MAV Headaches/pain

Hi, I’m a newbie and still not officially diagnosed. I have only just begun my expereince with this nasty ailment since mid January when I began to have light headedness and dizzy spells. I have an ENT who suggested MAV is what I have and a doctor who is prescribing migraine medications for lack of a better treatment plan at the moment. I have had an MRI which was clear and have seen 2 neurologists and am awaiting an MRA of my brain and neck next week. In the early stages i found chiropractic and acupuncture treatments really seemed to help but then I’d have another ‘attack’ and be back at square one again.

I have been reading a lot about MAV here and elsewhere and certainly feel there is a lot of overlap to what i have been experiencing. I’ve had the vertigo, disequilibrium and periods of being unbalanced which come and go …some which seem to have specific triggers (i.e. coffee, perimenopause) and others that seem to come outof the blue. However, my headaches or more “pain” as i call it do not fit the traditional migraine definition in the least. I have never before had a migraine (or many headaches for that matter) in my life (i’m 46 now) and the only family history is my grandmother and an aunt. Now, the head pain that I get seems to be localized on either the top or back of my head and often feels like a “tingling” or burning sensation. Sometimes it just feels like my head is “bruised” or someone is pushing down on it. I never get any kind of aura or eye pain . It has been continuous on for days and even weeks with little relief. Traditional pain killers won’t even touch it and after reading about rebound headaches, i don’t touch them any more. Only an ice pack seems to provide relief but again it is temporay. My GP isn’t completely buying the migraine diagnosis but is prescribing medications none the less hopeing they might work. I started on topomax but got to 50 mg and couldn’t stand the se’s. I felt even more dizzy than before and the headaches seemed worse. I only made it to about 3 weeks so not sure that was a fair trial but i felt so much worse I did not feel it was worth it. I’m now working off it and onto amitriptyline at the suggestion of a neurologist but it is too soon to tell. The good part is I’m able to get some sleep which is a blessing when your head is killing you. Ti also seems to lessent my head pain in the morning but just about the time that the grogginess of the ami is wearing off, the pain is back again.

I’m interested in the various descritpions of headaches or headpain that others with MAV experience? Does mine sound out of wack or consistent with your experiences? I realize everyone is different but it is the one thing that doesn’t seem to be consistent for me based on what I have read. The neurologist said mine sound more like tension headaches…but i’ve never heard of one that doesn’t let up for days/weeks on end…

Confused and in pain, Kate …

My migraines are always at the back of the head (like someones hit me over the head with an iron bar), those are the ones that last 3 days. I used to get temples pressure and tingling, pressure on top of my head like an elephant was sitting up there, sometimes the head just feels like its stuffed with cotton wool, sometimes my neck feels like there is a polker stuck up my neck into the back of my head its so stiff, neuralgia at the back of the head on one side and I used to get neuralgia in my face down the jawline. I dont think I ever had a headache in my forehead, ever, but if I press above the eyes, sockets etc. there is pain often. I have some form of background dull head (sometimes its so vague I have to shake my head to realize that its there) every day but I dont get the horrible 3 day back of the head ones much nowadays.


I recently read the presentation Scott posted on this website by John Carey about migraine management - credit to James for pointing it out to Scott - and one of the slides says:

"So how can I be sure it’s migraine?

Maintain a high degree of suspicion in the patient with
Chronic recurrent facial or head pain
Allodynia or spreading paresthesias
Associated neurological symptoms - may be chief complaint
No structural lesions to explain pain
Past history of migraines
Family history of migraines or symptoms similar to the patient’s"

(Allodynia means having a pain response to a stimulus that normally wouldn’t be painful, and paresthesias are feelings of tingling or numbness)

To me, it sounds like there is reason to maintain a high degree of suspicion in your case. Take care, and I hope the ami will start to help you even more.