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.]
Lack of balance/ tinnitus and seizures
- Thread starter Bidwell
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
Tinnitus? Interesting. How long have you had that? My father had tinnitus for decades but was told that his was the result of too much exposure to noise (working on airplanes in WWII before anyone thought about earplugs).
Were you ever exposed to a lot of noise for an extended period? You were the drummer in a punk band, right?
Were you ever exposed to a lot of noise for an extended period? You were the drummer in a punk band, right?
There are a lot of causes of tinnitus: middle ear infections, middle ear fluid, inner ear infections, growths (typically benign) along the acoustic and/or balance nerves that lead to the inner ear, head injuries, sinus infections, impacted wax in the ear(s), otosclerosis, loss of hearing in the ultra-high frequencies (beyond what a typical hearing test measures) as a result of aging or noise exposure, loss of hearing in the measurable frequency range congenitally or from noise exposure or from aging . . . the list is huge. But if the tinnitus is only during a seizure or around the time of one, then that is definitely worth noting. Sensitivity to noise is called hyperacusis if you want a term to google. Hyperacusis can also be related to inner ear damage (measurable or not on a hearing test) and growths on the acoustic or vestibular (balance) nerves that run between the inner ear and brain.
Interesting, I didn't know that infections could cause it.
Another question, Bidwell. How is your eyesight doing lately? Something learned by taking care of several of my aging relatives is that balance is a combination of both what goes on in the ears and the data the eyes transmit about horizon, orientation, etc.
When one or the other (eyes or ears) have a problem, the other helps to compensate but when both are declining at the same time, balance issues seem to multiply.
Another question, Bidwell. How is your eyesight doing lately? Something learned by taking care of several of my aging relatives is that balance is a combination of both what goes on in the ears and the data the eyes transmit about horizon, orientation, etc.
When one or the other (eyes or ears) have a problem, the other helps to compensate but when both are declining at the same time, balance issues seem to multiply.
- Messages
- 5,548
- Reaction score
- 25
- Points
- 213
Depending on what type of seizures you've experienced, the balance issue and tinnitus could definitely be related to the seizures. I've experienced CP and TCs and now have terrible balance problems and have ringing in the ears, partly due to several bad ear infections and a busted ear drum about 16 yrs ago. But I do know the balance problem is due to epilepsy and the meds. Many of the AEDs can/do cause balance problems.
http://www.epilepsy.com/learn/treat...y/seizure-and-epilepsy-medicines/side-effects
http://www.epilepsy.com/learn/treat...y/seizure-and-epilepsy-medicines/side-effects
Thanks so much for all this input that I will not yet digested. I was diagnosed with left temporal lobe epilepsy in 2012 but I have never really identified a seizure -- though lots of strangenesses. And I fall down a lot.The tinnitus and hyperaccusis worsened when I got hearing aids. I then saw an ear/nose/throat doc who suggested that seizures may be involved. And so onward to the VEEG. Besides hypersensitivity to sound and tinnitus, another issue is that I am in a state of ruminating, self-righteous rage a lot of the time and sometimes it gets out. I link the rage and hypersensitivity to sound. I have read that epilepsy rarely manifests as rage. I think my seizures may manifest as rage. I haven't mentioned this to any medical people yet. I scare myself. I wonder if any of you have ideas about this. I have to reread what you have already offered. Thank you. thank you. thank you.
AlohaBird According to the ear doctor about a third of the population has noise induced tinnitus...You are quite right to ask about the eye sight. It is not good and I find it strange that I keep testing at 20/20. [Another reason to wonder about seizure activity maybe.] I have another eye appointment set up for next week.
Cint, I think one important job for theVEEG is the chance to experience an extended period when the zonisamide is not in my system. As long as it is in my system it is hard to know what's what. I already know that I am ultra sensitive to drugs. You are also reminding me to tell doctors about the burst ear drums and ear infections I had as a child. I don't think they are ever recorded these days. Who knows, the test could conclude that I do not have seizures so I do not have to take medication! Thanks, Cint!
