Following 8 long years of being inflicted with this horrible balance problem if feeling that I am walking on a water bed or air, along with of other horrid symptoms. Finally I got the answer yesterday with a consultant Neurologist. Its Migrainous Vertigo and is treatable with drugs, stating last night. It was difficult to diagnose my condition as I never have had migraine. Its a slow process but hell, do I care…just so very pleased, happy, elated to have an answer. Anxiety generally comes with this condition, (definately) but not the cause. So NO…I was not going mad after all. Double whammy…what a result. My question…does any know how long I will be on med before Im healed.
Welcome to the board, Carol!
That’s an awful long time to suffer without a diagnosis, I’m sure other board members who’ve been in that position will chime in.
But first, some reality checks here:
- Vestibular Migraine is a diagnosis, not an aetiology. No-one knows the cause and it may be there are a number of them (1). Mine was trauma to my ear. For some it might be hypertension. Some are convinced it’s their brain. I’m not sure. What is causing the migraine, you have to ask, it doesn’t just ‘happen’? What is a migraine, what bits a migraine and what isn’t. In short, can of worms.
- However, the great part of having your diagnosis now, is you can tackle it with the appropriate protocol, in our case the “MAV protocol”
- We have clinical & lots of anecdotal evidence to suggest that people feel better on the medication and the rest of the MAV protocol and it certainly reduces migraines and dizziness, but we don’t know if it’s actually treating the underlying cause. That might be left up to your body to deal with.
- Some people spontaneously improve, i’m one of them. I’ve improved even in the last year after giving up medication, though I have to be very careful with caffeine.
Judging on previous testimony a lot of people (but hard to say how many) get better after 2-4 years, though they may never quite return to the 100% they were (I’m close, but still have tinnitus and can easily relapse into imbalance if I’m silly with coffee).
Others are less lucky and seem to be stuck on the medication indefinitely.
I see you are on Amitriptyline - that was a huge help for me … good luck with it!
I’m sure you’ve been advised well by your doctors, but please take a look through the Welcome post and Support Wiki if you haven’t done so already.
- “This is because Migraine is not a homogeneous condition, as it is defined by symptoms rather than molecular biology or imaging. This means it is a “wastebasket condition” resembling many other conditions defined by symptoms – including most of psychiatry.” Dr. Hain, https://www.dizziness-and-balance.com/disorders/central/migraine/treatments/CGRP.html
You are definitely not alone. Many or most of the folks on this board experience similar awful symptoms. I thought I was the only one too—until I read here of others who had the awful floaty disconnected feeling while walking and all the other horrible sensations. There are not a lot of doctors well versed in this condition. A diagnosis is the first step, so it’s definitely something to be glad about. The downside is that it’s a tricky condition to treat, it would seem, but you’re definitely on the right track now and can begin taking concrete steps toward improvement. For some people, the migraine diet, good sleep habits, and therapy are strong complements to the medical approach.
People respond differently to the medications; the timelines seem to be very individual. If you’re not seeing satisfactory results on your current dosage after a few months, you may need a different dosage or a different medication. There are many available, and it seems to be very much a matter of trial and error to find the right drug and the right dose. It may take a while. (I’ve just begun medication #2 after subpar results on #1.) However, you’ve begun on one of the most trusted and long-used drugs for this condition, one that has helped many people.
Patience is your friend in this process, as is an optimistic outlook. Wishing you well in your treatment and recovery.
Hi, and welcome
End of this month it will be three years since I received what you did yesterday, a diagnosis of ‘migrainous vertigo’ at which point I’d had it exactly 12 years which means I’m now fifteen years in, twelve without meds or other lifestyle changes and relevant MAV info. I’d never had headaches either which I suspect is what makes diagnosis so difficult and often protracted. I too can recall that feeling of elation. A diagnosis is certainly a good start but unfortunately, with MAV, that’s all it is, a start. MAV tends to be a long journey but you may well find Amitriptyline which is well tried and respected as a MAV preventative will help you on your way.
I’d say, a very definite ‘No’ to that one. Anyone who tells you otherwise is telling ‘porkies’. It’s the ‘how long is a piece of string’ syndrome I’m afraid. According to a paper I read last week-end Ami. Can be expected to start to show results within 4 weeks of reaching the correct dose for you. This would be dose that controls most symptoms. This is alot less time than many other drugs take to work. Doctors would look to change drugs if insufficient response to drug hadn’t occurred after 4 months. Generally then they would leave you on the drug that works for one year, then review. Some people then find they are able to come off, others are signed up for life moreorless it seems. @turnitaround was told within 2-4 years MAV symptoms tend to gradually fade into the background. As I’m sure others have mentioned nobody understands the real mechanism of how the preventatives actually work but really they are just controlling MAV symptoms. They are not an actual cure. One theory is that the migraine element makes our sensies hypersensitive hence the imbalanced feelings and the aim of drugs, usually combined with diet and lifestyle changes particularly trigger avoidance, increases the trigger tolerance levels over time, and the system settles down.
There are probably lots of causes of MAV. Migraine symptoms maybe, but what caused the migraine in the first place. Some people have experienced trauma to an ear maybe. For many women hormone fluctuation probably plays a significant role so remission may well be dependent on that too. Nobody really knows for sure. Helen
Thank you L, its very encouraging to know that Im not alone with this awful condition or even insane. For now though. Its just good to have a name and know that its treatable. Also, interested to know if there is such a thing as Diet Guidelines or should I see a Dietician etc. Really keen to get the best results as soon as possible with both medication and food.
You’ll find diets in our Welcome/Wiki section. No need to see dietician unless you already have other special dietary requirements. Read our section, lots of relevant info there. And you might find this of interest too, especially the diet bits! Although it’s all good, well written and informative on MAV. Helen
Hi Carol and welcome,
There are several migraine diets, but I would start with the “easy” one:
- No coffee or caffeinated tea, wine, chocolate or ripe cheeses.
- No citrus fruit plus banana and pineapple.
- No MSG (monosodic glutamate, that is added to all pre-prepared food).
- Lots of water, fresh vegetables and fruits, and reduce salt and sugar. If you are wild enough, you can eliminate gluten to reduce inflammation. I tried, but it is really hard.
Good sleep and moderate exercise.
My neuro told me it would take at least a year to feel better. I am almost 6 months into my med (Effexor, 150mg) and I am feeling at 80%. I won’t increase it anymore, I am almost 5 weeks at this dose and I have seen a lot of improvement.
Good luck and we are here for you!