Welcome robsydney

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Hi Everyone,

I’ve been struggling for almost two years and its a relief to find this website today. I would love to hear from anyone about whether this sounds familiar as at the moment I feel like I am the only one in the world with this weird illness.

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Welcome to the forum, Rob!

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It started about two years ago. I had a minor head injury but wasn’t knocked out and a few weeks later started to develop symptoms. I began feeling spaced out, dizzy, unbalanced when walking and it was frightening. I noticed that being in busy places or looking at moving objects triggered the dizziness - sometimes even having a conversation with someone and watching their face would do it. I would get dizzy, nauseated, and feel disoriented and unable to think. I also noticed that my vision was not clear like it had been before, particularly when moving. My eyes felt different, tired, like they were moving more slowly and like it took alot of effort to keep them still and focussed on something. By the end of a day at work I would have sore eyes. I also developed tinnitus around this time and my hearing on the left seemed slightly less sharp.

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Sometimes chronic migraine appears to be triggered by minor head injuries or even stressful periods of life. Your symptoms above
are somewhat specific to migraine - as you describe a lot of visual disturbances. Other purely peripheral diseases like Menieres
and Vestibular Neuritis do not cause visual abnormalities beyond the oculomotor system. ie. they can cause eye movement abnormalities
(nystagmus, loss of vestibulo-ocular reflex). Classic migraine visual abnormalities usually include being bothered by striped or checkered patterns
(they often seem to shimmer or move), and self-describing problems such as ‘visual snow’ or ‘tv static’. Light sensitivity is also common.

Tinnitus is not rare in MAV, but hearing loss is. Your symptoms do not sound like Menieres disease however, as Menieres usually starts
as severe episodes of spinning vertigo, at which time damage occurs, and dizziness and hearing loss become more permanent over time.

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I have had headaches all my life but have never considered myself a migraine sufferer. I get throbbing headaches on one side though. On a small number of occasions, I have had episodes of unexplained nausea and vomiting and, come to think of it, probably vertigo, and always put it down to food poisoning or something like that.

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From what you have described above, you are definitely a migraine sufferer. Sounds like it wasn’t impacting on your life too heavily at the time
though.

I have had those occasions of unexplained nausea and vomiting also - especially during childhood.

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I have seem lots of specialists. I have had all the balance tests numerous times and on a couple of occasions my caloric on the left has been down 30%. I also have a very small high frequency hearing loss on the left. Some doctors believe I have an inner ear problem and treated my with steroids orally and injected into the inner ear. This helped once but not the second time. Others have suggested migraine which at first I was reluctant to believe. However now that this has been going on and on and on I will try anything to get relief. My neurologist has put me on Prinivil which is supposed to be a migraine preventative. I have been taking it for 2 months with no relief. Now they are talking about Topamax or Lamictal but I really want to avoid anything that makes you drowsy as I already have enough problems with concentration.

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Prinivil is an ACE inhibitor used for blood pressure reduction. It has only recently been used in migraine, and has not proven
to be terribly successful so far.

Verapamil is actually first-line for MAV. The e-medicine article on the front page also describes other drugs that have
proven effective - these include propranolol, sodium valproate and amitryptiline. Topamax and acetazolamide are also two
other good ones. Methysergide is rarely used as it is too dangerous.

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I would love to hear anyone’s comments or recommendations about what medication might help because I want my life back!

Bye for now.

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Please come back and report on progress! Would love to hear that you have gotten well.

Adam

Hi Adam,

Thanks for your reply. You seem incredibly knowledgeable about this area. In fact you seem to know alot more than the many doctors I have seen. I wish I had come to this site two years ago! I have discovered over time that these kinds of vestibular problems are not very well understood. I have had so many different diagnoses over the last two years: labyrinthine concussion, vestibular injury, post-traumatic menieres, possible perilymph fistula, automimmune inner ear disease and, worst of all, anxiety. Of course I was anxious - my life had abruptly stopped! In fact it sounds like the treatments for MAV are so much less damaging than what I have gone through so far, having had intratympanic steroids, high dose oral steroids (that was unbearable!) and surgical exploration for a fistula.

The Prinivil doesn’t seem to be doing a thing so far. I have to take medications to relieve the symptoms so that I can work when they are bad. Stemetil and the other common antinausea medications don’t work very well. The only thing that helps is lorazepam - I try to take it only when I need to because of the possibility of getting addicted. I will definately try Verapamil though. I don’t want to get my hopes up too much because the disappointment has been awful with all the other treatments I had. Each time I hoped I would wake up one day and be normal again.

How are you going with your symptoms Adam? Are you still taking acetazolamide? Has it helped?

Thanks so much for this web site.

