Goschi

Thanks to everybody for their experiences!

I guess I will give it a try next time when I could need an Aspirin - usually only take it, when I have a cold or the flu.

Corina, I can very much understand that you will avoid to fly, that's a good idea! However, I long car journey is sometimes not easy too, so again congrats that you are well enough for planning this!!

Btw, if you want to avoid the Alps, you could choose a route a bit more to the east, going to the Styrian-Slovenian border, than south through the eastern part of Slovenia and then into Croatia. You will never reach higher sea levels along this route (expect finally at the Croation coast, if you intend to go there(?).

P.S.: Glad to hear that you liked Vienna! ;-)

Let's dream! One day you'll come here again, we will meet in an atmospheric coffee house and both of us will be HEALTHY!!! :-)))

Hi atticus and welcome!

I am a guy with POTS too.

And I absolutely second sunshinegirl's thoughts about the validity of the usually reported gender ratio! To be honest, I simply don't believe it.

There may be some reasons for a greater number of females than males with POTS. But the ratio is definitely not 4:1 or even 5:1 as always.

I remember I study that included POTS patients treated at Vanderbilt and a sample of young Austrian (male only) Army recruits being 18-20 years old. In the latter group, The cardiologist here in Vienna found that 12% (!!!) of the male soldiers out of 500 had POTS.

Just wanted to ask - if have a cold or the flu, is it ok for you to take Aspirin? Or would it "push" your body into overdrive?

Thanks!!

Btw, is it safe for us Potsies to take an Aspirin, when having the flu or just a cold? Or would this "push" the whole body too much...?

angelloz and Claired, thank you so much for your replies!!

Now I am somehow calmed that "nothing special" happened to me and that I will finally get over it (hopefully) quite soon.

In fact I tried not lying down more than usual and also exercising as if nothing was wrong - maybe that was my biggest (most stupid) mistake... Even a person, who is generally healthy should get down their level activity when having the flu. At least my GP told me so, and I knew of course he was right.

I was just too afraid of lying down too much, not exercising - so I pushed thru and probably made everything worse. Stupid me.

However, thank you both for the reassurance!!

Best wishes!!

Ten days ago I had a flu (with some fever) for 4-5 days.

Since that time I feel that my ongoing recovery of my POTS hadn't just stopped but actually as if I got a kind of relapse that set me back about 2-3 months in my recovery process. I am really quite angry atm, to be honest...

Has anyone experienced something similar...?

Hm, interesting aspect! I never paid attention to that... When my POTS started to gradually exacerbate in 2011 and 2012, I was at very different altitudes, from Sea level to Vienna (150m) up to 2.000m in the Austrian Mountains. I don't remember I felt any difference, but maybe I just didn't get that fluctuations were due to changing altitudes. A pity I didn't care for that.

@Corina: That's wonderful that are so well that you can make a Journey from the Netherlands to Croatia (flying, I guess!?) - congratulations!!! So nice to hear that you are gonna have a proper summer Holiday!!

Are you going to the seaside? There you can try out the effect of altitude very easily - at the Croation Coast you can go from Sea level up to 1.000m in a couple of minutes in most places!

Hi guys!

It's exactely the same with me! I once experienced a kind of typical presyncope after exhausting myself to much at sports (running a half marathon without proper training before) when I was in my late teens. That was a presyncope feeling as you can read about it in medicine books.

But what I experienced with dysautonomia was something completely different! The symptoms are a kind of "nice" mixture of what statesof, Soskis and Katy reported!

But to my understanding, this isn't presyncope in it's medical defined way! I would rather call it a "pre-POTS-crash" feeling. Needless to say, I never had a real syncope! If that, what we experience, isn't actual presyncope, it will logically not lead to syncope! The latter would be a temporary collapse of blood circulation.

What we get, seems to be much more complex!

Hello to everybody,

I am just starting an "experiment". For the last 10 months I have taken 5mg midodrine per day (2,5mg in the morning, 2,5mg at noon) - just as a kind of "routine"...

Now I am no longer sure whether I still need it, re if it still helps me at this dosage (which is not the same, I know...-)

I am now thinking about either tapering it down completely or even raising the dosage (to 7,5mg per day) - in order to see, which of these actions will bring

any (and which?) results!

Now my question(s):

What daily dose of midodrine is everybody taking (if you take it at all)´?

Did anybody have to raise the dose in the course of time? (Because it´s effect got weaker over time)?

Did anybody taper down midodrine or even left it away completely eventually? (Because there was no longer any difference in how you felt with and without the med)?

Thanks a lot for any replies in advance!

I am wishing a happy and peaceful Easter to everyone!!

I don´t know if low blood oxygen is really common in POTS. I didn´t read much about it, seems to be a neglected issue yet...

However, what I could observe personally, since I do have a pulse- and oxymeter for my fingertip (since 1 year) are relatively large fluctuations in my blood oxygen, which are somehow "irrational".

