Lemons2lemonade Posted March 26, 2013 Report Share Posted March 26, 2013 I think this will help all of us to see how "normal" our symptoms are. Please let me know if i missed any. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 26, 2013 Report Share Posted March 26, 2013 Very comprehensive list! Only other one i could think of was vitreous floaters but that can just go under visual weirdness. Quote Link to comment Share on other sites More sharing options...
misstraci Posted March 26, 2013 Report Share Posted March 26, 2013 Great poll, can't wait to see once more people vote!!! Quote Link to comment Share on other sites More sharing options...
arizona girl Posted March 26, 2013 Report Share Posted March 26, 2013 You have fatigue twice. I actually only get night sweats, otherwise I don't sweat much. Some of these symptoms I only get with near syncopes, which doesn't happen often. Others are situational related, like my hands swell if I get hot. My symptoms can get worse with exertion. My fatigue is usually because I already am having symptoms they kind of go together. Less fatigue, less symptoms, or the other way around hard to say. I have lots of different joint and muscle pain. Also have dry eyes, nose, etc.I'm one of those that get hypertensive on standing. So I get head, neck, and lower body pain when I'm upright. My near syncope/syncopes come on rather sudden without much warning, that is when I get the snow, nausea, ear ringing, pasty/clamy. My bp suddenly is tanking when this happens and I loose my legs, and am down, there usually is some kind of added trigger, motion and heat being some of them. Quote Link to comment Share on other sites More sharing options...
Joann Posted March 26, 2013 Report Share Posted March 26, 2013 I am similar to Arizona Girl, many of the same issues. I am also hypertensive and get the head, neck pain (and pressure below sternum). I checked some things that don't happen often, but some do during extremely bad episodes or occasionally. Others are daily or very often. Maybe I should have just checked the main symptoms? Quote Link to comment Share on other sites More sharing options...
bebe127 Posted March 26, 2013 Report Share Posted March 26, 2013 Great list! I'm going to print it out and use it, if you don't mind. Sadly, I can tick off almost all of them Your list is quite comprehensive. The following are some of my symptoms that I didn't notice listed (obviously, your list is not intended to be my list of symptoms )Did I miss diarrhea and other GI issues ie: little to no appetite, attic/basement gas, constipation, symptoms worse after large meal? How about weight gain/loss? I know you mentioned hr 130+, how about tachycardia >30bpm or bradycardia? How about reduced libido? Hypotension or Hypertension? Night sweats? Anxiety is a huge one for me, unless "feelings of panic" and "reduced tolerance to stress" on your list are related.Interesting to see results once more people vote.Thanks for posting! I for one am going to use this as a logging tool of my symptoms that perhaps can shed some light on triggers or otherwise give much needed info to dr.s in the future.Bebe Quote Link to comment Share on other sites More sharing options...
cyndi75rose Posted March 26, 2013 Report Share Posted March 26, 2013 Ha Great List. Can I just say all of the above Quote Link to comment Share on other sites More sharing options...
khaarina Posted March 27, 2013 Report Share Posted March 27, 2013 Interesting, but after checking nearly every one of those symptoms, also a little depressing lol. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted March 28, 2013 Report Share Posted March 28, 2013 I also had absence of sweating. The list is comprehensive and it made me sad to see all the things I could check. I tried to be conservative and not over think it. Still a lot of checks. But also comforting to know there's people out there that understand and feel the same. It's nice to not be alone. Good luck all Quote Link to comment Share on other sites More sharing options...
jknh9 Posted March 28, 2013 Report Share Posted March 28, 2013 What a great list! I want to print this and flash it every time I have to explain this illness, ha!I checked probably 3/4 of the symptoms listed.I agree with above posts, I'd like to see night sweats added. I would also be interested to see how many experience extremely fast HR, like 180+ Quote Link to comment Share on other sites More sharing options...
