Time to get Serious.

I am so sorry to hear about your horrendous experience. Have you tried the vitamin B5 and B6 and/or Betahistine? How old were you when you were first diagnosed?

 

I can appreciate you wanting to slay the beast. Been there! I have to say once you have tried treatments like JOH, antivirals, steroids, gent and you still are suffering it's time to get on with your life. The laby will give you the relief from vertigo attacks. You might (as a bonus) get rid of tinnitus and aural fullness and brain fog. But the one thing that keeps us from living life to it's it's fullest is the vertigo and that you can be sure will be gone if you choose to have a laby.

 

So the pituitary adenoma had nothing to do with the vertigo? You have normal vestibular function despite the frequent vertigo? Is this usual per your dr? I dont know, just have not heard it before. You dont have mav do you? Good luck. You do deserve a chance at a vertigo free life!

 

What’s you’re hearing like?

I’m sorry that you are also at this desperate phase. Definitely between a rock and a hard place... no easy choices. Hope you get good answers, good treatments.

 

OneDay
I guess the good side to having crappy hearing is that then laby is a good option for getting rid of the vertigo.

Also, I can’t remember if I’ve mentioned the cheap trick I found out for nausea - sniffing rubbing alcohol (poured on a cotton swab). A small study found it was more effective against nausea and vomiting than Zofran. That was my experience too.

 

I’m in your same boat. Recently came out of a two year remission after a shunt and have had many vertigo and drop attacks. Game changer for me as I have young kids in sports and have to work full time. A labyrinthectomy will be discussed this Thursday as I meet with my new doc as my previous neurotologist retired in December. Scary this is that today I have no tinnitus and feel great. But that changes in an instant. So I am now back pedaling.

These swift changes are confusing to say the least.

Keep us posted!!

 

Oooh free rides and confusing test results...

 

Ah yes, waiting for the next free ride..... ugh. And I never had any of those test. VEMP or VNG. Just a hearing test and describing my symptoms. I have a history of migraines in my family but can't say I have them. Just tension headaches. This game is no fun and I want my life back. Hoping surgery will do just that!

 

Saera - I was also diagnosed with just a hearing test and a list of symptoms. The ENT I saw was very sure and told me I didn’t need any other tests. Then I found this place and was told that I should push for more testing to rule out other things. I recently went to see a functional medicine neurologist and after much testing he doesn’t believe I have Meniere’s but a malfunction of sorts in my CNS. Basically my eyes and ears don’t communicate the way they should. All of this to say you should exhaust all testing you feel you need prior to a final decision of surgery.

 

Yes, this.

If you are in a state adjacent to Minnesota, you are within the area where Mayo Rochester will accept Meniere's patients. They have all the best in testing facilities and highly experienced surgeons. But there is likely a 6-12 month wait, as their ENT department is top-notch, in demand, and really busy.

VEMP requires expensive equipment that is not typically found outside of a specialty/research clinic. I had the test at Mayo, and as far as I know it didn't provide any new information. I think lots of menierians never get the VEMP test. I've tried reading academic papers about it and was still unclear about its benefit.

The VNG test is more often used, and it helps to gauge vestibular function on each side. That's good to know prior to surgery as it suggests how much new damage the surgery will do and therefore your recovery trajectory. It can also uncover weakness on the "good" side, which could be a consideration in treatment decisions.

 

That’s awesome. Mine wanted me to try that. Never did.

 

Yes! I have dizziness not classic vertigo. I saw a functional neuro guy a few days ago and wow! He had new fancy technology for diagnostics-way more in-depth testing than the vestibular testing I’ve had- and it showed the dysfunction in parts of my brain. All about how your eyes respond/communicate and proprioception. I was shocked at how much harder certain tests were. And my lines were way of target with my left eye- I’m assuming you had the same computer testing so hopefully you know what I’m talking about lol. For treatment He put some electrodes on my mastoids for ten minutes and did the tests again and there was definite improvement in the results. Didn’t change my symptoms but I’m going back next week.
He’s going to write up a report for me. I don’t know if it will help with all my symptoms but I actually have some hope for the first time!
Did he do any treatment? Definitely keep us updated!

 

I’m going to dm you.