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Hyperpots symptoms?


Amyschi

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Hi all.  Just wondering if anyone, maybe especially those with hyperpots, has this constellation of symptoms?  For the past several months I have been having episodes of waking suddenly from sleep, like a startle, then noticing a short burst of tachycardia, a severe "internal tremor," ongoing severe feeling of chills that are more like cold paresthesias running down the arms and legs, but oddly, feeling of body/skin burning all over.  I do have evidence of large fiber polyneuropathy on EMG/NCS, but have not been tested for small fiber, which I strongly suspect.  This is generally accompanied though the following day by excessive weakness; just a worsening of symptoms from baseline.   I am thinking this is coming from adrenaline surge, but just don't know.   I am not on any medications.   Thank you. 

 

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I generally wake up like I just got off of a roller coaster. I'm not sure if there's much tachycardia at this point, but certainly that tremulous sensation in my chest. I'll frequently have that burning sensation over most my body  too when waking, but that lessens if I get up and move around, though it's not easy to do so when first waking up. After that, my day can go in any number of directions and usually changes by the hour. 

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Hello Amyschi,

I know this symptoms very well. In my case the doctors think for adrenalinsurges at night and they are triggerin a kind of migrainesymptoms with paraesthesia all over the body and extremly heat. Since I take Intuniv 1 mg and weekly infusions 1000ml I feel much better with this symptoms. Hope you will find a good support!

 

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16 hours ago, MTRJ75 said:

I generally wake up like I just got off of a roller coaster. I'm not sure if there's much tachycardia at this point, but certainly that tremulous sensation in my chest. I'll frequently have that burning sensation over most my body  too when waking, but that lessens if I get up and move around, though it's not easy to do so when first waking up. After that, my day can go in any number of directions and usually changes by the hour. 

Thanks and so sorry you get this too.  I know the feeling, it makes you weak so that it is hard to get up to burn off the adrenaline, if that is what it is.  Hang in there. 

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10 hours ago, Chiara said:

Hello Amyschi,

I know this symptoms very well. In my case the doctors think for adrenalinsurges at night and they are triggerin a kind of migrainesymptoms with paraesthesia all over the body and extremly heat. Since I take Intuniv 1 mg and weekly infusions 1000ml I feel much better with this symptoms. Hope you will find a good support!

 

Thanks Chiaea.  This is interesting that it may stem from migraine, but I'm glad the med helps you.  I don't get migraine, but I do have chronic longstanding chronic dizziness.issues, and have often wondered if that could be vestibular migraine, so that is something to keep in mind.   Good luck to you.

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I have those exact symptoms happen regularly. Had about a year or two when that would happen every night actually, but thankfully it's not every night now.

The tremouring afterwards for sometimes an hour or so always signaled that it was a dysautonomia attack, with an adrenal surge. My temperature often drops, too, and my teeth start chattering after the worst of it is over.

Please know you're not alone in what you're going through!

 

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