Hello Stephen, Meniere's started in the left ear and then progressed to include the right ear. First symptoms was violent vertigo, which caused a malady of issues. The tinnitus started at the same time in the left ear. I had dizziness and off balance during the attacks, but eventually the symptoms would subside until the next attack. As time passed the attacks became more frequent and lasting longer than the attacks before. The tinnitus became chronic in the left ear. The dizziness became chronic with or without vertigo attacks, and then eventually meniere's became bilateral expressing tinnitus in both ears, loss of balance and I needed a walker to ambulate.
I used the walker for about a year until I could no longer balance to the left or right. and would fall back away from the walker. I was then introduced to a wheelchair, which I hated at first, I cursed that wheelchair until I achieved the ability to operate it. Then the Doctors set up with a powerchair, all new experience! This was part of a two year rehabilitation program, along with balance therapy, medications, It was then I had to accept the fact that meniere's had took my balance and I can no longer walk. So now I have settled in and know where I am with this disease.
I'm so sorry to hear of your new issues. Especially those drop attacks, which are so scary. I have MD in both ears, worse in my left ear but my right ear is catching up I recently got bilateral hearing aids as my hearing loss became permanent and am adjusting to those. Never thought I'd be wearing hearing aids at age 58, but here we are.
I've never heard of the olive oil syringing...that's a new one on me! What is the idea behind it? How is it supposed to help? My ENT will flush my ears to rid them of wax build-up as needed but he's never mentioned oil. Ask your GP or ENT if they can refer you to a good neurotologist or vestibular specialist who is really good with MD...maybe they can give you some insight/advice? Life with MD in both ears can be done and you can be helped! Be your own strongest advocate and keep pushing for answers and some relief. What does the rest of your daily treatment consist of, if you're comfortable sharing, may I ask?
No matter what, keep smiling and stay positive...don't give up. You can do this! ~Mary
I'm new so may have to play catch up with those in the group but if you're comfy sharing, may I ask if you've explored the surgical options? I'm scared to death of any surgery. I have decent mobility at this point, am able to compensate for my ever-present dizziness, I'm still working and enjoying my farm and I told my docs that if everything stayed just the way it is for the rest of my life I would be so happy. Then I got sad that this is my reality and I've had it for so long I wish for it not to get worse instead of wishing for a normal, regular day...the likes of which I haven't experienced for going on two decades. lol
Your good attitude is infectious and I so enjoy your spirit while dealing with MD. ~Mary
Hello Mary, Thank you for your kinds words, I didn't always have a good attitude, I just posted a true confession and told of what inspired me to wake and smell the coffee (Decaf) lol. As far as surgical options, I have seen three specialists, here and at K.U. my vestibular nerves are damaged and have already disassociated themselves in distribution of balance signal to the brain. Surgery has risks and the Docs do not think it will make any difference in my balancing ability and the aftermath of the surgery could lead to further complications
That's interesting...I don't know if it's common to use olive oil for loosening the wax here in the States. It doesn't seem to be in my neck of the woods. The doc just flushed mine with a contraption in his office.
I'm still adjusting to the hearing aids, it's been a process for me but my audiologist tells me to be patient. At first I couldn't stand it because I'm also sensitive to the very loud, abrupt noises so even my microwave beeping was so piercing to me! I went back and doc recalibrated my background noise reduction, gave me extra volume controls and activated a sound compression feature my aids have, supposedly that takes the sting out of high pitched or loud noises. It is helping. The key is getting the correct hearing aids for MD and an audiologist who understands MD because we don't have age-related hearing loss, the sounds we are missing is what makes things sound distorted and makes things garbled and makes songs sound different to us. Many songs I know and love don't sound right to me anymore and that's sad As far as my experience so far, I have no issues taking them out to shower/sleep...I just immediately revert to not being able to hear as well. I experienced worse tinnitus at first (that seems to be leveling off) and I felt dizzier/loss of balance but I also think that's getting better. It helps to be able to turn them down when my brain is feeling overwhelmed. I'm going to keep trying with them because the doc told me that was the best thing to do.
You also have hyperacusis as I do. That is when you are sensitive to certain sounds....I wish they would find a cure for that. A friend took anti fungal meds and it relieved his....I tried that and it did not work. So we have MD and hyperacusis...good luck with the hearing aids,.....my audiologist is going to a seminar on hyperacusis soon...I will report here if I find anything interesting or helpful
Streve I am also a musician and its so hard at time...ive learned to adapt and use earplugs in bad ear as the sounds drive me crazy when playing live I use in ear monitors now with the bad ear shut off......I could not go without listening to music......Good luck to you but it sure isn't the same as it used to be I used to be able to hear every little cymbal guitar string bell, etc....