I visited my wonderful doctor in Jacksonville last Wednesday. I have had MM for close to 30 years. last November I have a severe attack that left me in bed for weeks. My ENT here in Panama City Floirda decided to do gentimicin drops, my second round in ten years. Well I had severe reaction and he sent me to this clinic in Jacksonville. They have been wonderful and changed my meds and started me on PT. My attacks are not as severe but my balance and overall health is declining. My doctor told me he would not clip the nerve for fear I would end up in a wheelchair since I had such a bad time with gentimicin. I have worked for 27 years with the school system. I just cannot do it anymore. I have also developed Oscillipsia. So Thursday I was told I need to medically retire from my job. I am praying that my two doctors will sign off on this without any glitches. My balance is so horrible that I must use a cane just to stay balanced somewhat. I also will not go anywhere by myself. And grocery stores are out of the question. Hard to hear that you will not get any better. Terry
Terry, Hang in there. I too suffer from vestibular issues. The first 9 years I had Menieres all I cared about was losing my hearing...little did I know. Keep you head up and focus on the PT. Also, there are some great ideas on here for reducing symptoms. I think the hardest part of Menieres is finding our individual cause. I would keep digging. Trust me I know how hard it is.
Someone here can correct me if I am wrong but from what I understand occlipsia can improve dramatically with PT and walking. Keep pushing, you will find your answer.
Terry, hang in there, Do not give in your PT. it is going to work but time is needed and you need to persevere.
After reading PapaJoe's posts I'm thinking I could start decreasing the population of bacteria and fungi living in me to see if it helps me feel better. I suspect I have candida because when I went for 3 or 4 mos. without sugar I was free from joint pain. i'm not sure why: I'll have to do more reading. Any way I have felt hopeless but right now I'm focused on finding things that I can do to improve my health. I can also say that when I felt hopeless this forum boosted my spirits. Thanks everyone.
I forgot to say that I've been taking Acyclovir 800 mg (took it 3 x/day for 3 mos, now 2 x/day. I feel 90% better.
Thank you all. I have had two gentimicin injections. They will not do anymore for fear of it putting me in a wheelchair. I had such a bad reaction Gentimicin Toxicity. I constantly feel off balance. Have drop attacks. I do have some good days in between. Totally deaf in my right ear. Physcial Therapy but that just stirs my vertigo up. I did finally retire last week. Hoping to get Medical Retirement. I have been on my job for 27 years and I am weary from MM. Terry
Sorry to hear you are having such a difficult time. I wish i never heard of the word Gentamicin....i had 7 shots of Gent and 2 shots of Streptomycin still felt awful. The Labyrinthectomy is the gold standard for curing mm. I had mine Thanksgiving Holidays over 7 years ago and my life is normal. i am as normal as any other 47 year old man walking this earth except i am deaf in my right ear. I am sympathetic to the LABY!!!! Many many on this forum have had Lay's and they never come back because they are out living normal lives. As a sponsor of a vestibular support group where i live i have had the honor of getting to know a lady who has had 2 labys and hears with a Cochlear Implant and since she has had her 2nd laby she has visited over 7 countries with her husband. And while her life is not perfect she is living it on her terms without fear of Vertigo, anxiety of attacks and never misses any of her obligations with grandkids, family or her art classes she enjoys so very much. Don't let this control your life.
Bulldogs, what is the balance situation of the woman who has had two labys? I am always curious what my situation will be if i would lose the other balance nerve and have not gotten a definitive answer from a doctor. Also, how old is she?
June Eveytime i have been with her whether at a meeting or going to get a cup of coffee or a bite to eat after the meeting with her, she has used a cane. I know she had her first laby when she was in her thirties or early forties and had her 2nd laby at 64. At the meetings she does speak of how she must keep a nigh light on in the room at night and when she must hold the stair railing when going up and down stairs and avoids uneven terrain if possible but she does bowl as she is in a senior bowling league for women. she did tell me last christmas that she went to Disney with her kids and grandkids and she did use a scooter to get around in the big and busy park but only in the park. The funny thing she told me is that she did not get tired from walking and could ride the rides and roller coasters non stop with her grandkids and never could get dizzy. I do know that she has said at times in the meeting that her biggest issue is that she gets tired quickly and feels exhaused at times and also she prefers sit down in a chair or on the couch at parties or places with lots of noise and commotion. She also said at times she will turn off her Cochlear Implant and just tune out the outside world when she needs a break. She is a wonderful lady and travels non stop, something she said she could not do for years because of the fear of vertigo. Everytime she speaks she always says her life is not perfect but with a little planning and using caution on hills, stairs ect.. there is nothing she cannot do.....Darkness and fatigue give her the most difficulty but when she feels tired she will use her little power scooter to get around the mall or ballpark with her gradkids which she says they all want to ride with her. i have never seen her use her scooter but she does talk about it at times. Everytime i see her she has her cane. Looks and acts like any other 70 year old lady. You would never know she had zero balance in her ears.
June, the best way to meet up with people that have had double laby's or double vns' if it ever came to that is to join or visit the Acoustic neuroma forum. it is just like this forum with many many people there with NF2 or acoustic neuroma's in both ears that are very helpful and full of information. my friend is a member there.
That was the first forum i joined before my surgery in 1997. It was helpful then. Never thought about not getting dizzy, i will have to process that. I feel certain i would need a cane. Even now, i have difficulty in total darkness. I am glad this lady is doing well. It is an inspiration.
Hi , Bulldogs I have had Menieres for 10 years in my right ear, My ENT doctor suggested Gentamicin injections to stop the symtoms , I have only had 1 shot and now I have ballance issues full time. My doctor says that Gentamicin is better than Labyrinthectomy (less damage to your hearing) It is very hard to find any info about the recovery of Gentamicin or Labyrinthectomy. Not sure if I should go back and get a second shot (worried my ballance will get worse) Did you have any issues with ballance after your Labyrintectomy?