This is my first post

[EdwardM]

Hi Scott, @Scottl
This is my first post and I don’t know if this is the right place for it, but here goes. I was diagnosed with vestibular migraine or “migraine variant” as my neurologist and ENT both called it about a year or so ago. I had VNG, hearing and all the vestibular tests and all were good, hence the diagnosis of VM. I have tried a couple of medications (propranolol, verpamil, Gabapentin, prednisone and either had bad side effects (especially prednisone and verpamil), so I gave up on all meds and tried B and Mg supplements and butterburr for a few months all with no effect.

Over the past 6 months my symptoms of dizziness balance issues and brain fog have continued to get worse. I can’t hardly drive or work anymore so my neurologist here at Kaiser in California prescribed me a starter kit (105 10mg capsules) of Nortriptyline. I have been researching the forum for a couple of months and just recently joined. All the information here has been a big help to me and I am thankful to all who post their experiences here.

I have seen a few people posting here (some a long time ago) like @penny and @Nancy_W and @Kathy_G and @larabasini that have had good success with Nort.

Lately I have been reading a few of your posts and I see that you are still posting and that you have also had success with Nortriptyline. I also see that you had a hard time when you started taking it and when raising the dose each time you increased your dosage.

So I had a couple of questions for you and anyone else that could answer my questions and give me some help with Nortriptyline. I just started taking 10mg Nort 6 days ago and I wanted to ask is it normal to feel so crappy and much more dizzy and off balance than I did before I started taking it (and I was already pretty bad)?

Next if it is normal how long did these startup side effects last for you? I was told by my doc it might take a couple of weeks to get used to it, but at 6 days in it isn’t getting any better at all.

Also when will I know if these start-up side effects have passed and it is time to raise the dose? As I know 10mg probably isn’t going to put a dent in my initial symptoms and I know I will probably have to raise the dose.

How did you know when to raise the dose? I am supposed to raise the dose by 10mg every week or two, but I see when you raised your dose even by 5mg you felt horrible for an additional 2 weeks and it took you a year to get up to 40mg. I think I read that you started to see some relief at 20mg?

Anyway, I would be grateful if you or anyone else could help me to understand Nortriptyline a bit better. I am so happy you (and others) are feeling near 100% on this medication, as it really gives me a lot of hope that I too might beat this beast someday! I am even more hopeful that I can even get off this medication (like others have done and I see you are trying to do now) in the future…

It is my dream to beat this thing and get my life back, even if that means suffering for a while on Nortriptyline!

Thanks so much for your time,

Ed

[Scottl]

Hi Ed

Sorry you’re feeling so bad. At least in this forum you’re with people who are going through or have been through the same thing, so we really get it.

Keep going with the nortriptyline. Like you say, it took me two weeks when I started for that initial crappiness to ease up. I felt more dizzy too, with loads of head pressure etc. Everybody’s different, so it could be sooner for you. Try to carry on with it anyway. Rest as much as you can. Go easy on yourself.

I was told to increase it 10mg every four to six weeks, however, given how bad it made me feel, I did it a lot more slowly. I’m a teacher so I waited for the school holidays to increase the dose so that I didn’t need to take time off.

I went up in tens to 40 initially, but when I got to that dose I felt awful and it didn’t ease up. It was just to much for me, so I went down to 35, then could eventually get back up to 40. And here, I felt absolutely fine.

I recently tried reducing the meds. I got down to 20 mg and the rocking and swaying started up so I went back up to 30. I was overdoing things and stress levels were too high I believe, if I want to come off the nort (and I will!) I know I really need to work on keeping things as relaxed as possible.

Getting better is a really slow journey and it’s hard to notice day to day if you’re getting much better. But a month or two will go by and you’ll think, ‘oh, I couldn’t have done that two months ago’ or ‘wow, I feel so much better than I did in April’ etc.

I find it helps to just accept this condition is the way it’s going to be right now, and know it will get better. It’s just going to take a bit of time. Of course, it’s frustrating and depressing, and let yourself have a little window now and then when you feel sorry for yourself but then pick yourself up and move on. It was that mental battle I found tough but important.

What are you doing diet wise? Have you made any lifestyle adjustments e.g. going to bed/ getting up at the same time every day?

Good luck Ed, I hope you get some relief soon.