No I can't swallow my tongue

[valeriedl]

A new friend and I went to a concert last night. She knew I had epilepsy and I let her know that lights have never bothered me. She asked me if I had any sort of triggers and I told her I didn't. She seemed to know a good abut about the different types of seizures there are too.

"I need to grab your tongue so you don't swallow it don't I", she asked. I started to laugh because I though she was joking but when I looked over I saw she was dead serious! I told her I cannot swallow my tongue and she was really surprised because people had told her that a person can while they are having a seizure. I told her not to put anything in my mouth or hold me down if I had a seizure. I showed her my VNS and how to use it. I let her know that she just needed to make sure I don't hurt myself during the seizure, and if she needed to then get someone who works there to help.

I know that there are so many myths, if that's what this one is considered, about epilepsy. I just never thought that she'd ask me, or anyone would, that!

 

[CQ:)]

My nan who was born in the1920s once told me she was brought up in the era where if someone was having a seizure you’d get a ruler or something to put in their mouth. They didn’t know any different back then

When people find out I have epilepsy, majority assume it’s ‘the ones where you thrash on the ground’.
I’m forever explaining I don’t have tonic clonics and explaining what my focal seizures are.

 

[Porkette]

Hi val,

Back in the 1970's there were saying the same thing about holding down my tongue or putting a spoon in my
mouth so my tongue wouldn't roll back. All of that is a bunch of nonsense and I would even tell the school nurse
you don't do that nor do you hold a person down.

A few yrs. ago a co worker at school found a Epilepsy Museum over in Germany if you want to check it out to
find all the history of epilepsy just go online and type in Epilepsy museum and I will tell you it is different, there
are some bright colors also just to let you know to play it safe if you are interested.

Wishing You only the best and May God Bless You,

Sue

 

[Sabbo]

It's hard to believe that some people STILL believe those old myths about a person being able to swallow their tongue!! The tongue is attached to your mouth in the back--there is NO WAY a person could swallow it. I have severely bitten my tongue during a complex partial once, though.

 

[valeriedl]

I have severely bitten my tongue during a complex partial once, though.

Many times I'll chew my tongue or the inside of my mouth during a seizure. This is one way that I know that I've had a seizure during the night when I'm asleep or when there's no one to see me have it.

 

[XxBlaqkxX]

If there's one thing I hate, it's talking about epilepsy/seizures with other people. My social anxiety kicks in.

But anyway, there's soooo many misconceptions about epilepsy. It's not exactly your friend's fault for believing something so silly - these myths have gone on for many years and need to continue to be put to rest and perhaps that's what you were there to do. There are still a lot of silly myths that go around that people are told. I was crazy surprised when I first heard online that some people think epilepsy is contagious...

I'm so glad I never had a seizure around my mother-in-law while she was alive - she believed you always put something in the person's mouth and was a firm believer on sticking to that, but I don't know if she'd recognize a seizure if she saw one, either.

 

[Sabbo]

Believe it or not, I once had a complex partial seizure while in the neurologist's office, & the nurse that was there didn't realize that it was a seizure! I think it wasn't his regular nurse, though anyone working in that environment should be able to recognize seizures.

 

[Plasticmask]

"I need to grab your tongue so you don't swallow it don't I", she asked. I started to laugh because I though she was joking but when I looked over I saw she was dead serious! I told her I cannot swallow my tongue and she was really surprised because people had told her that a person can while they are having a seizure. I told her not to put anything in my mouth or hold me down if I had a seizure

I know that there are so many myths, if that's what this one is considered, about epilepsy. I just never thought that she'd ask me, or anyone would, that!

Bud Abbott, of Abbott and Costello fame, was epileptic, rest his Soul. He used to carry five unsharpened pencils in his shirt pocket "to keep me from swallowing my tongue". Wild, huh. Everyone seemed to believe that it was possible for a Human to swallow their tongue then. Even DOCTORS. Or at least Mr. Abbott's Doctor, right? Crazy stuff.
Keep in mind though that back THEN, they thought that buttermilk was good for stomach ulcers and butter itself helped second degree burns to heal (Both were recommended by DOCTORS yet made the conditions doubly worse). SO grateful to be living in a reasonably modern time.

 

[Sabbo]

It's strange how in this day & age that as soon as they hear "epilepsy", most people STILL only think of tonic-clonic/grand mal seizures.
I've often had to try to describe my simple partials. I constantly need to explain (or remind family) that if a complex partial occurs, PLEASE note the time, length, and what I was doing just before & during the seizure.

 

[XxBlaqkxX]

It's strange how in this day & age that as soon as they hear "epilepsy", most people STILL only think of tonic-clonic/grand mal seizures.
I've often had to try to describe my simple partials. I constantly need to explain (or remind family) that if a complex partial occurs, PLEASE note the time, length, and what I was doing just before & during the seizure.

This is the terrifying thing about having focal onset seizures...they don't look like seizures...all people tend to see is a person that's being strange and obstinate. They don't know what to do, they don't realize a seizure is happening, they just think you're a little "off".

Spoiler: Rant

I literally had a "friend" in middle school that shared a class with me. I remember not knowing the time and stood with her at lunch and we missed the bell to class and were SUPER late. I didn't realize that we were late and when my friend's friend asked, "Don't you have class? Lunch is over now," my friend swore and then started yelling at me, "WHY DIDN'T YOU TELL ME THE TIME!?! NOW WE'RE GOING TO BE IN TROUBLE!" The best part is, the punishment was a 15 minute lunch detention and it was writing sentences - one of my favorite things ever so I was totally unaffected, but knew now to be late to class anyway in my right mind. My friend whined about hand cramps that whole lunch time.

