Meniere's Disease
Horseleech
3,830 Posts
Does anyone else here have it?
For those who don't know, it's an inner ear condition.
I was diagnosed about 8 years ago after a series of devastating vertigo attacks. The first one happened when I was home alone one night. I started to feel a little dizzy while watching SNL one night and when I got up to turn the TV off before the dreaded Live At The Apollo comedy hour I realized I couldn't stand up. I tried but listed severely to one side and my whole world started spinning. Within minutes I was on the floor unable to get up with no clue what was happening. Soon the nausea kicked in and it was a supreme act of will to crawl into the bathroom and lift my head up enough to reach the bowl. After 4-5 hours of that I dragged myself to bed and was barely able to get in. It was like the spins when drunk but 100 times worse. The slightest movement sent me reeling for minutes, and I tried to remain as motionless as possible.
The whole time I was debating calling an ambulance, but I couldn't figure out what it was - it wasn't a heart attack or a stroke, but I kind of felt like I was dying. Also, making a phone call and unlocking the door for them would have been close to impossible. The whole thing lasted 12 hours or so and I was completely drained afterward.
I had a few more like this and grew to dread them, in fact the fear of getting them was almost as bad as actually getting them. Fortunately they took about 45 minutes to kick in and I was able to get home before they got too bad. The whole time my right ear felt stuffed up and I couldn't hear too well out of it.
By coincidence my parents are friends with a man who is considered a leading expert in this and he diagnosed me right away. Of course, it's one of those things where there is no known treatment. I eventually found a holistic regimen that worked for me, and I have not had an attack in years. There are times, though, where I feel like I may be getting one but my brain has learned to deal with it and somehow compensates. The hearing in my right ear is still not very good.
Reading the Migraine thread made me start this one. I have met several people over the years who have it but never mention it because it's somewhat rare and people usually have no idea what you're talking about.
If anyone here suffers, I'd be happy to share what I did to get back to normal. Some people never do and are unable to live normal lives.
Sorry to inflict my tale on you all, but it's possible this is linked to exposure to loud music and certain drugs, so I thought it was possible some people here are affected. A friend of mine who knows Bob Weir says a lot of people in the Grateful Dead family have it.
For those who don't know, it's an inner ear condition.
I was diagnosed about 8 years ago after a series of devastating vertigo attacks. The first one happened when I was home alone one night. I started to feel a little dizzy while watching SNL one night and when I got up to turn the TV off before the dreaded Live At The Apollo comedy hour I realized I couldn't stand up. I tried but listed severely to one side and my whole world started spinning. Within minutes I was on the floor unable to get up with no clue what was happening. Soon the nausea kicked in and it was a supreme act of will to crawl into the bathroom and lift my head up enough to reach the bowl. After 4-5 hours of that I dragged myself to bed and was barely able to get in. It was like the spins when drunk but 100 times worse. The slightest movement sent me reeling for minutes, and I tried to remain as motionless as possible.
The whole time I was debating calling an ambulance, but I couldn't figure out what it was - it wasn't a heart attack or a stroke, but I kind of felt like I was dying. Also, making a phone call and unlocking the door for them would have been close to impossible. The whole thing lasted 12 hours or so and I was completely drained afterward.
I had a few more like this and grew to dread them, in fact the fear of getting them was almost as bad as actually getting them. Fortunately they took about 45 minutes to kick in and I was able to get home before they got too bad. The whole time my right ear felt stuffed up and I couldn't hear too well out of it.
By coincidence my parents are friends with a man who is considered a leading expert in this and he diagnosed me right away. Of course, it's one of those things where there is no known treatment. I eventually found a holistic regimen that worked for me, and I have not had an attack in years. There are times, though, where I feel like I may be getting one but my brain has learned to deal with it and somehow compensates. The hearing in my right ear is still not very good.
Reading the Migraine thread made me start this one. I have met several people over the years who have it but never mention it because it's somewhat rare and people usually have no idea what you're talking about.
If anyone here suffers, I'd be happy to share what I did to get back to normal. Some people never do and are unable to live normal lives.
Sorry to inflict my tale on you all, but it's possible this is linked to exposure to loud music and certain drugs, so I thought it was possible some people here are affected. A friend of mine who knows Bob Weir says a lot of people in the Grateful Dead family have it.
Comments
The first time it happened I went to my doctor, who said there was nothing obviously wrong with me.
I had it bad 3-4 times (where I could only lay down and wait forever for my head to stop spinning) and then a shorter, less intense version a few more times, and now its been at least a few years since I've had any incidents.
If it ever does come up again though I will check Meniere's out.
If this accompanied by a 'full' feeling in your ear, as though it is stuffed up, it may be Meniere's. A loud ringing in one ear like tinnitus is also a symptom.
Apparently in the early stages Prednisone can cure it for some people, so it's good to get an early diagnosis. Nobody knows what causes it, so there's a lot of guess work involved.
My mom was diagnosed last year. She was in Egypt at the time so it pretty much ruined her trip. She ended up getting surgery and is now deaf in one ear. She set up an appointment with her ear doctor and he diagnosed it. My version has a subtitle, 'cochlear hydrops'. He told me to go on a low-sodium diet, and that seems to be working for me.
I am terrified of doing the surgery because if you get it in your other ear (rare, but not unheard of) then you are in serious trouble. My hearing is not so great in one ear, though it changes constantly. My other ear seems to have picked up the slack and is especially acute.
