Lack of balance/ tinnitus and seizures

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When my seizure threshold is lowest, I fall quite frequently. I feel like I'm about to fall out of my wheelchair, which I have. For me, it is all about fatigue, exhaustion, stress, and infections. My body chemistry gets so messed up, and seizures result. This is why I don't think of E as strictly a brain disorder, since the whole body is linked electrically and chemically to the brain. My tinnitus is most pronounced when I first lie down--again, changes in brain chemistry. I used to have both semipulsatory (not coinciding with the heart beat) as well as straightline sounds, but now most of my tinnitus is straightline. I do have right ear issues, from time to time, including infections, but don't think they are related to my propensity to seizures. I'm interested to see what your testing might show.
 
I get double vision about once every two weeks. I don't know if it's from having epilepsy or a med that I'm on because one of the side effects of it is double vision. I can't remember which med it is though.

I literally see two of everything and can't walk very good. I had it once during a neuro apt and he had me try to walk in a strait line. I was stumbling all over the place, it looked like I was drunk.

I notice when I'm tired it will happen but other than that I nothing else seems to bring it on.

It might last for a few minutes or a few hours. If I stare at one thing constantly it seems to make it go away faster.

I was at a concert this weekend and I had it. I know it wasn't due to anything that was going on during the concert - lights, loud music, crowds and things like that - because it's never bothered me before and I've been to a ton of concerts. My friend, that I went with, was laughing because I she said that it was probably loved having it at that time because there were two of everyone on the stage!
 
Val -- That MIGHT be so hard to live with. I hope you bring it up with your neurologist the next time you are there. I saw my eye doctor a few days ago and he linked up the tinnitus and the blurred vision and the wobbles. It turns out there is something called vestibular disfunction, meaning the vestibule of the nerves between the eyes and ears and the brain. There are physical therapy exercises that address the kind of imbalances that can occur because of vestibular disfunction! I am glad to know about this so that when I have the VEEG and they say there aren't any signs of seizures, I can say, WELL, maybe it is VESTIBULAR DISFUNCTION!
 
Thanks Bidwell.

It isn't very much fun. I've never noticed that I've had a seizure before, during (like a simple partial) or after, it just happens.

I have told my neuro about it and he said that it is something that can happen when you have epilepsy or because of a medicine. There's really nothing that you can do if it's do to the medicine except take you off the medicine. But if the medicine is working good in helping control your seizures then you may or may not want to go off of it. It's something I can deal with for now because it usually only lasts about 15 minutes.

It was nice having it at the concert though because I really love the band that I saw. Having two of the band on the stage was great! :banana: :roflmao:
 
I have been having dizzy spells a lot lately. Way worse than when I was a kid.
My ears are ringing incessantly. I went to my regular GP, who said my left ear looked like I had fluidic pressure on the drum.
Next step was for me to go to the ENT for a check-up.
The ENT did an MRI, suspecting that there was a problem with blood flow to the ear.
When I went to get the results, the first thing he asked was "did you ever have a stroke?"
I don't look like a typical stroke patient, but my balance has always been bad, my speech less than 100% articulate. My face is not droopy, and I can pass most of the tests that check for obvious signs of stroke. Except for one.
Apparently, there is one test that has my ENT concerned.
I have talked with my friends in Austin, and I will be following up with the neuro.
But the MRi definitely shows that something is different.
 
Shelley, Thanks for posting this. Those symptoms you list aren't the easiest to tolerate, to put it mildly, so I hope whatever the medical people work out they do it fast so that you feel better soon. In my case the ENT was the one who said it is a BRAIN problem and not an EAR problem.He suggested seizure, to my surprise! But then the EYE doctor said it might be a BRAIN/ EAR/EYE problem. I experience extreme rage [privately, I hope] and so I DO think about stroke, but the medical people dismiss this idea. I have a VEEG in the next few weeks. I will let you know. Please keep us posted. Thanks for your John Lennon quote. I myself have never really believed that the moon actually exists!
 
