In, please

hey everyone,
so i’m new around here. i have meniere’s. a so-called “classic” case by my doc for 13 years now. the problem i’m having now is intense neck pain/headaches. this is day 3 of waking up with pain so bad, it takes my breath away for a minute when i wake up and at other times during the day if i bend over, etc. otherwise during the day, the pain will ebb and flow. this morning is terrible. i have a follow up with my meniere’s doc next friday to see how i’m doing post-gent injection. i am trying to determine if mav is a factor in this at all. i have asked my doc before (who is very open to mav as a diagnosis, by the way) but he really felt that i didn’t have it as my headaches went away after i went off the birth control pill. so now these head/neck aches are coming every 2 or so weeks it seems. i can’t really separate my meniere’s symptoms out from what i understand mav symptoms to be. i’ve always had tinnitus. severe hearing loss in one ear. i’m in the supposed “late” stages of meniere’s so i’m dizzy a lot and my balance has gone to sh*t especially after the gent. lots of noise and motion is hard to tolerate.

so what do i do? pursue the possibility of mav? the only other thing i can think that might be contributing to this latest flare up is that i was on amitriptyline in hopes it might help the daily dizziness. it wasn’t working for that and after the gent (6 weeks ago), i started cutting down on my dosage. i was at 25mg, now i’m at 10mg. maybe the 25mg was just enough to keep the headaches at bay?

any advice would be appreciated. thanks!!

Nicki, there’s no reason for you to put up with pain that intense. In your situation, I’d start with a gram of acetaminophen, because I have no problem with that; and I’d probably be icing my neck, too. If neither did much for me, I’d hightail it to my GP if I had nothing better to try for the symptom.

Given that I sometimes find great benefit in such things, I also might ask for an urgent walk-in appointment the osteopath I see occasionally. I might try an isometric that I figured out helps my sore neck/shoulder area. I might carefully try back stretches from yoga or tai chi, because they can benefit my neck.

One time when I was doing real badly I was prescribed a barbiturate, other such times opioids. That kind of symptom disappeared once I finally got and could act on the right diagnosis. I’m damned lucky. Even more fortunately, I have never given any indication of developing a dependency on either med. So I would leave a message for my doc, and eat a pill (at no more than the recommended dosage).

Meanwhile, I’d do whatever else seems soothing: soul-nourishing music, reading something that engages and satisfied me, without being more challenging than I’m up for . . . .

thanks david. i’ve scrounged around the house and found a few vicodin and percocet left from some previous surgeries and procedures. they aren’t getting rid of the head/neck pain but they make it tolerable.

i have found that putting an ice pack on my neck helps a great deal. for now, until i see my e-n-t, i’m upping my amitriptyline back to 25mg. if things aren’t better by monday, then i may try my family doc but i don’t think she’ll be much help except she MIGHT prescribe some more pain killers.

i’ve spent the day with the kids and managed pretty well considering except for a serious bout of nausea. definitely plan on spending the night in a dark room and doing as close to nothing as possible tomorrow.

i’m gonna be really frustrated if i’ve come this far with meniere’s to wind up with a mav diagnosis in addition.

thanks for the reply!!

Hi Nicki,

Very sorry to hear of all this pain. I know how horrible neck pain can be.

My hunch on this is that you’re getting some Ami withdrawal. Were you having headaches before you went on Ami? I’ve had a look around on the internet and like with any antidepressant, coming off or reducing the dose can triggers wicked headaches (or neck aches). I get really slaughtered by neck pain when I reduce the dose of ADs.

Where exactly does your neck feel the worst if you palpate the different areas? Near C2 or base of the skull of more dow around the shoulders?


hey scott,

i’m starting to suspect the ami the more i think about it. i was on it before and went off of it without a problem so i didn’t even think of it at first. but then i remembered being on it before and i was on a lower dose for a much shorter time before i went off of it. i upped it back to 25mg last night if nothing else to help me sleep. will stay on that dose (i think) until i see my doc on friday.

i can feel tender spots on my neck and in between my shoulder blades. definitely base of skull and c2. yesterday it was almost too tender to even touch. i can’t reach the spot between my shoulder blades too well but it isn’t nearly as tender. my whole upper back and shoulders feel tensed up as well. but i think it’s more a reaction to the pain. cyclical pattern, i guess.

this morning the headache is still around. hurts less in the neck and more in the forehead which usually means it’s almost done. i really hope so.

thanks for the reply. hope you are doing well!!

ugh…i had clear drainage from my good ear this morning and it feels really full and i’m dealing with some semi-serious dizziness now. wtf? it’s now evening. headache is down to a tolerable level. does this mean anything to anybody? i really can’t win and don’t know which way to turn. i have way too many theories and no way to narrow them down.