Going Back To My Crappy-Ish Doc Tomorrow

[Anoj]

Hi all, I haven't been here in ages. Guess this is the right place to come, though.

For the past year or so, I have found that my symptoms have gotten much better. This was after switching from Midodrine & Florinef to a BB, after being diagnosed as hyper. (You can tell my docs were just guessing before the "real" dx!) The other constant med has been Zoloft, which has helped tremendously, with everything. However, since I've gained so much weight on it, I am trying to get off it. I have started weaning very slowly, and boy, is life a lot harder now. In an instant, seems like a lot of progress is gone.

Another issue is that I developed hives everywhere. It wasn't suddenly, but I had to get on Allegra or else I will break out in hives constantly. Now I am suspecting a mast cell issue (DUH) and think the BB might be the problem with the hives. I'm going back to my doc tomorrow to talk about switching to Clonadine from the BB. I wonder who on this board is on or has tried Clonadine, and how did it work for you? I feel I really need a depressor factor since I'm hyper and the BB does control my syncope symptoms. I am worried that the Clonadine will make me too tired. The BB I'm on is relatively mild in that sense (Betaxolol), and doesn't cause as much fatigue as most, from what I understand.

Anyway, the other thing that got me thinking about mast cell issues is that alcohol triggered my Big Crash and many others. I started googling mast cell and a lot of other health problems I have, and, lo and behold, a lot of this seems to be related. I don't want to read too much into things or jump to condlusions, but I also have interstitial cystitis, Hashimoto's thyroiditis, hives and the alchohol thing, which all seems to have a mast cell factor. At some point in the past, I also had colitis.

Anyway, I'm doing the best I can with the docs I have locally, but it's pretty lame. I am sure he will tell me tomorrow, just as he has in the past, that deconditioning is everything.

Thanks for listening and for your thoughts.

[Anoj]

btw, i think i am finally in a position to start switching meds, as i have a new part-time job where i can rest more at home and have more "me" time for a med adjustment!

[Anoj]

Well, we decided not to switch me to Clonadine. He said it's a lot trickier becs it has a tendency to lower BP further than BBs. He prescribed a small dose of Midodrine to hopefully make up for the pooling resulting from getting off of Zoloft. He was open to the idea to Clonadine, though, so I know if I want to switch later he will agree.

The other weird thing was he prescribed Levsin becs he said I have a poor vagus reaction (whatever that means). Apparently, he did some studies a while back that said this drug reduces the vagus response that causes fainting. I don't have more info than that, other than he said he was the one who performed the studies, so he claims to know. The funny thing is, my first cardio mentioned Levsin but called it an "old wive's tale," if I remember correctly. Seeing how I'm not fainting anymore and suffering more from the pooling, I'm not sure I will even take it. Bu I did get it filled just in case. I have a feeling this may draw some comments here. Not sure what any of you know about Levsin. Kinda strange, imo! You'd think if it worked so well, everyone would be on it.

Overall, I'm more pleased with the visit than I thought I would be. He did stress exercise but seemed more open to the idea that "DECONDITIONING" is not my problem. I think this is becs I complied with every one of his tests, and they all came out negative for the other things he suspected (sleep apnea, diabetes). I think my compliance in ruling these other things out has helped the doctor/patient relationship and is helping for him to take me seriously. He is the best I have here, so I feel I'm doing the best I can locally with what I have.

Thanks for listening.

[corina]

Thanks for the update Anoj and happy that your visit went better than thought before!

[Katybug]

I'm glad it went well. :-)

[Katybug]

I just looked up Levsin. I don't take it but I do take Belladonna alkaloid when I have a severe attack of abdominal pain/diarrhea (actually I haven't had to take it in a long time now that we have me on Depakote) . But, it said that Levsin is one of the ingredients in belladonna alkaloids. I can tell you that I was careful to take the belladonna alk sparingly because it has barbiturates in it and therefore is addictive but I loved it when I did need to take a dose because I would feel normal for about a day...my POTS symptoms would be virtually gone. I think its the anticholinergic action that calmed my system and made me feel normal. Again I didn't feel like it was a permanent solution butthat was because of the addictive qualities of that drug. If Levsin is non-addictive, I wouldn't mind trying it to see if I can get the same effect. I'll have to read more about it.