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Sever Tongue Bite..... (Page 1)

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I had been doing really well, and had been off my meds and not had any seizures for several weeks, until last monday night. While I was sleeping I had a cluster of 9 grand mal seizures. I don't remember a thing. My husband kept putting ativan in my mouth and I kept spitting it out at him. When I woke up from the seizures I had blood all over my pillow and I had bite the heck out of my tongue/mouth. There is a piece missing from the side of my tongue.
Needless to say i've been put back on topamax...... And the doc told me I am lucky that i'm okay. Cuz I did what they consider going statis. And that is life threatening.
Right now its almost impossable to eat even ice cream. The doc thinks I have an infection in my tongue/mouth.
Even 5 days later i'm still having a hard time thinking and concentrating, it turned my brain to mush.
Has this ever happened to anyone else??????
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First Helper MickeyFan
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replied December 18th, 2004
Tongue Bite
Hello mickeyfan,

i am so sorry for the suffering you have gone through. I know very well the pain of a severe tongue bite and have had to endure this pain off and on for 20 years. My seizures are infrequent, I had one on last thursday night. I woke up in the middle of the night to go to the restroom and when I came back to bed I twitched so I could tell a sz was coming. The next morning I woke up with that completely exhausted worn out feeling and my tongue was swollen from biting it. I hate this feeling. The tongue is so sensitve and every movement in your mouth hurts. I am grateful that my seizures only occur at night and are relatively infrequent. I hope that someday I will outgrow these but I am already 40 so my hope is fading. The tongue is one of the most sensitve areas of the body and any pain there is almost unbearable, especially from a severe tongue bite.

I pray that the good and merciful god will provide you comfort and respite from your pain. Do not give up hope. Keep your faith.

God bless
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replied December 18th, 2004
Experienced User
Tongue Bite
Hello....
I have had what you describe, micky fan.. I had a severe seizure the other day at the store whilst shopping for christmas presents. Turned me brain to mush. The dr at the er checked me out, and I had bitten my inside lip. And my inner cheek.

Really hurts for ages, the seizures you forget, but the tongue bits are a constant reminder of what happened.

Love sami tc and merry x-mas.
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replied September 20th, 2013
I was diagnosed with some sort of epilepsy,,,i have had siezures/fits,,,,2 many to count but none in 6-7 years now,,,,,,until the other night i think with tongue biting also,,,,is not nice ,,,,,this is a first for me,,,,well for about 30 years anyway,,,,im 43,,,,,,the brain didnt go to mush but it does make the body sore. Take care all who suffer.
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replied December 20th, 2004
Hello mickey,

statue epilepticus can be very serious. I lost all memory of my childhood because of a status episode. You were lucky you didn't suffer permanent brain or heart damage.

I have not had a seizure for about 4 years now. I've had epilepsy for 37 years. I remember all too well the extreme pain from biting my tongue and cheeks. Just drinking water brought tears to my eyes. It's awful and i'm sorry your going through it. Ask you doctor for some lidocaine or another type of anesthetic that you can swish around in your mouth until the pain goes away. It really helps, especially if you have seizures frequently. My tongue seldom healed completly because of the frequency of the attacks.

Wishing you the best. Hang in there and keep on keeping on.

Jake1
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replied February 4th, 2005
Hi

i have only just started having this (what appears to be the whole epilepsy thing). I have never had a seizure before but this week I have had two, and on both occasions woken with blood pouring from my mouth.

