Remission....

[janiedelite]

No remissions here, but I know I'm doing better at controlling my symptoms. I have fluctuations in symptoms depending on the time of year (whenever the weather shifts from warm to cold in winter, or from cold to warm in summer, I have 2 months of pretty bad symptoms, mostly pain).

There have been 2 times I've dealt with bradycardia. The first time was a month after getting back from Mayo and I was overenthusiastic about salt and fluids. When I laid down at night, I found it hard to breathe and my pulse pressure was very wide with a pulse 38-low 40's. Not fun. The other time was while I was on Mestinon and would have periods of severe chest pain, high BP and bradycardia.

I'm on a low dose of carvedilol which does help with the tachycardia, flushing, jitters, etc. I have adequate kidney function and have learned how to spread my doses so I have a pretty even blood level all and night. Without carvedilol, standing BP is 140/90's pulse 120. With carvedilol, standing BP is 110's/80's pulse 100's. Lying down is pretty much the same with or without carvedilol: 110/60 pulse 55-65. For me, the greatest benefit of my BB is less chest pain and a bit less flushing.

I hope you can figure out your BB regimen soon! Bradycardia can cause less cardiac output and less perfusion just like tachycardia, and can feel really bad! Let us know how it goes. I'm glad you've got such a knowledgeable family member to help you!

[mountain girl]

I don't know if I call what I experience remissions or not, but sometimes I will have part of a day where I feel "normal" and even a few days in a row where I am able to do more than usual without feeling bad, unfortunately, it does not last. It feels like a mind game to me, because I tell myself, its just a few good days, but I am always so upset when a bad day or days follow several good. As for the beta blocker, my pulse runs anywhere from 60 to 96 on the med, but I feel better when it is in the 60 to 80 range, when I wake up in the morning and feel bad, that is usually a day my pulse is up, but not always. I tried to go off my beta blocker, with my drs approval to try, so I cut the dose in half. It did not work out, first day was okay, but by the second and third day, hr was up and I was feeling bad. I am persistant, so I tried three different times, but same result, so I will accept it, but for you maybe you can reduce. Good luck.