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Goschi
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Hi Goschi,

I hope your extended hospital stay will give people insight into what is happening and how you can be treated. One thing that has helped me is deep breathing exercises. POTS and syncope can cause anxiety, as you have discovered, and that can cause hyperventilation which will make you feel even more faint. See if you can think calming thoughts while breathing in and out deeply and slowly. This may be hard at first, because some of us have air hunger. But, if you keep with it, you may see that it helps. My doctor has given me a device to help facilitate deep breathing called EMWave2 HeartMath.

Wishing you make progress everyday. Hang in there!

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Hi Goschi,

Sounds like your hospital stay is beneficial, if for no other reason than to learn more about how your body reacts in certain situations and to certain medications. I personally couldn't handle florinef for all the side effects; for me, the worst was migraines.

I believe I also have the psychological element. Have you ever been diagnosed with anxiety and/or panic disorder? I've been diagnosed with both, but it seems like they might act in conjunction with the POTS. Like, I might have a sudden, small burst of anxiety (like a normal person) but then it feels like it triggers an adrenaline surge from the POTS and things start to go downhill from there. I think it's difficult to NOT have some anxiety or psychological element though, especially when you've had public episodes and have been dealing with symptoms for a long time. We're right there with you! I look forward to reading more about what you are able to find out.

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God, I've edited and rewritten this post and then 'lost' it so many times that you think I'd have something profound to say. I don't. LOL.

I don't think there is a person walking this earth that doesn't have psychological issues -- not even the Dalai Lama. And anxiety comes hand in hand with POTS for so many of us. Like myself, many people have received a mis-diagnosis of anxiety disorder before being diagnosed with POTS. I think anxiety might be the most common misdiagnosis in the case of POTS.

I suspect that if you find yourself walking next to the doctor without a wheelchair in sight, that if you give yourself permission to sit on the floor If you need to, your anxiety levels will drop. And if you need to sit on the floor your doctor is certainly not going to be surprised. I find this with myself. I'm more anxious when there is no where 'suitable'place to rest when I'm feeling potsy. i think that is probably a very normal reaction. Less anxiety about face planting, (luckily I don't do that, knock on wood but other symptoms make me feel very ill), will not add to the effort of walking and standing with pots, which is hard enough already without the anxiety.

Sometimes benches and chairs one can find, if lucky, to sit down on when overcome by symptoms while walking and standing aren't all that great for me because my feet are still down. I'm actually having to 'relearn' that it is okay to sit on the ground if I need to. I was quite comfortable doing that on the rare occasion and then I became very concerned about 'causing a scene' and 'drawing attention to myself' if I found I really need to sit down on the ground in a building or in the street. I'm relearning that it's okay to do this if I need to. Giving myself permission takes off that added layer of anxiety.

Practice at measured calm breathing, as Ice Lizard also suggests, is very effective at calming me. I just need to practice doing it more often. I used to practice all the time but I got depressed and doing the things that are good for me just seemed too hard. I'm picking up those things and doing them again. Slowly and often almost unwillingly but I'm getting better at doing good stuff for myself, once more.

blue

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Hi Goschi, I have a very mottled look to my legs when I stand up for a while too. It almost looks like polka dots or a fawn's back when it's very bad. My doctor thinks it's just from autonomic dysfunction and has noted it on his parkinson's patients who have standing hypotension. Interestingly, when I was taking florinef my legs were merely sunburned looking from blood pooling rather than mottled. I looked at this as an improvement! It suggested to me that hypovolemia is at play for me. I've had low blood volume for years before even getting POTS, but recently haven't had the extensive testing that others have had because other debilitating health issues are keeping me stuck at home and in bed, so I'm not sure if I have an autoimmune component or not.

But compression stockings and fluids are my best friends right now and I can manage standing and sitting long enough to do the some of the basic necessities of life. One thing that has helped me sit comfortably for an hour or so at a time is the knees up position. I typically do this in a lounge chair where I elevated my feet only a few inches so they're still very much below my hips, and then wedge a pillow below my knees. I have no idea why but I can sustain this much longer than sitting in a normal manner. I'm still very much upright! Not sure if you have tried this or not.

I think blue has some great advice toward dealing with the psychological issues. Also realize that fear, dealing with the uncertainty about your future, dealing with loss, changing roles in your life are all stressors for anyone with a chronic illness on top of the physiological causes of anxiety in POTS. It's a good thing to recognize this.

