Hi everyone I’m new here. I’m 34 been suffering with MAV for years but was put on 20 mg Amitriptyline 4 years ago which was a game changer, got my life back until last last January. Still had migraines but quite rarely with vertigo lasting just days.
They’ve been chronic since January my doctors useless as are the private neurologists I’ve seen. I increased my Ami to 30mg for months with no joy so then went up to 40mg still no real progress any ideas ? Do you think I Should I keep increasing or try something else?
Huge thanks if anyone can help
Alex
I don’t know if it will help but I’m on amitriptyline and started at 10, then 20, raising 10mg every four or five days. I’d raise it by 10 mg until I am no longer having positional vertigo or the constant, day long “off” feeling. Oh btw, once I got to a level that worked for me, I’d call the neurologist’s office and tell them so they could send in new prescriptions (so when I got to say 60 mg, I’d have them call in a script to Walgreen’s for 50s and a script for 10s). It is weird because I vividly remember being at, say 60 mg, and being “off” all day. I’d up it 10mg to 70 the next night and it worked - probably 95+% better from just 10 mg increase. I’d have to raise it by 10mg once a week or so until I hit a plateau, then raise it again. Hopefully that is a little insight
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Hi, and a warm welcome to come and join us other dizzy folk! Must just suggest you have a good look around this forum, check out the Welcome and wiki pages. Also you’ll find lots of info on amitriptyline if you srsrch historic posts through. It’s popular and seems to work really well for many people.
We are a discussion forum offering sympathy and support and many areprepared to share their own experience on the often long MAV Journey but none of us is medically trained please bear in mind so the decision must be yours hopefully with the aid of a new neurologist or at least under guidance of your GP…
Sorry you have had to experience such dissatisfaction with neurologists. If the relationship has broken down first thing to do might be to find another one and get some new input into your current situation. If you have a good working relationship with a GP, sound them out to see what expertise they can offer but dont be surprised if that’s Nil but it’s worth a try. The next step might be to do a bit of research yourself to get up to speed. To understand more about preventatives have a read of Dr Hain’s www.dizziness-and-balance.com website and also look up amitriptyline etc on www.exeterheadacheclimic.org. If you aren’t familiar with it might be worth checking out the Migraine Diet and other lifestyle changes which many find help with their condition.
Amitriptyline is an old, well established drug proven to work with MAV. I have read that sometimes after a number of years it can -or can appear- to stop working. 40mg is not a very high dose so maybe an increase would be in order. Noritriptyline is a very similar drug and recently one forum member reported doing very well on 70mg of that. However it varies individual to individual. You’d obviously given the first increase plenty of time to kick in so obviously appreciate preventatives and probably major increases can take months to work. As you don’t seem to be receiving increased benefit I’d say it’s time to find some more help.
I do feel you really need input from a medical specialist you can trust and rely on. Can you give some idea of your location. With some idea of that someone on here may well know the best neurologist to see within reasonable travelling distance so you can obtain some sort of treatment plan. Once you’ve got that there are plenty of people on here who’ll help you through the various up’s and down’s. Good Luck. Helen
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Thank you so much for your kind words I’m over whelmed with gratitude. I’ve felt so alone with this illness and become quite depressed and you’ve just give me a glimmer of hope which has lifted me.
Think I’ll increase 10mg and look for a new neurologist. I see Nortryptyline pop up quite often it’s quite different to Ami then I take it.
I live in the West Midlands Worcestershire UK but I’m willing to travel far and beyond for help. I’m a bubbly, out going, outdoors person who’s become very the opposite.
Hope your all maintaining a good steady health pattern at the minute and I can somehow help you in the future.
Alex
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Hi
Don’t worry. You are never alone with your MAV problems. Not on here. You’ll nearly always be able to find a sympathetic voice and bags of experience.
Most of the balance centre type specialist are in London of Home Counties but there’s the Walton Centre in Liverpool and think there’s one in Leicester. Surely must be something in Birmingham. A migraine specialist clinic should do it. Do have a read of the www.exeterheadacheclinic.org.uk, that’ll give you idea of doses and kick in timescales. Helen
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We are all familiar with your frustrating journey. I have tried 4 meds and i convinced it won’t be my last. I try a med it works and either affects my kidney or liver or stops working. But meds do work.
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Thankyou. I was so sure I’d cracked it with the ami 5 years ago good old MAV fights back as always.
Last Neurologist I saw at BMI Priary Birmingham said to try Triptans and if that doesn’t work he’d be scratching his head 
.
This Dr S seems to get a lot of publicity…
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There are several drugs which quite regularly appear to stop working after 4-6 yrs from my research. I’m not a medic but if the increases of ami dont work for you, perhaps try migraine diet and lifestyle changes and ask yr GP for a long-term preventative like a betablocker maybe. They cd run that alongside amitriptyline essily, Tripans is to treat acute attacks far as i’m aware. There’s tons of info on what to try next. Cant really see your neurologist scratching his head is likely to be of much help to you. Arent they impossible sometimes specialists. To get out of this hole you really need to be your own advocate, try and get your GP on board (if only to write prescriptions), do some research and go to the appointment with computer printoutof what you want to try and more importantly why. Initially easiest option. Worth a try. Just dont give up on sorting this. Keep at it. It’s a bit like floundering around in a jar of black treacle I know but dont be pit off! Helen