Got diagnosed with VM this week, although consultant also wrote down PPPD on his notes. I’m not on any VM medication presently, tried 4 without sucess, Propranolol, caused asthma flare, Amytriptyline and Nortiptyline gave me tremors and Sertraline, the first I tried because I had researched PPPD, it fitted my symptoms and is the currently recommended treatment. It was awful, stuck it for 5 weeks but made me nauseous and I had terrible insomnia on it.
I know I’m med sensitive but there must be something i can take. Another issue I have is many anti Ds cause sweating, which is an issue for me anyway as I have hyperhydrosis so extra sweating is a no no. All SSRIs and SNRIs list it as a side effect as do Tricyclics. So guessing they’re out.
CGRPs are not a MAV medication though, I think they are just used to suppress the migraines. I’m not sure they do anything for vestibular symptoms but you are best to hear from users.
Thank you, not sure what to think really. Amytriptyline has clearly helped a lot of members but didn’t suit me. My neuro suggested Topirmate but I’m scared of the side effects.
I’ve been reading old posts on the forum about Venlafaxine being good for vestibular issues but of course its an SNRI and sweating is a common side effect.
My issue is as I’ve mentioned before, i have Fibromyalgia so have tried many of these meds before. Its not me being a wuss, its that I’ve first hand experience of them in the past and of very unpleasant side effects. I’ve tried numerous SSRI’S, Tricyclics, SNRI’s and anti convulsants like Gabapebtin. I remember trying them and in some cases like Amytriptyline taking them for a number of years for pain and insomnia. However the withdrawal was horrendous and really messed with my mental health. I’m not keen on them for that reason.
I’m in UK, been put off Pizitofen by the weight gain issues, I have underactive thyroid so can be prone to weight struggles despite exercising frequently and eating healthily. I’m going to be honest and say all migraine treatments really suck lol.
No not yet just feeling my way around at the moment, I’m waiting to see what the letter from the ENT says as i only got diagnosis confirmed last week. The consultant sugested I get referred back to Neurology as they apparently are the migraine experts.
But of course this being in the UK there’s always a long delay for referrals. I didnt know if Botox or CGRP would work for VM? And here you can’t be prescribed them by GP.
Hi, I had terrible side effects and/or no effectiveness from several medications initially after spending 10 months on the migraine elimination diet that didn’t help either! I now take Desiprimine, 10 mg daily and so far no side effects-Alleluia! Due to memory problems from 18 months of dizziness, daily migraine, vertigo episodes several times per week sending me to bed with meclizine, I also take Memantine 5 mg. daily and this has improved my memory and alertness and energy level. Now I still have mild to moderate migraine daily with same level of dizziness but haven’t had full vertigo episode for several months so I can live with this.
Amytriptyline was horrible! Will never take that again! Nortriptyline non effective. Finding the effective medication for you is a long process sadly.
My prayers are with you all on this journey,
JKD
I agree. But vestibular migraine sucks even more. You can control the weight issue, I gained one kilo in the beginning (I was happy about this because I am very slim), then my weight stayed stable. But you have to be very careful what and how much you eat.
There aren’t treatments that work specifically for VM, all migraines are treated with the same range of treatments. Some people with VM have had great improvement with anti cgrp or botox. But yes, they are only available from a neurologist, not a gp. But VM is best treated by a neuro anyway. GPs really can’t help much tbh. The average waiting time on the nhs for referral should be 3 months. You can pay private for your first appointment if you want to speed things up and then see the neuro on the nhs for all future appointments.
I’ve seen the neuro already for a different issue and he did a brain scan to check all was well. I did mention about my balance issues twice and he suggested it might be VM but discharged me and told me to try ENT. I find the NHS very frustrating at times. I’m now going to have to wait to be referred back there. He did suggest Topamax but I’m not keen. I’ve gone back on the Nortriptyline for now.
Can understand the frustration. I was referred through two different neurologists (who both diagnosed VM) before finally getting to see a headache specialist for treatment. I hope you won’t have to wait too long. Good luck.
Thank you, I’ve learnt far more about VM on the forum than I have from NHS doctors, sadly this is all too familiar as I’m a member of a thyroid forum and the horror stories I hear from fellow members would make your hair curl. For such a common condition I find it rather indefensible. I know VM isn’t common, although I suspect its underdiagnosed. I shall keep reading posts from members and educating myself.
Yeah i’ve been told very little about VM by doctors but then again i haven’t actually asked them any questions because i read about it here and on blogs, patient experience is better than medical knowledge.
I’m trying Notriptyline again, currently on 20mg, slowly titrating up. I’m sure I read some posts that said if you get to 50mg and there’s no improvement then its not going to work, is that correct? And if this is PPPD and not VM then am I on the wrong treatment. I dont want to waste yet more time on medications that wont help. Just so confused right now.
Problem really is I’ve received very little advice from GPs, most dont even know or understand what VM is. Its above their pay grade so to speak. All my suggestions on which meds to try have been recommendations from members here.
Thank God for forums like this. Currently on Nort, 10mg did nothing, now on 20mg, but no advice from GP after that. Do I go upto 30mg and how quickly. What’s the max dose before I can expect to see any progress and how long do I need to give it before realising its not working. Whats the normal dosing protocol for Nort?
Sorry for all the questions but I’m a total newbie at this.