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What Are You Top Three Worst Symptoms?


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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.

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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.

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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.

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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?? :D

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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. :rolleyes:

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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

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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.

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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!!

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Hi,

The worst part is-

Chest pain

Adrenal surges

Bad nights

It can change from day to day but the chest pain has always been the worst.

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  • 2 weeks later...

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.

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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

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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.

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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.

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  • 4 weeks later...

1: Fatigue and brain fog

2: Spaciness while walking/standing

3: 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.

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