Anyone else with Meniere's Disease on top of fm/cfs?

Discussion in 'Fibromyalgia Main Forum' started by emttoni, Aug 27, 2003.

  1. emttoni

    emttoni New Member

    This dizziness has got to go! Had this about 3 years ago and now it is back with a vengeance. No one ever told me that you dont get rid of this tho. Just found that out on the puter. Also found out that the "fullness" in my ear is from this too. Been complaining to dr for 2 years that it felt like I had water in my ear all the time. They checked and checked and no fluid in ear. Guess I will be back in their office this week for anti dizzy meds. What is one more pill to the handful I take already? Gentle hugs to all ~ Toni
  2. Cactuslil

    Cactuslil New Member

    Hi there. I have Meniere's and in retrospect I know that was also a part of why I was falling down every whip-stitch when I first got this stuff. And yes, I am always having vertigo.

    Before the "chair" I used a cane. When without the cane I would pinch the side of my clothing to keep oriented. My mother had Meniere's and it progressed to where she had to have neurosurgery to sever a nerve on one side. She has taken Klonapin for years for the dizziness. Lil'
  3. FM58

    FM58 New Member

    I had meneires (dx by ENT) before I was dx w/ fibro. Several months later, I was having some episodes of fainting and my PCP wanted me to stop taking the meds for meneires - was so afraid all those horrid symptoms would come back again! She finally convinced me fo "wean" off, I was OK. Just occassional dizzy spells now.

    However, I am sure that my fibro was going on for many years before it was diagnosed, so the menieres was during the fibro. I dread the day for it to strike again.

    Good luck coming to the root of your dizziness! Hope you feel better soon!

    Patty
  4. simple

    simple New Member

    I was diagnosed with an inn-ear infection before I got diagnosed with CFS. I did not have full blown Meniere's Disease but the inner-ear infection did cause havoc with my balance for several months. After I was able to get the vertigo in check, by going to physical therapy, terrible fatigue began to show its ugly face. I eventually got that diagnosed as CFS. Now... the question I've yet to get an answer for is... was CFS there before my inner-ear infection... or did the inner-ear thing cause CFS. No one knows. Plus, I had root-canal problems that began two weeks prior to inner-ear infection... so it complicates things a bit.
  5. libra55

    libra55 New Member

    I have vertigo from time to time but I have never been diagnosed with full-blown Meniere's disease. The vertigo is thought to be a component of the fibro syndrome.

    Good wishes,
    Michelle
  6. Seagull

    Seagull New Member

    along with FMS and CMP and bilateral CTS. FMS can co-exist with many other health problems. I was fortunate to finally find a couple of pcps who understood the differences in symptoms among all these conditions (after 8 years of going from doctor to doctor!) and referred me to the proper specialists for confirmation of the diagnoses. A rheumy diagnosed my CMP and FMS, an ortho diagnosed me with the bilateral CTS, and, eventually, a neuro diagnosed me with the Meniere's.

    While it is true that viruses can be the cause of a lot of these problems, including Meniere's, there can be other possible causes, too. For me, the doctors felt it was the severe conconssion, whiplash, and upper spinal injuries received in a car crash that brought on my conditions. I know how frustrating all the testing and guessing can be -- and I mean from the doctors!

    The ENT I was first sent to by my former pcp ran all the usual tests -- MRI (w/dye contrast), the test where they force you into vertigo (I think it's called ENG?), hearing tests (I have it in the right ear). He thought it was BPPV, but he ignored the other symptoms I described of having constant loud tinnitus in my right ear, along with the nausea and violent vomitting. He also ignored how long I told him the attacks lasted, being for hours and sometimes days. BPPV symptoms do not usually have the tinnitus, nausea/vomitting, and those attacks usually subside within a few minutes. He simply said I would have to live with it and to take 75 mgs of Dipyridamole 2x daily.

    Interestingly, the symptoms did subside for the next 3 yrs. But, in December of last year, they returned with a vengence. So, I finally got a second opinion from my new pcp. Thankfully, he immediately recognized the difference in symptoms and diagnosed me with the Meniere's. To help control the intensity and frequency of the attacks, he put me on Diazepam (Valium) 2 mgs, up to 3x a day, Lasix 40 mgs, 1x a day, Dipyridamole 75 mgs, 1x a day. He also put me on a low salt/sodium diet. Now when I have the attacks, they are usually very mild and the nausea is mild and vomitting often does not even occur. I am still exhausted for hours, afterwards and my muscles ache from head to tos.

    I was referred to a neuro for further treatment options, and was seen by him. He did confirm the Meniere's diagnosis, saying that the ENT was incorrect in thinking it was BPPV. He also said that while there are many surgical and other types of treatment options, he did not think that I was a candidate for them at this time -- which I was glad to hear. He said that the treatment plan my pcp put me on is the first one he would have suggested trying, so I go for a follow-up in about 6 months to see the progress.

    I am happy with the reduction in symptoms, so far, and hope to never need any invasive procedures or stronger meds.

    One of the boards I frequent is the Menieres dot org. You will find a lot of help and great suggestions on that board, as well as, a lot of helpful links to even more resources. There are several on there who use various meds with good results. I wish I knew more about them, but, my doctors felt the ones I am on are sufficient for now. Plus, I did not have any viruses that contributed to my conditions.

    I hope all goes well for you and that you find an acceptable treatment plan that helps. :)

    seagull
  7. Kim

    Kim New Member

    My mother had Meniere's. I've had constant off balance and dizziness (not much true spinning) since October. Have neck injury from accident. I also have fullness and popping in ear. Had inner ear surgery in March because they thought I had a hole in my inner ear but I didn't. I don't know if this is the beginning of Meniere's but I can tell you dizziness is the worst symptom I've ever had....and I've had lots of them. Valium helps a bit. Stress makes it much worse. All the meds I take don't help but I have to take them.
  8. emttoni

    emttoni New Member

    Went into the clinic and could get right in! Will wonders never cease?!? lol
    I heard when the nurse was telling the dr that I needed to be seen for Menier's and he said he didnt even know I had that. When I went in to see him I told him I thought it had gone away from the first attack but that I had found out on the puter that it doesnt go away. He said unfortunately its there to stay.
    He put me on Meclizine 4 x's a day. That worked last time so hopefully it will this time too.
    Gentle hugs ~ Toni