Hello fellow MAV sufferers. I thought I would say a hello to everyone and pose a few questions…
I have suffered with chronic occular migraines since I was 18 (now 31), I have gone through 2-3 month periods over the years where I get visual disturbances, pins and needles in my hands and feet, and generally feel exhausted. Seen several neurologists and had multiple MRI scans, all with the same verdit, chronic complicated form of migraine. Given my HUGE family history of migraine it seems correct. I have taken beta blockers and amitriptyline in the past but they haven’t helped.
In July of this year I stood up from my desk at work and had a sudden dizzy spell (lasted 15 seconds or so and was like sever lightheadedness). Following this it has been 24/7 off balance feeling (like walking on a ship), being pushed side to side when walking, immense head pressure (like a ton of bricks on top of my head), jelly legs, flickering vision, gaze instability , massive panic attacks etc. Have seen an ENT consultant who gave me propranolol (no effect), sent me for VRT physio (no effect) and prescribed 25mg of nortriptyline. I sought a second opinion from Dr S last week and have since been off dairy, caffeine, red wine, cirtus, MSG etc and upped my dose of nortriptyline from 25 to 35mg. He said it is defo a vestibular migraine.
I feel so down about how my life changed overnight. Do people get better? Am I going to be like this for years to come? Also, I got dramatically worse for 4 days after upping the dose of nortriptyline…has anyone experienced a similar effect?
So happy I am not alone, but so sad that other people are going through this nightmare! :roll:
I too am on nortriptyline, I just increased to 30mg. I haven’t had any side effects from the increase yet but every other increase up to that point I have had a racing heart, trembling muscles and a dry mouth. I did get quite a lot of headaches at first but I can’t say for sure if that was the nori. I didn’t have worsening dizziness on it but I know of people who did at first while they adjusted to the dose. I am seeing Dr S soon for a first appt. My other neuro told me stay at 20mg nori. Did Dr S tell you to go up to 35mg and stay at that dose? Is he just keeping you on one med for now?
I get occasional occular migraines. I got them since I was 20 (31 now). They are not really a part of what I suffer with MAV. My main issue is constant dizziness, off balance feelings. My life changed overnight too in April 2009. It’s hard to accept I know. I thought I had reached an acceptance of my symptoms but then I had a massive relapse which brought everything into question.
When are you next seeing Dr S?
Thank you so much for your reply. Yes I saw Dr S for the first time last week and he advised me to go up on the nortriptyline from 25mg to 35mg then up by 10mg to 75mg every 2-3 weeks if things don’t get better. I have had lots of shooting and throbbing pains in my head since upping my dose too so perhaps your headcahes were related…I think I’ll see him again in a few months.
It’s a horrible horrible condition…how did yours first start? So you’ve had it 3 years??? You poor thing. In that time have you had any times when you’ve been completely better? It’s so odd how it comes on so fast. I had never ever heard of MAV before! I have been trying really hard to get on with my life but my symptoms are very up and down, always there but I get bad exacerbations. On Monady I got as far as Waterloo station and just couldn’t get on the tube, I had to come home, grabbing the fence all the way up my road to get home. Other days I can manage but I am always off balance and the road sways side to side. I have had all my visual symptoms come back too which include after images, jumpy, flickery vision and I also see sort of TV static over everything, particularly dark surfaces. NIGHTMARE! I really hope Dr S helps you.
Yes 3.5 years now unfortunately! I have never been symptom free in that time. I gave up my job after a year and once I started taking things easy I gradually started to improve a bit although it was always there. By the first part of this year things weren’t too bad and I was hopeful that I would be ok even of I never got completely symptom free then this summer I started going dizzier and dizzier every day until I was bedbound and I also had quite a few attacks of spinning vertigo which really scared me. I went until this relapse believing I had vestibular neuritis and was compensating from that but when it got so bad again I knew this was wrong and that is when I found this forum and then got diagnosed with MAV. I saw a migraine specialist called Dr Silver. I had already got my GP to prescribe nortriptyline. When I saw Dr Silver he told me to stay on 20mg nori and to add a beta blocker called metoprolol. I tried it but it made me very tired and drugged. I would really prefer to increase the nortriptyline as I feel that it could be helping me and it does not make me tired or make me feel drugged. I feel like my head is clearer on it now that the initial headaches seemed to have stopped. I am still very dizzy but not bed bound anymore. It’s hard to know how much it might help me but that is why i decided to see Dr S. I know he prescribes nori a lot. Touch wood I have not had the visual symptoms you describe, my main symptoms are dizziness and chronic imbalance which makes social interaction very difficult for me. I also have a painful neck which aches to some extent all the time and I get very easily fatigued. I have had vertigo attacks and panic attacks too.