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Hi Goschi...I just saw pictures of something called livedo reticularis which looks "mosaic". Is this what your body looks like? It seems to be more related to circulation not getting to the surface of the skin rather than the blood pooling scenario. Just curious. Hope you are doing better!

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Thanks again very, very much for everyone's kind messages! It is so encouraging to know I have the support of dinet!!

As for the "mottled skin" on my limbs, my docs still don't know what do say about it, just that it's definitely an issue of blood circulation right under the skin.

It doesn't really look like livedo reticularis. About 30% of the skin on my limbs looks totally normally. The other 70% appear in a bright red. But this red area is interspersed with an irregular pattern of lots of very white circle round patches in the size of large coins. All that only happens, when I stand for some minutes. It won't appear when I walk, sit or when I am supine. Very strange, especially that all the docs have never seen something similar.

As for the psychology: Of course I know about the psychological impacts of this chronicle illness and its impairments. I simply didn't expect the severity of the hallmark pots symptoms to be so directly related to psychology at times...

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If you just have POTS and nothing underlying that could be causing it, that will be so much better. My husband and I were were so hoping that this was the deal with our son.

Have the doctors let you know about any other test results? I know that some of these results take awhile to get back and waiting is the hard part. Have they asked you about family medical history? That's one thing our cardiologist did in the beginning because heart disease runs on my side of the family. I'm hoping I did not pass thoses genes on to anyone in the family. I have wondered though if POTS was a gentic thing but can't find to much research on the subject.

In adults, our cardiologist strongly believes there is some underlying causing POTS but he would rather work with the kids because they normally out grow this stuff. However, I know there are several people on this forum that had these symptoms in their teenage years and have not outgrown it yet. Which is quit concerning.

Hope today goes well and that you get some answers soon. Keep posting and enjoy the food.

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I get the same mottled appearance on my feet and sometimes legs if I'm standing for a few minutes or especially after a shower. My doctor told me this is common in pots because of the blood pooling but didn't go into specifics. If you google " acrocyanosis and POTS" there are several articles that come up describing skin changes seen in POTS, and a few pictures too. Maybe you can show this to the doctors. Midodrine (10 mg three times a day) and elastic knee high compression stockings have helped lessen this in my case, but it hasn't gone away completely. I keep my feet elevated when I'm sitting down too which can help. I hope you find some answers!

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Hi Clb75,

thanks a lot for your detailed thoughts on the mottled appearance of our legs!

I asked the docs here about acrocyanosis and the replied that the darker part of my skin is "not bluish enough" to be this. In fact, the darker areas of my skin are rather a very light red, almost going into pink sometimes.

The pics on the net also don't really look like what I have on my legs...

Unfortunately, I don't tolerate compression stockings. When I wear them, I have almost no feeling in my legs and thus walking becomes practically impossible.

I am now on 2,5mg midodrine four times a day - it still helps a little bit, there's no doubt. But I am a little disappointed though, I expected a more significant difference, to be honest...

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It doesn't really look like livedo reticularis. About 30% of the skin on my limbs looks totally normally. The other 70% appear in a bright red. But this red area is interspersed with an irregular pattern of lots of very white circle round patches in the size of large coins. All that only happens, when I stand for some minutes. It won't appear when I walk, sit or when I am supine. Very strange, especially that all the docs have never seen something similar.

Here's a pic I took of mine -----> http://i.imgur.com/nR6JyWOl.jpg

Is it similar to what you have?

Mine disappears almost immediately when I put my legs up, as well. I'm sorry you can't tolerate compression wear.

I hope that they find out what is causing your POTS. Keep us posted.

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Thanks a lot, xRobin, for the pic!

And yes, it looks very similar to mine - though not completely "identical", this is definitely the same phenomenon!

However, my docs here in the hospital say this would neither be livedo reticularis nor acrocyanosis, but "something else"...

Does yours disappear as well as soon as you start to walk or sit down? Mine becomes only visible after 2-3 minutes of standing still.

Hope you are doing fine, best wishes!!!

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Yes, Goschi, mine also appears after a few minutes of standing and disappears when I walk around, cycle, or elevate my legs. I get pooling in my legs when I sit but it's not spotty, more just sunburn red with purple toes which I believe might be acrocyanosis.

My doctor says it's "vascular insufficiency" and we joke that I could be an extra on The Walking Dead, gross! I'd be interested to know if your doctors figure out what it is. It doesn't seem very common though I did see a thread on here once where a few people referred to spotted pooling.

