I’m new to posting so bear with me please! Thought I’d brave it with my first question on this horrible illness we’ve been hit with. So as briefly as I can, I had suffered several bouts of ‘labyrinthitis’ over the years until a year ago it developed into this chronic, daily problem. You all know the symptoms. I saw Dr Surenthiren in July and was told I had never had labyrinthitis, in fact it was MAV. So he put me on 10 mg of nortriptyline, to increase by 10 mg every 4-6 weeks until I stabilised. Two weeks ago I increased from 30 to 40 mg. I expected to feel worse initially, as I have done each time I’ve increased it, but this time I feel so horrendous I can’t handle it. Usually after a couple of weeks I pick up and can get on, but I’ve hit the two week mark now and still feel awful. I’m so wiped out I can’t do anything. At 30 mg I was doing ok, I’d say 75/80% most days, so I was getting on with life. I wasn’t great but I was ok. Going up to 40 mg has made me feel I’ve been set back six months. I don’t know what to do - crack on at 40 and hopefully improve, or go back to 30 where at least I was ok (and just hope I haven’t completely messed everything up). I wonder if 40 mg is just too much for my body to cope with. Has anyone else had a similar experience? Any advice would be really appreciated.
Welcome to the forum and I hope you feel well enough to get out real fast ;).
To make s long story short, try going down to 35 mg. take a 25 mg and a 10 mg. give it a week to 10 days. If still feeling bad, go back to 30, once you stabilize, go back up to 35 again. Don’t jump to 40 mg. 35 might be your sweet spot and you don’t want to miss it. Or you might not be able to tolerate 35 and stay at 30 mg and give it time. Or, you might be able to tolerate 40 if you go in increments of 5mg.
I could ONLY increase Nort. by 5 mg at a time.
Hi there! I’ve spent so long trawling through so many threads looking for answers i thought it was about time i just asked myself! Thanks for your response. That’s a good idea. The pills I have are in 10mgs so I’ll have to try to half them and try to get 25s from the GP next time. I didn’t even think of that. I had thought the initial effects of increasing the pills would get easier the higher I went because my system would be used to it. How wrong!
Can I ask what dose you’re up to now and has it helped?
Sure- I started at 5 mg last January 30th (2015) and went up to 60 mg by Sept of this year - did it that slowly. However, 60 mg gave me horrid headaches so I went back to 50mg and stayed there. It made some difference at 25mg I thought but nothing linear, not like some difference at 10 mg, 20 even better, 25 great. No. I could still have a 90% bad day at any given time. I’ve also found that I really didn’t notice any additional benefit after 25 mg. so, after about 8 months of being past 25 mg at higher doses, I worked my way back down to 25mg, not feeling better or worse than at 50mg. Recently had a really bad migraine stretch after a stomach bug and went up to 30 to see if it’ll help but not sure that it did.
I’m only taking it since it’s the only drug I could tolerate :(. and I think it takes the edge off. But nothing like your report of 70-80% better.
I hope you find a spot you are good at and stay there. Do NOT be afraid to experiment with your dose
Just wondering, Scott - Have you been on the diet of NO caffeine, chocolate, MSG (in all its forms), citrus, nitrates and foods high in tyramine? Nortriptyline has worked for me but I try to comply with the diet also and reduce as many other triggers as possible. I have been off my last course for about 2 months and so far all is well but I cannot even have brewed decaf. (www.vertigotalesandtastes.blogspot.com)
Hi. Yes I’ve been following the diet. I asked Dr Surenthiren about Buchhlz’s diet (which i had been following) and he said it’s too long and restrictive. He said that food then becomes a stress in itself and stress is the primary problem. He recommends the six Cs, bananas, pineapple etc, fresh bread, marmite and says eggs can be a problem. He said i can have the odd bacon sandwich! So now I still kind of stick to Buchholz’s list but don’t fret about it. I’ll have avocado or nuts and things now and then.
I haven’t really noticed if food has any impact or not. What and how much I do affects how I feel more than anything. It’s very frustrating as I’m an active person, but have to try not to get too stressed about not being able to do the things I want/need to. It’s about mentally keeping on top of it as much as anything!
I agree with you completely. I have found that 1/2 orange a week, a couple bites of avocado, 3 nuts, a few strips of corned beef, a little wine in cooking etc., do not affect me. Even a small amount of chocolate is okay (thank goodness) I just never try that all in the same day. But I cannot have brewed decaf everyday or I will have a problem after a few days. Once a week is okay. I walk (3.3 miles per hour) everyday but I have to walk by myself so I am not turning my head and talking while I walk ( doctor made me aware of this). I wear a sombrero hat to avoid the glare from the sun. I also have four programs (upper body weights and stretches) that I have bookmarked on my computer. I do these 3 days a week. I seem to be okay. The gym is too stimulating for me and is full of fluorescent lights so I stay away. I try not to overdo activities or read for too long at one time. I have to be careful not to overstimulate the nerves in my head. But of course, we are really always on the verge of a problem, especially if we overdo on any of the triggers. Good luck to you.
spinning girl at www.vertigotalesandtastes.blogspot.com
That’s interesting. I haven’t been brave enough to try any chocolate or any of the 'C’s! The doc said I need to stabalise, then be on a maintenance dose for a 9-12 months and then I’ll get to start trying food out. I love red wine, stinky cheese, chocolate etc so I really hope the day comes when I can eat them again - if more cautiously than before!
How long has this been going on for you? The doc seems sure I’m going to get better but I’m not convinced. People seem to suffer for years with this, learning to live with it.
I try to exercise too. Can’t like I used to or I feel worse but if I do nothing I feel mentally crappy, so it’s about finding a balance.
My first attack was in July of 2008. It took a few years to get the correct/helpful diagnosis. My oto-neurologist calls it “silent migraine” and says I am on the migraine continuum, even though I do not get migraine headaches. I have shared my experiences both on this site and at www.vertigotalesandtastes.blogspot.com I am finally in control - but never is the problem cured. I have gone 10-14 months at a time without any medication. When I do have to take Nortriptyline, it is for 12 weeks. I begin at 25 mgs, then 50, then 25, then 10. I was strictly on the diet at first and I have learned what items I can play around with - small tastes of things that I can tolerate. I must restrict brewed decaf to only once a week. I drink a CO2 processed instant decaf called Mountain High that I get on Amazon. No issues with this. I have detailed my diet, my shopping list and my triggers at my blog. It sounds like you are seeing one of the best doctors for this problem and as you reduce your triggers I know you will feel more in control. It takes, on average, 3-4 years for people to wrap their head around the solutions but you will get there. You just have to find out what works for you. Sorry we are no longer carefree. Comfort comes in knowing there are so many of us.