be due to meds, ("masking" the neuropathy) as I am tapering down all of them (which even helps me more!)

    So, in my particular case, POTS definitely preceded the SFN - and today I have mostly recovered from POTS, but seem to have full blown SFN - I actually experience the various symptoms of neuropathy in my legs (pain, tingling, numbness, etc.).

    Being very confused - any ideas/experiences from anybody...?

  9. Hi folks,

    I am among the 50% POTSies who have small fiber neuropathy along with my dysautonomia. So far, so "good". I just read through the numeous studies I collected about this issue and realised that there is already no doubt about a clear connection between both conditions.

    But reading the studies again, I started to wonder that I never found particular any remarks about whether the small fiber neuropathy is the (possible) cause of POTS - or maybe just the other way round, POTS may actually cause SFN...? Does anybody know about studies or other medical Infos where docs say more than that these two conditions are "connected"....?

    Thanks in advance for any help!

  10. Hello Michele,

    I am so sorry to hear you are undergoing this terrible thing!! I personally can add the following from my personal experience:

    I had EXACTELY what you describe for about 5-6 months in spring of 2014, when my POTS was at its worst ever. I simply couldnt lead and follow a conversation. No listening and no talking without getting symptomatic within minutes. Neither person to person nor on the phone. The symptoms I got were strikingly the same as yours: At first lightheadedness and a strange feeling of being "overloaded" in my head, very soon followed by heavy internal termors, extreme "nervousity", severe chills and teeth chattering! I too had to avoid eye contact. I had to excuse myself from conversations so many times. At some occasions I wasn´t even able to talk to docs in hospital für 3-4 minutes without getting theses symptoms. Talking/listening made me feel "overstimulated" in general. As a consequence, I couldn´t watch TV or listen to the radio - just the same symptoms within minutes....

    Luckily, these symptoms went away when my POTS cleared up slowly since fall 2014. But I still feel that conversations longer than 2-3 hours could make me symptomatic in that particular way (though much less intense). And it still gets better and better now.

    Last but not least, there´s something you mentioned and that caught my attention immediately: You say taking a small dosage of xanax sometimes helps at least little bit. I too was taking (and finally tapering) a benzo. I first took xanax then changed to diazepam and finally tapered that slowly. Exactely parallel to this, my POTS flared and especially the terrible conversation-thing started... So, my idea: Did you change your dosage of xanax recently? Or could it be that you are actually in "tolerance withdrawal" (=taking the same dosage as usual but actually your body would start to need more...?). Xanax in particular is a benzo with a very short half time, thus you may be getting into "interdose withdrawal" regularly.

    I actually emphasise this benzo thing, because your symptoms don´t seem particularly typical for POTS, but rather sound strikingly like what people experience who withdraw from benzos - you can read literally hundreds of experiences exactely like yours on benzo-forums (like benzobuddies.org f.e.). One of the worst symptoms the members report is the inability to lead a conversation, followed by the symptoms you describe. In addition, tapering benzos can flare up (or even trigger for the first time!) POTS/dysautonomia. So you may look into this issue as well...?

    Anyway, this symptom will go away, don´t worry!! I send you much strength and energy!!

    Best wishes!!

  11. dizzyallie,

    I am really sorry that you had to experience this annoying appointment... It always costs so much energy to deal with - while you are there and afterwards...

    I guess everyone here on this Forum has had similar experiences. However, in the english-speaking world, at least the condition "dysautonomia" seems to be accepted in general, as far as I could see. In my country, no doc at all would know what you are talking about when you tell him/her, you have "dysautonomia". "What´s that?", would be the usual answer. If I say, I have POTS, almost everyone gets it immediately, especially the younger docs. Also "PAF" (Pure Autonomic Failure) would be an accepted diagnosis, but "dysautonomia" - no. Besides, I haven´t heard about just one doc here in Austria who "believes" in the existence of CFS... No patient ever would get this diagnosis here!

    So, despite your disappointing experience - just know that I can even be worse in other parts of the world... And now simply forget about this doc - he isn´t worth it being angry about him, just go to another one!!

    Best wishes!!

  12. Yes! I did this to work up to more strenuous exercise. The Wii is great, and so is doing circuits- jogging for 30 seconds, walking in place for 1-2 mins, etc. Whatever feels comfortable. I also love this indoor jogging video:


    You can easily slow to a walk and tailor the workout to fit you :) And I like the instructor's style a lot.

    Thanks for the link, I will look at it as soon as possible!

    And folks, do you know what!? I recently discovered that jogging in place (for the time being only for a couple of minutes) is able to lift up my brain fog!!

    I realised this totally by chance some days ago when I was brain foggy - after 3 minutes jogging the fog was gone! When I slipped into a slight brain fog yesterday, I immediately started to jog in place (in my office, luckily alone ;-)) - and again the fog was gone right afterwards!

    May have to do with better blood circulation to the brain, I am still not sure - I just know that I like this simple measure against brain fog quite a lot!

  13. I took 1/2 Aspirin yesterday and today, simply in order to try out - fortunately, I didn´t experience any bad things around my POTS - in fact just the contrary, I have the feeling that most of my dysautonomia symptoms got significantly BETTER! (every time about 30-45 minutes after I took the Aspirin). - Whatever this might mean now...?

    Anyway, I consider to take 1/2 Aspirin daily for the next days and see what happens. Maybe I am the only person in the world for whom simple Aspirin might be the wonder cure! ;-)

  14. I borrowed the whole DVD-set from a friend (who used it for another issue).

    I watched the introductory DVD and the first session - I personally am rather skeptical about the whole approach, to be honest, and in particular concerning dysautonomia/POTS.

    However, as we all seem to have completely different underyling causes to our dysautonomia, I wouldn´t rule out in advance that it may help someone though.

  15. I tried jogging in place playing on the Nintendo Wii Fit, it gave my symptoms as if I were actually jogging. If you're able to build yourself up I wouldn't see why this wouldn't work. For me after playing on the Wii for some time I ended up lying in bed for hours, I just didn't have the strength to keep doing it, I gave up, but hope to try again eventually.

    If you like to start again - do it very slowly!! Start with maximum 10-15 jogging steps a day (!), look if you can tolerate and establish this for some days. Then maybe go up to 20-25 steps, again keep this for some days, etc.

    I guess, everything more/faster could be too much!! Good luck!!

  16. Nintendo Wii Fit would be another interesting thing to try out - but maybe that's more strenous than simply jogging...?

    However, I already started to try jogging in place at home. I can easily tolerate 5 minutes, I am not short of breath afterwards and my HR never goes higher than 110! (usually 90-95 when walking or standing, 75-80 when supine).

    I will now try to extend my jogging time very slowly.

  17. I recently decided I want to extend my physical exercise program to some more challenging things.

    I think about Jogging, but I don't want to risk too much and therefore only start to do it at home for safety reasons. My question: Does jogging in place makes sense...? Did anybody start with this and finally went over to "real" jogging in nature...?

  18. Thanks to you all, folks!!

    In the meanwhile I tried updosing as well as tapering midodrine (i.e., I went from my usual 5mg per day slowly up to 7,5mg and also slowly down to 2,5mg).

    In both cases I didn't notice ANY difference... Just as I expected. Don't know what to do with this, will have to think about it.

    (Docs are not really helpful though - two of them recently told me I should get rid of midodrine, as it is not thought to be useful in POTS, only for other diseases... LOL !!)

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