In 2017, my husband woke up one morning having fullness and tinnitus in his left ear. Over time he would have some dizziness and the hearing loss as well, he was diagnosed with Meineres, but I feel there is more to the issues that he is having now. Fast forward to 2023, and he barely can get out of the bathroom. He has been sleeping on an air mattress for the past couple of weeks. Here are his symptoms and what we have tried so far:
-c5 and c6 is pushing on his spine from the mri he got.
- pressure and head and neck pain
-pulsating of light when in a dark room.
-sensitivity to light.
-brain fog
-dizziness
-vertigo spells everyday for the past month lasting a couple of hours
-hearing loss in the left ear
-sensitive to sound
-pain in his right ear but still has hearing but he says it sounds muffled.
-nausea, vomiting and the pain in his head gets worse when he gets dizzy or has a vertigo spell.
It seems after he got Botox done in April he went down hill. He was doing better but now it’s been a constant struggle for him. Nurtec helps the pain and the headache but it doesn’t last. He had tried almost every medicine possible. He thought maybe it was a virus and wanted to try anti viral medication but the doctor said no there isn’t anything we can do. I feel like there is something. Is it MAV is it Meineres, is it a spine issue? Does anyone have any advice? I’m trying everything I can to help him. So I thought I would start here.
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Welcome. Sorry your husband is suffering.
Just to say: we can’t diagnose here but we can discuss.
The audio-vestibular system is extremely complex and there is a lot even the medics don’t know yet. But it’s worth giving some of the range of potential conservative treatment solutions a go.
You really need a professional diagnosis in the first instance and then if you are not satisfied, perhaps visit a different doctor and get an alternative opinion.
I’m just trying to see if anyone on this forum has had similar symptoms and issues. I understand it’s so complex. Seems like there is more people out there with these conditions than meets the eye. Just seems crazy to think there isn’t something out there to help them.
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The one thing I learned about audio-vestibular medicine is the shocking lack of progress in this space. So much for the progress of mankind …
That said, some treatments can help and you should first pursue a diagnosis (or 3!).
Its possible he might have more than one issue going on. As you say he has Menieres, but inner ear diseases and migraine are unhappy bedfellows. Migraine certainly seems to increase the risks of other vestibular issues. Does he have a history of migraine or any family history of it?
Unfortunately as I’ve found, many vestibular conditions seem to blur into each other and it can be very hard to get a definitive diagnosis as the symptoms are common to many different conditions. Is your husband taking any meds for his Menieres and is he under a doctor?
He was diagnosed with Meineres in 2018. He’s had the shots in his ears and now he has little to no hearing in his left ear. They go back and forth about vestibular migraines as well. He now is having pain, fullness, and muffled hearing in his right. But most recently the vertigo has been terrible. It didn’t start until after Botox. So we don’t know if that has something to do with the spells or not. He’s been pretty much housebound since. He says the pain worsens in his head when he goes through the vertigo spells but I didn’t think Meineres came with head and neck pain. I know there is little out there about Meineres. We have been to oto-neuros, neuros, ENT, physical therapy for the neck, shots in the neck, but nothing seems to give him relief.
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Got you. Sounds like you’ve done much due diligence, very frustrating!
Have you tried any of the MAV treatment along the lines of migraine prophylaxis? (I appreciate Botox is used for VM & MAV).
He does have family history of migraines, but not to this intensity. He has been on many medicines. He takes a diuretic, ondenstron for nausea, tizinadine as a muscle relaxer. Nurtec for the migraines and also had Diazpam when needed. Don’t mine my spelling errors with the medicine. He has tried propanoal, gabapentin, sumatriptan and rizatriptan, meclizine for dizziness.
Nothing for VM, but the Botox seemed to make everything worse. Ever since the Botox he has been housebound and that when the vertigo spells started. I know they say it gets worse before better but I think this is way too much for someone especially to have that much pain still. He says it feels as if he has so much pressure that his eyes feel like they could just pop out. Tightness and pressure across the forehead as well. He feels as if his brain is too small for his skull.
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Ah ok so you have … what about Amitriptyline or venlafaxine?
It took me 5 different VM meds before I found one I could tolerate and which has helped. I was also tried on Stemetil and Betahistine as my doctor didnt really know what the issue was. It’s incredibly frustrating and he has my sympathies. Maybe trying a daily migraine preventative like Amytriptyline might be worth a shot. It seems to help a lot of people.
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He has not tried that one before, it worth a shot though. Thank you!
Are these medicines that lower blood pressure? Never have heard of them.
Amitriptyline is one of the oldest and most successful Antidepressants. It is used off-label because it has various beneficial features for patients with vestibular issues including improving motion tolerance due to its vestibular suppressant effect, which also tackles nausea. It is no silver bullet but it eliminated my migraines almost completely.
Venlafaxine is a more modern antidepressant, although not as an effective vestibular suppressant, it is known to tackle dizziness.
There’s a lot of feedback on these medications here, just hit search or use the Tag cloud to find relevant comments.
Did you have any side effects to the amitriptoline?
Please let’s not repeat everything here.
Take look at and follow up on: Amitriptyline side effects?
Thank you! Still new to this forum.
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The dosage for migraine prevention is normally much much lower than that used for depression. Amytriptyline is often used in cases of chronic pain, whether its from nerve pain, the after effects from shingles, or where other painkillers haven’t worked.
Its also sedating so if taken at night can really aid sleep. Its rarely used as an antidepressant nowadays, as the more modern SSRI’s are normally prescribed. But it’s still used for other reasons. Its one of the most successful drugs that users of this forum have reported.
Just as a caveat I tried it and it didnt work for me but I’ve found a lot of relief with Venlafaxine, which is now becoming more widely recognised as a very effective VM medication.
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Very effective migraine preventative in general
Wow!! Thank you so much! Did you have any side effects to either of them. That’s his biggest concern.