The problem of constancy

This disorder is very difficult to work out. It has its normal fluctutations, worse for a period of time, then a bit better for a while. And throw medications and other treatments into the mix and it makes it very difficult to know what’s helping and whats not. I recently weaned myself of Lamictal very slowly, finally, and after stopping, it was pretty clear to me that I was worse symptoms wise. Looking back, I think Lamictal improved things about 50%. I recently saw my ENT surgeon who suggested I try local treatments to the ear, as there have been some abnormalities on ENGs on the left in the past. I had a ventilation tube put in and am now putting dexamethasone drops into my left middle ear. So far…it may be helping, hard to know for sure at this stage. I am keen to try neurontin too but I am going to give this a go for a month or so before I add anything else in to the mix. I am beginning to wonder whether this is a disorder that you can treat from both ends - peripherally from the vestibular apparatus, or centrally via the brain. I wish there were definite answers.

You’re not wrong about it being difficult to understand.

Have a look at Robert Baloh’s work - it explains why there may be both peripheral and central dysfunction in migraine.
If the cause (of at least some of the cases) is a gene coding defect in calcium ion channels, it explains both ends of the problem as these ion channels exist in both the brain and inner ear.

That this is the cause hasn’t been proven yet but Baloh is still researching this heavily and said to a patient that he expects a real working solution to this problem within 5-10 years.

It explains the utility of a lot of migraine drugs as most of them have a calcium channel blocking action (almost all the anti-convulsants do).

I personally suspect, although this is obviously an unproven hunch, that my daily problems of dizziness, photophobia, headaches etc are a result of central ion channel dysfunction and when I have episodes of rotational vertigo this is due to peripheral ion channel dysfunction.

Hi, I just thought I would update the forum on my own position since I originally posted this question back in 2005. Hopefully, if you’re despairing with a vestibular illness as I was then this may be of interest to you as I recall often feeling frustrated by the lack of longer term sufferers with stories outlining the long term development of their condition.
Since my diagnosis and treatment for uncompensated vestibular neuritis through the use of VRT I have lived a virtually normal life. I still go through periods where I will begin to lose various facets of the balance function and I have come to instinctively know which vestibular exercises I need to sharpen up on. Luckily this process is usually quite short lived. I am convinced that these periods are brought on either by my general anxiety levels or by reading too much (as the gaze stability function has been the hardest to regain in full).There are still some aspects of my lifestyle that have to be tailored to living with a mildly impaired vestibular function, and I still avoid some environments because I know I’ll feel uncomfortable in them, but they are few and far between. Overall, (and touch wood) I’m pretty pleased with how manageable the condition has become with time.

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Encouraging to hear there is life after this or at least you can live with this condition. May I ask did you or do you take any medication for your condition and if so or not what do you think concerning the meds have they helped or if you take none did the VRT change everything for you.

I take 40 mg of propranolol for anxiety still, more as a precaution than anything else because it is so important not to get anxious about anything with regard to decompensations. In terms of getting better and actually fighting decompensations VRT was the only effective treatment.

Hi Boris,

Welcome back after all this time! Glad to hear you’ve resolved the issue and have this managed. Just wondering how you can be certain that propranolol is not treating a central issue in your case? Dr Rauch has said that VRT is usually hopeless for a MAV sufferer until the migraine is first put to bed at which point VRT is then much more effective if some residual compensation issues remain.

All the best … Scott 8)

I didn’t take propranolol until I’d been rehabilitated for about a year- I took it initially for anxiety symptoms arising from long working hours. I think the anxiety problem that surfaced with uncompensated vestibular neuritis has made me more prone to general anxiety in the aftermath of rehabilitation which is why I continue to take it. I did try propranolol when I had the severe vestibular dysfunction ( as I was misdiagnosed as suffering MAV) and it had no effect. The only significant correlation of improvement was with VRT exercises.

What a fascinating thread, do any of you still check this board?

Be interesting to hear if you think the science of MAV has made any progress since this was posted …

Hope you are all doing well!

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I don’t but I reply to any questions. Many years on from this I am aware that my gaze stability function is not fully functional but it only affects my ability to read so I have to be careful about reading too long. I will occasionally have minor decompensations and return to VRT exercises to clear the issue up. I have found that using propranolol to keep my anxiety levels down has helped in a preventative capacity though and I found that a more standard visual form of migraine that I suffer with is also much less frequent.

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Hey, thanks for jumping back in … great to hear you are still coping well! … I think a lot of anxiety stems for all of us from the unknown nature of the future and whether it will get worse.

Searching Epley I came up with this rather interesting thread I have not seen before. Packed right titbits of info. So far I have only scan read parts but wonder. Does this quote infer even its originator didn’t believe the Epley to be any use with chronic conditions, like MAV.

As I have written before I have had many Epleys and only once did it appear to work. Here in UK DIY at home Epley is considered downright dangerous and not to be attempted. I would imagine that much like current at home Covid tests few people are actually prepared or able to inflict sufficient suffering on themselves in order to obtain the necessary force to achieve success. A perfectly normal reaction.

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I never noticed this post of yours until after I’d posted about the Epley. Very unfortunately obscure heading for one of the most interesting threads I have yet to come across. I will have to find a quiet corner to fully absorb more, indeed most of it. It certainly wandered off topic to good purpose this one!

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Me to a tee. Absolutely. I have read about this pattern all over and it’s left me wondering as it is apparently so typical, why didn’t somebody recognise it and get me sorted over all those years. Discovered this very recently. First other person I have come across just like me!

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I can pretty much report the same as in 2016. I get migraines sometimes in clusters, but the ones with spots in my vision are more prevalent with chocolate. Balance related migraines I also get which I put down to stress usually. There is absolutely no doubt though that I have a constant issue with my balance if I try and read books, articles etc. My gaze stability for some reason cannot adapt and cope properly with this function. It is separate to my migraine issues and resulted from uncompensated vestibular neuritis. I don’t care what any doctor says, the vestibular system does not completely correct itself over time. Migraine is also, in my case, a separate but possibly related phenomena and I think deep down I have always known the difference.

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wow, welcome back @boris!

Sorry you are still suffering! I trust you are now a total expert on handling it as well as you might?

Boris,

This was a fascinating thread. Thanks very much for coming back multiple times over 15 years!

Emily

P.S. Botox and Ubrelvy can get me to where I’m not dizzy or hurting about 40 weeks of the year, but nothing will likely ever fix my vision. I hold steady ok (less nystagmus after VRT) but the sheer number of things I see that aren’t in front of me is astounding. I’m very happy to hear much of your other issues are resolved.

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