WELL, maybe it is VESTIBULAR DISFUNCTION!

ENT was the one who said it is a BRAIN problem and not an EAR problem.He suggested seizure, to my surprise! But then the EYE doctor said it might be a BRAIN/ EAR/EYE problem.
That is great that at least now you have a name to put to it. That's the first step in fixing a problem, being able to correctly identify it.

I was thinking that it might be some combination of the ears and eyes.

Let us know how the Veeg turns out and keep steady in the meantime.
 
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The ENT did an MRI, suspecting that there was a problem with blood flow to the ear...But the MRi definitely shows that something is different.

I had an MRI done shortly after my tinnitus began. The MRI did show a restriction in both Internal Carotid Arteries of about 25%. The ICAs are the arteries that feed the blood supply to the hearing part of the brain, among other things. I thought at the time there was a connection. None of the doctors that I saw even told me about the restriction. I read the MRI report myself, and subsequently viewed the CD of the MRI. A radioactive dye was injected in my arm to highlight the arteries during the latter stage of the MRI. I was wondering if they specifically looked at your arteries on your MRI.
 
Yes. Or at least that is what they say they do.
I thought I was receiving contrast dye, and then I got a call about how well I was doing when the sedative wore off.
They are supposed to use contrast dye to see what your blood vessels look like.
They shouldn't tell you about the sedative, unless it's before the injection.
Strange about the contrast dye, as for one test with my cardiologist (heart valve leak) I had the dye with no problems. The echocardiogram didn't need it, but watching the video was fascinating.
My brain glitch is years old, but I think I'm getting closer to an answer.
 
In the near future I am going to have a VEEG to establish whether my tendency to fall is linked to seizure activity. Other issues on the table are tinnitus and extreme sensitivity to noise. There is a possibility that these are manifestations of seizures. If anyone has experience with seizures that relate to this kind of issue, I would appreciate any input. I am sure I will post more as time goes by and as I get used to the idea that I have actually agreed to this line of action. [By the way, I thought of travelling to Mayo but pragmatically it is not feasible.]

I have tinnitus from time to time, frequently with seizures. Friday I tripped twice within one minute walking up the stairs. for a while i thought i had broken my hand. i am in mid seizure right now and things has been giing so well, i've had cold that turnred intochest infection anf theb a sinus infection.It's a simple partial, my arm feels very heavy. i have also noticed that at times (now
) that mt body feels like it is on fire but no fever. i am beginning to think yhat is part of a seizure. sorry for typos, i got tired of corredting tmem.
 
Thanks for posting and I hope by the time you read this you are feeling better. What you describe is like what I go through in terms of falling, but my tinnitus is non-stop. Sounds like yours comes and goes with the seizures. I have hearing aids that mask the worst shrieking quality but my tinnitus destroys peace of mind even with the masking. It is tiring. As I understand more, I will post.
 
Bidwell, you mention that the tinnitus is tiring. I can only imagine how dreadful that must be.

Does it keep you from getting to sleep at all or perhaps disturb your sleep so that you don't get the deeper more restful phases?

I was just thinking perhaps an element of the dizziness/spacing out/visual disturbances could be chronic sleep deprivation.
 
That line of thought has merit. I feel drugged and I can't figure out why because my dosage of zonisamide is so low and I have been taking it for a couple of years. But how can a sleep that feels drugged be good sleep? I am not dizzy or spaced out. When I am in danger of falling I experience myself as being insubstantial and my visual awareness does not take in the fact that I am in motion so I endanger myself. It has taken me a months to articulate that. I think it is possible that when I lose balance I am having seizures even with the zonisamide. By the way the C-Pap is less onerous than the tinnitus and the Cpap masks the tinnitus. Currently I am more freaked out about my visual blurriness than the tinnitus. I test 20/20 but I don't see well on and off, don't recognize people I know well and I meet unexpectedly in the grocery story, for instance. I have been vain about my visual acuity and memory which has nearly been photographic. But not now. And if somebody says my eyes need a little occupational therapy for my vestibular confusions, I am not going to be a gracious and grateful patient.
 
