Vertigo Attacks Making Me Go Blind

Firebrand

Firebrand

New Member
Joined
Dec 22, 2009
Messages
260
Reaction score
1
:ugh: I have been so sick with vertigo attacks lately. We don't know for sure, but there's a brain involvement in this. I went to an ENT 2 1/2 years ago, who told me that my ears are fine and that my brain is doing it. So off to a neurologist, I tried Antivert, Dramamine, Scop Patch, anti-convulsants, etc. Nothing is working and it's getting scary because I'm having attacks after attacks.

When it comes, I get extremely dizzy. It's so unreal. It makes my eyes go from side to side back and forth uncontrollably (this is called nystagmus). When this happens, I cannot lip-read at all. I can't even read, either.

I am 100% deaf. I used to be over 95%. The vertigo took out all of my residual hearing in my right ear, which I used a hearing aid on. My left ear is too messed up in distinguishing different sounds. I have been deaf since birth.

I don't mind being 100% deaf, but I really don't want to become blind if the nystagmus becomes permanent. I had it really bad yesterday and this morning. My eyes are bouncing around as a result. I cannot hold my eyes still. I have trouble lip-reading my hubby. :eek3:

I was wondering if any of you had sight your whole and you went blind later in life, how did you cope? I am an extremely visual person. I see out of my right eye. My left has been blind since birth, so I'm pretty limited with sensory information.

Sorry this is kinda long. Thanks for reading. :ty:
 
That's an awfully open ended question. How about contacting your states commission for the blind and getting training?
 
First off, I hope you manage to get the vertigo attacks under control.

Sign language becomes much more important if you're deaf or hard of hearing and have any sort of vision issues because, like you mentioned, you can't speech read. I definitely think you will need to learn sign language no matter what you do, even if it's just finger spelling. Being oral as a deaf person is possible. Being oral as a deafblind person is nearly impossible because you can't use your vision to compensate for your deafness.
 
Mod's Note:

Thread's merged.
 
Bottesini said:
That's an awfully open ended question. How about contacting your states commission for the blind and getting training?
Click to expand...

I don't know about where you live, but in my state both blind services and deaf services have sub-divisions serving the deafblind.
 
Thanks for the advise. I doubt this will happen, but I've read about nystagmus becoming permanent. That concerned me since I depend on my sight. My neurologist is hard at work in helping me regain normalcy to where I don't get any more of these vertigo attacks. These attacks are so nasty - the insane dizziness, nausea, total hearing loss, and the nystagmus. Yeah, it's like Meniere's disease, but my ENT says it's not that - it's a brain involvement. :doh: Of course, we'll get to the bottom of this.

If it comes to it, I'd have them take out my vestibular system or whatever it is that they do for those who can't get relief. Sounds drastic, I know. But I really hate being blind and deaf, no offense to the Deaf/Blind intended. :bowdown:
 
Firebrand said:
Thanks for the advise. I doubt this will happen, but I've read about nystagmus becoming permanent. That concerned me since I depend on my sight. My neurologist is hard at work in helping me regain normalcy to where I don't get any more of these vertigo attacks. These attacks are so nasty - the insane dizziness, nausea, total hearing loss, and the nystagmus. Yeah, it's like Meniere's disease, but my ENT says it's not that - it's a brain involvement. :doh: Of course, we'll get to the bottom of this.

If it comes to it, I'd have them take out my vestibular system or whatever it is that they do for those who can't get relief. Sounds drastic, I know. But I really hate being blind and deaf, no offense to the Deaf/Blind intended. :bowdown:
Click to expand...

I'm pretty sure no one is going to be offended. :)
 
Yike, I hate vertigo.
I'm sorry to hear you're having them daily.
I hope the Dr can solve this and maybe prevent you from losing your sight.
Best of luck!
 
Firebrand said:
Thanks for the advise. I doubt this will happen, but I've read about nystagmus becoming permanent. That concerned me since I depend on my sight. My neurologist is hard at work in helping me regain normalcy to where I don't get any more of these vertigo attacks. These attacks are so nasty - the insane dizziness, nausea, total hearing loss, and the nystagmus. Yeah, it's like Meniere's disease, but my ENT says it's not that - it's a brain involvement. :doh: Of course, we'll get to the bottom of this.

If it comes to it, I'd have them take out my vestibular system or whatever it is that they do for those who can't get relief. Sounds drastic, I know. But I really hate being blind and deaf, no offense to the Deaf/Blind intended. :bowdown:
Click to expand...

Of course not. It's hard for anyone to have hearing or vision loss, especially for someone who is already deaf or blind.

If your nystagmus becomes permanent you can try to ask your eye doctor for low vision lenses. I have some friends with nystagmus that have lenses that help them, so it's worth asking your eye doctor about.
 
Were you really sick before the Vertigo started? I got sick and could not move my neck and I woke up the next with Vertigo that lasted 6 months!
Have you thought of trying accupuncture? I am really sorry to hear it making you blind. My sister and a friend give accupuncture treatment , I could ask them what they think about treatments.
 
That's good to know, CJB. :ty:

I think it has something to do with my brain lesion that I had 4 years ago, whatdidyousay. The docs think my brain damage is causing the brain signals to be distorted and send the wrong signals to my ear. We do need to investigate further - possibly through a CT scan.
 
Back
Top