Sometimes, I may go as low as 90 when I am simply lying in bed. (not sleeping, just being awake und supine). Sometimes the oxygen would go up to 98/99 immediately, as soon as I stand up and walk around and it stays at these normal values as long as I am upright.

On some other occasions, it´s just the other way round - when I was walking for 20-25 minutes and I checked my figures, I was sometimes (definitely not always!) as low as 91/92. Sitting down or lying down would make it go up immediately to 97/98.

I have not the least idea what this different phenomena could mean - my docs never paid any attention, or I should rather say the honest ones among them openly admitted that they find my readings extremely strange, but admitted that they had no idea at all, what it could mean...

Fatigue, pain. periphal neuropathy (feet, legs, hands, arms, trunk and face).

Hi Nene,

I do have (small fiber) peripheral neuropathy in my legs, confirmed by skin biopsies.

May I ask you - which kind of symptoms do you experience from peripheral neuropathy in hands/arms, trunk and face...? And how did you get your re diagnosis for these parts of the body?

Best wishes!!

I feel with you, Bigskyfam! Had a similar experience with my cat a couple of years ago...

Your beloved dog is already in heaven now - feeling no pain, he is healthy and happy!

And he will always gently take care for you from where he is now!

I have it. Very high homocysteine, and already tested positive for MTHFR gene mutation C677T homozygous (=inherited from both parents). 10-15% of the caucasian population have this mutation.

I have high B12, (missing enzymes can't break it down!), normal folic acid. AND: I am almost sure this is the underlying cause of my small fiber neuropathy - which is again connected to POTS!

I am personally convinced, this is an important part of the while picture, it's even on the root level!

(I also don't have any cardiovascular issues - but IBD, benigne heart rate problems and the neuropathy, just like you)...

Sorry, if this question sounds very naive - but how do you know that (and especially when) you have blood pooling? Is it possible to know without specialised tests...??

I really don't want to discourage anybody - especially as we all seem to be different (i.e. I guess we all have different underlying causes of our dysautonomias).

I live in Europe and got Ivabradine very soon after my POTS-diagnosis. It lowered my HR immediately (with no side effects, btw!). But it did nothing for the HR-increase from supine to upright. Before Ivabradine: 80 supine, 125 standing. With Ivabradine: 60 supine, 105 standing. Consequently, Ivabradine did nothing for the whole range of my symptoms.... :-(

Mostly - also here on dinet forum - this "detached feeling" is thought to be a result of cerebral hypoperfusion.

But I also experience that feeling when I lay down for a couple of hours - thus I believe, there must be something "biochemical" going on in us, that creates this state.

I have learned just how little the medical field actually knows about certain diseases/conditions and also that our health is largely dependent on luck.

Sorry if this was not as upbeat as some of the other responses but it is two of the very few things i have learned.

Jon, this is exactely what I have learned. Couldn't have expressed it better - you put it to the point, word by word.

Arizona girl, do you know which particular autoimmune disease caused your small fiber neuropathy? I was diagnosed with it too (skin biopsy), but never found any cause - docs just told me I don't have any autoimmune issues.

(Maybe my MTHFR Mutation and the resp. metabolic conditions are directly responsible for the SFN?).

I took zyrtec for some years for different mild allergies.

To my surprise, when I later on got Dysautonomia/POTS I no longer could tolerate zyrtec (and also other antihistaminic meds...).

Thanks, Bigskyfam! ;-))

I worked as a managing director in a local adult education center from 2002-2013 in one of my cities districts. Now I will change to the central administration of the whole organisation.

I will start to work part time (25 hours/week) again on March 1st. I am very optimistic that I can handle it - I try to "simulate" the process right now. Every day I leave my home and travel by public Transport for 20 min. (that will be the travel time to my office) then I get back home and "work" for 5 hours on my computer. Finally I leave home again and go again for 20 min. by underground, just to go home again finally.

Up to now, this artifical rhythm works quite well. I am not totally symptom-free all the time, but things are manageable. I am looking forward to the 1st of March - hopefully the start of my new life! If things turn out well, I will go on full time work as soon as possible.

Hello everybody,

I am MTHFR homzygous too - only found that out by chance a couple of weeks ago. I have read that 12-15% of the whole Population are.

Could there be any connection to Dysautonomia?

It was very interesting to read that for many of us the overstimulation from lights etc. seem to play a bigger role in driving/riding-intolerance than the "motion sickness".

For me, it was always quite the contrary - when I succeeded in getting focused on the many visual and audio-impressions while driving (riding) it was much, much easier to get distracted from the motion sickness.

In general, I never became "overstimulated" when being in large crowds, malls with lots of lights and noise and the like. Such surroundings always rather "calmed" me down... Instead, I could almost go crazy when being alone in my apartment (laying in my bed) with NO Stimulation from outside.

Again so astonishing, how different we all are...

Definitely yes - when I was at my worst, even 10 minutes driving (as a passenger!) sent me into a POTS crash...

Before I got POTS, I never realised, how much and suddenly your body needs to adapt to slightly new positions when driving.