Hi all - Long-time lurker, first-time poster.
I’m about 5 years into this since onset. I was DXed with MDDS and MAV. I’m slowly making my way through the meds list but so far, have only felt a little relief from valium. I’ve also tried:
- Topamax (really bad side effects)
- Propranolol (side effects, limited benefit)
- Verapamil (no side effects but questionable benefit, currently weaning off)
Trying to figure out my next trial. My doctor suggested Effexor but I’m wondering about Nortriptyline. I was on Nort for about 10 days just after my diagnosis and didn’t have too many issues apart from insomnia. Then, I tried the no meds route for 1.5 years which didn’t work at all.
Does anybody have experience with both Effexor and Nort and insight into how they worked or didn’t for them? And if they “worked”, what does that mean to you? I have 24/7 rocking/disequilibrium that varies in intensity depending on triggers so I’m looking for something that gets me to a 90-95% steady state so I can go back to work.
Thanks for your thoughts. I’m trying to psych myself up to try something new after yet another failed attempt.
Hi, just saw this and it’s a real shame no one was able to get back to you when you posted. I’ve been dxed with dysthymia and MAV. I haven’t been on nort but am considering it. I just got off Pristiq (cousin of Effexor - a terrible drug to try to get off, don’t ever take it if you can help it) and an considering going back to Effexor. I was on Effexor in college for the dysthymia (no MAV then) and although it didn’t work I’d like to try it for the MAV now. Just wondering what your experience was like, and whether you’ve found the right med for yourself yet. It’s so frustrating bc there seems to be no clear pattern to which meds work for which people. What a crapshoot!
Hi miggyko -
Sorry for the delayed reply. I think the MAV Facebook Community is more active but I like a bit more privacy. So the short answer is that I weaned off the Verapamil completely and chose to stop trialling drugs for the remainder of this year (nothing’s pregnancy safe and we might try for kids soon). After 4 months off all meds (apart from the occasional Valium for travel), I now know my baseline and it’s not that bad. I can cope reasonably well and I am back to work. So I’m holding off on trying Nort or Effexor but may revisit later if circumstances change.
I’m so med-sensitive that coming on and off these drugs seems to have done more harm than good for me. I agree, it’s a total crapshoot and I’m not convinced that meds will be the solution for me personally.
I would try Effexor. It helped me immediately with the rocking vertigo and constant imbalance I was feeling. Nortriptyline did not do much for that.
Your mileage may vary though. These drugs affect everyone else differently.