dolfnlvr - thanks for the “nerdiloquoy” ! SO much better than my explanation of why nortriptyline is bad for POTS. All I know is that I got some relief from headaches and dizziness, even ability to read on the computer, at a low dose. When I tried to push higher (above 25mg) to get even more symtptom relief I couldn’t stand up without feeling like I was going to faint. I ended up staying at 20mg for about 6 months and it did help with the headaches, but I didn’t realize how much it was impacting my heart rate. On that low dose of nortriptyline my resting HR was around 90-100 and now that I’m off it’s back around 75. I don’t know if amitriptyline would be quite as bad, but the doctors are keeping me off all tricyclics.
— Begin quote from "makeitgoaway"
Thanks for posting, sarahl, that’s interesting. I’m glad to know I’m not alone in being caught between the POTS–MAV continuum.
sarahl, what were your treatments for the POTS diagnosis that made you worse? Was it just the increased salt and avoiding decongestants? I had increased my salt intake on initial suspicion of POTS, and I’ve continued that practice for a year now, but I haven’t found that it either increased or decreased my symptoms. Also, I feel exactly like you - feeling like I’m going to pass out a majority of the time (and I did pass out twice at the beginning because I was clueless about the symptoms).
I’m taking amitriptyline and propranolol. Have you head anything about whether amitriptyline might make POTS symptoms worse?
— End quote
When I was first diagnosed with POTS, I went on a beta blocker and midodrine, stopped decongestants, stopped caffeine, added lots of salt, and started drinking multiple glasses of gatorade a day. I only lasted about a week on the medication because it dropped my BP so low. I had also stopped birth control pills about a month earlier, which I think is a major factor in my symptoms. I’m not sure which of those treatments made me worse. Knowing what I know now about migraine brains, doing all that at the same time was a terrible idea.
Beta blockers are out for me because of low BP. I’ve added caffeine back into my diet and have a half cup in the morning (ok’ed by headache specialist). It doesn’t seem to impact my headaches or dizziness, and I think it helps. I’ve stopped the gatorade because it didn’t help and it has lots of additives/chemicals. I was advised at Mayo to try adding salt in again unless it makes the headaches worse, walk as many times a week as possible, do strength training on my legs, and try to slowly habituate myself to working on the computer and being out in places like restaurants and stores. I’m managing this ok, but am still trying to find a medication that works. My first try was Remeron, which made the migraines worse. Next on the list is Effexor but I’m trying to address some hormonal issues before I start the trial of Effexor.