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Time to get Serious.

Discussion in 'Your Living Room' started by Onedayatatime, Jun 20, 2019.

  1. Onedayatatime

    Onedayatatime Active Member

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    It's been a while since letting my personal thread disappear. I have spent the last 3 years toying with the beast, trying treatment options that were low risk, low impact. I had some success with lOSO and JOH in the beginning. Steroids and diuretics never seemed to help much. Antivirals did not help me at all. I have learned that this beast is progressive. For me, the flares and symptoms have increased in frequency and intensity.

    Last summer, I changed ENT's and had an MRI. The MRI showed nothing related to the Menieres but found something new I had to pursue in the form of a pituitary adenoma of 1.1cm. I headed down that bunny trail for 6 months putting my menieres on hold (best you can). This year, the beast has awoken with new vigor. I went from flares every 6 months to flares every 4 weeks or less. Told my current ENT it is time to slay the beast, regardless of the cost.

    I had a VNG a few days ago which indicated normal vestibular function. I meet with my ENT next Wednesday to pick the next option which he said will be surgical. At 61, I need to work a few more years if possible. With the current rate of decline, that won't be possible without total elimination of the vertigo. I have prepared myself to ask for a Laby. This is not an easy choice, but I do not see a better option. I guess I will learn more next week.
     
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  2. Dario

    Dario Member

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    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?
     
  3. redwing1951

    redwing1951 Well-Known Member

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    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.
     
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  4. June-

    June- Well-Known Member

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    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!
     
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  5. AnneT

    AnneT Active Member

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    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.
     
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  6. Onedayatatime

    Onedayatatime Active Member

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    Thanks for all the replies. It's been 3-4 years since I had my 1st MD diagnosis. Periodic Vert events have been happening for about 10 years. I have not been through any Gent treatment. Did all the regular stuff multiple times. Still on JOH. 3 months AV's actually made my symptoms worse.
    Based on the results of my VNG, my Dr. has put me on meds to see if MAV is a possibility. If that has no positive result we start the insurance approval process for Laby and simultaneous cochlear implant. That's if the insurance will approve the implant. DR. is confident. Says he has just gone thru the process with BCBS for another patient. Took 3 months.

    Interesting thing is he told me to stop taking meclezine as he believes it is responsible for much of my exhaustion. He gave me a nausea med called Zofran to use as a rescue med.

    I'm starting a countdown timer on my phone for 30 days until my next appointment. Gotta suck it up a bit longer as I don't think I have MAV.
     
  7. Onedayatatime

    Onedayatatime Active Member

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    AnneT,
    My affected ear is useless for hearing, My voice discernment is below 20%. Hyperacusis flares helped me make up my mind about the lack of usefulness of the ear. I'm not yet sold on a cochlear implant as i'm not convinced the implant will help this condition. Doc says it will help the high noise levels that are present most the time.
     
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  8. Onedayatatime

    Onedayatatime Active Member

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    June, it took 6 months of testing and Mri's to determine the adenoma was not affecting my pituitary. The ENT and edndo docs are convinced it is not the cause of the menieres symptoms.
     
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  9. AnneT

    AnneT Active Member

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    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.
     
  10. Saera

    Saera Active Member

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    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!!
     
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  11. Onedayatatime

    Onedayatatime Active Member

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    I agree Saera with the word "confusing". My recent VNG test shows normal vestibular function. I asked Doc how that can be with cochlear nerve taking a total dirt dive and all the vertigo episodes. I thinks that's what prompted him to treat for MAV. Simply to rule it out. So here I am waiting for the next trip to vertigo disneyland where the rides are free. Doc's concern was in doing a laby only to discover it did not solve the problem.:eek::eek::eek::eek::eek:
     
  12. AnneT

    AnneT Active Member

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    Oooh free rides and confusing test results...
     
  13. Saera

    Saera Active Member

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    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!
     
  14. Joney

    Joney Member

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    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.
     
  15. Clare

    Clare Active Member

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    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.
     
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  16. Onedayatatime

    Onedayatatime Active Member

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    Figured to take a minute for a quick update. It's been 3 weeks since Doc put me on Verapamil for MAV. I've had zero vertigo attacks since starting that med. I have experienced some dizziness which scares me into thinking the storm is coming. But, it never comes. I am cautiously optimistic at his point as I was having weekly vertigo events just prior to my last appointment. If I make it 60 days, I will believe we are on to something.

    I'm a happy camper for sure.
     
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  17. Saera

    Saera Active Member

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

    Dnrpn Member

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    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!
     
  19. Joney

    Joney Member

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    I’m going to dm you.
     
  20. Onedayatatime

    Onedayatatime Active Member

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    4 weeks plus since starting MAV meds. No sign of Vertigo. Some minor dizziness from time to time but I'm starting to feel alive again. My depression has faded away and I actually sat outside tonight and had a beer and a cigar. I had a brief dizzy spell today just prior to my afternoon dose of Verapamil. Took the dose and the dizzy spell was gone an hour later. Coincidence???? Time will be the judge.
     
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