Pulse Normal But I Feel Jittery -Please Tell Me This Is Part Of Pots

[abbyw]

Hi everyone,

One of my main symptoms is this feeling of "jitteriness". I am not really sure how to explain it. I feel wired, or riled up, almost like I want to jump out of my skin. It is sort of like how I felt as a kid before a big test or with stage fright. I feel that way even when I am exhausted. I used to think it was my tachycardia, but I still have it, even when the tachy is under control, and my pulse is in the 70's. It is not anxiety - it is completely unrelated to any thoughts, it's just always there. Can anyone explain to me if this is part of the POTs? What is the medical explanation for this?

Or worse - is it not POTS and I am the only one who gets this?

Thanks.

Abby

[jenniferlynne76]

Welcome to POTS. You are definitely not the only one who gets this. I experienced it really severely right after onset and its gotten better as we've used medication to get my symptoms under control. I wish I knew exactly what caused the issue (perhaps someone else here can provide some insight). But please know you are not alone. This is extremely common among POTS patients. In my case pooling blood in my legs/feet can cause it, but it also happens at random, and used to happen most often at night. Since I started taking Klonopin before bed its all but stopped, however. This makes me think there's some type of adrenal response involved, as well.

Good luck to you!

Jen

[brethor9]

Abby

Sorry you are suffering with these episodes big hugs........when I first came down with POTS I suffered from horrible "jitters" constantly....I later found out through testing that I had extremely high levels of adrenaline hence that is what was causing the pseudo-anxiety attacks sometimes with or without tachycardia. I still get them especially when I get hit with a bad flare but thanks to being medicated they have reduced quite a bit.....are you any medications for your POTS?

Bren

[abbyw]

I am on an SNRI, which has helped everything except for this. I used to be on an SSRI, and it was gone, but I gained 25 lbs in a year, had night sweats, and I was a zombie all the time. I just thought that this "wired" thing had to do with heart rate, but it doesn't seem to be correlated, so I am confused.Maybe, like Jennifer says, it is adrenaline, but then wouldn't it make my heart beat fast too?

Bren, I see what meds you are taking, Jen - what do you take other than the klonopin?

I am getting a bit tired of trialing drugs, waiting for my body to get used to it and then moving on to something else....

[jenniferlynne76]

Abby, I'm also on Mestinon (60mg 3x a day) to help keep the blood pumping through my system harder. Helps with the pooling and has really all but solved my digestive issues. The Mestinon helped this jittery feeling you asked about for sure...and the Klonopin has completely resolved it. Been on it for a month and haven't experienced a single return episode (fingers crossed).

What are you currently on?

[lifeless]

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[Chaos]

Abbyw- definitely have that same feeling of wanting to jump out of my own skin at times. Other times it's just the jittery feeling, like I drank too much caffeine-except I didn't have ANY, which sometimes comes with the tachycardia and SOB that goes with it. I'm trying to wean off propanalol right now and getting this feeling a lot now. It's not fun! My POTS neuro considers it part of what he calls my "hyperadrenergic component symptoms" even though he thinks my primary diagnosis is neuropathic POTS.

[abbyw]

Chaos - yes, over-caffeinated is a good way to describe it, even thought I stay away from caffeine like the plague. My doctor also said something about my being the hyperadrenergic type, although I am skeptical, as I do not have pooling or tingling or sweating of the extremities. I see you take Bupropion. I wanted to try that one, to get away from the side effects of the SSRI/SNRIs, but my doc was concerned that this would only make these jumpy feelings worse, since that is listed as side effects. Has that been your experience?

[Chaos]

Abby- No, for me Bupropion has been the only AD type drug I can tolerate. I went thru a lot of the SSRI/SNRIs trying them all and had miserable side effects. Have been on Bupropion for several years. My POTS neuro doesn't particularly like it, so tried having me wean off it as he thought it might be responsible for my "hyperadrenergic" type symptoms. Weaned off slowly and was off it for a couple months and it made ALL my POTS symptoms SO much worse. Now every time I see him he makes a point of stating how for me it's a really good drug for treating my ANS symptoms.

Don't think I'm a "true" hyperadrenergic POTS either. Did have the rise in standing catecholemines etc but not the huge numbers that a lot of people on here get. Like I said, my doc said he thinks I have primarily the neuropathic type, but then also have a hyperadrenergic component, which makes it a pain to treat because what you do for one, aggravates the other. Sigh. Guess that's why with this type especially, you just have to try everything for yourself because there's no way to predict what any med is going to do in this crazy mixed-up system.