[Treatment] Tongue Biting from Seizures -- Mouthguards?

[afraid2sleep]

Hello to my fellow sufferers of sleep apnea and to those who are here to help. This is my first time here, so I'll try not to bore everyone with the irrelevant history details and just include the points.

Problem started approximately 3 years ago (I'm sure, being overweight, I've had OSA for a lot longer), I woke up one morning with a migraine, a swollen tongue that clearly had been bitten top and bottom, and marks all over my face. The marks I can only compare to the marks you get when you have the flu and have been straining and throwing up so much there's nothing left and you continue to heave so much that you get little red dots on your face from blood vessels that burst. My tongue was so swollen it affected my speech, and the soreness prevented me from being able to eat normal food.

Long story short... I went to a neurologist, he kept thinking I had epilepsy and ignored how many times I explained I'm NOT epileptic. He had me do a CT scan, a 24 hour video EEG, both of which were normal. Then he had me do a sleep study... end story being I have obstructive sleep apnea. Eventually he prescribed a CPAP which I thought at first was helping but eventually was bringing on more sinus congestion than before, and I started to have seizures more often WITH the CPAP than without.

I have extremely mild asthma, in addition to being overweight (working on it), and I pretty sure I have a deviated septum which is causing most of my sinus issues and minimally from allergies. Add all this up and from what I've gathered, depending on the position or just how my breathing is doing right then, etc, when my breathing is effected and sometimes breathing pauses, my blood oxygen level drops and the seizure is my body's way of fighting back.

So... I'm losing weight to try and fix the majority of these problems as it is hopefully, BUT, my concern is this tongue biting. I'm a pretty tough guy, and when I have an episode, the pain in my tongue is enough to bring me, a grown man, to tears... and I'm not afraid to admit it.

When I've asked the doctor (whom I'm not going to see anymore because of this) is there some sort of a mouth guard I can use to at least protect my tongue at night in the event I have an episode? Unless it's something that his group can handle, he's not interested. So I ask all of you... I've been researching mouthpieces for about 3 weeks straight now, and I'm well aware that the consensus is that no mandibular advancement items are intended to assist with OSA. To the point where most of the sites say this as if it will cause a problem if I try to use one.

To understand how painful the tongue biting has been, I'm more interested in finding something to help with the biting more so than I am the OSA, if need be. If it doesn't help me sleep, that's fine because the plan is to find a different doctor who can treat me better by actually listening and caring about what I have to say. But until then, this tongue issue... well you get the idea.

Does anyone have any suggestions or know if there are even any mouthpieces designed just to help with the tongue biting?

P.S. - Does anyone know if, or believe based on their own usage that maybe one of these mouthpieces could still help with the biting since they are designed to assist with bruxism too, I would assume they'd be soft enough on my teeth to be comfortable with it in my mouth so I don't bite my tongue. Perhaps maybe just keeping the setting of some of these to one of the lowest settings so it doesn't mess with my jaw until I can just try it for my teeth/tongue. (I do not suffer from bruxism by the way)

[Paptillian]

Hi, welcome to the forum. I don't know much about the mandibular advancement devices designed to treat OSA, but you could ask a dentist about that. Regarding mouthpieces, I have seen some that support both the upper and lower teeth. They have a hollowed out middle section so that you can still get air in the event that you need to mouth breathe.

Check your PM inbox.

[afraid2sleep]

I've been highly considering one of the double mouth guards, since it would be more affordable but also wouldn't try to bring my jaw out forward a lot so it might be comfortable at the beginning. Then at least be able to protect my tongue from the pain until I can get in to see the new doctor.

All these MAD's scare me a bit though, they all seem like devices being advertised and sold to scam people. Maybe I'm just one of those people who needs to see at least 1 approval from the FDA or something.

[trish6hundred]

Hi afraid2sleep,
WELCOME! to the forum.!
I'm not really familiar with mouth guards as I don't use them but hang in there for more responses to your post.
Good luck.

[PaulaO2]

Mouth guards for people who have seizures was, at one point, not a recommendation. It can actually make things worse. The padded tongue depressors is very old school and not used either. However, this was a number of years ago when I was involved in this part of life.

I just did a Google search for this and it is still considered dangerous and unnecessary.

What you are having is probably not seizures but intense Periodic Limb Movement Disorder (PLMD). It is as you said the brain's way of trying to wake you up to breathe.

How long did you try the CPAP before giving up? Was it a data capable one? Did you ever see a sleep doc or just go through the neurologist? Do you have a copy of your sleep study? Did they mention any limb movement during the test?

[afraid2sleep]

Mouth guards for people who have seizures was, at one point, not a recommendation. It can actually make things worse. The padded tongue depressors is very old school and not used either. However, this was a number of years ago when I was involved in this part of life.

