I was not happy with Verapamil, I even tried up to 360mg. It did absolutely nothing to help, but Ive been weening off it pretty quickly and it has made my MAV a little bit worse. The same thing happened when I quit Propranolol, migraine just doesnt like any kind of changes!
So Im now starting 10mg of Nori tonight before bed. My doc said to start at 10mg and increase the dose every 3-4 weeks until I get symptom control or bad side effects. If I tolerate 10mg well, then I will try going to 20mg after 2 weeks.
Im a little nervous because I have seen some bad stories about startup with Nori. But Im excited at the same time because this seems to workfor a lot of people. I was going to ask for Celexa, but my Neurotologist has lots of experience with Nori so I stuck with that. Im convinced that this whole mess is caused by a serotonin issue because I had an enormous amount of stress at the time this started. Serotonin plays an important role in the brain stem for sensory processing, and I think thats the site where antidepressants do their magic.
I’m so excited for you to start Nori, as that is the one I want to try. If I can find a doc to give it to me. They only want to give me propanolol. or effexor.
You say your doc has a lot of experience with Nori, what does he say about it. Just has luck with it…?
Thanks! I bet you can find a doc to prescribe this. My GP was also willing to prescribe it, he said he uses it for people with chronic pain. My neurotologist sees a lot of MAV patients, and she said she has seen good results with Verapamil and Nortriptyline. In her experience, Propranolol is not good, and she does not use Effexor either.
I asked the one doc that prefers the prop. and effexor and he said NO. He likes these two and topamax, but I already tried topamax.
The other doc I saw that said I have MAV, Im not seeing anymore, do to insurance reasons, and the neurologist (s) one said NO Mav,
other one said, I dont think its MAV… so… who knows. The PT is going to report back and tell him, not coming from neck. She thinks
its MdDS or MAV, and she says he believes in this, but wanted to treat the neck first, as my neck is horrible, 2 surgeries… So maybe he will…
From everything I have read, I think the NORI or AMI sound the best. Of course the weight gain, is really scary to me…
Its super easy to get meds from the doctors in my network, all you have to do is present a reasonable case for it. Ive even had a GP encourage me to try a benzodiazapene. I personally believe that Beta blockers are not so great for MAV, probably better for headache presentations. Keep trying till you get Nortrtiptyline!
I wanted to wish you luck with the Nori. That may be one I may want to try if the Celexa doesn’t help me. I’ve only been on it about a week and only at the starting dose of 10mg. So far, so good and no bad side effects as far as I can tell. I also just tapered off Topamax, which was the worst drug ever. I did great with Propanolol for the headaches, but it didn’t help with the MAV at all really and had to go off due to side effects also.
Thanks for the good wishes Dona. Im avoiding Topamax too because I dont want to be doped up like that, it has way too many side effects.
I took my first 10mg dose 14 hours ago and have not had any problems with it. The only side effect I have is dry mouth, but thats the least of my worries! I was a little worried that this would make the dizziness worse, but it certainly has not.
I am cheering for you with the Nori. My bottle has been sitting on my nightstand for weeks. I am trying to get the guts up to try it. I am so glad that the first dose did not cause any real issues for you. I have seen that some people have gotten good relief from it. I am hoping the same for you.
Kat, Im terrified of meds, but with Nori, the pharmacist said its short acting, so if you get dizzy, and stuff, its out of your system in 60hrs.
Topamax, took me 5 1/2 days. Coming off of it was a nightmare, I did it twice. Looking back now, I believe it made me more dizzy!
And that was only on 25mgs.
K
I am cheering for you with the Nori. My bottle has been sitting on my nightstand for weeks. I am trying to get the guts up to try it. I am so glad that the first dose did not cause any real issues for you. I have seen that some people have gotten good relief from it. I am hoping the same for you.
Kat
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I would encourage you to try it! If you have tablets, cut them in half and take 5mg if you are worried. I have capsules so I cant cut them in half, otherwise I would have probably tried that. But theres no need because the 10mg is not a problem for me. Since Im tolerating this so well, I will try to jump to 20mg in 2 weeks.
Nori seems to be one of the first meds docs use. It has a pretty good track record as far as relieving symptoms. However, if it doesn’t help, I may suggest adding in celexa or stop nori completely and try celexa. Celexa is another class of antidepressants that also has a good track record for MAV.
Okay, I just found online that Nortriptyline is NOT short acting. Its half life is 20-100hrs! So that pharmacist was wrong.
I thought that seemed weird. Sorry for the mis info.
I started on 10 mg of nori in mid-December. The first several weeks weeks were interesting. I felt that it was helping with the imbalance, but I had a few days when I had severe lightheadedness with head motion. Dry mouth and overheating were pretty common,also. The side effect that bothered me, however, was the increase in heart rate. My resting heart rate has increased @ 10 bpm. When I exercise, it increases much faster than it used to. In a panic, I spoke to my Neuro and family docs about changing meds. Both advocated that I stay on for at least 3 months before switching to allow my brain and body to adjust. I am glad I took their advice. I am still on 10 mg, but it seems to be helping. My side effect symptoms are not as pronounced, and my imbalance has improved 80%.
We have discussed taking me up to 15 mg next month. I currently take the capsules, which cannot be split to accommodate that dose, but my pharmacist told me that nori also comes in liquid form, which would give me the 15 mg option. I have also been taking magnesium, a B-complex,wearing my tinted glasses when in fluorescent light situations, and getting more frequent massages which, I believe, are also helping. Calming the MAV beast takes time and many trials, but I am hopeful that with each small step I will get my life back.
I have been on 10mg of Nortriptyline for 7 days now. I have not had an initial increase in symptoms like some people here experience. The only side effect is moderate dry mouth, which is certainly no big deal. Im not sure if it has helped the dizziness, but Im tempted to jump to 20mg really soon.
I spent almost 2 weeks on 10mg and started noticing some minor improvement on day 10. So i increased the dose to 20mg and have been there for 2 days. Only side effect is still dry mouth.
I would have to say that I feel 50% better 50% of the time, which is shocking because it has only been 2 weeks, and Im still on low doses. Sometimes I barely even notice the spaced out and dizzy feelings anymore, and I can move my head around without feeling dizzy. I went to Target today and was able to walk around and feel almost normal again which is a miracle because environments like this used to be very problematic for me. But there is still lots of room for improvement, I still have the rocking feeling when sitting still, and riding in the car at night bothers me. But I feel that these remaining problems will be cleaned up with a little more time, and may need to increase the dose a bit.
Thanks Kat, I am quite happy about having positive results so fast. I am still early on with my treatment but I tried 3 other medications without success so I know how it can be disheartening for people who are trialling meds.
Dizzy and spaced out all the time, its basically disorientation.
Motion intolerance, riding in the car makes all my symptoms worse.
I also experience rocking like a boat, its not constant, but happens pretty often.
Symptom #1 has improved a lot, but #2 and #3 still need improvement.
Thanks for the information. It is so helpful to see what helps other people and what they are dealing with day to day. I hope things continue to improve for you!
Hi you’ll, I’m on day 5 of Nori and so far so good. I don’t really have any SE except having to run to the bathroom continuously. My Neuro said frequent urination is normal and it will subside. I can’t say if it’s really helping but it’s certainly not hurting as some other meds have. I go up to 20mg’s on Sun.
Please keep us posted how it’s going for you! The fact that it’s helping you gives us such hope! And you too Kristina, how are you doing on it?