Goschi

Hi everybody, I haven't read much about this symptom and wonder if it might be directly POTS-related. Whenever I walk or stand, I feel a very strange "stiffness" of my whole body within a couple of minutes. This makes walking/standing even more difficult than it is already due to dizziness, shortness of breath, etc. I also get severe cramps in my lower legs almost immediately after the first steps of walking. This very characteristic stiffness usually lasts for quite a long time after I lay down. Though my bpm goes down quite fast when I lay down (most of the time), my whole body remains "stiff" and therefore "strained", i.e. unable to relax sometimes for hours... Does anybody else experience this? Are there any explanations for it?

I do have pulsatile tinnitus in my left ear only (wooshing sound with every heart beat). It started at the time when my POTS finally flared up extremely one year ago. As I was only diagnosed with POTS in Aug. 2013, I didn't make a connection. Later on, I thought this specific type of tinnitus may point to a possible underlying cause of my POTS, but I guess this is not very likely.

Most people tell me that I look "so healthy" and express their expectations that I must definitely be on the way to recovery. In most cases they refer to my "healthy-coloured" face. In fact, this is due to my almost permantent "slightly flushed" face, which is actually easy to misinterpret. However, my wife recognizes with one look, how I am doing. She says she needs one short look into my eyes and can tell immediately where I am between "1 and 10".

Hi everybody, while I am sure I do have brain fog when being upright, I also seem to have a slighter form of "fog" when I am supine. Before I got my POTS diagnosis, all my symptoms were regarded to be "in my head" - as so many of us, the only diagnosis I got for years was "anxiety disorder" and "depression". When I spoke about my "foggy mind", the psych. docs told me, I suffered from "derealization". Today I (luckily) know I have a physical condition which causes my symptoms in general. However, I do feel quite "foggy" most of the time when I am lying down. Does this mean, I could actually have "derealization" in addition to "brain fog"...? Maybe this is mostly a question of terminology? The definitions of brain fog as well as of derealization both don't seem very concise to me, to be honest. How about your experiences / thoughts...? Do some of you feel "foggy, when supine? Have anyone ever been told, they had in fact "derealization"...?

Hi artluvr, every symptom you describe seems very typical for a migraine with aura. I do have occasional migraines of that type and can relate to all of the symptoms. There are two things that always help me, when I feel an aura-migraine coming: Eating an apple, and drinking a cup of strong black tea. Wish you to feel better very soon!

Recently I had a scintigraphy of my salivary glands, because a doc wanted to "rule out" Sjogren as an underlying cause of my pots. The scintigraphy's result was clearly pathological, as well as a "Schirmer-test", indicating that my eyes produce not enough tears and thus they are so dry. However, I didn't match all the other tests for Sjogren. Therefore, the doc just diagnosed me with "Sicca-syndrome" and told me, this has nothing to do with my POTS... Anybody had similar experiences...?

Thanks for all the replies and the PMs!! I had the full paraneoplastic panel done and everything came back negative. It was mostly my severe flushing episodes (they always last for a long time after being upright for just a couple of minutes) that lead to the testing. I was tested for mcad too, again negative. So the flushing seems to be "normal pots"...

Has anyone been diagnosed with POTS caused by Paraneoplastic Syndrome or Carcinoid? If so, is there a specific type of POTS that would point to an underlining paraneoplastic / carcinoid cause? I have Hyper POTS and some Docs (not the POTS experts) have suggested a paraneoplastic cause, yet all tests came back negative. Hope you all have a good day today!!

I seem to be not at all "typical" as far as showering is concerned. I always shower in the morning - this is the time of day, when I still have the most energy. My energy gets less with every time being upright in the course of the day, thus I would never be able to shower in the evening. In addition, I don't have troubles raising my arms over the head in the shower. In fact, I even "like" to raise my arms in general, as there seems to be strong blood pooling in them, when I let them hang down along my body...

My bp is sometimes slightly elevated when I am upright, but always perfect when I am supine. Doc suggests trying florinef now, as it seems that my small fiber test will come back positive. I am hesitant, my TTT showed extremely elevated norepinephrine... Getting confused - can hyperadrenergic and neuropathic types be "mixed"? And is florinef ok to try in this case?

Have heard exactely this argument from neurologists and cardiologists so many times. Maybe they are "right", for whatever the results of further testing would be, they won't know what to change in terms of treatment NOW. But maybe in the (close?) future any additional test result will be helpful, as research on our condition progresses!? up to you (and your daughter) to decide whether it is worth doing the tests anyway... What kind of testing would it be? I for myself have decided I will go on with testing, just for one simple reason: I was told for more than 4 years that it's useless to continue testing, as it was "all in my head". If I wouldn't have insisted on further testing, I would have never found out that I have POTS. Whenever one of my present docs (who eventually diagnosed me with POTS) suggests to stop testing, I tell them that I wouldn't be their patient today, if I would have listened to this "advice" earlier. Only my persistence on further testing brought me more insights about my condition. I won't give up this attitude.

Give ginger a try! Either ginger-lemon tea, or actual ginger root, if the tea doesn't work! You will have to get used to the taste of pure ginger root (only try to chew on some small slices!) - for me it helps quite a lot most of the time!

Yet there seems to be not enough long-term data available for the possible outcome of POTS patients. Some experts in the medical community do emphasize this repeatingly. Another aspect I sometimes think about personally: How can we know whether we didn't have POTS in a very mild (=symptom free!!) form long before we ever got diagnosed? Maybe, we can eventually return to a symptom-free condition, but would still show up POTS-signs on a TTT? I for myself would really like to know how I would have done on a TTT 10 years ago... (when I didn't feel sick at all!)

Same here!! At times, I have problems to read a longer text or lead a longer conversation! Sometimes this will make my physical POTS symptoms flare up. It took my a rather long time to understand this connection.

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.

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!!

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!!

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!!