Posted , 7 users are following.
Hey all,
I've had vertigo off and on for the last 12 years with no dx. However, the last few months I've been having what I'm calling "attacks" because they come on so suddenly. I've had about 3-4 of them within the last 3 months.
I can just be sitting there watching TV (like I was today) and I can feel it start to come on slowly and then I stand up and bam! I start sweating and my face gets hot and my heart pounds and everything spins. I end up feeling sick like I could vomit. And when I tried walking, it felt like everything was sideways, almost. It's crazy, I've never had these attacks with my regular vertigo before! Now I'm in bed trying to sleep but feel like I could throw up. Since the "attack" tonight, my ears have a high pitched ringing and my head feels heavy. My sinuses feel suddenly stuffy and I just feel like crap with everything still spinning.
I have one eye open typing this as its the only way I can successfully not feel dizzy lol (and even its barely working).
I just had VNG & hearing test done like a week ago. Hearing is perfect. Brain part of VNG was good but didn't make it through caloric test because I got sick. Within the last 6 months I have had an echocardiogram, 2-3 EKGs, holter monitor, chest x-ray, bloodwork out the wazoo, CT/MRI of brain. I was just recently diagnosed with small fiber neuropathy and I have some fluid behind my ears.
Does this sound like Ménière's at all? My regular vertigo can stay for days weeks months and years. It's usually always around one way or another but these "attacks" are new to me. I told my ENT about it but he said it wasn't Ménière's because I don't violently vomit but I'd like yalls opinion.
It's hard enough living w chronic vertigo but this new stuff is for the birds. This community is the only support I know. Thank u guys so much.
0 likes, 21 replies
rajikp Hayhue
Posted
take care
Hayhue rajikp
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maryduff Hayhue
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cherylgold Hayhue
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I have been diagnosed with md. I have all the classic symptoms. One of which hearing loss in one hear being a common md result. Gets worse with severe attacks.
It's a hard desease to live with. Sounds like you may need to get a second opinion.
Nausea typically comes with severe attacks but violent vomiting Doesn't always happen. (I tend to fight it)
I did take 50mg meclazine tabs (Dramamine, Bonine) during episodes but ent told me they "don't really" work. Burst my bubble!
Anyway, I take dyazide to help with fluid build up and try and cut back on salt intake.
There are extensive remedies I've looked into add this md had controlled my life. In 13 years I've had breaks from it but after a 5 yr break it came back with a vengeance. 1 yr now!
Those remedies are 1) antibiotic injections or steroids into the inner ear to try and supreme the balance nerves. 2) sugery to cut the balance nerves ,hoping to safe whatever hearing is left.
Both must be performed by a neurosurgeon and are very delicate. It would require going to a Johns Hopkins or like kind hospital. The surgery would require intensive care for a few days and if be sicker than I ever thought I was during my worse episodes until my brain adapted. Ughhh.... Scary stuff! Not sure the surgery would even correct things. 60%-90%....?
Anyway, I'd suggest a second opinion , low salt diet, dyazide.
Know one can realize the agony unless they been in our shoes.
Everyday life is hard and can be depressing.
So make sure the people aroynd you understand so they can be helpful when the attacks occur.
Best of luck!
Hayhue cherylgold
Posted
My neurologist suggested MD and gave me a water pill for it, Diamox, but I just looked it up and it's sulfa based and I'm allergic to sulfa.
Then my ENT told me that my neuro wouldn't know anything about MD and that I absolutely do not have it.
If I get a MD diagnosis, I can receive disability. I can't work right now due to how unpredictable all my dizziness is. Vertigo isn't a diagnosis and they won't give it to you with that. I'm like at a loss.
I think surgery would depend on how much it bothers a person. John Hopkins is the A+ of hospitals so I would put my faith in the neurosurgeons there.
cherylgold Hayhue
Posted
I guess depending on the severity of episodes and the number of them would depend on hearing loss too.
I had slight hearing loss in the beginning but as the desease has progressed is become "significant loss".
The hearing I do have in that ear is terribly distorted anyway. Due to the constant tinnitus ringing have. Loud rooms, sudden noises, etc.....can throw me into an attack. I haven't driven in 6 months due to attacks, though milder, I've had while driving.
As far as disability? Good luck! Unless you are diagnosed with md, I believe there's no chance.
Hayhue cherylgold
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And now I have school loans I can't pay back because I can't drive myself
Hayhue cherylgold
Posted
I'm not trying to play a victim but I am sick and tired of vertigo ruining my life. And it's sad that I can't find a cure and I can't get help either so I'm living in some kind of vertigo purgatory.
I'm so sick of it.
cherylgold Hayhue
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Sorry to say there's no defined "cure" for menieres desease.
Hayhue cherylgold
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These symptoms are new. I plan to go back to him, I've already contacted his office.
Thanks.
cherylgold Hayhue
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patvj Hayhue
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Pllease may I have the name of this doctor. I live in the Reading, Pennsylvania and although we have ENTS, I don't believe anyone specializes in MD. I have been housebound more or less for the past three weeks after an episode while driving.
Hayhue patvj
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victoria86526 Hayhue
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elaine31332 Hayhue
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I have MD and at the moment I'm again waiting to see ENT doctor so I'm on the sick not able to go to work (nurse) stress is my big problem can stress bring on attacks.
Hayhue elaine31332
Posted
I'm not sure! I'd start a discussion and see. I'm learning all the ins and outs too. Least we're not alone.
elaine31332 Hayhue
Posted
I didn't realize how many people have MD is very hard condition to live with
I'm so glad I have come across this forums.
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