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  #21  
Old 05-19-2010, 10:25 AM
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LOL...tell me about it... I've had tinnitus 24/7 for the last 2 years...
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  #22  
Old 05-20-2010, 05:41 PM
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If you have TBI, it is common to have tinnitus (sorry, tripletdad, I didn't notice if it was you or some one else who had TBI). My docs have just completely given up on even trying to deal with the tinnitus.

I use an iPod or Zune to try and help with it because sometimes it gets so bad that it really is unbearable and it's constant - worse on the right (where the more severe of my TBIs is thought to have occureed) than the left, but present in both ears. I did find, however, that the white noise of the ocean's waves and the noise of both the jet's engines and the train while traveling recently made it a lot better and not so unbearable - so pretty much any kind of "background white noise" seems to help a bit, at least for me.
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Me: "Well, Bill Cosby is a doctor too, ma'am, but that doesn't mean I want the Jello Pudding man reading my CT scans, MRIs, EEGs, or giving me prescriptions!"
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  #23  
Old 05-21-2010, 06:45 AM
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Hi Inaara, it was me that had the TBI. At that time they said I would never work again (which was VERY unacceptable to me) so I just continued on a little time off and Surprise I was able to go back to work. Now I'm not so sure that was the right thing to do as things seem to be getting worse. They also think that during the surgery to repair the damage I might have developed an "A-V" fistula which means that the vein and artery became merged because I can often times hear my heart beating in my right ear. Oh well, I've become accustomed to ignore it lol.

Neil
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  #24  
Old 05-22-2010, 01:01 AM
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What is TBI?
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Old 05-22-2010, 09:04 AM
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Originally Posted by tripletdad View Post:
What is TBI?
Sorry...Traumatic Brain Injury.

http://www.ninds.nih.gov/disorders/tbi/tbi.htm

Or, if you're feeling ambitious:

TBI Guide
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Actual conversation on firing my neurologist:
Neurologist: "You can't call me an idiot. I'm a doctor!"
Me: "Well, Bill Cosby is a doctor too, ma'am, but that doesn't mean I want the Jello Pudding man reading my CT scans, MRIs, EEGs, or giving me prescriptions!"
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Old 05-22-2010, 09:07 AM
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Originally Posted by neilB View Post:
Hi Inaara, it was me that had the TBI. At that time they said I would never work again (which was VERY unacceptable to me) so I just continued on a little time off and Surprise I was able to go back to work. Now I'm not so sure that was the right thing to do as things seem to be getting worse. They also think that during the surgery to repair the damage I might have developed an "A-V" fistula which means that the vein and artery became merged because I can often times hear my heart beating in my right ear. Oh well, I've become accustomed to ignore it lol.

Neil
And yeah. You are braver than me, Neil. Unless I am unable to speak for myself and someone else makes the call, no way am I letting them cut on my brain. Then again, I get my medical care at the VA, haha, so that would explain why I am reluctant to let them cut on me.
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Actual conversation on firing my neurologist:
Neurologist: "You can't call me an idiot. I'm a doctor!"
Me: "Well, Bill Cosby is a doctor too, ma'am, but that doesn't mean I want the Jello Pudding man reading my CT scans, MRIs, EEGs, or giving me prescriptions!"
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  #27  
Old 05-22-2010, 09:27 AM
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Magnesium has been helpful for many with this problem.
Tinnitus can be a symptom of magnesium deficiency.
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  #28  
Old 06-04-2010, 06:50 AM
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dont know if it help. but all my grand mal seizures start with ringing in the ear which progressively gets louder and louder. even the partials seem t be connected to my hearing.
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  #29  
Old 06-09-2010, 06:41 PM
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I have seizures (no diagnosis of "type" yet...early days in investigation). I also hear a noise in my ears sometimes, apparently associated with the seizures. It's not "ringing" and not continuous, but more a combination of a sensation plus a sound, a bump or snap. In fact, it's almost as though my hearing turns off and then back on for an instant.
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  #30  
Old 06-10-2010, 10:11 AM
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For about 1/2 an hour before my first seizure I heard a "hissing" sound and spent that 1/2 trying to find out where it was and to me it kept getting louder and louder. I worked with lasers and high voltage at the time and that sometimes is a signal that a high voltage power supply was breaking down so I was convinced that is what it was but SURPRISE it wasn't. After that I've had the tinnitus continuously. Had my hearing checked and it is perfect and no apparent damage but after about 8 years I've just become accustomed to it!
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  #31  
Old 06-10-2010, 12:33 PM
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Hi,

Interesting you should mention this, I get some ringing in my ears occasionally following exercise or fairly strenuous activities but really never made much of it.

I'm also on Keppra @ 3,000mg / day. To be honest, it doesn't really annoy me too much, but I can imagine if it got any worse it would become painful. Possibly something I will mention to my neurologist next time I see him.

Hope you manage to get it sorted soon, can't be a nice experience if you get it too frequently.

Take care,

Steveo
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  #32  
Old 06-10-2010, 12:37 PM
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I find I absolutely facinating that others with E. have symptoms of tinnitus and "hissing". That's exactly what I have. But I used to be in a band and thought it was related to all the loud amps. I also was worried I was losing my hearing and even went for tests to check it out.
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  #33  
Old 06-11-2010, 10:27 AM
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I have had the ringing in my left ear for a year now. It seemed to get worse over time. Went to the ENT and said the ear looked fine. He wanted to see the MRI I received after being diagnosed with Epilepsy. He stated my eardrums are thinner than normal and my left one was collasped when he looked at it. He simply had me hold my nose and blow it back up! Not sure if mine is due to seizure activity or not. I am still going through doctor visits to see if I will need a hearing aid. I have had a lot of exposure to loud noises throughout my career so I can probably explain why I have the ringing. I will try to keep you posted on my ENT visits.
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  #34  
Old 06-11-2010, 12:46 PM
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My husband suffers from seizures. The last one he had I saw him holding his hands over his ears right before he had it. He said he had ringing in his ears (first time ever) He had the ringing off and on for about 2 weeks without seizures. He hasn't complained about it for a while now. Keppra/10,000mg
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  #35  
Old 06-11-2010, 01:13 PM
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Hi Jan,

10,000 mg/day sounds like a large dose of Keppra. The largest I've seen so far is 3,000 mg/day and I take 2,500 mg/day. My seizures are from the TBI as well and before my first tonic clonic I had ringing in the ears (7 years ago) and I've had it ever since.Glad to have you both here!

Neil
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  #36  
Old 06-11-2010, 03:54 PM
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yeah. that's a lot of keppra. i am on only 1,000mg a day and i feel like it's messing up my brain, mind and personality.
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  #37  
Old 06-11-2010, 03:57 PM
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Yeah. "Motivating friend" here in OKC has me keeping much closer track of things and paying a lot closer attention and I notice that the ear ringnig is a lot worse within about 30-60 minutes before a seizure - even a simple partial. It's constatn for me, but it seemsto get really unbearably loud right before a seizure which is something I hadn't much noticed before, so that goes in the notes to let the doc see when I get hooked up with a neurologist here. (We're hoping they famr me out to the University, which they seem to be doing about 50% or more of the time since it's across the street from the VA hospital.)
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Actual conversation on firing my neurologist:
Neurologist: "You can't call me an idiot. I'm a doctor!"
Me: "Well, Bill Cosby is a doctor too, ma'am, but that doesn't mean I want the Jello Pudding man reading my CT scans, MRIs, EEGs, or giving me prescriptions!"
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