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I am in hospital right now (since 10 July). The original main purpose was/is to find the underlying cause of my POTS.

Up to now, the docs didn't really succeed, however some diseases were ruled out at least. (Morbus Fabry, Morbus Wilson, Multi System Atrophy, Thyroid issues).

Parallel to the tests, they started me on different therapies, in order to see how I react to them - this might also be of diagnostic value.

I now take 2,5mg midodrine 3 times/day and will start with 0,05mg Florinef today. In addition, a slight exercise program (recumbent bike) was started.

I have to say that the midodrine gave me some improvement. My "general malaise" is better, I have less brain fog and I can stand and walk for longer periods of time.

However, what I don't understand (docs don't either...) despite these improvememts, my legs and lower arms still show the typical, extreme mottled skin pattern. No doc has yet had a clear explanation for what this actually is, they still confine their statements to "must be a sort of autonomic dysfunction" (really, is it???)

Anyway, I am very curious (slightly optimistic) whether I will leave this hospital in a better state than I came in!

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Hi Goschi! Sorry to hear about hospital but glad they are trying so hard to help you. Have you had a hemodynamics test to check for blood pooling? (I think that is the name of the test I had). Mine showed pretty extensive pooling and the midodrine seems to be helping me quite a bit. Feel better!

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I hate hearing you are hospitalized and for 9 days and counting yuck! It sounds promising that you may be better off when you leave. They seem to be really trying, that must be encouraging. I wish you much luck and that you will be released soon with answers and a good treatment plan. Stay strong!

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Hi Raisin!

My hospital stay was planned, so I am in general happy to be here, hopefully getting some more answers.

I haven't had a hemodynamic test and I am not sure whether they can do this here - the docs never mentioned it.

But I guess, they are sure that I have blood pooling, it seems to be common with pots (?)

What dosage of midodrine do you take?

Do your leg's skin look very much mottled when you are upright?

Best wishes!!

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Just one more question about Florinef - took the first one this morning and do feel strange: Jittery, slightly confused, agitated in a very unpleasant way...

Anyone else experienced this? Does it go away...?

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Yes! I dont take florinef anymore and it's been years since I have taken it but I do remember when I first started it that I felt that way. Maybe because it is a type of steroid I believe? That is a frustrating feeling when you want to rest but cant. For me the side affects went away over time (though I cant remember how long it took). Since you are in the hospital maybe you could see if they can help ease the side affects for you. I think my doc had lessened my dosage and slowly worked me up to help, if I remember correctly. It would be worth letting the nurses know though so they could tell your doctor and see if they can make adapting to it easier. No fun bouncing off the walls while confined to a hospital bed I imagine!! Sorry you are having to go through that!

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Goshi,

It sounds like you are in good hands. I'm glad they are trying new therapies for you. Hang in there with the Florinef, it's a steroid so it took its toll in the beginning on me. Also, I experienced an inital worsening of migraine and raised diastolic pressures.

Best of luck to you through this journey, I hope you find answers and peace with your symptoms.

Take care,

Sarah

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Have they ruled out autoimmune causes?

My legs and feet commonly turn mottled if not outright purple from neuropathy. My hands also turn mottled and my fingers will turn white and lose feeling - especially in cold weather, in a cold store, or if I don't wear gloves when I handle frozen food items.

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Thanks very, very much for all of your kind supportive and so much encouraging messages!

Up to now, I don't have any clear results from the numerous tests; especially those for autoimmune issues seem to take a while.

I wish you all a bright and happy summer day!!

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Today I realised something which I really don't like at all in the context of my dysautonomia/pots.

Since a couple of days, a physiotherapist is walking with me along the hospital corridors. She always has a wheelchair at hand, in case I need to sit down, she offers me to lean on her, whenever necessary. I never need any help, I simply walk without any problems and feel strong and safe.

But today, a new neurologists came to me and wanted to take a look at my gait. She walked along the same corridor with me - but no wheelchair, no offer to help me. And in fact, I was feeling shaky, trembly and very, very potsy...