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Hi Robin, I just realised that also my feet get red when I sit (tough not spotty too!) but the rest of my leg's skin keeps it's normal colour.

My docs here in hospital seem to no longer search for explanations of this phenomenon and concluded to call it "autonomic dysregulation".

LOL.

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Robin, one more question concerning your skin discoloration - does it correlate with the severity of your POTS-symptoms?

I recently understood that as long as this "pattern" won't show up on my legs, I don't feel too symptomatic. On the other hand, whenever I feel very potsy, my legs will already have started to develop this "crazy mosaic". So there must be a very, very close connection between POTS and this leg skin phenomenon.

What about you, do you also experience the correlation between mottled legs and feeling very potsy...?

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Goschi, I've had the mottling since onset and I don't seem to get good and bad days with POTS, it's just the same all of the time for me so I mottle any time I stand! (Except when I was on florinef, that helped the mottling but I still had pooling.)

I have experienced a gradual reduction in some of the POTS symptoms such as chest pressure on standing and sitting, and some of the dizziness. But the orthostatic tachycardia, lighted headedness, agitation, poor concentration persist. I also have terrible circulation now. My feet are always freezing, even in summer.

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  • 2 weeks later...

Once again I would like to thank everybody for his/her kind supportive messages when I was in hospital!! It really felt so good to know having this forum as a strong source of feedback and strength! Thank you all so much!!!

I am back home since yesterday. I didn't get any clear answers about the cause(s) of my dysautonomia, which makes me quite sad atm. I only got the following diagnosis:

"Severe autonomic dysregulation, probably of central origin with possible peripheral involvement."

The docs then listed my Pots, my SFN, my mild sleep apnea, my pathological IBZM-Spect, some minor neurological abnormalities - in fact they simply summarized every test result that I got during the last 17 months. I could have done that on my own, I wouldn't have needed a 4week hospital stay now...

The only "new" results were that my physical abilities fluctuate from day to day and that my cognitive abilities are excellent when I am supine and immediately drop when I am upright. Oh, what a big surprise...

I guess, I need a couple of days to rearrange my thoughts and my overall strategy as I feel (once again...) jerked around by the medical profession...

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Goschi, thanks for following up. I was really hoping you would have a lead to follow that would lead to a treatment and I'm sorry this lead to frustration for you rather than answers.

That makes sense about poor cognition on standing. I told my cardiologist that I feel stupid when I'm upright, and he jokes that we lose 20 IQ points when we stand up!

What is IBZM-Spect? Is that a brain SPECT scan? I had one of those as well, many years ago, prior to POTS and had abnormal results.

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Hi, Robin!

I did get some treatment from the hospital - I take midodrine since and it actually helps "somehow". But it doesn't make the "big difference" the docs expected...

Oh yes, I lose at least 20 IQ points when standing, probably even more. However, my cognitive ability is good when I am sitting - didn't expect that, as I feel very brain foggy...

And yes, an IBZM-Spect is a brain Spect! If a kind of Parkinson is suspected, they usually do a DAT-Spect first. This one came back totally normal. In that case, they don't perform the IBZM, which is intended to make the diagnosis more precise. However, my IBZM was already scheduled and therefore they made it too - and bang, came back pathological! Which is per definition impossible with a normal DAT-Spect. At least that's what all docs told me up to now. So I (or rather my IBZM) remain a sheer miracle...

But maybe the same happened with your Spect?? Do you still know, what type you had done? Maybe we are the only 2 people in the world having "impossible" test results...? ;-))

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Hi Goschi,

I'm not exactly sure what kind of SPECT I had! It was done about ten years ago and I don't know what the protocol was for them then. I wasn't offered a "type" of SPECT so I didn't even know there were options.

A friend of mine is in nuclear medicine and she read my report, and said whatever I had was weird so she gave it to a friend of hers who specializes in SPECT and he also said it was odd. I was worried about lyme disease and they said it wasn't typical of lyme.

How did they even explain your results??

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I would not be ignoring those results either. This test indicates something autoimmune is going on. Have you been checked for lyme or coinfections?

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Yes, I have been checked for lyme and coinfections, everything came back normal.

But that a positive IBZM-Spect indicates something autoimmune going on, is a pretty new perspective on this test - do you have any scientific articles on IBZM and autoimmunity? I was always told it's "only" about Parkinson's and related diseases...

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