Its painful, and I feel sorry for anyone who has this. I now talk funny, find it difficult to eat and swallow.....Put me off getting my tongue pierced thats for sure!!!
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replied November 8th, 2012
Is this epilepsy as I think it is !
My son had 4 small fits all in as many days ,he had major brain damage 10 years ago ,driving his car came out at 80 mile an hour ,hit the metal on the hard shoulder head first ! 10 years later he had these 4 fits and he was aware that something was happening ,we got an app with a neurologist ,who said it was defo not epilepsy ,then the following week he had a seizure ,bit his tongue ,hit his head as he fell was taken to A/E ,they said wait for next app to see neurologist which is in March next year ,he phoned me today sounding very odd ,his memory is playing up ,then later rang me again and said his tongue hurts badly ,just seen his tongue its split in two down the side ,it's killing him ,talking weird ,muscles hurt ,made app with doc cannot get one till tomorrow morn !
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replied February 4th, 2005
Extremely eHealthy
Mickey,sorry to hear that you are having seizures again.Please tell your husband to never put anything in your mouth when you are having a seizure.I know that ativan is not a huge pill,but it is not worth the risk of obstructing your airway while you are having a seizure.I know he means well,but he could do more harm than good in doing so.Hope you get under control soon.
Patty
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replied February 4th, 2005
Experienced User
Thanks for the concern but, the ativan I take to help stop my clusters of seizures dissolves as soon as the spit in my mouth touches it.
Dealing with this doesn't seem to get any better the older I get, my seizures seem to change as my body ages.
The seizures often change in duration and type.
I just keep trying different meds and combos of meds and hope I come upon the magic one.
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replied February 5th, 2005
:)
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replied February 6th, 2005
Experienced User
Mickey fan, I am sorry it is getting harder to deal with this! Hang in there. Yes we were prescribed the ativan at one time and told that same thing about it quickly dissolving away....


Hoping for better control for you!
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replied April 19th, 2005
Tongue Biting
Only thing I can say is do not spend 20 years in denial wishing and hoping that this is all a bad dream there are so many small things I wish I could do but know I will never be able to do like do what my father and grand father did by joining the navy I pray that there will be no more pain for any one due to suzure it really takes your self essteam level down but salt water will numb your pain I have had 3 suzure in the past two weeks with just me and my 2year old and 3year old wondering why I am on the floor and my wife geting the blood out of the carpet no one should have to go through this kind of pain
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Users who thank twiztid76 for this post: yahr 

replied April 19th, 2005
Experienced User
Twist, yes, it is a hard thing when you cannot follow the family tradition for going into the service. My kids have had to come to grip wiht this. Dad was a nay vet, they grew up around it. Grandad was army, great uncles and all 4 great grandpa's were military. Grandad has given them some grief saying they are copping out.



I am sorry you have bad ones and little ones to worry abou. Hoping you can get things better controlled soon. Hang in there.....
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replied July 22nd, 2005
I always bite my tongue severely when having a fit.I suffered 3 fits the weekend,and my tongue is still swollen.I find using teething gel works as it numbs the pain.
:)
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replied July 22nd, 2005
Sorry to hear of your recent seizures shelby. I hope your tongue heals quickly. The only good part of biting my tongue when I had seizures is that I didn't eat for about a week and I lost weight. Talk about doing it the hard way. Take care

jake
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replied July 23rd, 2005
:lol: lol yeah your right,surely is the hard way to lose weight.All my mates are jealous...5ib in 1 week.I'm starvin though.My tongue feels a bit better today,i'v managed some beans on toast.
Take care.Xx :)
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replied August 30th, 2005
I Bit My Toungue Into
The best advice I can give you is to keep your mouth as clean as possible.
I know brushing hurts " but it helps"

cameo
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replied September 13th, 2005
Tongue Bite Strategy
Hi mickey

in reading all of the accounts of tongue-destruction I was surprised to see that nobody had mentioned that "auras" before seizures often give enough time for the sufferer to put an appropriate-sized object in the mouth to save the tongue.

My husband suffers from epilepsy and had chomped his tongue repeatedly for years before he started carrying around a rolled up bandage in his pocket. He usually gets it into his mouth before the full-blown seizures occur.

Now, sometimes it doesn't do a perfect job and there are small pokes through the tongue. But the damage is nothing compared to what he was doing beforehand - a lot less blood!

