hey everyone
i have meniere’s. unilateral for 13 years with severe hearing loss. loud tinnitus 24/7. my neurotologist is thinking that i probably have mav as well. over the past couple months, i’ve had a couple migraines. the last one was pretty bad with a lot of neck pain. now my biggest complaint is the almost constant pain, pressure in my good ear. of course, having meniere’s, i’m paranoid that i’m going bilateral. the last tests done in april show that i’m not. so we’re looking at mav and possibly eustachian tube problems which i’ve had in the past. the discomfort in my good ear can reach some serious pain levels. it especially coincides with weather and as my luck would have it, we’re in one of those spells where there’s thunderstorms every day. (tmj issues have been ruled out by the way)
i’ve ordered a couple books on migraine and am still waiting on their arrival. but i’m wondering if anyone else who has mav has ever experienced severe ear pain. the dizziness has been worse lately as well. i should add that the headaches could well have been triggered by my trying to wean off of amitriptyline. at the time, i was not having headaches and hadn’t for many months. i never went off it completely but dropped down to 10mg. i’m now back to 25mg and have been at that level for a week now and plan to stay at that level until i see my oto again.
the discomfort/pain/pressure in my ear is incredibly distracting. bits of tinnitus on and off in that ear but no noticeable hearing issues. any light that can be shed on this would be appreciated!
All I can say is that at the height of my problems I felt like a cobra was wrapped around both my ear canals. I still feel a bit of this lately when certain triggers pop up - such as light and foods. The right meds and diet…plus gauging your reaction to environmental conditions is key.
I’ve been diagnosed with Meniere’s and Migraine. Also have neck pain. That’s usually my first symptom. Also have tinnitus 24/7. It gets extra intense when I’m getting a migraine and the inside of my bad ear feels like it’s being stretched from the inside and feel a lot of pressure. We’re having storms here also and that surely is a trigger for me. I’m taking 50mg of Nortriptyline and 2 doses of 40mg of Verapamil a day. Neither seem to be preventing the migraines. The only things that seems to work are Phenergan for nausea and Klonopin for anxiety. The odd thing is that since increasing Verapamil my nausea has decreased, but the migraine pain and increased. My doctor has now diagnosed me as having Transformed Migraine or Chronic Daily Headache. Will be going to the Jefferson Headache Center next month. I hope I find relief. Hope you find relief and answers also.
Hi Nicky,
I have Mav only,
but in the past, I have had stabbing pain in my ears.
It’s quite random, and not uncommon.
Just as an aside, weather fluctuations (low pressure storm ect:) can definitely be a Mav trigger.
It’s a huge trigger for me, worse than food triggers.
Unfortunately if you have both Mav and meniers,
it’s a double whammy, as both illnesses can cause similar symptoms, due to the increased ear fluid, that both meniers and mav can manifest.
thanks everybody! this is going to be a frustrating journey trying to sort this all out.
i know for sure that weather changes are partly responsible. sometimes when a bad storm is here, it feels like my eardrum is trying to crawl up inside my brain. before it seemed to happen at the same time as the storm. now i seem to be getting it either for no reason or as a “predictor” of sorts of weather to come. it’s hurting this morning and we’re due for storms throughout the afternoon and evening. nice, sunny morning now, though.
i’m also fairly sure that allergies are playing into this as well. by allergies, really i mean a reaction to the pollen counts as i’ve been told i’m not allergic to anything. anytime i get a cold, or “sneezy,” i can feel this weird soreness and pain from my ear to my throat. that makes me think of eustachian tube issues which i’ve had before.
as to what else may be triggering the ear issue, i don’t know yet.
elaine-my migraines usually begin with neck pain too. good luck getting your pain sorted out. that doesn’t sound like any fun either. i’m allergic to phenergan of all things, darn it! one of the best drugs for nausea and i can’t take it. i usually take zofran if the nausea is bad.
the ear pain seems to be aggravating the dizziness as well. got really dizzy yesterday afternoon. the weird thing is that after that the ear pain was pretty much gone for the evening.
still waiting on insurance to come through with the nasal spray. looks like it’ll be a couple more days. i really hate my insurance company right now. also still waiting on my migraine books. get this…they went from new jersey to charlotte, nc (i live about an hour west of charlotte) to greensboro, nc (further away from me…) to new mexico (really, usps, this is how you work??) and are currently now in denver, colorado. somebody needs a serious geography lesson.
oh well, thanks for the responses. wish you all well!!!
@ Nicki - just as an aside have you tried stematil (prochlorperazine) for the nausea? I find it really helps and doens’t make me sleepy like phenergan does. It also knocks the edge off some of my MAV symptoms (particularly “the world is rolf harris’ wobble board” sensation I have) and works for an hour or 2…It’s a prescription drug in australia
Sometimes I have some success with Periactin (another antihistamine - Cyproheptadine hydrochloride) available over the counter from pharmacy in AU
I don’t have Meniere’s (normal hearing, normal fluid) - dx vestibluar migraine with aura but without headache (TBTG for small mercies!!) but my left ear DRIVES ME CRAZY. :twisted: For the last 3-4 days I’ve wanted to rip my left ear off…or maybe gouge it out with a spoon. It’s itchy, sore, feels full,feels wet/waxy and I reckon I can feel the itch/sore all the way down the eustacian tube on that side. Tinnitis is much worse than normal too. I get phases of this kinda thing and usually it co-incides with worse MAV symptoms. Sometimes it also gets swollen under that ear as well. Am off to the GP again next week to get it looked at again as I’m not convinced there isn’t an ear issue going on for me.
Sorry that turned into a bit of a rant :lol: Basically I really empathise and sympathise with your ear issues