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Mouthpieces

Hello there everyone, first post.I have been searching the Internet, and elsewhere, and I've heard anecdotal tales but no one has given me any solid evidence or word so I am hoping someone here has something that can help me.I have generalized tonic-clonic seizures and nonspecifically diagnosed epilepsy; it started at the age of 32 for no apparent reason and has been in abeyance thanks to Dilantin until just recently when I've been having grand mal seizures about once a month.The worst part about the whole thing for me (aside from the inability to drive) is the tongue injuries. Every time I have a seizure, I bite my tongue; leaving lasting injuries that take a while to heal, and make sleeping and eating a nightmare. I mostly eat yogurt and other soft foods but it's hard to get to sleep and it's a real painful experience.I tend to have a minute or two before the seizure to prepare; my aura has so far been pretty reliable as a predictor and I can get to a safe position on the floor before a seizure. What I want to know is, *can* I get a mouthpiece such as that used for football and other sports and place it in my mouth before a seizure without much risk? The "general wisdom" on seizure first aid is not to put anything in the person's mouth, and I can understand that--there are many things that would be very dangerous, that I might bite through. But I don't want these harsh tongue injuries, and am desperate to find a way to prevent them or ameliorate them in some way. A friend of mine who is a dental assistant got me a lidocaine mouthwash that I can use to dull the pain, but I'm looking to see if there's any way to PREVENT such injuries. Can anyone help?--Scott Roberts

Comments

Re: Mouthpieces

J03

I see that this comment has been added some time ago but I too am desperate to find some way to protect my tongue during episode. If you are still situated here with epilepsy.com it would mean a great deal to me if you could share any methods or ideas with me, with us. Thanks Scott Roberts

Re: Mouthpieces

Here is a page on mouthpieces and epilepsy first aid.  http://snore.myweb.hinet.net/english4.html  If you click to the bottom, you'll see "buy".  Scroll down until you see English, click and you'll find the mouthpiece for "sale."  But you'll have to email them for the price.  (I think they're out of Korea.)       

Phylis Feiner Johnson   www.epilepsytalk.com

Re: Mouthpieces

Phyllis, I'm not sure that the Korean mouthpiece would pass muster in the United States.  Every doctor and nurse I have talked to says to put nothing in the mouth.  The force of the bite is so strong that people on these boards say that they have broken their own teeth during tonic-clonic seizures.  If someone tried to put their fingers in my mouth during a seizure I could bite their fingers--hard.  The only other way to put the Korean thing in would be to shove it in without being able to see what you were doing (assuming that you could get the mouth open wide enough)  At that point you could bend back the tongue and impede the airway, I think.

It would be trickier still if the seizure has already started.  They may have already bitten their tongue and it may already be swollen.   (I'm not sure if the tongue swells right away--I'm kind of out of it for a while. :))

I just popped in my nightguard (shaped like one of the mouthpieces in your post) and bit down on my tongue.  a) it only protects from the upper teeth, whereas when I bite my tongue the bottom ones do a lot of damage and b) it might blunt the bite; instead of the sharp teeth edges biting down on the tongue, it spreads out the force of impact.  What this would mean to me is a wider bruise down my tongue, but a bruise nonetheless.

The ones with grooves for upper and lower jaw would a) be hard to sleep in unless you could train your sleeping self to breathe through your nose and b) the hard ones would be more damaging if you actually bit down, because the guard for the lower jaw would be sharper than your actual molars.

Soft ones are made of silicone, which I can see myself biting into little pieces and choking on.  In fact, we had a spare Shock Doctor mouthguard in the closet, so I just bit off a chunk.  (It wasn't bad but I prefer Wrigley's.)

Oh, and here's something I didn't think of:

http://www.epilepsyfoundation.org/forums/messageview.cfm?catid=11&thread...

Mom says her daughter's tongue thrusts during seizures push the darn thing out again.

The Korean thing might work if the patient had a warning and could pop it in ahead of time (and duct tape it to their mouth?).  If someone tries it and it works, I hope they will make a million dollars selling it in the United States.  

Best wishes from New Jersey

PS I have no first-hand knowledge of the subject at all.  Whenever I'm around a T-C seizure, I'm unconscious.  nj

 

Re: Mouthpieces

I'm going to try to find a mouthpiece to sleep with because I have seizures in my sleep and bite my tongue really bad. I want one with something on the outside to keep it from falling back into my mouth. Then I'm going to try some kind of strap to go around my head and attach it to.

I've heard all the warnings, but I'm tired of the tongue pain, bleeding, scarring/disfiguring, interfering with my singing, flute and saxophone...

Re: Mouthpieces

Hi...

I don't have this problem and was always told by my doctors that since I don't have it, I don't need anything to be put in my mouth. And also that in general nothing should be put in a person who's seizing mouth.

But... I bite a little my tongue. I do also have time to put myself in comfortable position and I always put my head on one side. Do you also do that...?

Another idea concerning this problem: if I were you, I would go directly to a hospital, the neurology part, and try to ask the nurses (doctors are too busy in general...).

Hope this helps!

Ola

http://everybodycan.wordpress.com/

Re: Mouthpieces

I don't know if anyone still pays attention to this, but if anyone knows of a way to prevent the tongue injuries, that would be extremely helpful. I have sleep siezures, so I never know I've had a seizure until the next morning, making things worse. The tongue injuries after a seizure make everything involving the mouth difficult, so if anyone knows of a way to avoid them, that'd be extremely appreciated.