IDreamInColor Posted October 30, 2011 Report Share Posted October 30, 2011 I know dysautonomia affects everyone different, so I'm curious on what your top three worst symptoms are? For me it's the debilitating weakness, the dizzyness in my eyes and in general, and the nausea.The symptoms that I have most often is the myoclonis jerks, however, those don't hurt or anything, so it's tolerable, just embarrassing. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 30, 2011 Report Share Posted October 30, 2011 I also have myoclonis jerks, but they involve my whole body and are pretty severe. Do you take any meds for this? How often do you have them, and how long do they last? Mine are getting to be more frequent and more violent, almost like seizures, so I'm calling my doctor on Monday.My worst symptoms are probably my small fiber neuropathy, weakness and uncoordination/balance- one more - fainting. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 30, 2011 Report Share Posted October 30, 2011 Depends what day you ask me, but head symptoms are always #1 ---> dizziness / weird eye focus problems / cognitive problems, chemical sensitivities, and tachycardia. Quote Link to comment Share on other sites More sharing options...
IDreamInColor Posted October 30, 2011 Author Report Share Posted October 30, 2011 Potsgirl, yes, my jerks have become more severe also. They started 6 years ago, but they just came occasionally, and sometimes I would go weeks without any, I didn't think much of them at the time. But this past September I was diagnosed with dysautonomia and the jerks have become severe. They happen all day long, and are becoming more violent. They used to only happen to my legs, now they are full body. I don't have any meds for it, I don't even know what people take for it. Quote Link to comment Share on other sites More sharing options...
chipper Posted October 30, 2011 Report Share Posted October 30, 2011 Now that I am better-tired all the time, aches, dizzy after being upright too long. In the beginning-extreme nausea,dizziness,muscle jerks, so weak. This all caused me to be in bed. Could barely make it to the bathroom. Quote Link to comment Share on other sites More sharing options...
chipper Posted October 30, 2011 Report Share Posted October 30, 2011 My all over body jerks got better as I improved. The ones on my ribs hurt. I think it was because the muscles are so tight there. Now they pop up small little jerks just when extremely tired. Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted October 30, 2011 Report Share Posted October 30, 2011 Mary - How did you improve? Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 31, 2011 Report Share Posted October 31, 2011 I wish I had a good answer to this. My docs ask me each time I go and I try to explain that my worst 3 symptoms today might be different tomorrow. The dizzy, brain fog, drunken feelings are bad. But, if my GI issues kick up, then they are the worst. During the hot weather, the tachy, short of breathe, strangling feeling was the worst. Migraine days are also a whole different ball game. Can I get a fullbody transplant?? Quote Link to comment Share on other sites More sharing options...
misstraci Posted October 31, 2011 Report Share Posted October 31, 2011 lightheadedness, weird head pressure, and an "out of it" feeling which some may call Brain fog, not sure Quote Link to comment Share on other sites More sharing options...
chipper Posted October 31, 2011 Report Share Posted October 31, 2011 Better for me, was a gift from God named Dr.Cecil Coghlan, a doctor who was born to treat us. He has retired now and I am sure he still helps us in some way. I saw him for 20 years and really miss him. He knew the medication to give and when to give it. The doses were started at the smallest possible dose and eventually my body would respond. After many medications, the meds that I take are clonidine, paxil, wellbutrin, klonopin and fish oil. Looking back it seems impossible. I know we can get relief from these awful symptoms. He knew how to treat us in the 70's. Wish I could heip everyone! Thank you for asking lgail. Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted October 31, 2011 Report Share Posted October 31, 2011 dizziness/balance problems, anxiety, exhaustion Quote Link to comment Share on other sites More sharing options...
sandymbme Posted October 31, 2011 Report Share Posted October 31, 2011 Pain (joint and or migraines), GI issues, and syncope. I may not always have these 3, although I usually have at least one, but they are certainly the ones that interfere in my life the most.Sandy Quote Link to comment Share on other sites More sharing options...
