Goschi Posted March 20, 2014 Report Share Posted March 20, 2014 Hi everybody,this is my first post - sorry for my English, it is not my first language. I am really very glad that I found this forum, it gave me lots of helpful information. I was dxd with hyperadrenergic POTS in August 2013.I do recognize many of the symptoms typical for POTS, but I actually do have some "strange" symptoms, which I am wondering about:1) A very specific type of vertigo, it's like my head is being "hit" from one side to the other. This mostly occurs when I am upright and do have my other "regular" POTS-symptoms, but also when I am supine (!), especially when I am speaking, eating something (chewing seems to make it worse!), or when I brush my teeth. Did anyone else experience this...?2) As soon as I am upright, I do get lots of small red spots (pores...?) on my arms and legs, it almost looks like a rash. These spots disappear immediately as soon as I lay down. Could this be a sign of venous pooling? Most parts of the skin on my legs and arms are very pale when I am upright, it's only these strange, numerous "red spots"...3) Whenever I was upright for a short time and lay down again, my hr goes down significantly within a few seconds - however, I regularly feel a strange kind of "inner vibration" and/or "inner restlessness" for quite a long time, sometimes for hours... Is this typical for POTS, does anyone else experience this even when supine...?Thanks in advance for any feedback!!All the best wishes to you!! Quote Link to comment Share on other sites More sharing options...
corina Posted March 20, 2014 Report Share Posted March 20, 2014 Hi Goschi, welcome to our forum! I can't really help you with your questions but may be others can. Just thought to say hi to you. Oh and your English is perfect don't worry! Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 20, 2014 Report Share Posted March 20, 2014 Hello and welcome! I have vertigo sometimes but not quite how you describe it. Have you had a complete workup of your vestibular system by regular as well as neuro-ENTs? I do get the speckled look in my legs and hands that might be what you are describing and mine is blood pooling for sure. I also feel the inner vibration of pots even when I am laying down. It's an odd feeling but I can't tell you what causes it....just that you are not alone. Quote Link to comment Share on other sites More sharing options...
xRobin Posted March 20, 2014 Report Share Posted March 20, 2014 I think #2 is livedo reticularis. I get it too, and it goes away when I lie down. My doctor says it is a sign of vascular insufficiency and common in his patients with osthostatic intolerance. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 20, 2014 Report Share Posted March 20, 2014 I have livedo reticularis too but it looks different than the color change from blood pooling. Levido reticularis is actually a rash not just a mottled color change that shows with vasodilation. Quote Link to comment Share on other sites More sharing options...
Goschi Posted March 21, 2014 Author Report Share Posted March 21, 2014 Many thanks for the nice welcome and the ideas! I really love to be part of this community and I hope I will be able to give back some support very soon!As for my specific vertigo, I had lots of Neuro and ENT checkups, everything came back normal. Anyway, some doctors ordered further tests, as they believe "something is wrong". I'll have to wait and see.Concerning the "red spots" on arms and legs: I have read about livedo reticularis, but what I have looks different. There is no "mottled" appearance, but just numerous pinhead-sized red spots on the skin, whenever I am upright. (it really looks strange, many people already saw it and asked me, what it was).When I lay down, the spots lose the redness immediately and turn into something that looks like very pale freckles, barely visible. I am sure it has to do something with venous pooling, as it always (and only) appears with postural changes.Again, many many thanks for your ideas!! Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 21, 2014 Report Share Posted March 21, 2014 Hi and Welcome-Regarding the "inner vibration" or restlessness you describe....I remember having that in the past. Not so much recently thankfully. I wonder if it's related to the extra norepinephrine/epinephrine that the body is producing when you are upright to help compensate for whatever it is that is causing your POTS in the first place. Even though the HR subsides, it can take awhile for that stuff to work thru the system I think. I have discussed with my POTS neuro that it feels like my sympathetic/parasympathetic nervous system(s) don't play nicely together anymore. They don't seem to have a smooth mechanism for transitioning between the two or for balancing the two. It seems like it's either all one or the other. His response was "that is pretty much the definition of dysautonomia". So it may be that the inner vibration/restlessness is the nervous system trying to find a balance point after being "stressed" by being upright. As far as the vertigo, I sometimes have the feeling that my brain is moving inside my skull and my eyeballs aren't quite lining up with my eye sockets quite right. Not sure if this is what you are describing but kind of sounds somewhat similar. Quote Link to comment Share on other sites More sharing options...
Goschi Posted March 21, 2014 Author Report Share Posted March 21, 2014 As far as the vertigo, I sometimes have the feeling that my brain is moving inside my skull and my eyeballs aren't quite lining up with my eye sockets quite right. Not sure if this is what you are describing but kind of sounds somewhat similar.Thanks, Chaos, for writing about your personal experience with vertigo! That sounds very scary too, I hope you can feel some improvement about it? Could you find something that helps you with this?I also do have the feeling that my brain is moving inside my skull sometimes, but in addition I have this very strange feeling of "mini convulsions" (can't describe it better...) whenever I make very small head movements. Shaking my head violently doesn't evoke it, much to my and my doctor's surprise. MS is already definitely excluded, I had 3 MRIs and 2 lumbar punctions already. POTS is really such a strange, frustrating condition...All the best for you!! Quote Link to comment Share on other sites More sharing options...
Gemma Posted March 21, 2014 Report Share Posted March 21, 2014 Hi. I also have number 1 and 3 on your list. I still didn't have a test for vertigo, going next week to do it. However, my Neuro said its common in POTS, he called it rocky feeling. Its very enoying. Sometimes its hard for me even watch TV because of this feeling. I also sometimes get it while laying down as well. What ENT tests did you do? Also, are you supposed to have lumbar puncture to check for MS if my 2 brain MRIs came back totally normal? Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted March 22, 2014 Report Share Posted March 22, 2014 Welcome and glad that you found us on this great forum, it is really a blessing for all of us. Yes I experience every single thing you mentioned except for the red spots, mine are there all the time but they get bigger with cold weather. Your English is great, take care. Quote Link to comment Share on other sites More sharing options...
Goschi Posted March 22, 2014 Author Report Share Posted March 22, 2014 Hi. I also have number 1 and 3 on your list. I still didn't have a test for vertigo, going next week to do it. However, my Neuro said its common in POTS, he called it rocky feeling. Its very enoying. Sometimes its hard for me even watch TV because of this feeling. I also sometimes get it while laying down as well. What ENT tests did you do? Also, are you supposed to have lumbar puncture to check for MS if my 2 brain MRIs came back totally normal?Hi Gemma, thanks for your reply! You are so right, this "rocky feeling" is very annoying, sometimes I consider this to be my most disabling symptom. I had "every possible" vertigo test done by my Neuro and my ENT (sorry, don't know all the test names).As for the MS: If you already had 2 normal MRIs, I don't think docs would do a lumbar punction. But of course it depends on your symptoms - do your docs think that some of them could represent MS? In that case a lumbar puncture could be useful. Quote Link to comment Share on other sites More sharing options...
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