So I have been suffering from Menieres now for about 16 months. I saw one specialist who then sent me to another specialist (who was nice but did NOTHING) and then I broke down (alot!!) and went to Mass Eye & Ear an was told by a Dr who does nothing but research headaches, vertigo, balance disorders etc… Long story short he dx me with Vestibular migraines with Menieres symptoms. My question to you all is, who here (because I am new and haven’t seen a board with this yet lol) has been told this and what did you do or have been doing to help keep your symptoms at rest?
I believe these are both issues of the inner ear though my view is controversial, but I don’t think its right that you can have ‘both’. How is he justifying that?
Menieres is very different, though, in that you’d expect to have vertigo attacks during which hearing is badly affected, but in MAV, the vertigo apparently doesn’t generally affect hearing.
If you don’t have significant hearing disturbance like that I’d question you have Menieres at all.
In either case, its a really tough condition to deal with.
Natural history of both conditions is very variable apparently.
I’m still getting moderate vertigo regularly, but imbalance and dizziness have all but disappeared. My worst symptom is tinnitus. I was on Amitriptyline for a while and it definitely helped with the dizziness and reducing the impact of the attacks.
My condition is thought to have occurred due to an injury to the ear in which I developed a fistula. The improvement in my condition is probably down to this mostly healing, but I’m still left with symptoms, perhaps they will improve over time …
I wish you all the best.
James
Did you have an hearing exam. Do you see low frequency hearing loss ? This can help with Meniere’sdiagnosis ?
Meniere’s is episodic and sometimes it triggers VM outside of the attacks. This I heard from my ENT.
What medications were you prescribed ? Did you find following MAV diet with less sodium helping at all ? Did they start Betahistine?
I have a VM diagnosis and currently on Amitriptyline as a prophylactic. It is helping 50% or even greater. I have a chronic imbalance thingy and not episodic.
Who did you see at MGH? I’ve been going there for treatment as well - so far they’ve been very helpful
I see Dr Steve Raush ( think thats how you spell his name). I use to see Dr Duff in Providence. Dr Raush was supper nice and really knows his stuff!!
ive been getting hearing test done every 4 months for the last year and my hearing has been decreasing every time. I get the “super” vertigo attacks once a month and just mostly dizzy/headaches at least 15 x a month.
unfortunately my vestibular migraines really did do a lot if damage. It is causing my middle ear to get all messed up and cause my hearing to decrease, tinnitus in my ear, drop attacks (which Ive only had two so far). The reason he thinks its more the mirgraines causing this is because with Meneires you don’t get headaches, where I have a headache just about 24/7. I’m going to try the Migrelief + M to see if this helps. He said "we can get the headaches to reduce, get rid of the vertigo(which i cried i was so happy) but my hearing is a big loss and we cant get that back.
But hey I am starting to look at the bright side of it and say that this is going to eventually subside and I can finally live a normal life …
The assertion that migraines do damage is pure hypothesis. I suspect the truth is much more complex and to do with inner ear plumbing and pressure regulation which is partly physical and partly central.
Have you ever been investigated for a PLF? These give you migraines and screw up pressures in the ear, potentially leading to Hydrops. That gives you a very Menieres like symptom collection but isn’t necessarily the same thing …