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Big Bad Episodes - Anyone Else?


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Hi. I need to ask if anyone else experiences something similar. To let you know, I recently have seen an neuro who says it appears I have dysautonomia (his guess is "immune-mediated") and am scheduled for my autonomic testing later this month. Here's my whole long story: first ever episode started last november on vacation. acute onset of dizziness, panic feelings, extreme heat and a headache, then my body proceeded to purge itself of eveything inside it and i started with full body temors. after a little while my body would go into "recovery mode" as i call it - extreme exhaustion where I can't really talk and move - for a few minutes and then the cycle starts again. This lasted for about 2 or 3 hrs. ER doc said I had laberynthitis and sent my home.

Stayed dizzy and nauseous and within a week had a raging sinus infection and double ear infection. In about eight weeks my infections and other symptoms cleared. I thought it was all done. I did continue to be sick with everything my kindergartener brought home from school until May.

In both January and April i had smaller versions of the episode that happened in Nov - they were much shorter in duration and not quite as severe. Then in June had another big one and since then I have daily symptoms like dizziness, nausa, GI issues, BP jumps around, I'm orthostatic (but never passing out), blah blah, all the things you know about all too well. But just within the past month I have had three more of those really big bad episodes, just as described above. Haven't seen a pattern or trigger. I can tell when they are going to happen, like and animal can sense an earthquake and i just "ride the wave." But i want to know if anyone else experiences something similar? I'm curious as to why I'm having more? The neurologist i saw put me on Mestinon which seems to have no bad side effects and has made it so I have good parts of everyday and no more GI issues. On to the next batch of testing...

Any thoughts for me? Thanks.

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Hi,

I get the whole body trembling thing too. It is extremely scary, isn't it? Mine usually happen when I am "bothered" by something else, like an illness or allergy testing.

Do you take Clonazepam? That might help with the trembling when it happens.

Like you, I get sick very easily. I seem to keep it longer than others and suffer more for some reason.

Good luck with your testing.

Angela

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Yes. I have experienced this----just this past Friday. Do you notice your mouth getting very dry when you have an episode? It was awful----I was gagging, burping, tremors, tachycardia and nausea. I rarely get nausea, but this time I couldn't get rid of it. I'm also ahving a rough time with my neck instability issues.

Maxine :0)

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Hi,

I get the whole body trembling thing too. It is extremely scary, isn't it? Mine usually happen when I am "bothered" by something else, like an illness or allergy testing.

Do you take Clonazepam? That might help with the trembling when it happens.

Like you, I get sick very easily. I seem to keep it longer than others and suffer more for some reason.

Good luck with your testing.

Angela

Hey Angela. Yeah, hate the tremors. They are exhausting. I haven't tried Clonazepam. Thanks for the tip. I do take Lorazepam (a diff benzo) which doesn't help with any of my body symptoms but def makes them easier to deal with. I only take it when things are really bad. Do you have the tremors often? Sorry you have to deal with them. Take care and thanks again!

Tabitha

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Yes. I have experienced this----just this past Friday. Do you notice your mouth getting very dry when you have an episode? It was awful----I was gagging, burping, tremors, tachycardia and nausea. I rarely get nausea, but this time I couldn't get rid of it. I'm also ahving a rough time with my neck instability issues.

Maxine :0)

Maxine, I don't seem to get a dry mouth when this happens. I'm sorry you had such a rough Friday! Do you have intermittent episodes where your symptoms come in clusters or seem worse? Do you notice a correlation between that and your cervical instability issues? I have yet to find any pattern as to when my symptoms are at their worst. I've been keeping a journal. Maybe a pattern will appear eventually. I hope the nausa has resolved itself and your Monday is better than your Friday :angry:

Thanks for your reply

Tabitha

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Hi,

I get the body tremors as well. Sometimes they are only at night and sometimes they are there during the day. I also seem to have blurry vision with mine. I also get the nausea, though I usually never actually vomit. I have noticed no patterns for the tremors, but the nausea is always there when my heart races, bp shoots up and pulse pressure narrows. I also believe that I am having intestinal motility issues which has been causing major nausea. My GP put me on motilium and I haven't had any nausea since taking the medicine.

You can do a search for tremors, there was a post a month or so ago and everyone discussed what helped them with the tremors. I stretch and take calcium and magnesium(if my blood pressure isn't low). They all seem to help the tremors, but they don't really go away. I did take Norflex for a while and it completely got rid of my tremors while I was on it.

I hope you get some answers and start to feel better soon.

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