peregrine Posted February 20, 2012 Report Share Posted February 20, 2012 My spaciness - the feeling while standing or walking like I'm experiencing serious depersonalization, the fact that I have trouble noticing/processing visual stimuli (people walking towards me, street lights, cars) and less so auditory (I can hear cars coming more than I can see them). The other issues are annoying to debilitating, but this one is by far the worst since (among other things) it also affects my ability to be independent, I can't drive, etc. Quote Link to comment Share on other sites More sharing options...
Lackadaisy_baby Posted February 21, 2012 Report Share Posted February 21, 2012 Shortness of breath (esp. at rest), easily. It's more anxiety-inducing than even my palps and chest pain. The pain I can sort of tolerate because I know it's essentially "harmless", but any shortness of breath will send me diving for my pulse ox. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 21, 2012 Report Share Posted February 21, 2012 Dizziness because it prevents me from driving to see friends and family....I'm using pressure bands for nausea...we'll see!! That's my second . But to be honest, I am grateful to God for every day I have to spend with family and friends that are close, and am glad that I can get out of bed. I know some that are bedridden and home bound with this every day!! Quote Link to comment Share on other sites More sharing options...
mwise Posted March 13, 2012 Report Share Posted March 13, 2012 I picked fatigued which right now my GI symptoms appear to be worse than ever. I would like to get rid of all symptoms if I could. I pray everyday for a cure for us all . Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 13, 2012 Report Share Posted March 13, 2012 It's kind of interesting to me...right now I'm having trouble sleeping again, and I'm not as dizzy, but shakey, so it depends what day you're asking. It certainly is a potpourri of symptoms...never boring!! Quote Link to comment Share on other sites More sharing options...
kayjay Posted March 13, 2012 Report Share Posted March 13, 2012 I wonder it fatigue is age related at all. I used to be able to do more when I was in my 20's even though i was sick with POTS. In my 30's I can't believe how much time I have to spend resting. I have every symptom listed but the fatigue is crushing. Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted March 14, 2012 Report Share Posted March 14, 2012 I would get rid of the flushing because other people notice it the most . I simply hate having to try to explain why the upper half of my body looks like a cherry. I never know what to say. Also when I am flushed is usually when I feel the absolute WORST. Cannot seem to keep fluids in me no matter how hard I try.Other than that I guess my second choice would be dehydration. I think if I could just keep hydrated well enough, many of my other symptoms would go away.Great poll!! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 19, 2012 Report Share Posted March 19, 2012 Dizziness!! I HATE presyncope/dizziness/lightheadedness and the weakness that goes with it!! Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted May 1, 2012 Report Share Posted May 1, 2012 I voted for GI issues. For me, the GI pain and reactions to eating are the worst thing I deal with. If I could get rid of the GI / eating stuff, I think I could deal with the rest pretty well. I'm even doing better with the adrenal rushes / anxiety episodes I have.Lindajoy Quote Link to comment Share on other sites More sharing options...
StephL Posted May 1, 2012 Report Share Posted May 1, 2012 GI for me too.What I wouldn't give to have just one day with no tummy issues. Mostly nausea with me but the cramps and pain too. Quote Link to comment Share on other sites More sharing options...
Troy Posted May 1, 2012 Report Share Posted May 1, 2012 My choice wasn't listed so I chose "other"I would get rid of my most bothersome symptom which is either:1-the drug intolerance and adverse reactions to medicationsor2- the overheating, heat intolerance and temperature problems Quote Link to comment Share on other sites More sharing options...
Monstrosity Posted May 2, 2012 Report Share Posted May 2, 2012 I stared at this for 10 minutes before clicking one. I went with Brain Fog. A close second place would be the twitch/ticks/tremors. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted May 2, 2012 Report Share Posted May 2, 2012 I'd have to say, Heat intolerance. It's my worst symptom and no meds control that one. Quote Link to comment Share on other sites More sharing options...
Troy Posted May 2, 2012 Report Share Posted May 2, 2012 I'd have to say, Heat intolerance. It's my worst symptom and no meds control that one.I can relate to your reply, its exactly my main problem too. Have you tried a cooling vest ? I usually wear one in summer and also carry around a mini hand held fan and a pump spray water bottle, its helps a lot. What you do is spray yourself with water and then use the fan to cool off the water, its awesome and so refreshing, even my friends steal it off me to have a go and they dont even have Dysautonomia. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted May 2, 2012 Report Share Posted May 2, 2012 I really really want one, but right now it's out of my price range. I wonder if insurance would cover this? I do all of the water spritzing tricks. haha! I even get cool baths just to cool myself down. All it takes is getting overheated for 10 minutes and I get the beginning stages of heat exhaustion. Ugh summer time is not good for me at all. Same thing happens with exercise too. I get heat exhaustion from it...I'd have to say, Heat intolerance. It's my worst symptom and no meds control that one.I can relate to your reply, its exactly my main problem too. Have you tried a cooling vest ? I usually wear one in summer and also carry around a mini hand held fan and a pump spray water bottle, its helps a lot. What you do is spray yourself with water and then use the fan to cool off the water, its awesome and so refreshing, even my friends steal it off me to have a go and they dont even have Dysautonomia. Quote Link to comment Share on other sites More sharing options...
