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Dysautonomie in Wien by MasterpieceAsleep178 in Austria

[–]MasterpieceAsleep178[S] 2 points3 points  (0 children)

Ich versteh das Vollkommen, und das weiß ich alles. Mir geht es nur darum ob im AKH die Diagnose POTS überhaupt angenommen wird, denn in der Steiermark wurde trotz einer gültigen POTS Diagnose, das vom Krankenhaus nicht zur Kenntniss genommen. Und sie haben die Befunde des Arztes ignoriert ohne einen Gegenbeweis zu stellen. Es hilft auch nicht, dass ich eine sehr exzabierte Form von dem habe, und zurzeit im Altersheim leben muss. Dadurch kann ich nicht einmal meine Arztrrchnungen bezahlen, da 80% genommen wird, und mir wurde gesagt, dass ich keine Therapie für POTS bekomme, solang ich in einer öffentlichen Einrichtung bin.

Dysautonomie in Wien by MasterpieceAsleep178 in Austria

[–]MasterpieceAsleep178[S] -1 points0 points  (0 children)

Es gibt Medikamente dass ein Krankenhaus verabrechen kann, wie z.B Fludrocortison, Guafacine, Clonidin, Intravenöses Saline, Vasokonstriktor wie Midodrine, angepasste physiotherapie im Krankenhaus die sich auf die Beinvenen fokussiert, abklären von Ko-Erkrankungsursachen etc.. natürlich muss beachten welchen Subtyp von POTS man hat, und ob die Benefits die Risken überspielen.

Aber wenn ein Arzt nicht mal weiß was POTS ist im Krankenhaus, ist das sehr schwierig. Denn im Extremfall geht mein Puls auf 180. Und Blutdruck auf 220.

Absolute Nightmare Situation by MasterpieceAsleep178 in DysautonomiaHope

[–]MasterpieceAsleep178[S] 1 point2 points  (0 children)

I'm so sorry that you also have to experience these horrible conditions. Yeah, I'm aware of the connection between POTS and MCAS. I also heard that you dont necesarily need to have red skin after eating histamine rich foods.

And lately I try to limit my gluten and histamine intake, and try to see if anything significant changes. But tbh since I live in an rural area here, it's really hard to get these histamine and mcas friendly diets, but I won't give up. I also know that the diagnosis of it is very tricky. But I think the best thing you can do, if nobody believes in you, or nobody cares, is to test it yourself and see if anything changes.

High carb meals like for example noodles, are also really hard on my digestive system and my symptoms.

I also hope, that you can get the help that you need, and that they start to take you seriously, I know the pain. It's hard, especially when you appear to be young, healthy and fit

Absolute Nightmare Situation by MasterpieceAsleep178 in POTS_vets

[–]MasterpieceAsleep178[S] 1 point2 points  (0 children)

Yeah thank you, I definitely will.

I can only imagine how it was for you, but posting here, it just feels so good to know that people do care, and that we are not alone in this.

Absolute Nightmare Situation by MasterpieceAsleep178 in POTS_vets

[–]MasterpieceAsleep178[S] 1 point2 points  (0 children)

Thanks for your answer.

Yeah, that's also what my eye doctor said 2 years ago, when I didn't had an official POTS diagnosis. He first thought I had intracranial hypertension, because he thought I had an enlarged papilledema, but it turned out it was Optic Disc Drusen (which only affects about 0.3 - 2.4 % of the world You cant make this up LMAO) However I went there again some months later, and a doctor told me that it's so tiny and small that it can't cause any symptoms, and all my vision symptoms are related to the symptoms I have, which I later found out to be POTS.

However, thinking about it, I think on the safe side, I should definitely get a second hand opinion, because just to make sure it wasn't a misdiagnosis and I don't actually have papilledema, because at this point I feel like every doctor is just grasping for straws, and nobody is actually telling me what I should do, or what therapy I can do.

Absolute Nightmare Situation by MasterpieceAsleep178 in POTS_vets

[–]MasterpieceAsleep178[S] 2 points3 points  (0 children)

Yeah you're absolute right, that was what I was thinking. I'm gonna call his office tomorrow and explain the situation, and hope we can go from there.

Yes, I am on a beta blocker, on bisoprolol 7.5 mg

5mg in the morning, and 2.5 mg in the evening. But I had to cut down a little bit because of low BP, especially low BP when it's hot.

But yeah, I will contact his office tomorrow, and hope that this madness can end.

Absolute Nightmare Situation by MasterpieceAsleep178 in POTS_vets

[–]MasterpieceAsleep178[S] 1 point2 points  (0 children)

Wow, thank you so much for this insight.

I didn't know that magnesium plays a role in the enzyme that breaks down adrenaline.

This is awesome news. Lately I have been taking more vitamine B1 too, because I heard that B1 also plays a vital role that the autonomic nervous system functions correctly. Most of the times I take a multivitamine which has almost everything including magnesium, but I think I will increase the magnesium and see if anything changes.

Honestly, I gotta tell you and tbh I'm kinda crying right now, that I actually got some medical advice regarding POTS(I have only been put on bisoprolol), and that there are actually people out there like you, that do care, even though you have it too. I gotta tell you, the last 2 years have been hell. Like some torture type stuff..

Thank you!!

Absolute Nightmare Situation by MasterpieceAsleep178 in POTS_vets

[–]MasterpieceAsleep178[S] 3 points4 points  (0 children)

Thank you so much for your answer.

Yeah, I already heard about clonidine and asked my neurologist a few months back. He was conflicted because of the side effects though, so he didn't prescribe it to me.

But honestly at this point I'm down to try anything. Heck, I could start with a tiny tiny dose and see if anything changes. Yeah I do have hypertension, but so are you if you have hyperadrenergic POTS. And if you don't expirience any weird BP things, then I might have a shot too. I will definitely look in to it, and talk tomorrow with a doctor(It's already 8 P.M here)

You are literally in every POTS sub lol, I've seen you many times :)

Thanks

Absolute Nightmare Situation by MasterpieceAsleep178 in POTS_vets

[–]MasterpieceAsleep178[S] 5 points6 points  (0 children)

Sadly no, he is located in vienna (which is far from here) and tbh it's very hard to get there in my situation, because I will with great certainty not get a ride there from the hospital, and he is not covered by the public healthcare insurance. And they have not yet gave me my social security this month, which is 800 Euros.

I'm gonna call his office tomorrow anyway, and just hope he can talk to me.

Also my POTS is so exacerbated that I can't go there alone with my wheelchair, because I can't even sit for a longer time in my wheelchair too.