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Menier’s Limbo

Discussion in 'Your Living Room' started by Fisherman42, Apr 17, 2021.

  1. Fisherman42

    Fisherman42 Active Member

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    Does any one feel like they’re in some kind of Limbo when it comes to this disease? I’ve been fighting this disease for about 7 years now but it feels like a lifetime. I started with SERC then John’s regiment a whole list of medications from diuretics to monolauren to b6 etc.,etc. If it was out there I tried it. I had a spell of about a year and a half when I was on AV’s that I was almost symptom free except some tinnitus but I just wound up relapsing back into the old pattern. My old ENT that I started the journey with started to pass me off to his PA and she would ask me if Ive been eating too many pizzas. Obviously no help there. So I sought out a new ENT that specialized in Vertigo and made an appointment. She immediately told me to stop everything because if I’m having attacks, floating and general sense of malaise then what good is what I’m taking. Reluctantly I agreed and she was right I don’t feel any different my disease must have out grown my own personal treatment plan. Now what right? She tried steroid shots with no success and told me to get and ENG because that’s something that should have been done by now. She seems like she really wants to help, however she was 9 mos. pregnant when I started to see her and has left on maternity leave. Just my luck. I have to see another ENT in her office that from the looks of his background he’s not my guy. Don’t really want to switch again will have to tough it out until she comes back my ENG is next week maybe get somewhere with that. Oh and by the way got diagnosed with sleep hypopnea that appears to been going on for a few years. So right now every night is a battle with that. I’m so tired, tired of all the treatment that doesn’t work, tired of all the suggestions that don’t pan out, just plain tired. I’m thinking when she comes back I’m going to hit her with the GENT shot and try to end this roller coaster. I’m lucky and I know it from stories I see here of people not being able to get out of bed. I can still somewhat function attacks come weeks and sometimes months apart, but the constant twinge of one wanting to start is always with me. Sorry for the long post but I guess I just wanted to know if anyone is “mild menieres” like me and if they to just keep spinning in limbo too. Thanks all and be well, God Bless. Ray
     
  2. Jimii

    Jimii Member

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    I kind of know how you feel. I am seasonal though. (March to October) And my third season started right as predicted in late March. So far no major vertigo attacks yet this season, but I know they are coming. I only go to the Dr. once a year to get a hearing test and just talk. I have no expectations they can help until I require surgery. I am currently on the John of Ohio regimen. It may be helping, but I am not sure yet. I almost wrote it off back in February but continued anyway.
    I would consider mine typical Meniere's, not mild, but tolerable as I know what to expect.


    Jim
     
  3. jaypr

    jaypr Member

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    One line in your post caught my eye. Which was about the PA's PIZZA comment which you dismissed. Pizza is full of MSG. MSG along with aged foods high in Tyramine, alcohol particularly dark drinks like rum, red wine,port caffeine,cheese can (for some people,including myself) be a big culprit for setting you off on a spinning extravaganza. Whenever I post on here, which is very little these days I try to let people in on what worked for me. I was diagnosed with menieres but it was MAV. That could also be the case with you. Please refer to my posts on the recent thread about alcohol. Wishing you well.
     
  4. JohnL999

    JohnL999 Member

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    Fisherman42 did you quit taking the AVs and that is when your Meniere's came back, or did it come back while you were on the AVs?
     
  5. Fisherman42

    Fisherman42 Active Member

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    Came back while I was on the AV’s,l even upped my dosage and it had no effect.
     
  6. Fisherman42

    Fisherman42 Active Member

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    Thanks but I wasn't being submissive to the fact that pizza is loaded with salt and varying other Chemicals that aren’t particularly good for MM. I was reacting to the dismissive nature that the physicians assistant had to my condition and the lack of interest in helping me.
     
  7. Rubygirl

    Rubygirl Member

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    What's your diet like? What have you added/cut out/restricted, if anything?
     
  8. JohnL999

    JohnL999 Member

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    Ugh sorry to hear that Fisherman. Mine symptoms have pretty much completely disappeared after several months on AVs. I sure hope it doesnt come back. Luckily mine had not progressed to any vertigo, I just had the clogging and ringing - cochlear hydrops. I had exactly one day where I actually got pretty dizzy and felt like I might have a real vertigo attack, but luckily it passed. I havent even had the slightest bit of dizziness for months and months now. The only lingering symptom I have is very mild tinnitus (some days it's gone completely) and just the slightest bit of fullness in my ear from time to time.
     
  9. Fisherman42

    Fisherman42 Active Member

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    Yeah I’ve done the whole food thing and I have never been able to identify any triggers. We always cook from scratch here, I have for years because it’s healthier and cheaper to boot. No fried food mainly baked or grilled lots of veggies, I had a bad bout with diverticulitis a few years back. Only things that have changed was my new ENT pulling me off of my AV’s and supps and the start of my CPAP has left me reeling. Seeing a new ENT on Monday not too hopeful.
     
  10. Fisherman42

    Fisherman42 Active Member

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    Good to hear hope it keeps up.
     

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