StephL Posted May 3, 2012 Report Share Posted May 3, 2012 Something I've noticed just the past few days for me and heat intolerance is that it seems like my body has a hard time adjusting. I've turned the AC on finally and when I go outside I get really sick.Before that though the house was open 24/7 and I was still sick but I didn't get those flushes of GI problems as often. I live in Florida, this is going to be a real problem for me because everything is air conditioned and it's hotter than blazes outside. I'm glad the doc discussed getting me a handicap sticker for parking. Especially since I have to wait for an employee bus at my job. The spaces are right next to the bus stop so I can stay in my car until I see the bus coming. Quote Link to comment Share on other sites More sharing options...
hlt4275 Posted May 3, 2012 Report Share Posted May 3, 2012 Definitely fatigue for me too! I feel like I could deal with the other symptoms much better if only I had energy. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted May 3, 2012 Report Share Posted May 3, 2012 I've decided that I can't just pick one...because depending on the day, my symptoms change like the wind...today it is crossed eyes and blurred vision, last month it was fatigue, in the beginning it was dizziness and falling and insomnia. Sometimes it's GI or GU issues. My eye crossing is driving me crazy today. I just keep closing my right eye to keep it from happening!! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted July 22, 2012 Report Share Posted July 22, 2012 Tough choice!I dont experience fatigue or dizzines; I don't faint either. Headaches are manageable so I can handle them. Chest pain - scary! mostly because I don't know what's causing it and there is nothing I can do to make it go away (that's what I voted for). Palpitations used to scare me, not anymore, unless my HR decides to jump 50-60 bpm when I'm laying down reading a good book. Muscle and joint pain - this is something new for me, it's not too bad, but I'd rather not have to deal with it. Never experienced brain fog, GI problems, blurred vision or shortness of breath with my POTS. Anxiety - I still have some, but I think it's under control. Insomnia - a new symptom for me despite being on klonopin at bed time (guess my body got used to the dose I take and now it's asking for more - not going to happen).Looks like pain is the winner here - chest, muscle, joints(unsure though if it's my joints that hurt). Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted July 22, 2012 Report Share Posted July 22, 2012 Chronic infections, and taking forever to heal from anything. I'm with some of you....the dizziness is "normal" now, and I only notice when I'm not dizzy. Taking 3 weeks to rebound from a cold, though, is the worst, and I've been on antibiotics for the better part of 3 years for infection after infection. Second would be heat intolerance for me, as well, mostly because my insistence on running the air conditioner and driving with my head out the window in the snow makes my husband completely miserable. I was a championship water skier and went through college on a diving scholarship; I can't even go outside in the sun now without shaking and feeling like the world is spinning. Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted July 22, 2012 Report Share Posted July 22, 2012 Okay, I guess the world IS spinning. Put me down for brain fog. Quote Link to comment Share on other sites More sharing options...
kjmom Posted July 22, 2012 Report Share Posted July 22, 2012 Awesome poll summer! I have constant stomach pain, (for 7 months now) and if that goes away, so does my anxiety, and maybe even my brain fog. I sure wish this poll were real....oh well. Thanks for the poll though! Kayla Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted July 22, 2012 Report Share Posted July 22, 2012 allergic reactions to scents Quote Link to comment Share on other sites More sharing options...
spinner Posted September 9, 2012 Report Share Posted September 9, 2012 at first sob, but cpap is helping that alongside klonopin.Now, definitely WEAKNESS (as opposed to fatigue). I dont feel sleepy usually, butwhen i get moving to get things done Im moving at 1/5 my old speed because my tachy/flushing kicks in and i feel like im walking in cement. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted September 9, 2012 Report Share Posted September 9, 2012 I have chronic fatigue and faintness but worst of all is the hypersensitivity to the world around me which makes me feel like a Mac truck has hit me unless I can retreat quickly to a small quiet, dark room. Quote Link to comment Share on other sites More sharing options...
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