Found you!

Hi Matt! I'm glad you found us. This is a very helpful and supportive place. Be sure to read about antivirals and the John of Ohio routine. These things have helped many of us (including me) hugely. A good summary is here: http://www.zoominternet.net/~kcshop/JOH.PDF

That seems like so much to go through two heart transplants and Meniere's. My best wishes to you.

 

Matt, my Dad had this illness as well and had to retire on disability, but then fully recovered. I have had this now for eight months of pure hell. I was thinking tonight of ranking the pain/discomfort with this. I did this below for me. I just wonder if Meniere's is genetic.

1. Full vertigo incidences (hell here on earth)
2. Brain fog and depression
3. Hearing distortions and related pain with some sounds/voices. So painful and hard to deal with
4. Roaring Tinnitus...pretty damn horrible
5. Lightheartedness and intermittent dizziness/unbalance
6. Ear fullness, I hate it.
7. Headaches
8. Hearing loss, Horrible, until I got my hearing aids
8. Ear pain an itching

 

My grandfather was in England and I'm convinced he had MM although was never diagnosed. My uncle in England also has terrible tinnitus and my mother has ear issues as well. I definitely think there is a genetic component. I try to be positive because I've only had 6 vertigo incidences in 14 years of Menieres (all last year), but the I agree with you Jimmy Alvin on the rankings. The pain I feel with sounds and voices is SO hard to deal with and has made me a virtual hermit which of course makes the depression worse. Given that the vertigo came on last year, the lightheadedness always makes me feel its just lurking ready to pounce. Frustrated with this disease is an understatement!

 

Matt, are you seeing a neurotologist (inner ear specialist), have you discussed surgery such as a labyrinthectomy with your doctor? There are solutions. If only one ear is affected, you can function perfectly well with one balance nerve and one heaing nerve. I have done so since 1997 when i had surgery (for another reason) and lost the 8th nerve on my right side. I like the House Ear clinic in LA but i know there are many fine specialists in your area of NC. Good luck.

 

EXACTLY THIS!!!! In that order for me too. The itching - Ugh. LOL

 

Welcome - this forum is SO helpful - you can stay on here for hours at a time reading experiences and what has and hasn't helped others ( and I have) ... it has been sanity saving to know we aren't alone when so many people have no idea what MD is and have never heard of it - and when you tell them you get vertigo attacks and all the other syptoms that go along with it and they say "Oh yea I had a vertigo attack once" you know they don't get it.

 

TLB, something you said struck a chord with me...the hermit issue. I stay in almost every day, because I have trouble dealing with people--the sounds and voices are difficult to take. I don't want to be a hermit as I use to be the toast of social gatherings. It makes me sad that this is gone, and I am losing friends because I don't talk with them. How can we do better with this issue? I have been forcing myself to sit in noisy restaurants, but it is not pleasurable, and social gatherings are still difficult for me. I try sometimes to keep hearing aids in, or take them out. Clanging silverware and dishes send me up the wall. When I have very loud tinnitus, I have trouble being happy with people.....can I do something about this? Any ideas would help. I want to be a former hermit.

Jimmy

 

Jimmy - you sound exactly like me!!! I've lost a lot of friends due to being so antisocial but I'm not fun when I force myself into a physically uncomfortable situation either. Some friends have been accommodating and are much more willing to come to my house or somewhere quiet but it really isn't the same. I used to take a dance class 3x a week, go to the movies a couple of times a month and go out with friends for "girls night" every month and I haven't done any of that in nearly a year. I think all of this worsens the depression along with the MM. we lose ourselves with this disease. I'd take any suggestions as well to help deal with everything!

 

Coming to terms with having an idiopathic condition that no one can see is not easy, but unfortunately it is part of the journey that we all must take. Thus there is a big mental aspect to dealing with a physical condition. It is probably the biggest thing we all share in common and is where mutual support and understanding is so important.

I think that the other issue that strikes me, with the wonderful benefit of hindsight, is that we (and others) tend to see the diagnosis of Meniere’s as you would any other ailment. Validation, a name and the start of treatment by health care experts. It can be anything but. Meniere’s is in fact a non-diagnosis. We have to become our own experts in our own uniquely personal brand of the condition. It usually takes time and experimentation to work out our triggers and the solutions. The good news is that most people seem to do that and move on. In the process you will find out who your real friends are, what matters, and an awful lot about human nature....

 

Jimmie, have you been tested for SemiCircular Canal Dehiscence ? Had a VEMP or CT scan? I too have to deal with the sound/noise/crowd issues you and others here have to deal with everyday, to include significant hearing loss in both ears (I've had hearing aids for seven years). I'm still searching for my answers, but I have had these tests done to look more closely at the inner ear. In the meantime, I do what I can do and avoid what I cant deal with. My husband and my friends try to understand, but of course their empathy is limited since they really dont know what it's like. It makes me sad at times to be "on the outside looking in", but I also know I need to take of myself and I find strength in being proactive for ME.

