My name is Bob and I was diagnosed with Vestibular Migraines back in 2016 after visiting 3 different neurologist’s over a 3 year time span. I was first put on Topamax started at 50 milligrams and worked my way up to about 125 milligrams per day. It helped with the many of my issues but never relieved the dizzy feeling. I went to my 2nd neurologist about 8 months later, came off Topamax and was put on Depakote. Tried that for awhile and that did nothing to relieve my dizziness. On to my 3rd Neurologist and I was put on Gabapentin and for about 9 months with out any changes so I was able to get an appointment at Johns Hopkins. I went and met with the Dr. at Hopkins and I was put through a battery of tests and at the end I was told that I was dealing with Vestibular Migraines and was put on Nortriptyline. It was about this time that I found this site and I have read many stories and quite honestly I have learned more about this condition from this site than all my doctors visits combined. I was doing pretty well for several years on Nortriptyline. I was at 40 milligrams and decided to start to come down and see how I was doing. I finally got down to 20 milligrams and than I started having cardiac issues. I was having heart palpitations that were at times bad that I ended up going to an emergency room and the doctors found nothing. I have been to the cartologist and after an echo cardiogram and wearing a heart monitor for a week they found nothing. I started to decrease Nortriptyline by 1 mg and as I started to decrease the cardiac issues started to go away. Currently I am on 15mg with no cardiac issues but some of the dizziness has come back. I started on 15mg of Topamax about 6 weeks ago and all was fine but just recently i have started to get what I think are anxiety issues. With all this being said I was wondering if anyone who is currently on Nortriptyline has had success with using another medication. I am not seeking medical advice I am looking at other options and I understand what works well for one may not work well for someone else.
have you considered any of the CGRP’s? I’m on qulipta… its gotten me about 60-70% better…
Hi Bob, thanks for sharing your story. Its fairly common to be on more than one medications at once, and although I never took Nortriptyline, I was on Amiltryptyline + Propanolol + Emgality at the same time for a while. Anxiety does tend to rear its head whenever we change medications around. Topomax made me a bit nervous feeling although I can’t say it was anxiety exactly. Propanolol has really helped me keep anxiety at bay personally. Anyways you are in good company here, I’ll let others chime in.
For VM diagnosis, I tried Topamax VERY briefly and it was the worse feeling I’ve ever had (depression, sadness, feeling “low”, heart palpitations, tired, etc.). Then VERY briefly tried amitriptyline and had bad side effects, as well. I did a lot of reading up on these medications and others and I decided I didn’t want to “experiment” anymore with prescription medications. I’m making lifestyle changes, instead (reducing stress with a job change as #1 priority, exercising more, making better food choices, etc.). We are all in this journey together, but on different paths to success!
I feel the same way as you when you stated, “I have learned more about this condition from this site than all my doctors visits combined.” SO TRUE! I’ve learned WAY more on this site than all my doctors combined, as well. This site has been an absolute blessing!
I believe stress is a huge factor in how this builds up for some.
Hi Bob, I’m curious…why are you trying to come off nortriptyline? After more than 20 years of severe VM symptoms and finally the last 18 months of no symptoms on 30 mg nortriptyline, I have no desire to switch anything. I had tried many different meds with no success. Are you worried about staying on nortriptyline?
Thanks to everyone who chimed in on my original post. Joan to answer your question when i was at 30mg i was feeling good and wondered if coming off nortriptolyn could be achieved so i started to reduce the dosage slowly. When i got to 20mg I started getting really bad heart palpitations. While I was going through the battery of cardiac tests I started to reduce my dosage by 1mg per week and when i got to 15mg the cardio issues stopped. I did some on line research and i found some websites that stated heart palpitations can be side effects. I have been struggling since reducing to 15mg and am looking for possible alternatives. I have to admit that my diet and sleep patterns could be better but its starting to get a bit frustrating. Thanks again to everyone for thier comments.
Hello bob you had no heart palpitations at 30mg? Have you considered going back up?
Brian. Yes i have but i am a bit apprehensive about going back up but am truly considering that move.
Thanks for responding, Bob. Good luck with trying other options/diet/sleep. As I said, I tried many different meds, but 30 mg of nortriptyline have been the answer for me , and for now, I think I’ll be happy taking 30 mg till I die!