Just wanted to say hi. I'm oscillating wildly between despair and denial. I've been suffering for about 6 months and the family doctor and ENT both say it's most likely Menieres. My symptoms are bilateral, although 80% in my left. Vertigo, fullness, stabbing pains in the ear, terrible tinnitus, and my hearing drops out temporarily every time the weather changes (which is a lot where I am). I have an MRI scheduled for next week. I'm 45, and music is my entire life: it's my career, it's my coping mechanism, it's my way of connecting with people, and all my friends work in sound or music. I have no partner and no kids. I told three friends and they all bolted. One came back after a couple weeks and apologized saying he just hadn't known what to say. The others have ghosted me. I told my parents and my mother made deaf jokes. I feel like I'm losing everything that matters to me. Looking for some hope out there.
You have come to the right place. Work with your doctors. If they do not have the answer, look into antivirals. They are miracle drugs for many though not all. Some find relief with allergy treatment. A doctor I highly recommend is Jennifer Derebery at House Ear Clinic in Los Angeles. Sometimes we have to trave for someth8ng tat affects our life this much. Do not despair. You have a lot of work ahead of you but it is likely you will find improvement. In the mean time, if you are very stressed, i found it helped to find some way to calm my nerves so my time with the doctors was more productive. For me it was yoga. It might be meditation or prayer or whatever calms you. All stress including sleep deprivation has a negative impact on the immune system. Good luck, stay in touch and let us know how th8ngs are going.
It's so sad that a critical change in one's health will sort out who really is a friend or loving family member. It never ceases to anger me to see those who acted like they are our closest comrades bailing at the first hint of trouble. In all my years connected to this place I've heard sad story after sad story. But know this sadsumo, this disorder can be managed for the most part and much of life lived again. Yes, there will be some alterations, but life can be mostly whole again. It comes down to figuring out what it is you truly have and much of that leg work is on you. Doctors so easily and quickly throw the verdict of "meniere's" around, and have a handful of favorite methods for treating it, but if it's not the correct diagnosis then it will be ineffective. Look into other reasons for these symptoms you have and be willing to experiment with what you can. Use the search bar, check out the database (there are 2 of them). Keep an open mind! Be willing to try different approaches. It's been 14 years since the onset of my hell, I discovered this place fairly early back then, and within 3 years learned what I really had, and it wasn't what the doctor said. I made changes and got most of my life back. Symptoms are always an issue but rarely life altering because I learned what I needed to do for ME. In the beginning I had gradually lost all hearing in my worst ear. With changes my hearing came back. Don't be quick to let anyone talk you into anything surgical... whether it's from a doctor or someone on this forum. I've seen some scenarios go dreadfully wrong, if not just ineffective, for those doing this when it's for something they truly do not have. Don't let anyone tell you that doing your own research is detrimental. If it comes from a doctor, fire him. If it comes from anyone else, ignore them. So many including myself have gotten well by their own research and observations and experimentation and efforts. You CAN get better, even if it is truly meniere's.
Thanks for the kind words. I'm seeing a therapist this week to try to talk through all the feelings. I'm also trying every therapy and supplement under the sun. I'm not having the vertigo attacks (6 months free), as I am the ear pressure, stabbing pain in the ears, tinnitus and fluctuating hearing. This disease has taken over my life. It sucks.
I do hope you are where you can be under the care of a doctor who is experienced in the treatment of Meniere's. Ent's all 'know about it' but when I first had my 'symptoms' I saw my regular Ent and he sent me to another one with a teaching hospital in the Midwest--and is a Neuro-ent. The loss of hearing is the most difficult thing to deal with--after the initial and sometimes ongoing 'vertigo'. However, there is much help with hearing issues and I know because I've tried most. I now wear hearing aids in both ears (you can barely see them if that's an issue for you) and a listener device for TV that is a big help--small like a 'blue tooth' thing. And I had vertigo really badly--finally had the endolymphatic shunt procedure--and no vertigo since 2012! That's not to say I don't have issues. I deal with tinnitus much better than I did--it waxes and wanes in intensity. And I have ongoing 'head pressure' not dizziness but something that it seems not many here deal with--but many do. So, there is help here for all types of symptoms. We all, here on this board, have various issues . I tried the anti-virals and they didn't help--but many here they have helped. The tinnitus can be really nerve wracking--but it waxes and wanes--in time. You will find, masking it--with aids is a big help. Now as to the music issue. I do hope with taking steps to address the symptoms you will be able to hear well enough to enjoy your music. I know how important this must be to you. I have not had success with that--I hear it but it sounds 'off' to me--but in adjusting the aids sometimes it sounds pretty good. And--this may be a temporary thing for you--I hope so. And this condidion has good days and bad--so please don't give up the fight--it's an adjustment--but keep getting out--explain to your closer friends what's going on--and your family and hopefully they will understand better and in time--it will help with your adjustment too. It's good you are going to therapy--I think that will be a big help to you. Stay connected here--there is much help and encouragement on this board. Yanksgirl
Thanks Yanksgirl. It is definitely the hearing loss that is the biggest issue for me. I won't be able to do my job if it gets worse. And, having spent decades training myself to listen very carefully, it's impossible to ignore the tinnitus even with masking devices. Hearing aids tend to only work by boosting the speaking range of frequencies, which means all the other nuances of music's frequency palette aren't boosted, so all the highs and lows are gone and you're left with the mids. It's devastating to me, having spent my whole life devoted to music. I am doing everything I can to prevent that loss as long as possible. My attacks seem to be tied to weather, which of course I have no control over, except to move to a new climate (not possible in my own country, but perhaps I can find a marriage of convenience somewhere else)... has anyone successfully moved to reduce symptoms?
I live near Pittsburgh in a very humid climate. I used to be better off when ever icrossed the mississippi river to dryer area. Also i was better off in high elevations and climate controlled rooms. Allergy shots helped my hearing a lot and antivirals helped the distortion and tinnitus. Everyone is different of course. My low freq hearing improved alot. The mild loss in the highest ranges above speech range did not come back.