Just make sure the roll of bandage you use is wide enough so you won't choke on it. We use a standard roll of gauze, about 6inches wide and 2 inches thick; then wrap in duct tape for durability (this was his idea, I thought it was softer without). He places it sideways, like a bar to bite down on; as the seizure takes hold, he grinds down on the bandage bar instead of his tongue. He carries it everywhere with him.


K
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replied January 21st, 2012
biting tongue
99% of mine are while i sleep,Wed. night got another bad bite on tongue. i never think of asking Dr.but anyone have an idea? what for pain and put in mouth while i sleep?Thanks so much
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replied September 19th, 2005
amyl wrote:
hi

i have only just started having this (what appears to be the whole epilepsy thing). I have never had a seizure before but this week I have had two, and on both occasions woken with blood pouring from my mouth.

Its painful, and I feel sorry for anyone who has this. I now talk funny, find it difficult to eat and swallow.....Put me off getting my tongue pierced thats for sure!!!


my sister also chews up her tongue during a seizure. She thought about using a guard (the dentist gave her one to protect her teeth because she grinds her teeth in her sleep). However, i'm thinking a foreign object in your mouth while you sleep might not be a good idea; especially since her seizures have all been nocturnal. Just a thought.
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replied September 19th, 2005
Re: Tongue Bite Strategy
kamlaf wrote:
in reading all of the accounts of tongue-destruction I was surprised to see that nobody had mentioned that "auras" before seizures often give enough time for the sufferer to put an appropriate-sized object in the mouth to save the tongue.

K


if you only have nocturnal (in your sleep) seizures, you have no idea when you're going to have one or that you've even had one until you wake up and your tongue is already damaged. At least that's been my sister's experience. If you're awake, and/or having auras, that would give you time to prepare. So as much as she doesn't want her seizures to spill over into daytime, I can see where that would be one advantage.
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replied October 1st, 2005
Thanks So Much :)
I just wanted to say that I stumbled across this forum in my search for information about seizures and have found it fantastic :)
i suffered my first grand mal seizure two days ago and this tongue-biting forum has provided me with my first smile in two days :)
i have been so confused and to be honest - horrified - that this happened to me for seeimingly no reason. The sore tongue has been the one thing that keeps reminding me that it *did* happen and to read that pretty much everyone else goes through the same pains and troubles is incredibly comforting.
And I wanted to add my two cents - i've found plain old paracetamol takes the pain out better than nurofen or similar. That's *if* you can swallow!
Thanks so much.
Tracy.
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replied October 2nd, 2005
Re: Thanks So Much :)
riffraffmama wrote:
i just wanted to say that I stumbled across this forum in my search for information about seizures and have found it fantastic :)
i suffered my first grand mal seizure two days ago and this tongue-biting forum has provided me with my first smile in two days :)
i have been so confused and to be honest - horrified - that this happened to me for seeimingly no reason. The sore tongue has been the one thing that keeps reminding me that it *did* happen and to read that pretty much everyone else goes through the same pains and troubles is incredibly comforting.
And I wanted to add my two cents - i've found plain old paracetamol takes the pain out better than nurofen or similar. That's *if* you can swallow!

Thanks so much.

Tracy.


tracy (also my daughter's name):

welcome to the board. There are many good message boards on the internet regarding seizures/epilepsy. This is one of them. Was your seizure while you were sleeping? My sister's have all been in her sleep; her first one 7 months ago and 3 more on september 1st. She is horrified, also, and hers also happened for no reason that they can find. Hope you found a good neuro and had all the tests. She feels a little safer now that she's on meds but there is no guarantee with meds so she still is quite frightened. Hang out here often and you'll learn a great deal about this whole "new" lifestyle; as I have. If you've only had one seizure, you are probably not on meds. It seems they hold back on that until and if you have another. I guess some people do have what they call "one-time seizure." hopefully, that will be your case.

Good luck to you,
critter ((~.~))
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