hyperpots Posted November 8, 2011 Report Share Posted November 8, 2011 This is officially my first treatment for my POTS / Dysautonomia. I feel my hair standing on end on my scalp just 30 min. after my first dose. Otherwise I don't feel anything too much different except that maybe my anxiety may be slightly down.Dr. added a very low dose B-blocker, but won't start that until tomorrow. It's called Betsxalol and the dose is 5mg every morning.He said to give this 3 weeks and then might add in the Mestinon and perhaps an SSRI. I tried a 5mg Lexapro I had sitting around the last few days and it was just too stimulating and made my anxiety worse when I thought it couldn't get any worse.Lastly, the Dr. wants me swimming Laps M-F, so I'm joining the YMCA. He says this is a great way to get exercise keeping the body cool at the same time and getting the legs to learn to keep the blood flowing from the legs back to the head.Wondering if this feeling of my hair standing on end is a good sign that Perfusion is hitting the brain.Appreciate your thoughts as always,Steven Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 8, 2011 Report Share Posted November 8, 2011 Hi Steven, you may need to tweak the dose, with help from your doc. Midodrine will stay effective for about 4 hours per dose (at least that's the average time most folks here have reported, as well as my own personal experience) -- so 5x a day might be too often--you shouldn't take any Midodrine within a few hours of your bed time b/c it can cause your bp to stay too high while you're laying down. As for the dose, I sometimes needed as little as 2.5 mg every 4 hours to as much as 12.5... my doc and I worked together to allow me to adjust my dose based on symptoms. Since your male, you may not have as big a variation in dosing; during my period and just before, my dosing varied tremendously from the remainder of the month--which was usually 7.5 mg every 4hrs. Be prepared that when Midodrine wears off, you may experience a very sudden onset of symptoms. I used to describe it as dropping off of a cliff--I'd be doing awesome and then BOOM. On a good note, the drug is picked up in your system quickly, so it'll only be 20 minutes or so after taking it before you start to feel better. Hair standing on end always was my cue: meds kicking in now. Good luck with it--some people respond well and others don't so it's really a try it and see kind of thing Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 9, 2011 Report Share Posted November 9, 2011 I have never taken Midodrine, but the whole first year that I had POTS, I kept getting that exact feeling on my scalp. It was exactly like they describe, like a "writing on the scalp" feeling. It was very irritating, then died down by the 2nd year. Later, reading on this forum, I learned about Midodrine and it's side effects, and I was like "I had that feeling!". So, what is Midodrine mimicking in the body? Because that is what my body was kicking out, apparently trying to help. Quote Link to comment Share on other sites More sharing options...
hyperpots Posted November 9, 2011 Author Report Share Posted November 9, 2011 I can't say these goose bumps, hair standing sensation on the scalp is discomforting, but it sure does feel weird as if something is going on.I hope in my case, my blood flow is increasing in the Brain. I'm sure in my case that decreased Cerebral Blood flow is a big source of my symptoms. Lots of reversal needed as so much time has passed trying to figure out what was wrong with me.Anxiety is def. not what is normally is. Breathing is not Labored, nor do I feel overstimulated. Things do calm for me at night, but I don't remember having this type of calm recently. Will update tomorrow.Thanks everyone so far........Steven Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 9, 2011 Report Share Posted November 9, 2011 Glad to hear your system seems to be calming down a bit, Steven! That must be a relief. Hope it continues in the right direction! Quote Link to comment Share on other sites More sharing options...
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