I’m interested to know how many of you, how often and how severely you experience pain with your MAV attacks. I guess I don’t mean during the background ‘rocking’ some of us experience, but during the acute severe dizzy vertiginous episodes that can last for days and weeks which render us house if not bedbound (and which I’m going through at the moment).
Sometimes when the dizziness wears off a little (although it’s nearly always a painful dizziness), my head seems to tighten up like a vice and then the pain becomes unbearable, especially when I move my head suddenly. No painkiller (eg double strength prescription only codeine) will touch it. It follows the full pathway of the trigeminal; my teeth, palate, jaw, whole face aches. Aches is a bad word. like the worst toothache all over my head, extending down the back of my skull and into the nape of my neck and my cervical spine. One slight tug of my hair is agony. And all this while the dizziness is making me sway or swirl even as I lay there. A nights sleep may bring temporary relief but the tightness then pain build up again soon the next day and the whole sorry thing starts again.
That sounds horrible! No pain at all. In fact since I started getting migraines over 25 years ago, they have been “complicated migraine with aura no headached”. So when I actually get a migraine “episode” separate from my constant state of rocking, it is about an 1 -1 1/2 hour aura - visual, numbness, speech issues but then not with the subsequent headache. This is apparently not unusual but it’s more common to get a headache after the aura. The dr’s at the the CA Institute did tell me that MAV is more common in migraine aura patients. They view the constant dizziness as a type of aura on the vestibular system… honestly sometimes it seems like everyone is making up an answer…
Dizzy Lizzy,
I get this! Exactly what you describe, during an “attack” meaning when Im super dizzy, can barely get off the couch etc. My whole head aches, down to the base of my skull and my neck and it really is excruciating! It takes sometimes a week after the hardcore dizziness stops for the neck pain etc to go away. Have you tried ice or a heating pad? When I had a real bad attack about 4 weeks ago, I put a heating pad on my neck every night before bed and it helped a lot. I really hope Topamax helps you soon. I was on Nortriptyline when it either didnt help enough or wasnt working to begin with, when I had a horrible dizzy attack. I mean full blown nausea, rocking, vertigo, heavy head, just awful. I was then switched to Depakote and It took about 3-4 days for the Depakote to kick in and help.
Wow, the head in a vise describes it perfectly! And no pain med helps. I just have to stay home, usually with a heating pad and propped up in bed. The pain usually subsides slightly in a few hours and I am then able to function. Although with the dizzies, neck pain and nausea. This happens at least a few times a week. Other than this I usually function at 65%. I have given up on the heavy duty meds for now…have tried neurontin, lexapro, nortriptyline and topamax…all with disasterous side effects. For now I am taking metotoprol am and pm, B supplements, COQ10 and xanax. The xanax helps with the dizziness but not the headaches. I have good days and reallly bad days And right this minute unfortunately I am at work with a horrific headache and dizzy…wish I could go home! I have another 2 hours. This sucks!!! Take care,
I had the type of excruciating pain with the on-set of the vertigo attack that you describe, including vomiting. I was bed ridden for about a week before the pain abated and the vertigo shifted to dizzy, bouncing horizons. That was in May. I’ve been dizzy continuously for months and I’ve had one typical (for me) migraine headache since then (about a month ago) that manifested as a horrendous headache, head squeeze, sinus pain including face, teeth, and jaw, also the pain in neck area like all the muscles were knotted, plus vomiting - although no vertigo, only the same underlying dizziness. No meds touch it for me and I live too far from a doctor or hospital to go there… I’d rather die at home I feel for you!!
Cat
PS. You really need to reduce the stress in your life - I bet it’s a major factor for you as well.
I feel for you!!