Is Anyone Medication Free?/ Or Not In A Flare And Stop Meds?

[Faye]

4 full days beta blocker stopped to do a tilt table test, first 2.5 days I felt really awful but last day and half felt better. I am noticing my body seems almost confuse, my blood pressure has been higher (well for me) 120 ish over mid 80's to low 90's or low 110/80... My rapid heart rate seems better then some of my bad days on beta blocker... Not ideal... But manageable as long as I don't stand still for too long...

My Bp use to be 90/70 sitting and her 80... I haven't see that since symptoms in last two months...

I am still having dizzy spells but the tightness in the chest is not as bad....

Maybe my body is going thru withdraws from beta blocker and confused trying to adjust...

Just wondered if anyone is medication free or stop normal Pots meds if not having a flare or if symptom seem dormant?

I have never been more confused by my body or how it behaves then I have last couple of months.

[Katybug]

I stopped my Verapamil on my cardiologist advice because it wasn't controlling my heart rate or stabilizing my bp. I'm on so many meds that we try to stop anything that isn't working. I don't seem to be any better or worse off of it.

I can't take beta blockers because of my MCAS. They make my breathing very labored.

For now, we are going back to basics. My neuro is going to redo my ttt since it's been 5 yrs. In the meantime, I'm about to start a prescription salt tablet that the cardiologist gave me to take in the morning.

[Faye]

I am not sure what to make of it, but it seems like being off the beta blockers the last 2 days are manageable, I am very grateful and trying not to think about tomorrow, just be happy for the moments...I actually had a very busy last 3 days and was able to pull thru without too many issues, I had to make adjustments, but am very pleased with having what is closer to typical life... So for I will be grateful for it.

Just wasn't sure if others found they could manage their pots without meds and life style changes, I mean we all have really trying times regardless or meds, but am hopeful if it is possible to do it medication free...if long term the answer is no, I will go with it...but still hoping

[MomtoGiuliana]

I have been pretty stable for years, but I continue to take a small dose of pindolol (beta blocker).

[artsystacey]

Hi Faye,

I discontinued beta blockers because while it controlled my HR, my BP was too low and my HR was 30 while I was laying flat. I also used to be on Midodrine, which made my hairs stand on end and gave me hot flashes. I'm now medication free and just manage my symptoms day by day. When I first stopped the beta blockers my BP was quite high, almost as if my body was confused and adjusting, but now it's back to normal.

You may already know these tricks/tips, but these are the things that have helped me tremendously:

• Consistent light to moderate exercise (I had to work up to this - I started off in the pool)
• Drinking 3 liters of water a day, in combination with electrolytes
• Increasing salt intake
• Wearing compression stockings, especially if I'm going to be on my feet a while or sitting for a long period of time
• Meditation and light yoga
• Smaller meals throughout the day
• Not eating carb heavy meals

Hope this helps.

[Faye]

Thanks for your responses...

I may need to have more fluid then the 64 oz of fluid and with electrolytes

I have just now this week again trying light exercise again..use to do 5 miles a day, now a stroll of 15 minutes sends me to a bad place. I tried to get back to my yoga but everything I do it makes me so dizzy and things start going dark....I may need to just find some floor exercises and think of baby steps...

Just a whole new world for me....and I hear a lot of Trail by error here and wax and Wayne.....don't care for it, but am trying to learn to embrace it and work thru it. Nice to have a place to get to hear all of ppl experience....it helps a lot