 

Hi Matt

Sorry you're going through this, but there are many people here who have found full relief using various methods. There is also some evidence that related MM runs in families, which makes sense if it's viral. You may want to look into Dr. Gacek's published research on antivirals. Thousands of patients have found total relief via that route.

But first, you should get tested for SCD and PLF, both of which generate similar symptoms. MM cannot be confirmed, as your doctor mistakenly told you. It is diagnosed by eliminating all other causes, which your doctor doesn't seem to have done. Many of us went through several doctors before finding a competent and caring one.

 

You also want to rule out MAV, migraine associated vertigo before you make any decisions about surgery. I dont think it sounds like that from what i know but i do not have mav and am not clear on how it is ruled out. I agree about willingness of trying different doctors. I had a great doctor(specialist) i liked and trusted and who was well regarded in the medical community. Only thing was, he couldnt help me and finally told me so. It was my family doctor who ended up prescribing antivirals ('i will prescribe them if you want to try them'). When i had some success with them, i moved on to DrDerebery at House who helped me more. Dont think just because a person is a good doctor that if they cant help you you have to give up. I expect with your medical history, you know that as well as anyone, but it applies to ears too. Find an inner ear specialist and get familiar with your options.

 

I thought I was over this crying crap, but I read the posts about being hermits with this illness and just lost it....now I want to cuss for an hour or two and just get pissed.I am having a rough weekend being dizzy, sick feeling, and have very loud tinnitus (after my nighttime vertigo incident a couple of days ago). I think this cold/sinus issue I have is making it worse. Someone mentioned that it would be due to four months of steroid use. Sick of being sick...

 

I relate to this. It is such a loss to have the freedom to socialize. I really miss being able to just spontaneously go out to a restaurant (among other things). Some restaurants are much quieter than others, and I have a handful of them that I can handle, so I try to direct people to those. I also have found that usually sitting outside solves the problem (no echo chamber!), so when I can find restaurants with outdoor seating I can do that. I try to arrange social gatherings that take place outside. I am lucky to be in California where I can do that most of the year. It's a bit exhausting, but I've learned that things go best when I arrange the event, because I can take into account my needs, so I've taken on that role a lot with my family and friends. There are also some situations that I attend with ear plugs--like concerts and sports events.

I hope something here helps!

 

My neuro-ent said the itching is due to the ear getting 'very dry'! He told me to put a drop of baby oil (use a dropper of course) in the ear--both if needed--at bedtime for two weeks. Then as it eases--and it will, unless you have an infection--and then use it once a week at bedtime--using cotton to keep it from running out of course, while you sleep. It worked! I use it on occasion now--but not nightly. Simple and not expensive. My ears were driving me crazy with itching and burning. I did have a bit of a bacteria once, have prescription for that and use it the same way--a drop right out of the bottle each night for one to two weeks. That worked too. Haven't had another infection. Occasional itching and 'back to the baby oil'! Hope this info helps.

 

Matt - have you been allergy tested? I went to an allergist today and got tested (thanks to June's suggestion) and I found out that I had a reaction to mold and trees. I'm going to try allergy shots to see if that helps. I always noticed that my MM was worse with specific weather changes so we'll see if this offers any improvement above what I'm already doing!

 

Bythebay: I am still learning what I can take in social settings. Noisy ones, I cannot handle, and clanging silverware and children's screaming voices drive me up the wall. Surprisingly, there are certain people whose voices drive me crazy as well. I am not sure what it is, loudness, pitch...I cannot understand it. I want to tell them to be quieter but it is difficult. Also, when I am in a group and everyone is talking it is difficult and I am not sure exactly why--it just sounds odd and weird, and I am not happy. I thinks sometimes I am just generally depressed, but Zoloft has helped some. Hearing aids sometimes help and sometimes hinder--depends on the circumstances. Sometimes I feel like a stuffy old fart that isn't much fun---I never thought this would be me!

 

For me I think the issue is pitch. It feels like it hits some frequency that vibrates the fluid in my ear in a bad way--amplifies it and causes pain. Sometimes it sets off nausea.

Does socializing outside work better for you?

I'm interested that you have hearing aids. The audiologist I see was very discouraging about a hearing aid for me because of my hyperacusis. She thinks that to make it loud enough to improve my hearing it would set off the hyperacusis. I'm very curious how that has gone for you.

 

Hearing aids did not help me. I did experience the pitch thing. These were the things anti virals fixed in me.