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JustMeInID 08-26-2005 09:09 PM

Gong Show in My Brain
I'm not even sure how to describe this. It seems to happen as I'm about to drift off into a deep sleep. It doesn't happen frequently -- sometimes every couple of months, sometimes less. It's almost like a...gong?...going off in my brain. It's not loud like a gong would be, but there's a definite gong-like thing going on, with almost the resulting vibration. The whole thing probably doesn't last more than a millisecond, just long enough to startle me back awake.

Am I just truly weird, or can someone hazard a guess as to what might be going on?

tiresome 08-28-2005 08:49 AM

Re: Gong Show in My Brain
I can't help to what it is but I can say that you acurately describe what I have been feeling in my head when I am laying down to sleep. It has even woke me up. I could never seem to find the right words to say what was going on. I could only think that it was similar to when a metal blind is bent the wrong way, only without the sound. I have tried to explain it to neurlolgists but they just look at me funny. I go for a Video EEG on the 19th of sept. I am hoping that they will be able to tell me what it is. So far they think it is Complex Partial Epilepsy.
Do you have any similar odd sensations when you are awake? I do, they are similar but do not have the "gong" feel to them. The ones while I am awake I have been having for about 5 years now, but the ones when I am sleeping (or about to sleep) have only been going on for about 2 months. If you find out what it is, please come back on this board and let me know.

JustMeInID 08-28-2005 10:34 AM

Re: Gong Show in My Brain
I'm sorry to hear you're experiencing something similar, but I'm also glad to know that I'm not alone! Yes, the metal blind analogy could also describe it. There's no pain with you, either, right? Just a sensation-type thing. I haven't even bothered to try to describe it to my doctor because I didn't know how.

The only thing different that I've noticed within the last year, which is about as long as this going-to-sleep thing has been happening, is that I occasionally get dizzy for no apparent reason. My first (scary) thought was Parkinson's, although I have none of the symptoms, because my mother and many of her aunts and uncles had it.

Please let me know if they determine anything from your EEG. I'll keep you in my thoughts.

tiresome 08-28-2005 04:06 PM

Re: Gong Show in My Brain
I don't have any pain with them. The ones I have when awake will sometimes make me lose my balance, slur my speech and have a hard time thinking of words when they are going on. Do yours vary in degree? I mean sometimes they hit hard and other times softer and not as noticable. The hard ones will make me flinch or if sleeping me will wake me up. I have been to several neuros trying to find out what is ging on. MRI of brain was okay and the one of my neck showed my spinal canal is narrowed from arthritis and a protruding disc, but doctors say that this is not a factor in the odd sensation I feel. I had cervical fusion of C5-6 in 1994 but they don't think that has anything to do with it. I have read a lot on complex partial seizures and some of it seems like what I have but not the odd sensations in my head. I will let you know what the Video EEG shows.

JustMeInID 08-28-2005 08:41 PM

Re: Gong Show in My Brain
Hmmm. I slur my speech on occasion, too. Don't know what I attributed that to, but I never worried about it. And after I sent the last note, I thought about a "jerk" thing my body does sometimes. Nothing that I think anyone would notice, but [U]I[/U] notice it, and it bothers me. For 20 years, I've also had a problem coming up with words when I need them. It doesn't happen often, but it occurs frequently enough to be troublesome and for me to worry, especially in a business situation, since it makes me feel stupid. :confused: That, though, I've always attributed to either ADHD or my abusive ex-husband beating me on the head. But no, I've never gotten the annoying gong sensation while awake.

Yes, please keep in touch.

JustMeInID 09-20-2005 06:50 PM

Re: Gong Show in My Brain

I've been waiting for the 19th to come and go so I could ask how your video EEG went. Any news?

tiresome 09-23-2005 05:56 PM

Re: Gong Show in My Brain
Hello, got home today from the tests. I didn't have the "gong" feeling while I was there (sigh it figures) but I did have the day time odd sensation a few times but it didn't show anything on the EEG. I had an MRI done of my brain before I left today but won't have the results from that for a while. Sorry I can't be of any help. I am afraid I don't know anymore than when I went in. Doctors say I will just have to keep exploring the posibilities and "rule out" things as we go. If it wasn't for these boards and finding a few other people who experience similar feelings then I would just decide that I am crazy and nothing is wrong, except that it sure feels like something is wrong. And my friends who know me and have been around me when I have trouble talking or have the odd sensations, tell me they can tell that something is wrong too. Maybe I should haul a few of them in the doc's office with me LOL.
Anyway, I am glad to be home and still trying to get the glue out of my hair and have sores from the leeds as they were made of metal that I am alergic to. It was really tough to to be tethered to a wall and only be able to move from bed to chair, to bathroom for 5 days. Sorry I don't know more, my doctor is suppose to call when he gets results of the MRI.

tiresome 09-28-2005 07:58 AM

Re: Gong Show in My Brain
I got an e-mail from my neuro saying that my tests were normal. I am not sure were to go from here. I am going to ask him to send all the reports to my regular doctor and see what she thinks. Sorry, I was truly hoping for some answers to what is going on. Apparently whatever it is just isn't bad enough to show up on the tests or the tests are the wrong ones for whatever it is, I don't know. I know I am tired of neuros as they think their little tests of squeeze, push and so forth tell everything they need to know, too bad it doesn't tell me what is going on with me.

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