1. Get our daily digest email where we email the latest new topics from our Strictly Health forum to keep up with the latest developments! Click here to subscribe.

Giving up hope.

Discussion in 'Your Living Room' started by damom458, Mar 16, 2019.

  1. damom458

    damom458 New Member

    5
    0
    1
    Apr 18, 2018
    So desperate, i just don't know what to do anymore. Ive have bilateral Menieres for about 30 years now. I spent 10 of those yearsnjust trying to get a diagnosis . Once they discovered that it was Menieres they started with many drugs that they try on us to give us some relief. After those failed I tried the Meniet device with no change. So then in 2004 they did the Sac decompression with Mastoid shunt on both sides. That helped for 3 months and then I was back where I started.

    I went to Dr. House at the House Ear Institute in 2005 and we decided to do the Vestibular Nerve Section. Although the recovery took about 3 months I finally got the relief I'd been seeking. I was good for about 10 years and then started having occasional flare ups, nothing that a round of steroids didn't help. That went off and on for the next for a couple years with frequency increasing.

    Then about 8 months it hit with a vengeance, the dizziness became consistent , my balance changed and my balance became so bad that I was running into things and falling quite often. Due to my insurance at the time I was limited to the help I really needed. The steroids no longer helped. The dizziness has gotten so bad that I've literally spent the last 7 months laying down because whenever I get up it's so bad. When I say laying down I mean I'm down probably 95% of the time because there no longer is any relief .

    In September I was able to convince my insurance to let me go to Loma Linda University ( they wouldn't approve the House Ear Institute. They did the VNG and discovered that even though I had the VNS on the right ear that there was still activity there and said that they can't always get all. They talked about doing the Gentrimycyn injections but the doctor wanted to try and see if it could be Migraine Associated Vertigo and put me on Nortriptyline. I was 10mg and I was to increase it by 10 mg to see if I could get any relief. Since I wasn't seeing any improvement they decided to try steroid injections in my ear. I had two rounds if that, again with no change. By this time my insurance had changed and I was able to go back to the House Ear Institute . Dr. House decided to go ahead with the Gentrimycyn injections and had 2 rounds of that, only to make it worse. I went back last Wednesday and he basically said he just didn't know what to do and wants me to see a doctor there that specializes in dizziness, I go on April 2nd.

    After 7 months of being down I've all but given up hope. I suffer from severe depression and this has made it so much worse that all I do is lay around and cry. I feel helpless and hopeless and if it wasn't for my kids I would give up. I just can't live a life laying down and watching everyone else's moving forward. The only good thing is a was approved for SS disabilty.

    Desperate for help, desperate for answers, desperate for a life.....

    Debbie
     
  2. Pupper

    Pupper Active Member

    999
    74
    28
    Oct 15, 2016
    Damom, I'm sorry. That was really sad to read. I relate to some of what you said.

    I don't get the part about Dr. House wanting you to see another doctor at House that specializes in dizziness. I assumed that all the doctors there, essentially, specialize in dizziness. Do you recall what his or her name is?
     
  3. redwing1951

    redwing1951 Well-Known Member

    1,477
    193
    63
    May 13, 2014
    New Hampshire/Florida
    This is so sad and very hard to understand. Has anyone suggested a laby for you? You say you are bilateral but that shouldn't stop you from researching surgery to end your misery. Don't give up. Talk to your docs about a laby. You can get your life back on track.
     
  4. damom458

    damom458 New Member

    5
    0
    1
    Apr 18, 2018
    He has referred me to Dr. Edward Cho. I think Dr House is passing me along because he just doesn't know what to do anymore.
     
  5. damom458

    damom458 New Member

    5
    0
    1
    Apr 18, 2018
    A laby in the ear that I already had the VNS?
     
  6. redwing1951

    redwing1951 Well-Known Member

    1,477
    193
    63
    May 13, 2014
    New Hampshire/Florida
    Yes if you are still having vertigo than the VNS did not complete severing the nerve. A laby will take out the inner ear so the brain will no longer receive balance signals ending vertigo. The cochlear remains so you will be able to have an implant if needed. Depends on how much hearing you have left in your good ear. Do you have any hearing left? You need to talk to your doctor about this. It's a way to get your life back.
     
    • Informative Informative x 1
  7. Pupper

    Pupper Active Member

    999
    74
    28
    Oct 15, 2016
    Damom: "They did the VNG and discovered that even though I had the VNS on the right ear that there was still activity there and said that they can't always get all."

    Usually hospitals start with the safer VNS (retrolab). If it doesn't work, they'll do a more invasive VNS (middle fossa) that allows them to see the nerve better. I've had both in the last 15 months. Hasn't seemed to help. I'm sure they got the whole nerve after a combined 11 hours of surgery. Point being, that VNS isn't always the answer.

    You said your VNS helped for about 10 years. Then a recent VNG test showed unfortunate nerve function. It could be that the nerve came "back to life", as that is known to happen sometimes. (It would be interesting to know what your VNG test showed in the immediate weeks following the surgery 10 years ago).
     
    • Agree Agree x 1
    • Informative Informative x 1
  8. Clare

    Clare Active Member

    387
    79
    28
    Mar 31, 2018
    A person in the local meniere's group who was bilateral was helped by getting a service dog. It took a long time, but she was able to be more independent, less fearful, and less depressed.
     
    • Informative Informative x 1
  9. teesdale

    teesdale Active Member

    291
    30
    28
    Oct 24, 2014
    So sorry that you are in so much despair, Debbie. My thoughts and prayers are with you.

