Any Idea On These Symptoms Pre-Pots?

[sue1234]

I occasionally think back to 6 months before my onset of POTS. It was summertime and I had goosebumps constantly, even though I was not cold and it was 90F outside. Also, right after POTS hit, I started having the scalp prickling sensation that was off/on for about the first year. Then it quit.

To me, these symptoms sound like the side effects of ProAmitine(?). I have never taken it though. Doesn't it mimic adrenaline release in the body? If so, what might have been the meaning that my body was releasing adrenaline? I don't remember the other symptoms of adrenaline, such as palpitations, etc. Just the goosebumps and scalp pricking. Thanks for any thoughts.

[Mytwogirlsrox]

Not sure, but I get this from time to time.. One leg will get goose bumps or my scalp tingles. Is proamitine mididrone

[Guest Alex]

I've taken midodrine (proamatine) and I'm familiar with its side effects - the goose bumps and the scalp prickling sensation. They are not at all similar (for me) to what I'd feel during an 'adrenaline releasing' episode. I usually feel shaky, my hear is racing, my breathing is weird, my head feels full, and my muscles feel tense.

Alex

[sue1234]

MTGR, yes, apparently it is midodrine.

Alex, you're right. I've had a million adrenaline rushes, and I actually do NOT get goosebumps or scalp prickling then. But, when I did have these symptoms, I did not have the other adrenaline feelings.

Makes me wonder what was happening to my body prePOTS that my body was doing its own "midodrine" thing. It really makes me wonder about the autoantibody theory, where possibly the autoantibodies were introduced from a virus or where ever and my body was trying to correct things. After time(months), I developed POTS out of the blue. Maybe that was the point that my body could not correct itself anymore??

I don't know. If anyone has any thoughts, I'd be happy to hear them.

[HopeSprings]

"The feelings of paresthesia, pruritus, piloerection and chills are pilomotor reactions associated with the action of Midodrine on the alpha-adrenergic receptors of the hair follicles."

"pi·lo·mo·tor (pī'lō-mō'tŏr),

Moving the hair; denoting the arrectores pilorum muscles of the skin and the postganglionic sympathetic nerve fibers innervating these small smooth muscles."

It's interesting and I would be wondering too. I could be completely off, but based on the above maybe something to do with nerves?

[sue1234]

Naomi, thanks for looking that up.

I was thinking about the autoantibodies similar to what Dr. Vernino in Dallas is studying. It has to do with autoantibodies against the nicotinic receptors, which ultimately does have something to do with sweating or something, I believe. I was thinking along those lines, that even though I tested negative for those autoantibodies, that there is some similar "receptor" autoantibody that my body was/is fighting.

So, with your information, an autoantibody to the alpha-adrenergic receptors maybe???? IF there was such a thing, what exactly would all be affected...such as, lack of sweating? Lack of pupils to react well to full light?? (I'm just mentioning those two because I have huge issues with that. I don't know for a fact that they have anything to do with alpha-adrenergic receptors).

[Tobiano]

Very interesting – especially your thoughts on adrenaline. Thinking back, there were signs that something was wrong with my autonomic nervous system before the official onset of dysautonomia. I have always had poor temperature regulation and got goosebumps easily. I would get them when I was cold but would also get what my friends would call “angry bumps” … goosebumps if I was annoyed or angry. My friends and family could always tell how I was feeling, even if I was very good at controlling my facial expressions! This might sound completely wacky but it is something that others definitely noticed that was different about me. Also, I also frequently had glassy eyes and dilated pupils.

[HopeSprings]

Sue - have you pursued small fiber neuropathy? I've seen people without classic neuropathic symptoms end up positive. I think Rich is an example? I don't remember him reporting symptoms that scream neuropathy, but he tested positive. Maybe it's something to look at?

[Birdlady]

Sue every so often, I'll have what you are describing on the top of my head. It feels like someone is moving my hair. It is the same pattern, repeated every 2-5 seconds. I don't take midodrine, so I know it's not that...

I probably have SFN, but I wasn't tested for it.

[lejones1]

I just want to add that tingling in the scalp can occur with migraines - i get it it every time I have one. I'm certainly not suggesting that you're having migraines, but they are a form of autonomic dysfunction. I'm not sure if it's the blood flow issues or nerve issues or both that causes it, but it sorta makes sense that it would occur with POTS too.