- Messages
- 5,548
- Reaction score
- 25
- Points
- 213
Your welcome. That would be wonderful if you didn't have seizures! Let's hope so.
Yes, you definitely need to sort out chickens from eggs. I hope the veeg will give you a better idea.
And yes all of that stuff, history of ear infections, ear drum damage, eyesight problems, all need to be part of the discussion with the doctor. I would suggest making a list so nothing gets left out.
As far as the "ruminating self-righteous rage" goes, I think that is the perfectly normal reaction of an intelligent person who is used to being in control of things in her own life and now is facing something potentially life changing but feels like she is not getting any straight answers from the alleged "experts" who are supposed to help.
There again, chicken and egg. Seizures "manifesting as rage" or rage in response to seizures (plus incompetent and ignorant MDs)? Or mood swings as a side effect of meds?
And yes all of that stuff, history of ear infections, ear drum damage, eyesight problems, all need to be part of the discussion with the doctor. I would suggest making a list so nothing gets left out.
As far as the "ruminating self-righteous rage" goes, I think that is the perfectly normal reaction of an intelligent person who is used to being in control of things in her own life and now is facing something potentially life changing but feels like she is not getting any straight answers from the alleged "experts" who are supposed to help.
There again, chicken and egg. Seizures "manifesting as rage" or rage in response to seizures (plus incompetent and ignorant MDs)? Or mood swings as a side effect of meds?
Last edited:
- Messages
- 5,797
- Reaction score
- 815
- Points
- 268
A few years ago I woke up in the morning and went into the kitchen. When I got there I was so dizzy that I couldn't stand up or even open my eyes. I was even throwing up. I had to scoot on the floor with a garbage can in front of me to throw up in it so I could get to a phone to call my parents who took me to the ER.
It turned out I had an inner ear infection, not sure if it was tinnitus. I was in the hospital for a few days before I came home.
It was horrible!
It turned out I had an inner ear infection, not sure if it was tinnitus. I was in the hospital for a few days before I came home.
It was horrible!
I had a few of those as a kid. They called it 'Swimmer's Ear" since I was always in the water.
A couple of times in my life I have also had something called BPPV or Benign Paroxysmal Positional Vertigo. It is basically a buildup of calcium crystals that then break loose and wreak havoc on your inner ear sending the whole world spinning when you turn your head or roll over in bed.
The treatment is really easy, some "repositioning" exercises and it went away.
http://www.medscape.com/viewarticle/714335_4
Come to think of it, I haven't had any problems with this since I stopped supplementing calcium and stopped using milk products.
This may not be at all what you have but who knows? More pieces to the puzzle.
A couple of times in my life I have also had something called BPPV or Benign Paroxysmal Positional Vertigo. It is basically a buildup of calcium crystals that then break loose and wreak havoc on your inner ear sending the whole world spinning when you turn your head or roll over in bed.
The treatment is really easy, some "repositioning" exercises and it went away.
http://www.medscape.com/viewarticle/714335_4
Come to think of it, I haven't had any problems with this since I stopped supplementing calcium and stopped using milk products.
This may not be at all what you have but who knows? More pieces to the puzzle.
Yeah. Dizziness and vertigo are separate things. A lot of people use the terms interchangeably.
The vertigo I had felt like if I turned my head quickly 90 degrees that the rest of the world went with it and and then kept spinning on past.
In older folks BPPV is often referred to as "top shelf vertigo" because you can get it when you tilt your head back to look up to the top shelf.
You said "ear doctor". Was that an audiologist or an ENT specialist?
You say you fall a lot but do you ever have any sensations prior to the falls that you can describe? Do you ever black out? Have you ever hit your head in any of these falls?
I'm thinking any number of things could have caused one fall and then, if there was damage done in that fall to the inner ear, that could be causing the problem to go chronic.
The vertigo I had felt like if I turned my head quickly 90 degrees that the rest of the world went with it and and then kept spinning on past.
In older folks BPPV is often referred to as "top shelf vertigo" because you can get it when you tilt your head back to look up to the top shelf.
You said "ear doctor". Was that an audiologist or an ENT specialist?