Rob

That is terrible - and not uncommon - for people to have seriously risky and sometimes destructive treatments when the diagnosis is not clear. I don’t believe in treatments like intratympanic injections (steroids or worse - gentamycin) unless the diagnosis is clear and has been put in writing by a neurotologist (not an ENT, or neurologist). I myself went through a sinus surgery 7 years ago (just after the dizziness started for me) and had much unnecessary and expensive testing. The best thing I ever did was book a flight to go and see Dr GM Halmagyi at the RPA Hearing & Balance clinic (Sydney). Halmagyi is a neurotologist, and actually a world leader in research on the vestibular system, disorders and treatment. You can find a wealth of articles written by him by doing a search for Halmagyi on medline:

ncbi.nlm.nih.gov/entrez/quer … &DB=pubmed

You may want to consider seeing him… he is not another one of those doctors who will give you some vague explanation for your dizziness. He will do a standard set of tests (ENG, rotary chair, audiogram, maybe a few others…) and his experience of dealing with tens of thousands of dizzy people and you’ll have a diagnosis at the end of it.

I actually became dizzy free on Verapamil and all my visual symptoms cleared up. I felt normal again! So it is quite clear that the rubbish that we go through is at least mostly reversible given the right treatment. I was unable to tolerate this medication though, even though it is commonly well tolerated. I was just not willing to continue taking the risk as I was having some chest pain with it. This might have just been anxiety or just normal… but I decided not to continue with it.

I am still having good results with Acetazolamide - I am still only taking relatively low doses and the world feels more still, my head doesn’t feel like its in a vice. It is probably not the first-line drug to try, but I have tried around 15 migraine preventatives myself. This has been the best so far, in terms of treatment success vs side effects.

When you do try Verapamil - you can just go to your GP. You should be able to explain to them that you are trialling migraine preventative treatment and would appreciate them assisting you by monitoring you - just so you can talk to them about side effects, and ensure they don’t conflict with any other medical conditions you may have. Be prepared for your GP not to know that Verapamil is a migraine preventative treatment however, most are pretty uninformed in that area!

Adam

Thanks Adam. There is so much confusion out there about dizziness. I have some hope now and will get the verapamil ASAP. You know how you wrote that migraines can get worse after a head injury, do you know of any articles or information about that?

Rob

Hi Adam,

Hope you had a good Christmas. And same to everyone else out there. Just wanted to let you know that my Dr put me on Topamax instead of Verapamil. So far ihave been on it for a week and am taking 25mg twice a day. I dont have any side effects at this stage and I think it may be helping. It is hard to tell because I am on holidays away in the country and the quietness also and lack of stress are also factors which help the MAV. ANyway, I’ll keep you posted. Hope things are going well for you.

Hope there is better health for everyone in the new year.

Rob

Nice to hear from you Rob. Let us know how you go over the next few weeks - I hope
to hear your symptoms stay at a low level.

Topamax is a good choice fo drug for this condition.

Adam

Hi Adam,

I was just reading your conversation with Hanna about Topamax and could totally related to what she was going through. I stopped it about a week ago because I felt worse that ever on it. Like Hannah, it made my tinnitus alot louder and I also got a feeling of pressure in my ears. I was so doped out that it was almost impossible to work. It totally elminated my libido. And worst of all, it made me really depressed. It may have helped a bit for the MAV but it wasn’t really that effective - but I only got up to 75mg. We’re now looking at verapamil or lamotrigine next. How are you going with the acetazolamide? Topamax is apparently also a carbonic anhydrase inhibitor as one of its actions. Are you getting any similar side effects?

Rob

Hi Rob

I too had trouble with Topamax, but for some people it seems to have few
side effects and dramatic effect.

I believe Verapamil is a much more tolerable drug - but it tends to be one that
either works really well or doesn’t work at all. It works for me, but I stopped due to chest
pain (could have been anxiety - I don’t know for sure).

Lamotrigine for me was like Topamax was for you - made my ears ring and I felt
absolutely horrid. Topamax just made me feel nauseated and I vomited daily on it.

The acetazolamide was not too difficult to tolerate but I have had trouble maintaining a dose
that was effective. I am (unfortunately) having more success with a benzo at the moment
(Clonazepam) than I have had in a while - so I’m sticking with that until I find something
better.

Adam

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Hi Adam,

I was just reading your conversation with Hanna about Topamax and could totally related to what she was going through. I stopped it about a week ago because I felt worse that ever on it. Like Hannah, it made my tinnitus alot louder and I also got a feeling of pressure in my ears. I was so doped out that it was almost impossible to work. It totally elminated my libido. And worst of all, it made me really depressed. It may have helped a bit for the MAV but it wasn’t really that effective - but I only got up to 75mg. We’re now looking at verapamil or lamotrigine next. How are you going with the acetazolamide? Topamax is apparently also a carbonic anhydrase inhibitor as one of its actions. Are you getting any similar side effects?

Rob

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I know what you mean. Of all the things I’ve tried, the benzos are definately the most effective. They give me instant relief. I know some people are on clonazepam long term for epilepsy, so if it works for you, maybe you should stay on it.

Rob