Though I strictly dislike today's insight, I have to admit: There is definitely a psychological element within my pots. This was definitely not the case when I was already symptomatic and undiagnosed, and also not during the first time after my diagnosis (1 year ago).

But now, after a one year rollercoaster with pots, including lots of near-syncopes in public, numerous trips to the ER with hypertensive crisis, several unsatisfying hospital stays, the struggle of every day life - now, a psychological component has in fact become part of my whole condition.

I hat this finding!! But I have to accept it...

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Hang in there Goschi. You will get some answers soon.

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Hi Gosch! Sorry it took me so long to reply! Interestingly, my skin does not get crazy mottled looking even though I guess 40% of my blood was pooling just upon sitting up and not standing yet. I do notice it sometimes but not alot. But, I know many others talk about this all the time as a symptom of blood pooling. I started taking 2.5 mg of Midodrine 3times a day and now I am up to 5 mg. three times a day. So far, very helpful for me I think.

Don't feel too bad about the shaky thing in the hallway. I talked earlier about how I think I have some "white coat anxiety" now. The docs are starting to make me nervous! Ha! It is very natural considering the pathways that alot of us have been on. Keep rocking it out!

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Hang in there Goschi. You will get some answers soon.

Thanks, Rachel, I am confident I will have lots of medical answers soon, hopefully combined with treatment options.

However, the first answer (concerning the small element of psychology) I already got - luckily, noone from the medical staff here realised, and I definitely won't tell anybody.

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Hi Raisin!

Thanks a lot for your detailed reply - they want to have my on 5mg midodrine 3 times a day too, or at least try to find out, how I would react. 2,5mg 3 times is already helping, no doubt.

Concerning my mottled legs, all docs here don't make a direct connection to blood pooling. And regarding the fact, that my legs look exactely the same with the midodrine (and with my increased physical abilities!) they may be right, also your symptoms don't really support a direct relation between blood pooling and mottled skin.

However, the docs here always sound and look very much concerned, when they see the full "mosaic picture" of my skin... I am curious what kind of answer they will finally have for this.

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My vascular pots doc said he was quite impressed with my test results re the TTT and hemodynamics test. I told him that I always like to impress others. Lol! I guess if we are going to not feel well, then at least we can make it impressive. I am imagining you laying in the hospital bed and a group of docs surrounding you and you yell out, "check THIS out!" impressive, eh?! "

Now that I am thinking about it, my "mosaic" shows up when I am warm. I know I have anhydrosis in my limbs...maybe it is my body's way of trying to cool myself off. I would think the hospital would be quite cool though.

Thinking...thinking...thinking.

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Raisin, that really made me laugh, thanks!! :-))

In fact, some docs here literally exclaimed "check THIS out", when they saw my mottled skin! My "mosaic" only shows up when I am standing (only a slight idea of it when I am sitting and practically not at all, when I am walking).

So, in my case no connection to temperature. Btw, sweating: I developped almost anhidrosis over the last months, but here in hospital I started to sweat again, also on my limbs! Life with pots is just a permanent surprise... ;-))

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The psychological part of POTS is not new by any means but you have to get your doctors to see past this is part. There are so many things that will cause problem. After you are sick for so long of a period and doctors cannnot find a reason for your illnesses they have a tendancy to stop looking and give up. When this happens, you wind up having to look for a new doctor and start up all over with more testing. With my son, it was good to have a physical therapist on our team. My son was seeing her 4 days a week for several months and saw him go down hill after the flu last year. She was able to talk to our cardiologist and neurologist and let them know this is not an anxiety problem. My son would give 110% until he could do no more. My own personal opinion for what it's worth is that more than likely there is an underlying cause for POTS rather you have high or low blood pressure or a crazy heart rate. Keep pushing for answers and keep posting.

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Yeah Goschi, when I am walking (slowly at that), I seem to do better than standing still (as many discuss here). Sending you thought flowers to your hospital room! Glad you got a giggle. Maybe we should charge admission to our rooms for these docs to check us out! A quarter a mosaic......

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