This same "friend" also saw me not doing work the entire class hour another day while I was fighting to stay awake and I didn't remember my locker combination so I couldn't get my work out anyway. She offered to open my locker for me, but I didn't know how to communicate that I didn't know the combo. The next day I told her, "I didn't mean to worry you yesterday, I was having a seizure at school and I didn't remember a lot of things like my locker combo and...," she then cuts me off and says, "Oh, good! I wanted to slap you in the face SO BAD!" Which she actually later did - a totally unprovoked slap in my face when we weren't even angry at each other. When I raised a hand quicker than I thought I would, the librarian warned me she would right me up or we take it outside behind the office and they could right us up and my "friends" started laughing.

I remember wandering around our large high school all day long from start to end about 3-4 times during my entirety of high school. Security and on campus police officers only thought I was inebriated.

It was a struggle growing up with focal onset seizures, which at times did progress to tonic-clonic seizures after a time. Since no one (but my parents) recognized the focal onset, I was basically alone to deal with this at school until I had a seizure in front of a lot of students. Humiliating. I wish I would've let my mom home school me like she wanted to - I probably would've avoided a lot of the social anxiety I have now.

I do wish more people knew the difference or at least that there's more than one type of seizures. I am glad about a senate bill that passed that is incorporating more seizure training into schools and such. I do hope it puts a lot of myths to rest, too.

 

[C0urt]

i can knaw the hell out of it though

 

[valeriedl]

i can knaw the hell out of it though

Been there done that and it doesn't feel good!

 

[Plasticmask]

Anyone else ever ground out a couple of teeth? Gotta have dental surgery to get the remaining teeth and roots but I figure... why?

 

[C0urt]

i have, at one point it was because my mouth was misalliagend after a dentist just tried to do the work quickly as possible after we told him i had epilepsy, the other i did it in my sleep.

 

[Plasticmask]

i have, at one point it was because my mouth was misalliagend after a dentist just tried to do the work quickly as possible after we told him i had epilepsy, the other i did it in my sleep.

I've done it during seizures. The second time I swallowed the tooth (don't ask me how I know).

 

[Pinkattitude]

Anyone else ever ground out a couple of teeth? Gotta have dental surgery to get the remaining teeth and roots but I figure... why?

Turns out, one of my office mates also has epilepsy. We discuss things now and then, and we both grind our teeth. Is it an epilepsy thing or just life these days? We can't tell.

I work at a school and we have to take mandated trainings. One is first-aid/CPR. One of the sections they taught included epilepsy, so my office mate and I were ready for the worst. It turned out to be a good training, and they said not to put anything in the person's mouth and that they won't/can't swallow their tongue. At least some people know.

 

[Sabbo]

I have to see a dentist as soon as I can (but next year, thanks to insurance). When I was in the hospital earlier this year for the extended VEEG, I broke a tooth (a bicuspid) so severely during a seizure that it partially fell out & was causing me so much pain that I could barely eat. The x-ray tech said my teeth had very strong roots. The dentist I went to in an emergency was a total IDIOT. He pulled out the tooth that was behind it instead, saying it was all cracked. The piece of the tooth that was hanging there eventually broke off, now I have to be so careful when eating--it hurts whenever food touches that partial tooth.

 

[CQ:)]

I have to see a dentist as soon as I can (but next year, thanks to insurance). When I was in the hospital earlier this year for the extended VEEG, I broke a tooth (a bicuspid) so severely during a seizure that it partially fell out & was causing me so much pain that I could barely eat. The x-ray tech said my teeth had very strong roots. The dentist I went to in an emergency was a total IDIOT. He pulled out the tooth that was behind it instead, saying it was all cracked. The piece of the tooth that was hanging there eventually broke off, now I have to be so careful when eating--it hurts whenever food touches that partial tooth.

I hope you arent in too much pain

That's one thing about my teeth I have had epilepsy since a baby and took tonic clonics until i was 3 1/2. I didnt come off my meds until i was 7.
The seizures returned when I was a few months of 25.

My mum said i was a wide variety of meds so you'd expect my teeth be bad but out of me and my 5 siblings i was the one with the best teeth.
From memory the others were at the dentist to get fillings etc. I never had issue with my teeth and had my 1st filling in my 20s, still dont have any probs and im on 4 anti seizure meds (1 is for migraines) and 1 depression med (only low and mild dosages)

 

[Sabbo]

I've always been a dairy lover. I love many types of cheese, & even now I drink milk daily. I also love snacking on raw veggies--carrots, celery, & broccoli, for example, with salsa or hummus.

 

[C0urt]

Turns out, one of my office mates also has epilepsy. We discuss things now and then, and we both grind our teeth. Is it an epilepsy thing or just life these days? We can't tell.

I work at a school and we have to take mandated trainings. One is first-aid/CPR. One of the sections they taught included epilepsy, so my office mate and I were ready for the worst. It turned out to be a good training, and they said not to put anything in the person's mouth and that they won't/can't swallow their tongue. At least some people know.

I think it is a side effect of one of the meds. I started grinding my teeth like mad. But one time it was because my dentist did the job in a hurry a crooked and my head was just trying to straighten it self out