    Unfortunately, I do not have much advice. I will say that when my symptoms were at their worst I went to see a otolarygologist (sic) at Jefferson Hospital in Philadelphia to inquire about surgery. And he told me surgery probably wouldn't help me. That after nearly 30 years with the disease my brain was not recognizing center balance any longer. He thought that vestibular rehab along with removing any triggers (sodium, caffeine, etc.) would be my best option. I only mention this in case you do get corrective surgery. You may have to follow that up with the vestibular rehab to re-train your brain.

    Fortunately for me the antivirals seem to be working although I did do the vestibular rehab for a few weeks as well.

    I hope you get the help you need and are back on your feet soon. In the meantime, you may want to consider seeing a therapist/counselor to help you through these dark days.

    All the best,
    Joe
     
  10. AnneT

    AnneT Well-Known Member

    1,021
    205
    63
    May 14, 2014
    Alberta
    Damom Debbie
    I’m in the dark hole tonight - had a bad vertigo this evening. Feeling desperate. I’ll drug up for a good sleep. May 1 appointment can’t come soon enough ... but how long a wait then until a procedure? I’m supposed to travel mid April and I really want to pull the plug on that. No easy choices with this disease.
     
  11. Fisherman42

    Fisherman42 Active Member

    162
    34
    28
    Sep 5, 2014
    Illinois
    Don’t do it to yourself always remember it’s a battle and you will prevail. Be mentally strong it’s the best weapon against the beast. You are a warrior always remember that.
     
  12. Robert Wilson

    Robert Wilson Member

    62
    9
    8
    Feb 7, 2019
    I'm no expert, but this makes good sense to me.
     
  13. AnneT

    AnneT Well-Known Member

    1,021
    205
    63
    May 14, 2014
    Alberta
    Thanks guys. Better so far today.
     
  14. Bennyhill

    Bennyhill Member

    79
    21
    8
    Feb 15, 2019
    Australia
    Yes, you can stop Menieres by destroying the ear. It's usually the last desperate step. However, I ask you to try what works for me. See my post in this Forum called "The Cure for Menieres Attacks". I was 2-3 full blown Menieres attacks a month. Vertigo, nausea and vomiting, require hospitalisation in some cases with Stemital injections. It's now 9 years since my last Menieres attack. No dizziness, no vertigo, no nausea, no Tinitus, and no drugs.

    Please try the B5 and B6 vitamins for 7-10 days and see if there is an improvement. Just a week, and if you feel better then keep going. Only a week, but read my full post as I have answered questions, especially about salt levels and given further information about Menieres which I received from the Australian Menieres Forum.
     
  15. redwing1951

    redwing1951 Well-Known Member

    1,477
    193
    63
    May 13, 2014
    New Hampshire/Florida
    A laby will stop vertigo. As my OTO explained to me if you also get rid of tinnitus and the feeling of fullness in the ear than it is "icing on the cake". For me I have tinnitus and maybe twice in seven years I have had a feeling like I was going to have an attack. My point is you still have menieres but the vertigo and drop attacks are gone. A new found freedom in my opinion.
     
    • Like Like x 1
    • Agree Agree x 1
  16. Coach Betz

    Coach Betz Member

    58
    1
    8
    Feb 13, 2017
    Indanapolis, Indiana
    If they're looking at MAV, and Nortriptyline didn't work, ask them to look into Emgality. It's a new monthly inject able drug. A CGRP-inhibitor. I've been on it about a week and a half and it seems to be working. I have been plagued by the fullness, dizzy, dreary feeling. This seems to work. It's pricey, but my Neurologist gave me a few months free to ensure that it works. The Nortriptyline actually made my symptoms worse it seems.
    Good luck in your journey. You can feel like crap, but don't ever give up. There's always another route to take.
    Again, not a doctor. Nor am I a pharmaceutical rep or employed by a pharma company.
     
  17. Pupper

    Pupper Active Member

    999
    74
    28
    Oct 15, 2016
    Redwing. I agree that a laby probably fixes the dizzy more assuredly than anything. BUT if faulty nerve signals aren't the problem (e.g. if MM isn't the problem), then I'm not sure a laby would help. I've had two VNS's. The 2nd one they were especially determined to get all of the nerve. So, assuming they were successful, it accomplished with the nerve what a laby would. Yet I'm still not fixed.

    Just my 2 cents. I'm rusty on my MM stuff, since I don't read as much about it anymore, and have forgotten stuff.
     
  18. redwing1951

    redwing1951 Well-Known Member

    1,477
    193
    63
    May 13, 2014
    New Hampshire/Florida
    I think your keywords are"assuming they were successful". VNS if it's successful should accomplish what a laby does. It is a known fact that after VNS the nerve can reattach. With the laby the organ (inner ear) is removed so there will be no signals going from the ear to the brain that will cause vertigo. I understand that people who still have hearing in their mm ear would choose VNS over the laby. A laby will destroy any hearing you have. Also a VNS is considered brain surgery and a bit more risky.
    I don't know why you are not fixed and feel for you. I hope you can someday some how find relief.
     
  19. beachkitty

    beachkitty New Member

    25
    1
    3
    Jun 17, 2017
    TN
    I too have been bilateral for 33 years now. My story is similar to yours. But in 2000 I found out that I have AIED—Autoimmune of the Inner Ear Disease which can be part of MM. I’ve been on Methotrexate and prednisone along with a host of other drugs since then. I credit my drug therapy for helping me to get out of the bed in the mornings...I honestly don’t think I could without them. They used to call this “trying the chemo treatment “. Maybe this could be a new hope for you if you haven’t tried it. There’s not anything left that can be done for me now. Prayers for you!

    My dizziness seems to worsen as I age even though both balance nerves have been destroyed by my MM and surgeries. Anyone else noticing an increase with aging?
     

Share This Page