Disopyramide?

[Clb75]

Has anyone tried this for POTS? I have a severe case per my cardio, and have been housebound for over a year. He found some reports that this has been used with POTS and NCS though it's not a first line therapy. I was curious to hear from others about any experiences or knowledge you may have.

Thanks!

[RichGotsPots]

Never heard of that being used. Sounds like the opposite of what most people need.

[SarahA33]

Clb75,

I looked up the medicine because I was curious myself. Belongs to a class of drugs called antiarrhythmics. I took the following excerpt from drugs.com so everyone can just get an idea of what you are posting about. "Disopyramide is used for:
Correcting or preventing various types of life-threatening irregular heartbeats and heart rhythm disturbances.
Disopyramide is an antiarrhythmic. It works by stabilizing the heart rhythm in conditions in which the heart is beating too fast or in an irregular rhythm (antiarrhythmic effect)."

I went through something similar with my electrophysiologist, he wanted to put me on a medication called Multaq, (which is in the same class as Disopyramide).

I really wish you the best of luck, I'm sorry that you have been feeling so sick.

Stay strong,

Sarah

[Clb75]

Thanks for your replies Rich and Sarah. My doctor said it was used off label more for neurocardiogenic syncope and can bring some improvement so he wanted to try it for pots too and see if it might help. I had my first dose yesterday and ended up in the ER last night with hypertension, even though it's not supposed to elevate your blood pressure. I guess I know the answer now, no more for me.

[SarahA33]

SO sorry Clb, trial and error of medications is exhausting both emotionally and physically, but necessary until we find something that makes us feel better.

I really hope you feel better!! - Sarah

[Katybug]

So sorry to hear that it sent you to the ER, Clb! It's so hard to test new meds. Feel better.

[Clb75]

Thanks for the well wishes:)

[RichGotsPots]

Sorry I should've been more specific as to why it was the opposite of what your doctor should be recommending in my opinion. I hate how these doctors are like closing their eyes and throwing darts "medications" we aren't guinea pigs, ugh. That medicine, Disopyramide, is an anticholinergic drug. ACH or Acetylcholine slows down the sinus heart rate, so anything that reduces ACH like an anticholinergic drug (there are a few types) is a big no no. Sometimes a doctor will want to treat one specific symptom and ignore the bigger picture. Most anticholinergic drugs have systemic affects and act differently all over the body..

[Clb75]

Thanks Rich. He was basing this on older studies that showed effectiveness in treating syncope spells and thought it might help level things out with POTS. the same thing happened to me last year when I tried lexapro. I hate being a guinea pig but was hoping something different might help improve things. My BP was running high all last week and now I've had to stop florinef and midodrine all together. I'm going to start back on a lower dose and work my way up again as my BP is starting to fall back down. My whole system has been affected and it's frustrating to have to start all over. I forgot how much worse I felt without those two meds in my system.