I never really considered MAV before this as headaches were not a feature of the problem even though I always got headaches maybe once or twice a month and visual migraine once or twice a year. No other specialist I saw seemed to consider it either. As my tests were all normal I don’t think they understood how badly I was suffering and seemed to think if they reassured me it wasn’t anything serious then I would be fine with it. However in the early stages I knew this was not a normal illness. I said at the time, ‘it feels like half my brain isn’t working’. Given that this is probably MAV then I wasn’t far wrong. I also remember saying that my biggest fear was not of a serious problem but going on feeling the same and nobody being able to find out what was wrong with me. I actually prayed that the tests would find a problem so I could validate that this wasn’t all in my head! I never heard of MAV before I got ill, never heard of the word ‘vestibular’, never knew of anyone who was dizzy and never even knew that the ears had anything to do with balance. Now I know more about all this than i ever want to.
It does seem to strike suddenly although there is probably a build up going on and we only become aware of it when the serious issues kick in like visual issues for some or dizziness in my case. My life did change overnight. My hopes for the future have gone up in smoke but I am trying to put some faith in the fact that the meds may be able to control things to a degree.
I notice you said VRT and propanolol had no effect on you. Is that no effect at all or no positive effect on your symptoms? How did you feel on propanolol? I didn’t like the way the beta blocker made me feel but maybe I didn’t give it enough chance. How long were you on it? Did Dr S say anything about the beta blocker or any other meds to try? x
That sounds awful. Did you get spinning vertigo the first time you became ill or was it only when you replapsed? I have exactly the same symptoms as you, including the stiff painful neck. I know how you feel about the tests too, I said to my husband that if they found something wrong it’d be easier in a way…then at least there might be an option of fixing it. Looking back all this came on after an incredibly stresful time at work when I was drinking loads of coffee and eating too much chocolate and exercising like mad and it all started after a night out drinking cocktails…so in hindsight if I had been more mindful of my migraine history and thought to control my lifestyle better, maybe it never would have happened!!! VRT and propranolol didn’t have any positive effects on my dizziness and imbalance, I just stayed as I was. My symptoms strated, got much worse, a little better then worse again and now they fluctuate massively day to day and week to week. That’s one of the hardest things, I can never plan anything as I have no idea how I’ll be feeling!! I am back at uni re-training so I’m trying my best to keep up with the course but at times it’s impossible. I took propranolol in the past for my occular symptoms and again when this dizziness initially flared up. They didn’t give me many side effects, only bad nightmares and lightheadedness when if i stood up too quickly…I guess as they lower blood pressure and heart rate this makes sense. I am determined to try absolutely everything to attempt to beat this thing. I wonder if botox or acupuncture have helped people…fingers crossed we will both live to see a migraine cure!!! :o
I didn’t get spinning at first. I just felt very dizzy and had massive panic attacks at first. The panic settled but I remained having chronic dizziness and imbalance. I think once or twice I had a mild spinning vertigo episode in the night during the first year but this relapse I had a few mini spins during the days I was going worse and a few proper room spinning episodes in the night. It is actually like going through a trauma having one of those. It really is scary. The fact that I didn’t report spinning at first confused all the doctors as they were not convinced it was inner ear at that time even though I didn’t see what else it could be.
I was stressed when it all started and in the months leading up to it I had taken various medications for different minor ailments. I also had bad hayfever and I felt that was something to do with it as I always feel worse when I have hayfever symptoms. I still go through all the thoughts of ‘if only I had done this or not done that’ wishing I could turn back time and do things differently and maybe this wouldn’t have happened but I guess that does no good. I know what you mean about not being able to plan anything. I have had to back out of stuff many times and I tend to just avoid things now. It isn’t good but this turns you into a recluse!
With the propanolol, did it make you feel drugged and very tired at all even in the first few days of taking it? I only ask because I am trying to make sure I didn’t quite the beta blockers too soon. I really felt it wasn’t doing me any good but I know with so many of these meds you feel worse before you feel better. My neuro did mention botox injections but said they are only available privately. I have a feeling they may help headaches but not so sure about all the other weird stuff us MAVers get x