Wow, I haven't posted in months, and reading up on my own last entry, it looks like I was doing somewhat okay as of August last year. Well, I have gone from generally feeling 90-95% for a few months, to feeling total and utter crap since about the beginning of March. The weird dizzy symptoms are as persistent and bad as ever along with other disturbing symptoms such as a vague sense of tingling in my left arm on a daily basis. I feel like I'm basically back to square one with this condition, and my ancient fears of MS or brain tumor are creeping back quietly.

No official diagnosis, but have been operating on the theory that my condition is MAV for the past 2.5+ years.

Is vestibular migraine and MAV the same thing? Are these terms interchangeable? Is a neurotologist or neurologist more appropriate in a migraine case?

Does anyone else with MAV or otherwise experience "dizzy" symptoms continuously, non-stop, 24/7? My symptoms have NEVER ceased completely for ANY period of time... when I said I felt 90-95%, my symptoms were STILL there all the time, and could intensify greatly at any given moment. The percentage just refers to a very broad and general, overall feeling as it relates to my head symptoms.

Yes many people with MAV experience continuous symptoms of an active migraine process -dizziness, light sensitivity, sound sensitivity, various types of headaches, nausea etc. all the time. Tingling is a migraine symptom as well.

MAV, vestibular migraine, migraine-related vestibulopathy, migraine vertigo, benign recurrent vertigo, vestibular menieres, MV etc. all mean exactly the same thing. They are just more specific than saying 'migraine' in general as they are emphasising the dizziness/vertigo as the main symptom.

Hi Just to second what Adam has said, my symptoms - along with many people I know with MAV were continuous. Some, like myself, only get relief with a migraine preventative. I hadn't been on the boards much either for the last year as was pretty much doing 100% a lot of the time for about a year due to taking propranonol - a beta blocker, had a relapse due to a big stressful event also around Feb/March - have now crawled out of the pit but am as you describe yourself previously - mostly doing very well but walking on thin ice, doesn't take much to take me back to dizziness. Although I can't complain as am a lot better than I was a few weeks ago.

I'd banish any thoughts of a brain tumour - after two and half yrs I think you can rule that one out. As Adam says - tingling in a limb can definitely be migraine.

Re which specialist to see. Difficult one - if it is MAV then a neurologist is best equipped to know all of the different options re migraine drugs. That said if you happen to see the wrong neurologist who doesn't know much about dizziness you could be wasting your time. I saw one like that who just kept wanting to talk about my 'headaches' and then when I wanted to talk about dizziness said I'd be better off talking to a neurotologist. In your shoes I'd probably go the neurotology route first - they will at least be very familiar with what your're going through - can give you a diagnosis and can also prescribe drugs for MAV too and then if the drugs they suggest don't work and you need someone with more specialised knowledge of migraine drugs they will probably be able to recommend a neurologist. I got my diagnosis from a neurotologist and was later referred on to a neurologist.

How come you haven't been tempted to see a neurotologist before now?

best,

Thank you both for the feedback. Adam, I recently found and joined your MAV forum. It's been a fantastic resource.

Hbep, I haven't contemplated seeing ANY doctors since the runaround I went through near the beginning of this whole thing. I saw a clueless neurologist at the time, and my GP would not give me a referral to another one. I've only been thinking about going back since this recent spike in symptoms occurred and have been feeling so crummy. I'm back to considering migraine meds again (I never ended up giving it a go! But I hadn't been tempted by this in a very long time, since I felt relatively better), and wanted to be sure I saw the right specialist this time... if I decide to bite the bullet, that is.

I've been flipping through "Heal Your Headache" again the last few days, and have felt some reassurance about the other weird neuro symptoms. Thanks again, guys - your replies were comforting. I hope both of you are feeling good!

Hi there,

I sympathise with your rubbish doctor experience, I saw a few idiots along the way. That said, it is a huge relief when you finally see someone good and they give you a firm diagnosis, worth pursuing if you can bear it.

Something I have been told by 2 different neurologists is about a recent trial with a supplement called co enzyme Q 10. Trials have shown it to be as effective as drugs in alleviating migraine - I was told to take 300mg a day. Havent't tried it yet as the other thing I was told to try (they said do one at a time to see which was working) was vitamin B2 - 400mg a day. Also shown to be effective. Of course I also take a migraine preventative alongside this. Difficult to say how I'd be doing if I wasn't.

Hope you're feeling a little better,

300 mg! I started taking 60 mg of CoQ-10 since you first mentioned it in a post months ago. I upped the dosage to 150 mg a day a few weeks ago since I had not noticed any improvement. Guess I'll have to double my current dose! CoQ-10 seems to have many other health benefits from what I've read.

I also recently upped my magnesium intake from 400 mg to 600 mg a day. I'll definitely start the B2, as well. Might as well try to tackle this thing full force with the supplements. Thanks for the tip.

I know photosensitivity is common in migraine... but have you heard of just the opposite increasing the dizzy feelings? I feel weirder and woozier in dim lighting. For example, I have a difficult time in "nice" restaurants or bars that are dark. Also, I find that my eyes have some difficulty adjusting to sudden darkness, like when I turn off the lights in the room.