KareBear Posted November 22, 2013 Report Share Posted November 22, 2013 I had been on midodrine and a beta blocker before I went to Mayo and still wasn't functional with those meds. I had already been thru many different beta blockers by the time I went. At Mayo they told me not discontinue the meds I was already on. Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted November 22, 2013 Author Report Share Posted November 22, 2013 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. Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted November 22, 2013 Author Report Share Posted November 22, 2013 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. Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted January 15, 2014 Author Report Share Posted January 15, 2014 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! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 16, 2014 Report Share Posted January 16, 2014 Jackie,This doctor sounds promising! Fingers crossed for you that he'll help you find relief and can lesson your symptoms.I hope you have success on the Mestinon!Hope you are doing well,Sarah Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 16, 2014 Report Share Posted January 16, 2014 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. Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted February 6, 2014 Author Report Share Posted February 6, 2014 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. Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 6, 2014 Report Share Posted February 6, 2014 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. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 6, 2014 Report Share Posted February 6, 2014 Nadolol works so far for my daughter. It slows the heart, allowing it to fill properly. Now it stays about 100 when she stands.June Quote Link to comment Share on other sites More sharing options...
Goschi Posted July 10, 2014 Report Share Posted July 10, 2014 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.... Quote Link to comment Share on other sites More sharing options...
andybonse Posted July 10, 2014 Report Share Posted July 10, 2014 @goschi, a beta blocker slows the heart down when infact the heart is up to keep blood going to the brain, so slowing it doesnt fix anything, in reality could make it worse. Quote Link to comment Share on other sites More sharing options...
Goschi Posted July 10, 2014 Report Share Posted July 10, 2014 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... Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted July 11, 2014 Report Share Posted July 11, 2014 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) Quote Link to comment Share on other sites More sharing options...
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