Some people get a different version, and instead of prolonged vertigo you get a 'drop' where you just suddenly lose all balance and fall down if you are walking or standing up. It only lasts a minute or so. If you are diagnosed with this you may get your drivers license revoked because you would crash your car if it happens while driving. For me, driving is oddly therapeutic since you are constantly defining your location in space. It's sort of like seasickness this way.
I've had (and still get) alot of the symptoms posted here, with dizzy spells on the daily 5 years down the track >.
Apparently not Menieres, despite the vertigo and exacerbated bouts the following day after drinking (which tends to bring immunity at the time)
I still haven't ruled out Menieres, as there has been no answer now, even having seen numerous doctors about my condition.
I don't over work, keep in shape, drink only small amounts once a week, and have seen this issue completely change my life.
Any recommendations you want to shed some light on HORSELEECH, please do ;)
I can't tell you for sure if you have Meniere's, and different people have different symptoms.
Are there any issues with your hearing? Does one ear 'feel' different than the other? Most people have some version of this.
The drinking thing is something I have also. The day after I might feel light-headed or spacey and slightly prone to dizziness. And yeah, while drinking I don't feel anything like dizziness at all.
One thing that has worked for me is craniosacral massage. If you're not familiar with it, it's not so much massage in the traditional sense but a subtle balancing of your energy that works on principals similar to acupuncture. A lot of people say it's bunk, but I can tell you for a fact it worked for me. One of the first times I went, I started having a vertigo attack about 45 minutes before my appointment. Instead of going home like I would normally have done, I went to my appointment to see what would happen. After one of the most relaxing hours I've ever had, I sat up from the table feeling great with no symptoms at all. Honestly, I was amazed - I thought it might help but did not imagine it would be so effective. This was during a period that my attacks were lasting 4-5 hours. The woman who did the craniosacral said I had more energy buzzing around in my head than anyone she had ever treated. I should mention that this soon stopped me from having attacks at all, it wasn't just a quick fix.
She herself had had issues with vertigo while studying acupuncture and was helped by craniosacral, which inspired her to study and practice it as well.
There are elements of Chinese medicine which are helpful also, for me it involved 'settling my liver energy' to keep it from rising to my head. I'm sure some people here are laughing over this, but conventional medicine offers pretty much zero help beyond taking Dramamine or similar, and the difference it made for me is substantial.
Feel free to ask me any more questions.
So I empathize with all you all who are dealing with more.
No laugh at Eastern medicine, or any thing else that works.
I have noticed that like most chronic conditions stress management is very important. Both my mom and father-in-law have significant hearing loss in at least one ear. Do they know what the correlation between hearing loss and vertigo is?
Stress is definitely a factor. After my first bout with vertigo I was symptom-free (except for my hearing) for a couple years. Then I started my second store and was working 16 hour days, running one store and building another. Sure enough, the vertigo came back a few times until I got more craniosacral massage.
The hearing loss is related to damage to the inner ear, possibly caused by excess fluid. Viral damage has been suggested also, but never proven. The interior of the inner ear is extremely delicate and complicated - any unbalance or damage can have profound effects.
One procedure, mentioned above, is to have surgery to sever the auditory nerve. This will end the vertigo. but will also end your ability to hear in that ear and cannot be undone. I would do this as a last resort only, and only if the symptoms are dire and all else has been tried. As I also mentioned above, if you get Meniere's in the other ear you are in big trouble.
My approach, which worked for me:
- Craniosacral massage
- Colonics
- Chinese herbal medicine
- Stress reduction
- Avoiding (temporarily) salt, alcohol and caffeine.
interesting!
of course, I wouldn't be foolish enough to self diagnose....shit is dangerous!
just interested to know.
stress does seem to exacerbate things in my case, too, but that would follow suit for a lot of unrelated issues.
I did see a shrink (to appease my parents) and see if there might be a psychological aspect to things, ie depression/anxiety etc.........which IS often the case when it's not menieres.....but that didn't seem to fit the bill......so, I am still completely baffled by what I am dealing with.
nothing wrong with eastern medicine......I imagine that acupuncture may also have a beneficial side to it with Menieres (again, just out of curiosity, not for self diagnosis). Can anyone confirm?
Doing google searches for "menieres acupuncture" or "vertigo chinese medicine" and the like will give you an idea of what to expect and the concepts involved. But of course this is no substitute for an actual visit with a qualified practitioner.
People in the NYC area can PM me and I'll try and put you in touch with the folks who helped me.
Do you mean Antivert? I took it a few times and it helped me a bit also, but apparently most people grow immune to it's effects if taken regularly.
For about 2 years now when I'm standing or walking it feels like I'm on a trampoline.
It's much worse when I'm standing or walking on an un-firm surface, like a gym mat, or anything with a little "give".
I've seen 4 doctors and none of them have any clue. I've even seen a oto-neurologist who specializes in balance disorders. He prescribed SSRIs, like Paxil, but I ain't into that.
The last doc I saw, an ENT doctor, prescribed xanax thinking it might be anxiety. Well, of course xanax works wonders, but I ain't into that either. Not sure I wanna take benzos for life for something I can usually deal with.
Thing is, xanax also helps with vestibular disorders, so who knows what the hell is going on. I'm wondering if it is anxiety? Weird symptom to have for anxiety, though.
It's never even close to where I might fall over, it's just distracting pretty much.