Nikki Posted October 31, 2011 Report Share Posted October 31, 2011 For me dizziness is the worst...Then I would say vision problems - focusing on things especially (though I'm not sure that is 100% POTS, as of now that's all that I know of that could be causing it), and fatigue. Quote Link to comment Share on other sites More sharing options...
anna Posted October 31, 2011 Report Share Posted October 31, 2011 Mine vary! but I think the lack of cognitive ability is always up there!!To you dear folk with Myoclonus, have Dr.'s ever been able to tell you whether the jerks are from ANS stuff or Connective tissue side of things?! I have had noticeable myoclonic jerks (according to my mum) since I was a toddler! My children also have Myoclonus but not too noticeable unless they are tired. My Aunt and father also had the myoclonus and are noted to have probably had Classical EDS, which is what myself and my children are diagnosed with! Our geneticist said that the Myoclonus runs true alone with the EDS so he explained he thought it was most likely that we have a weird variant of EDS!!! But after being on a few diffrent boards I have come across a number of folk with EDS and Myoclonus!! Quote Link to comment Share on other sites More sharing options...
E246 Posted October 31, 2011 Report Share Posted October 31, 2011 Hi,The worst part is-Chest painAdrenal surgesBad nightsIt can change from day to day but the chest pain has always been the worst. Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 1, 2011 Report Share Posted November 1, 2011 Fatigue/LightheadednessNon-IgE mediated allergic responseReynaud's Quote Link to comment Share on other sites More sharing options...
GingerA Posted November 1, 2011 Report Share Posted November 1, 2011 The three worst are pain (which I have now in some form everyday), fatigue, and now nausea. Quote Link to comment Share on other sites More sharing options...
mwise Posted November 1, 2011 Report Share Posted November 1, 2011 The weakness/falling to floor, gi issues and buzzing/fullness in head. For me it 2 varies on the day, but these are the worst. Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 1, 2011 Report Share Posted November 1, 2011 Hi,fainting, paralysis, diarrhea. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted November 14, 2011 Report Share Posted November 14, 2011 the overwhelming fatigue, the inability to stand without pain or to stand only for short periods, the inability to complete the least task without having disruption of symptoms of near syncope that causes me to rush to sit or lie down right then and there, (and a fourth is the profuse buckets of sweat that will start abruptly for no reason leaving my head soaked like a mop and my body chilling for the rest of the day/night. A fifth and sixth are the intolerance to any heat or to cold). I have the nausea, GI, sleep problems, shortness of breath, weakness, tremulousness, dry eyes but I can at least function somewhat with those. Quote Link to comment Share on other sites More sharing options...
fiona-jane Posted November 15, 2011 Report Share Posted November 15, 2011 the 3 symptoms that bug me the most tachycardia gastroparesis (that comes with a large amount of nausea) exhaustion that never seems to improve no matter how much rest i get (doesnt help that i have a sleep disorder......)get very dizzy and faint lots but since getting my chair it's not been quite as bad so left it off my list. its hard to pick only 3!fi xx Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted November 15, 2011 Report Share Posted November 15, 2011 For me dizziness and balance issues are the most annoying symptom. Like others have said, it's like I can't focus my eyes sometimes too which contributes to my dizziness. Otherwise, I'd say the extreme fatigue and the generalized weakness/shakiness are in my top 3 most troubling symptoms. Like today I totally feel like my legs and arms are made of rubber. Sometimes GI problems are up there--just depends on the day. Quote Link to comment Share on other sites More sharing options...
Maiysa Posted November 17, 2011 Report Share Posted November 17, 2011 For me every day is different, but mostly 1. pain,(migraines and neck and shoulder pain) 2. nausea 3. dizzy with strange feeling in my brain-like I'm in and out...fog is it? Hard to describe....I pick up about every other word if I get nervous when people are talking to me. Strange for me since I was a stage actress in college-nerves never got to me. Life is always changing that's for sure. Quote Link to comment Share on other sites More sharing options...
peregrine Posted December 14, 2011 Report Share Posted December 14, 2011 1: Fatigue and brain fog2: Spaciness while walking/standing3: Eye dysfunction (blurry vision that takes active effort to push away)(1) and (2) switch places on a daily basis depending on whether I've gotten enough sleep; 1 predominates when I haven't, 2 when I have.Nausea, tremor, palpitations, shortness of breath, chest pain, sweating, headaches, being cold, and feeling wired all affect me, but usually are intermittent (nausea is fairly constant but usually at a low level) and not as severely debilitating. Quote Link to comment Share on other sites More sharing options...
mully2014 Posted December 14, 2011 Report Share Posted December 14, 2011 1. dizzy/fainting2. tachycardia3. fatigue4. painSorry I have 4 but I couldn't figure out which ones were worse. I also have chest pains, lack of sleep, nausea, loss of concentration, shortness of breath, sweating, weakness, etc. Quote Link to comment Share on other sites More sharing options...
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