I am new here, but have been diagnosed with vestibular migraines since 2014. I know I am getting a migraine when either I get flashes of light in my eye or really bad tinnitus. My head feels very foggy, I can’t talk or think properly! I have balance issues and will sometimes just fall down ( or I don’t bother moving).
But what is really frustrating; even though I have been diagnosed by a neurologist and Ent, my GP does not believe me, nor do other medical professionals. They all believe it’s “anxiety”! I was wondering if anyone has had the same experience? The neurologist prescribed verapamil; it didn’t seem to help and it made me very drowsy! I have taken Zoloft and endep ( not together) I still get migraines. Nothing seems to help and I really don’t want to go back to doctors because they don’t care! I am going to go to a dietician and maybe changing my diet will help.
Your GP sounds … unhelpful … fancy not respecting the consultants opinion?! Is he/she proposing to refer you to another specialist if they don’t agree with your neurologist?
This condition creates anxiety. But sure, anxiety can exacerbate the condition, so that point is fair and it can create a vicious cycle. When under extreme stress I have noticed that i’ve become dizzy momentarily in the past. I’ve been told this by my neurologist and psychologist.
If you are very anxious you could consider seeing a clinical psychologist. In my experience this is extremely helpful. It will help you deal much better with your circumstances and help break any vicious cycle that has emerged.
However, I must say i saw the greatest improvement when I started on the right med and sometimes this is what it takes, at least to begin with. You will note that there are other members of this board that are keen advocates of supplements which can reduce or prevent migraines.
I would recommend you review the flowchart at the bottom of this page, its the modern approach to managing vestibular migraine:
Note that Beta-Blockers and Tricyclic Antidepressants are the first go-to meds to try first.
I’m on Ami and it’s saved my sanity! It’s early days but i went from attacks every two days to no attacks three days after starting the medicine at the lowest dose.
As always discuss with your Neurologist … i’m no expert in this field!
Thanks for the response! I have had anxiety and depression before I started getting the migraines and the symptoms I have with the migraines are very different from my anxiety symptoms. It’s just very frustrating! My GP does not want to refer me to specialists or do further tests (on other health issues) as they believe I will be wasting my money! I just feel sometimes if you have a mental illness doctors are very quick to dismiss your symptoms!
What’s ami? Is it Amitriptyline? I am taking 25mg at night (the brand name in Australia is endep). Doesn’t seem to help with the migraines, helps me sleep though!
Hi 3birds, I am in Australia too. Sorry you got that response. I’m on endep too only 10mg coz I can’t tolerate any stronger. It’s very frustrating. I don’t think gps know much about MAV I am sure
I don’t think a lot of people know about vestibular migraine, every time I tell someone I have it they seem to roll their eyes! They can’t imagine that you can have a migraine without the pain!
I have been reading a lot about the elimination diet from the RPA hospital in Sydney (I have developed food sensitivities, as well). I really want to give the diet a go, but I love my nut chocolate and coffee too much! Has anyone had much luck with diet?
It’s really tough isn’t it. Not much seems known about it you’re right. I try avoid caffeine n chic but otherwise it doesn’t seem linked to my diet much
Have you seen an Ophthalmologist?
Flashes of light in your eye are not to be taken lightly especially if you have them after falling down or any trauma to the face head or neck. Flashes of light could indicate something going on with your retina of the eye. You might also want to have your peripheral vision checked and make sure that is ok and not causing any problems or any visual problems while walking. Sometimes we might think our vision is good until we go in for a check up and have to read the letters without squinting.
I have the same problem with my GP. Some are not aware and many want to just hear the word “migraine” and that is all. The TRUTH IS there are MANY DIFFERENT KINDS OF MIGRAINES.
I have the vest migraine symptoms a lot from the lights and computers 24/7 as well and it was not hardly possible for me to look at a computer.
I purchased a special pair of glasses to help block blue light. Try Axon Optics.
They helped me and adding the Premium Coating for $60 is worth it!
I saw a difference!
Diet: low sodium, lots of water and Gatorade
Good Luck
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I’ll reiterate what I’ve said before about doctors and even people who mean well but don’t have MAV - no one understands how bad it is unless they have it. But some neurologists and ear specialists (not regular ENTs) are familiar with MAV. That’s why I’m so grateful this forum for the support. I have 95% recovered with the following regimen even when I eat a glass (but no more) of red wine and other things that normally would be triggers, I hope it helps others (although I realize all are different). Gabapentin helped me for a time just to calm me down during the worst of it. St Johns Wort is also useful but be careful to ask Drs about interactions with that if you’re on meds. I went through hell with doctors too. I wouldn’t wish it on my worst enemy but did make me stand up for myself better with doctors for sure!
400mg Magnesium Glycinate (KAL Brand - found at Whole foods or online) 1x in the morning and evening - drink plenty of water
2 calcium chewables mid-morning with Vitamin D3 (1000iu) - my calcium is found at CVS (Nature Made)
400mg of CoQ10 in the morning (Trader Joes is the brand of ubiquinol I have been using since it’s cheaper than Whole Foods but you can find other brands online - Kaneka or ubiquinol is supposed to be the most absorbable, I guess)
400mg of B2 divided in 2 doses during the day to avoid GI issues with taking the whole amount together
This has completely solved my problems except for a bit of residual eye pressure occasionally if I’m using my computer super intensely under fluorescents - but it’s very tolerable. No migraines and only an occasional off feeling which I’ve learned not to panic about. I’ve been running, swimming and doing pretty much anything I want to do with this combo. I just don’t want to jinx it since it feels like I can live like this. I just pray it will continue.
The best help will be self help. Even the best doctors spend such a short amount of time with you, only you will be able to learn what things are setting off your migraine mechanism in the first place. There’s plenty of common factors… specific foods, food additives, atmospheric offenders like chemicals and fragrances, the list is endless, but starting with common things to either verify or rule them out is something only you can do. Those that take charge of their own health are the ones with the most success. Start with these 2 books… Heal Your Headache by David Buchholz, and The Migraine Brain by Carolyn Berstein. They will educate in ways seeing a specialist never will.
Hi
It’s funny you mention peripheral vision issues, as I have no spatial awareness when I am having an attack. I had to get tinted glasses for driving at night. I find most of my triggers are driving at night and bright lights. Thanks for the suggestions; I am going to look into it
