New to the Board

Hi All,

I am new to this board, though I have looked through the information over the past month or so per a recommendation from my doctor (Dr. Rauch).

I am 29 years old and live near Boston, Massachusetts. I was diagnosed with MAV by Dr. Rauch in the beginning of April. My symptoms began in December (tilting/rocking, dizziness, neck spasms, foggy head), and over the next few months the symptoms became more bizarre and frequent. I saw a bunch of specialists, had brain and neck MRIs, ENG, VNG, hearing tests, all sorts of blood tests done, with all of them coming back normal, except some slight arthritis in my neck. Most of the doctors were generally unhelpful and unconcerned.

A friend who had been through a less severe episode recommended Dr. Rauch, and I’m grateful she did.

I am on my third week of Nori – bumped up to 20 mg at this point, with sleepiness, dry mouth, and leg spasms as the main side effects. I think that I’m seeing a slight dissapation of symptoms, but not entirely sure, as they’re pretty good at catching me off guard. I would like to start driving again soon so I’m hoping this medication is the one for me.

If anyone has tried Nori successfully, how long has it taken for you to start seeing any change?

Hi there! I am not on the same med as you…seems docs down here start with the beta blockers…I take Nadolol 40mg daily. This is my 3rd week on it, and now I am starting to feel a little improvement day by day. Definitely not where I’d like to be, but better! I too am finding it difficult to drive and haven’t since about 4 weeks ago. It seems to make my head feel so “big” and thats when I get slightly dizzy. I have been stuck at home, bored out of my mind!
Sounds as if we are heading on the right track! I go back to my doc next week, and will see what he says. He told me to expect it not to work for about 2 weeks, but I have read to give meds a try for a good 4-8 weeks, as long as it is appropriate dosage.

Thanks Jen, best of luck to you too that your current meds work. Hopefully we’ll both be back on the road soon! I guess I’ll have to be patient about seeing results :slight_smile:

Hi Jessie and welcome,

I’m not on the same medication as you, but I would say it took a few weeks for me, and that was once I was on the right dosage, so it took a few months to get onto what turned out to be the right medication combo for me. I take a beta-blocker, plus pizotifen (which isn’t available in the USA). Sometimes it’s trial and error to get the right meds at the right dosage for you, but I would say that you need to give things at least 4-6 weeks before seeing an improvement (although some people see it faster).

Hi Jessie–
I am a patient of Dr. Rauch’s too, and I’m on Nortriptyline as well; currently at 40 mgs. I have noticed gradual but definite progress starting about two weeks after I began to take it. I am now on week 7 and I would say my symptoms have reduced about 50% in severity and frequency.
Good luck!

Hi there

I am a patient of Dr Surenthiran in the UK and I too am on Nortriptyline.

I started it exactly 3 months ago and am now on 35mg. I have noticed a HUGE improvement once I hit 30mg but this week I’m having a bad week. I will continue to climb on the Nori in the hope for more improvement. Ive been about 90% in the past 5 weeks until this week.

I have also been lucky and have hardly noticed any side effects.

I hope it continues to work for me. And everyone else who is on it.

Good luck.