I just did a Google search for this and it is still considered dangerous and unnecessary.

What you are having is probably not seizures but intense Periodic Limb Movement Disorder (PLMD). It is as you said the brain's way of trying to wake you up to breathe.

How long did you try the CPAP before giving up? Was it a data capable one? Did you ever see a sleep doc or just go through the neurologist? Do you have a copy of your sleep study? Did they mention any limb movement during the test?

I'm 99.9% positive that they have been seizures. I scream and stiffen out while making tight fists and tight faces all while yelping and they usually last about 30 minutes. And then when I wake up and come to I've never had a worse headache.

Are you saying it's listing it to be dangerous and unnecessary for the MAD's or for just regular normal mouth guards having nothing to do with apnea?

I tried the CPAP for almost 10 months. Yeah it was data capable but they told me never to take that out ever. Didn't seem like a bright thing to do, I can't figure out why the manufacturer would build one into it if it's not intended to be used. The neurologist was also a sleep doctor as well. Or so all the stuff on his card and the sign on his doors said. No, they said they weren't allowed to share either of my 2 sleep studies. No limb movements during the test either.

[Paptillian]

No, they said they weren't allowed to share either of my 2 sleep studies.

But you're certainly entitled to pay for them, right?

Try sending a request in writing for your medical records. If that doesn't work, send them another letter.. put the word HIPAA in there... and 'CC' your attorney. See if that helps.

[PaulaO2]

If you in the US, just mention HIPPA to them. They'll jump to get you your records.

Yes, the mouthguards for seizures were not recommended.

Mouthguards for treating OSA gets mixed results. For one, without an oximeter at the least and a sleep test at the most, there's no way to tell if it is working other than how you feel, which is not always accurate.

There are take home EEG studies. They will need to catch one of these events happening in order to properly diagnose you.

[pgw78]

I have apnea. I also clench my jaw in my sleep. My tongue actually had indentations along the edges from where my teeth were clamping down on it. I spoke to my dentist and my sleep specialist and I got a mouth guard. The dentist was originally hesitant, but, since I use a nasal mask, having my mouth obstructed by the night guard isn't really an issue.

I have a strong hard plastic (with inlaid metal reinforcement) custom-fitted night guard from the dentist, but even that wasn't good enough. I clench my teeth so strongly that I was biting through even that. So I also get night guards from the local pharmacy. (The $20 ones that you boil to fit to your teeth.) I have to replace those every once in a while, but it works. My tongue, jaw, and the jaw muscles up near my temple all feel much better. And it's never interfered with my apnea.

Your situation is different. You're having seizures and you're using a full face mask. So... I don't know. All I can tell you is that it's worked for me.

[otrpu]

. . ."So... I'm losing weight to try and fix the majority of these problems as it is hopefully, BUT, my concern is this tongue biting. I'm a pretty tough guy, and when I have an episode, the pain in my tongue is enough to bring me, a grown man, to tears... and I'm not afraid to admit it.

When I've asked the doctor (whom I'm not going to see anymore because of this) is there some sort of a mouth guard I can use to at least protect my tongue at night in the event I have an episode? Unless it's something that his group can handle, he's not interested. So I ask all of you... I've been researching mouthpieces for about 3 weeks straight now, and I'm well aware that the consensus is that no mandibular advancement items are intended to assist with OSA. To the point where most of the sites say this as if it will cause a problem if I try to use one.

To understand how painful the tongue biting has been, I'm more interested in finding something to help with the biting more so than I am the OSA, if need be. If it doesn't help me sleep, that's fine because the plan is to find a different doctor who can treat me better by actually listening and caring about what I have to say. But until then, this tongue issue... well you get the idea.

Does anyone have any suggestions or know if there are even any mouthpieces designed just to help with the tongue biting?

P.S. - Does anyone know if, or believe based on their own usage that maybe one of these mouthpieces could still help with the biting since they are designed to assist with bruxism too, I would assume they'd be soft enough on my teeth to be comfortable with it in my mouth so I don't bite my tongue. Perhaps maybe just keeping the setting of some of these to one of the lowest settings so it doesn't mess with my jaw until I can just try it for my teeth/tongue. (I do not suffer from bruxism by the way)."

I have sort of similar problem, not biting tongue, rather no top teeth, but 4 remaining in lower jaw. Been sleeping removing false teeth. This allows me to knaw at my upper gums with the remaining lower teeth. Upper gums are getting tender, so purchased a plain ole football players adult double braces mouthguard. Will give it a try tonight and see how it goes. Will return here with results.

Luck to you,
otrpu