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MickeyFan
Experienced User , Rather EHEALTHy
Joined: 28 Jan 2004
Posts: 73
Location: Algonac, Mi.
Thanks: 1
Thanked:0
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Sever Tongue Bite.....
Posted: 07-17-04 21:06pm
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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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friscod4g
New User, Becoming EHEALTHy
Joined: 26 Jun 2004
Posts: 2
Location: Texas
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Tongue Bite
Posted: 12-18-04 20:27pm
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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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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003
Posts: 200
Location: Australia
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Tongue Bite
Posted: 12-18-04 23:42pm
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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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Jake1
New User, Becoming EHEALTHy
Joined: 20 Dec 2004
Posts: 3
Location: California, USA
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Posted: 12-20-04 01:36am
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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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AmyL
New User, Becoming EHEALTHy
Joined: 04 Feb 2005
Posts: 1
Location: England
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Posted: 02-04-05 12:53pm
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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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PattyV
Extremely EHEALTHy
Joined: 01 May 2004
Posts: 1103
Location: Chicago area
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Posted: 02-04-05 13:28pm
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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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MickeyFan
Experienced User , Rather EHEALTHy
Joined: 28 Jan 2004
Posts: 73
Location: Algonac, Mi.
Thanks: 1
Thanked:0
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Posted: 02-04-05 17:13pm
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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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mom2_4kids
New User, Becoming EHEALTHy
Joined: 03 Feb 2005
Posts: 16
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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004
Posts: 252
Location: Conn
Thanks: 2
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Posted: 02-06-05 07:26am
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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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twiztid76
New User, Becoming EHEALTHy
Joined: 19 Apr 2005
Posts: 1
Location: east coast
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Tongue Biting
Posted: 04-19-05 03:19am
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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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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004
Posts: 252
Location: Conn
Thanks: 2
Thanked:0
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Posted: 04-19-05 06:38am
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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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shelbe
New User, Becoming EHEALTHy
Joined: 22 Jul 2005
Posts: 39
Location: UK
Thanks: 1
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Posted: 07-22-05 05:57am
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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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Jake1
New User, Becoming EHEALTHy
Joined: 20 Dec 2004
Posts: 3
Location: California, USA
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Posted: 07-22-05 21:58pm
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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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shelbe
New User, Becoming EHEALTHy
Joined: 22 Jul 2005
Posts: 39
Location: UK
Thanks: 1
Thanked:0
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Posted: 07-23-05 11:37am
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: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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cameo
New User, Becoming EHEALTHy
Joined: 30 Aug 2005
Posts: 18
Location: Salem, Oregon USA
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I Bit My Toungue Into
Posted: 08-30-05 17:12pm
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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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kamlaf
New User, Becoming EHEALTHy
Joined: 13 Sep 2005
Posts: 1
Location: Ottawa
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Tongue Bite Strategy
Posted: 09-13-05 19:11pm
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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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Critter074
New User, Becoming EHEALTHy
Joined: 19 Sep 2005
Posts: 9
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Posted: 09-19-05 12:04pm
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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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Critter074
New User, Becoming EHEALTHy
Joined: 19 Sep 2005
Posts: 9
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Re: Tongue Bite Strategy
Posted: 09-19-05 16:07pm
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| 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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RiffRaffMama
New User, Becoming EHEALTHy
Joined: 01 Oct 2005
Posts: 3
Location: Australia
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Thanks So Much :)
Posted: 10-01-05 21:56pm
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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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Critter074
New User, Becoming EHEALTHy
Joined: 19 Sep 2005
Posts: 9
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Re: Thanks So Much :)
Posted: 10-02-05 00:03am
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| 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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