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Has Any Med/supp Decreased The Amount Your Hr Increases From Standing?


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I will report, I tend to overheat easily in the summer and to be sort of cold in the winter. When I do biofeedback and get my circulation going, I warm up, but otherwise, I'm in a heavy hoodie and sweats... With a blanket!

It's day 2 of the Muira Puama tea at a weak dose, and I'm getting hot more easily than usual despite it being quite chilly here in IL and me having been freezing all of the time until today. I'm not having hot flashes, but if I move around (just walking around house and such), I'm warming up quickly and in general, I'm not getting cold as rapidly. I found this interesting because its thought Muira Puama may inhibit acetylcholine. Mestinon does thisas well and people report feeling quite toasty on it.

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Medic Girl, that's probably my answer. They didn't want to come right out of the gate with Mestinon. I'm happy they had other options they could offer you than the beta blocker/Midodrine approach.

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  • 1 month later...

I went to an geneticist (Dr Tinkle) who focuses on connective tissue disorders a week and a half ago. He diagnosed me with EDS 3. While he doesn't diagnose POTS, he sees it quite often since his main focus is EDS.

Guess what he said? The next drug that would make sense to try would be MESTINON! You know how he knew this? He reads journal articles on EDS and dysautonomia and the like. He cited Dr. Grubb's research without me needing to whip out my journal article. **sigh of relief**

He said he could refer me to a neurologist or cardiologist who deal with POTS if I'd prefer, but that otherwise, he'd be fine with prescribing it. I said I'd be fine with him prescribing it, because at this point, I really don't know what a POTS specialist would have to offer me since I've had all of the Mayo testing done....

I will update here to let you know how I respond to Mestinon. With the big fuss I've put up over it, I'm guessing I will have some sort of horrid reaction. Ha! :rolleyes:

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I hope that you have success with the Mestinon to.

I would only suggest to take a very light dose to start. I reacted poorly to it. Very poorly. I have not been able to find anyone that reacted the way I did, so I would think that I was an unusual case. I wish that I could take it, but I cannot.

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  • 3 weeks later...

The Mestinon is waiting for my fiance to pick it up at the pharmacy! It took over three months, but I finally will get to try it. I will share my results with you-- maybe make a Mestinon journal thread? I always thought it'd be neat if there were threads for different medications and people wrote their experience, first day by day, then week by week.

Thanks for the warning gjensen, I will proceed cautiously.

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I really hope that it is a good option for you. I had many reasons to think it would help me.

I was and still am disappointed that it did not work out for me. I tried it four times to be sure. I wanted it to work that bad. I had the same reaction all four times.

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  • 5 months later...

Bystolic has definitely reduced the amount my HR rises when I get upright. Since yesterday, I take midodrine, this seems to decrease to rise even more! I was just 15 minutes on my feet and the HR only increased from 68 to 83!

But: I simply don't feel different!! When I am upright, I feel extremely potsy, as I do since 1,5 years... So strange....

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Andy, I know this mechanism of betablockers, and I was in fact not very happy when I had to start to take one in order to calm down my overshooting supine tachycardia...

So, while I was not at all surprised that taking it didn't fix anything, I still can't understand why I don't feel in fact worse on the betablocker.... With or without it - I always feel the same...

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Beta Blocker (Propranolol) definitely lowers my standing HR more than my resting HR (i.e. decreases the difference between the two.) I do not necessarily feel better on a larger dose despite more improvement in the numbers. Without the small dose my standing HR and HR in reaction to things feels awful like it is way too reactive.

Tried Clonidine and it made my HR go all over, even the ER form. Tried the patch but did not like the feeling on it- would have to say it was like the HR reacted to my own feelings more, best I can describe it, anyways did not like the feel at all and stopped it.

I found this thread very interesting as it seems people react very differently from each other, and this is not apparent in studies of groups (i.e. articles on POTS)

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