Hi, my name’s Chris and I’m 48 and I’ve just found this forum after years of contributing to the Meniere’s Disease Uk forum. I’ve had symptoms for over 10 years - namely, vertigo, dizziness, right-sided headache, disequilibrium, problems with bright lights etc. Up till now I’ve believed I had atypical Meniere’s - well that’s what I’ve been told by ENTs and I don’t have hearing loss.
Currently, I’m not on any meds - I find the drugs prescribed for the dizziness very unhelpful and leave me feeling like I’m a zombie. Daily, I have dizziness, mild to moderate headaches, positional dizziness especially when bending or lying down, a constant feeling of motion or rocking etc. I have tried many many months of VRT - with little success. I have been trying to match my symptoms to MAV and I think they fit pretty well. What do others think?
I’m thinking of getting a private neurology opinion but I need to go armed with as much information as I can so I don’t get fobbed off. Reading some of the contributions on the forum, it seems as though migraine treatment shows mixed success.
The diagnosis of atypical Menieres is an ENT thing - neurotologists don’t diagnose it and the symptoms are thought to be that of a migraine variant. Is there any possibility you can see a neurotologist - the real dizzy specialists?
You are right that migraine treatment shows mixed success - some find the right treatment for them immediately and others require trials of many medications to get there - I have trialled over 15 myself but have eventually been successful in finding something that helps me get on with life.
What you describe sounds similiar to what I experience from day to day. I could add quite a few sypmtoms though.
Regarding seeing a neurologists, not all of them have heard of MAV or even silent migraines locally. I don’t know what you have availible in the UK. I had to search for a while before I found a doctor that was able to give me a “possible” diagnosis of MAV.
thanks for your replies. I am currently seeing what a course of craniosacral therapy might do before trotting off to the neuros - anything to avoid the drugs I guess. Is head pressure another symptom - at the moment I get this a lot, that, and neck stiffness too?