That line of thought has merit. I feel drugged and I can't figure out why because my dosage of zonisamide is so low and I have been taking it for a couple of years. But how can a sleep that feels drugged be good sleep? I am not dizzy or spaced out. When I am in danger of falling I experience myself as being insubstantial and my visual awareness does not take in the fact that I am in motion so I endanger myself. It has taken me a months to articulate that. I think it is possible that when I lose balance I am having seizures even with the zonisamide. By the way the C-Pap is less onerous than the tinnitus and the Cpap masks the tinnitus. Currently I am more freaked out about my visual blurriness than the tinnitus. I test 20/20 but I don't see well on and off, don't recognize people I know well and I meet unexpectedly in the grocery story, for instance. I have been vain about my visual acuity and memory which has nearly been photographic. But not now. And if somebody says my eyes need a little occupational therapy for my vestibular confusions, I am not going to be a gracious and grateful patient.
I have been sick sinse June 4. 1st a cold, turned into a headcold, then chest cold and now a sinus infection. I haven't been well since the cold started.I have been so off balance, felt coming up the the steps twice within one minute Friday night and almost fell in shower 3 times in shower today. Could barely stand up yesterday.

I am getting a massage in the morning. I hope it helps me feel better.
 
I hope the massage does the trick to break it up. Crashing around like that since June 4 sounds miserable. Feel better soon!
 
That line of thought has merit. I feel drugged and I can't figure out why because my dosage of zonisamide is so low and I have been taking it for a couple of years.. But how can a sleep that feels drugged be good sleep? I am not dizzy or spaced out. When I am in danger of falling I experience myself as being insubstantial and my visual awareness does not take in the fact that I am in motion so I endanger myself. It has taken me a months to articulate that. I think it is possible that when I lose balance I am having seizures even with the zonisamide. By the way the C-Pap is less onerous than the tinnitus and the Cpap masks the tinnitus. Currently I am more freaked out about my visual blurriness than the tinnitus. I test 20/20 but I don't see well on and off, don't recognize people I know well and I meet unexpectedly in the grocery story, for instance. I have been vain about my visual acuity and memory which has nearly been photographic. But not now. And if somebody says my eyes need a little occupational therapy for my vestibular confusions, I am not going to be a gracious and grateful patient.
Exactly. At the lower dose of phenobarbitol, I feel like I am actually sleeping better than with that barbiturate inducing the sleep. Real sleep.

That is an interesting way of putting it. Almost sounds like a time lag between what is happening as you move and what is being processed visually. (?) That would make sense with the fact that your eyes still test at 20/20. When you are sitting still in the optometrist's office there is no visual lag because there is no motion.
 
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ABSOLUTELY. There IS a time lag. Let's hope it is a drug issue. Unfortunately I oftenrecord bizarre visual effects. For instance, I was reading, then lifted my eyes to think a bit. The image I looked at moved one time, as if it was a single frame in a movie reel that was not working right.I have been reporting this kind of thing for years in my seizure diary. Any theories? Thanks for being interested.
 
It could be a medication effect. Did you ever have it before the meds? Are you on any other meds? (BP, blood thinners, etc.)

It could also be a problem with your optic nerve. My grandmother was never able to drive because of something that sounds very similar Hers was the result of having been smacked on the side of the head too many times as a child by an abusive jerk of a stepdad. But you have been beating yourself up a bit with all those head bonks.

So it could be some combination of the above. Perhaps started out as a med side effect and then, after a few falls involving broken glasses and black eyes, the optic nerve damage compounded things.

This would go with the fact that it was the eye doctor who said it could be an eye/ear/brain issue.
 
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Thanks!!! I think I will simply copy your post and take it with me to the neurologist who already has the history. It is a good theory with evidence she already has in the computer. For the moment I will sidestep the eye doctor. You are a true SLEUTH!
 
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