I’ve been having a terrible time the past 8 months or more, I know this is nothing compared to what most have been having so I’m not going to try and not complain - I don’t know if what I have is MAV as I get some symptoms but not others.
This is what I feel daily, sometimes its mild, other times its extreme:
I feel like my head is wobbling, like my brain or the inside of my head is rolling back and forth over and over to the rhythm of my heart beat.
I have no pain
I don’t have vertigo as in the room is spinning or I can stand balanced, but I do feel dizzy but inside my head - I don’t know if this makes sense.
I feel nauseous when it’s on the extreme point, but I still don’t feel like I’m going to fall from dizziness, but I do feel like I’m on a boat or jet-lagged.
I don’t know if these are symptoms of MAV as I don’t actually get vertigo or real dizziness, but it just feels like the inside of my head is jumping around and its making me feel like I am dizzy.
Other things I’ve had are: (not sure if they are associated)
I think MAV seems to manisfest different ways in different people. Nobody can tell you over a forum whether you can MAV as it seems to be hard enough to get a diagnosis for the people who do. the best thing to do is speak to your doctor, you could also try keeping a diary of when the symptoms appear and see if you notice any patterns that might trigger the symptoms. It could just be anxiety, are you stressed out?
It sounds a lot like MAV to me. Have you had any tests or scans done to rule things out?
The consultant I saw the other day, who is an expert in MAV, specifically mentioned this wobbly head feeling you talk about. Are you in the UK? Have you had vestibular testing done?
The best thing is to see a neurologist or neuro-otologist who knows about migraine/and or balance disorders and once you have a diagnosis you can begin trying the migraine preventative medications x
I would like to add that my brother and mother have MAV, I’m not sure if this runs in the family but it seems like it does with mine - although we seem to have different symptoms.
When ever I have gone to my GP in UK they have told me it’s stress and given me muscle relaxants which gave me some side affects so I ignored them - I’m a lot better in terms of stress which I will admit I was under extreme stress for past year or more, but a lot of other symptoms have gone away but I’m just stuck with this daily wobbly feeling. I have also had 2 years of anxiety which was mostly panic attacks associated with breathing and such, but I have got control of those but I think the anxiety has developed more into physical way? I’m not sure, I’m just guessing.
I’ve had blood tests in general and everything was fine, I haven’t had ctscans or mri’s - although I did tell my GP to refer me to a neurologist which I’m seeing in under a month (I’m based in UK).
Only today have I really thought it could be MAV and reading here has made me think it could very well be - is there any suggestions in what I should go and ask the neurologist? I don’t want to be pushed away to be told it’s stress and given muscle relaxant meds when it could be MAV and triggered by food or other things.
Family history is one of the things they look for when making the diagnosis of MAV, especially when you have no history of migraine headaches yourself - it does indeed run in families. I never had a sense of spinning, but I definitely had the daily wobbly feeling. Do you have a history of car sickness as a child? That’s something else a lot of us seem to have had.
You should see a neurologist or neurotologist, but you don’t have to wait to see one to start the migraine diet. You can try that now and see if it helps. “Heal Your Headache” by David Buchholz is the book that has it spelled out in detail. The great thing about the diet is no side effects! You just have to deal with giving up foods you like. But it’s worth a try. Take care, and good luck.
It’s annoying that the answer to what I have been feeling was right there in front of me but I chose to think that it was a bunch of other things that are wrong with me. Even though I have the daily rocking feeling I still have this great relief that I have found the reason for how I’m feeling and also based on reading other peoples stories I’ve come to realise that mine is considerably mild compared.
Is it safe to say that most people with MAV originally started with Anxiety? because that was the case for my self and my family - I guess that and stress could have triggered MAV - on the upside I feel like my anxiety is very under control, maybe my body is too exhausted to bring me to panic!