You say you fall a lot but do you ever have any sensations prior to the falls that you can describe? Do you ever black out? Have you ever hit your head in any of these falls?
I'm thinking any number of things could have caused one fall and then, if there was damage done in that fall to the inner ear, that could be causing the problem to go chronic.
Last edited:
Well, I called him the Ear Doc because I could not spell the name of the speciality, but you insisted so I looked it up and he is an Otolaryngologist!!!This falling has been going on a few years and I have I have dislocated my knee and broken my glasses and blacked my eyes and I HAVE hit my head--this January. I had the EEG and MRI and I did not have a stroke and there was no evidence of seizure BUT I felt the effects for months.[ I have fallen several times since then.] For the first few weeks after I hit my head I did not make sense. Generally when I fall my visual and auditory fields are confused and vague, a kind of white-out, and I am very uncoordinated and I can't save myself. {Sometimes I do save myself by using the cane as an anchor.] There are many x factors in this but this is the generic situation.I have briefly blacked out a couple of times. I am grateful to the otolaryngologist for asking the questions that would help me define what happens -- it isn't dizziness or vertigo, for starters. He was very insistent that the problem is in the brain and not in the ear. And I am comfortable with that for the moment. Thanks for thinking about this, AlohaBird! After Cint's message I cheered up because I think I am going to get something valuable out of the VEEG no matter what the outcome since it will be a vacation from the medication. I will see how that has kicked in. I am definitely going to take your advice and make lists -- a detailed list for many topics so that the doctors have many choices. I want them to feel as comfortable as possible, don't you know! Thanks for asking!
Yep an otolaryngologist is the fancy new name they have for what used to be called an ENT (ear, nose, and throat) specialist.
So, I assume they've looked to see if there is any intracranial scar tissue from one of your earlier head bumps? That can cause seizures which could then cause more head bumps, etc. And I'm assuming they have ruled out brain tumors. I hate to even mention something so awful but it has to be crossed off the list.
If the ENT says it is not an inner ear issue then I'm inclined to say that there could be something neurological going on. Particularly with what you describe as visual and auditory confusion and "white-out" and that you have lost consciousness entirely.
How soon do you get to have the veeg?
So, I assume they've looked to see if there is any intracranial scar tissue from one of your earlier head bumps? That can cause seizures which could then cause more head bumps, etc. And I'm assuming they have ruled out brain tumors. I hate to even mention something so awful but it has to be crossed off the list.
If the ENT says it is not an inner ear issue then I'm inclined to say that there could be something neurological going on. Particularly with what you describe as visual and auditory confusion and "white-out" and that you have lost consciousness entirely.
How soon do you get to have the veeg?
I think the possibilities in your second paragraph have been investigated but I will inquire when the time comes -- just to make sure. And my loss of consciousness, if they would call it that, really has been very brief.When falling consciousness is a vague deal. I'm conscious when I hit the ground.
The VEEG has not been scheduled yet. I am expecting a call. But as I told a friend, if that call does not come [and this would not completely surprise me], who am I to nudge them into action? I might think twice.
The VEEG has not been scheduled yet. I am expecting a call. But as I told a friend, if that call does not come [and this would not completely surprise me], who am I to nudge them into action? I might think twice.
Cint, I feel sure I am not telling you anything new, but just in case ...this might be of help to you. At least it is grist for the mill! The Otolaryngology doctor I saw had me ask my audiologist to adjust my hearing aids to include a program that addresses the tinnitus. It creates a masking noise. I used it yesterday and it is helpful although I still experience the tinnitus. It DOES eliminate the shrieking quality and the shrill sound is in the background.
- Messages
- 5,548
- Reaction score
- 25
- Points
- 213
My seizures started out as CPs, but over the years, went on to more severe TCs. Part of the TC for me was sometimes an auditory (hearing a voice) or visual (seeing someone) "aura" right before I completely passed out (seized).
So if that is the case for Bidwell, then it certainly could be something neurological. But now that I haven't had a bad TC for 10 yrs., I haven't had one of those auras, either.
- Messages
- 5,548
- Reaction score
- 25
- Points
- 213
Thanks.