Angela Posted March 29, 2013 Report Share Posted March 29, 2013 what about sleepwalking? I started that around the same time my first pots flare. have been doing it lately again too. Maybe just me tho Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted March 30, 2013 Author Report Share Posted March 30, 2013 I think this list is part of the problem with POTS and doctors. When they give you the pamphlet, it should cover all of these. But when doctors hear postural tachycardia, they think it is only heart rate. In fact, the disease name itself is misleading. They should call it ADPOTS. Autonomic Dysfunction Postural Orthostatic Tachycardia Syndrome. I had my doctor move POTS as the primary condition and replace it with autonomic dysfunction...its a much better explanation. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 30, 2013 Report Share Posted March 30, 2013 I like Dizzy Disease. More than once when ive told someone I have POTS they think im on drugs... Quote Link to comment Share on other sites More sharing options...
yogini Posted March 30, 2013 Report Share Posted March 30, 2013 (edited) Coat hanger pain in the neck/shoulder area. Exercise intolerance. Insomnia. Reflux. Postprandial hypotension. Visible pooling. Arms legs falling asleep Edited March 30, 2013 by yogini Quote Link to comment Share on other sites More sharing options...
dpeeps Posted March 30, 2013 Report Share Posted March 30, 2013 The pads of my feet turn dark blue/purple when I step into a warm bath. I don't stay in the bath for more than a few minutes because my heart starts pounding, but anyway, I do like a quick bath. I never see any purple on my hands. A year prior to POTS, I was tested for Reynauds, which came back negative. Would this situation qualify as veinus pooling? I forgot to ask my POTS doc. Quote Link to comment Share on other sites More sharing options...
Lel Posted April 2, 2013 Report Share Posted April 2, 2013 What about difficulty regulating temperature, dry skin, and dry hair/hair loss? Quote Link to comment Share on other sites More sharing options...
Hope Posted April 2, 2013 Report Share Posted April 2, 2013 What a great list! I want to print this and flash it every time I have to explain this illness, ha!I checked probably 3/4 of the symptoms listed.I agree with above posts, I'd like to see night sweats added. I would also be interested to see how many experience extremely fast HR, like 180+ Quote Link to comment Share on other sites More sharing options...
bunny Posted April 4, 2013 Report Share Posted April 4, 2013 I'm surprised at how varied, yet uniform the responses are. In addition to the symptoms, I'd love to see this broken out some way, some how (I'll have to think on this) with how often people experience each symptom. 30% get syncope, but I'd love to know how often. It's one thing to pass out occasionally; it's another to pass out multiple times a day. Still, very interesting. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 4, 2013 Report Share Posted April 4, 2013 I agree Lemons, the POTS name should be ditched or modified. It so minimizes the problem and doesn't at all capture all the dysfunction. Quote Link to comment Share on other sites More sharing options...
Angela Posted April 11, 2013 Report Share Posted April 11, 2013 I like Dizzy Disease. More than once when ive told someone I have POTS they think im on drugs...whatever rama ha hawho would think you were on drugs? Quote Link to comment Share on other sites More sharing options...
Angela Posted April 11, 2013 Report Share Posted April 11, 2013 i guess we all are on drugs for the most part, rx'd shush now, maybe we will find our mockingbird lol. Quote Link to comment Share on other sites More sharing options...
robert elrod Posted April 28, 2013 Report Share Posted April 28, 2013 Not really a missed symptom but how many are hyperpots. And if they have another condition like eds or fibromyalgia etc. But real good list. First time I actually saw all my symptoms grouped in on large list. Kinda surprising to go down the list checking off so many. Quote Link to comment Share on other sites More sharing options...
bebe127 Posted April 28, 2013 Report Share Posted April 28, 2013 It is quite sad to think about when ticking off most of the boxes. FYI, I've used this list and the lists I've found online including the one found on Dinet.org to make a chart of my symptoms. I have five columns based on frequency: Always (Daily), Frequently (4-6x/week), Sometimes (1-3x/week), Rarely/Never, and Don't Know. It is my hope that I can take this to the dr. and show him more precisely what I'm experiencing without having them ask and me having to spend thirty minutes going over all my symptoms; plus, this doesn't leave anything out so I don't have to remember everything or worry about forgetting to mention something. Quote Link to comment Share on other sites More sharing options...
angelloz Posted April 28, 2013 Report Share Posted April 28, 2013 Does anyone else experience disequalibrium? Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted April 29, 2013 Report Share Posted April 29, 2013 Can I just say all of the above? plus I get short term of (complete confusion) whenever I travel by air. Quote Link to comment Share on other sites More sharing options...
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