I know that I tend to only post my complaints so I wanted to post some good things that have been happening. I don't know exactly why but I have been almost "normal" these last few weeks. For the first time in many, many months I have so much hope again. As many of you know, I went off my meds in Feb. to re-evaluate my progress. After all my re-testing, my diagnoses had not changed and there really wasn't much improvement. I still have POTS (probably the hyperadregenic form), IST and afib. My father-in-law died suddenly in the middle of that period so I was extremely stressed, non-medicated and pretty much debilitated. My Dr. decided to put me on a calcium-channel blocker this time around. I was having too many neurological side affects on the Toprol, the anti-arrythmic drugs and the florinef. He feels that sometimes our bodies develop tolerances to meds we are on long-term and stop working. I went off the florinef because my pressure was going up now instead of down. We weren't sure how the calcium channel blocker would work because of my extreme adrenaline sensitivity but he said he had had success with some patients taking it. Anyway, at first I was horrible. I could hardly get out of bed. Heartrate was erratic, extremely high and I was dizzy and lightheaded constantly. Over time, things settled down. The biggest change I've noticed is the brain fog and loopiness that the drugs were causing is virtually gone.
The last few weeks, it's like a switch was turned on for me. I am in awe of what I have accomplished. I attended my son's high school graduation and my daughter's 5th grade graduation, then went out to lunch with friends. I prepared for and held my son's graduation party. I have attended three other graduation parties. Do you have any idea how HUGE that is for me? I couldn't even think about sitting in a group of people and holding a conversation without starting to faint. My son's party was this past Saturday. I did have a little episode but I rebounded (I notice a faster recovery than before). I did overdo on Sunday though. I was feeling so well, I decided to hit the volleyball around a bit with my daughter (I know, I know, I already smacked myself). I did have an afib run and a fainting spell but the thing is, it wasn't random. I caused that because I got overly excited that I was feeling good. For the last few years, I would be bedridden after an episode like that. Nope - not this time. I was okay in a couple of hours and yesterday was able to go into the city with my son and hubby to meet with his college counselor.
I am not naive enough to think that it will always be like this but I am thrilled that I can feel this way. I was really starting to doubt that I would ever really feel in any way how I used to. It's not like I was a mild case either. I had gotten pretty bad. It just gives me hope that even if I go through a bad season again, it doesn't mean it will be like that forever. I am concerned because I am having surgery next month but hopefully, I'll be okay.
One thing I did realize is that I had no idea how much the drugs I was taking were making me feel worse. They were a necessary evil to control my heart but they were really reacking havoc on my body and contributing to how lousy I felt. I'm not sure how or why this calcium channel blocker is working but it is working and I am grateful. I know I have to be on something to control my heartrate and I still have to remember I have this thing and stick with my limitations (like, no volleyball - DUH!) but it's just so good to feel like I'm functioning again.
Just wanted to share the good stuff with you all for a change.

trebleclef,

That is great I am glad to hear that someone is feeling better!!!! Good luck and a long, long, long time of feeling better!

Laura34

How wonderful for you - I hope it keeps up. Keep us posted on how you are doing!

Donna

It's amazing how we are so greatful that we can function at a minimum. Makes us cherish the little things in life! Glad you're doing better!

trebleclef, congratulations on all your accomplishments! I hope the trend continues for you--it certainly gives me hope.