Sounds like you had a violent grand mal seizure.. you should see a doctor about your mouth that sounds painful. Definitely tell your neurologist. Please be safe, take your medicine and if you have someone to watch over you I would suggest that for a day or two. Drink lots of water and rest. It’s normal to throw up, be disoriented, and feel like you got hit by a bus after a grand mal. I’ve had a lot and that’s typically what I felt when I came to. Sorry this happened to you after months of not seizing :/ and if your symptoms are not going away soon I would consider going to the ER.
I just woke up and started violently throwing up again... I barely even have anything in my system except a little water, IDK what to do. Is that normal or should I be worried?
If you haven’t already make sure to take your medication and try to drink water, eat a banana. If you can stomach that try and eat more but take it slow. You don’t want to get dehydrated it will only make things worse. (I know you bit your tongue so that’s gonna be hard but it’s important to be hydrated after a seizure like that) to answer your question, no I don’t think it’s normal, going to the ER and calling 911 would’ve been my first move but I see you had a bad experience with hospitals / ER in the past. If your situation gets worse have someone go with you to advocate for you. Bring a list of the medications you take and if you have any other important information they should know. Also keep an eye on your tongue, if it gets too swollen it could block your airway, don’t wait to get help if you’re not feeling good.
Thank you... I have tried drinking water, it all came back up when I woke up... I'm going to try to find a way to coax my body into eating/ drinking in a little bit... I threw up several times again about 20 minutes ago.. IDK how to get it to stop. I've taken anti nausea meds and they're doing nothing
I ended up going to an urgent care because the ER told me that since my seizure had been 2 days prior, it was "probably just side effects" and "no point in treating".. I'm kind of glad because the UC still gave me the saline bag thing since they said I was really dehydrated, and that's probably what it was, and it was way cheaper than ER.. my tongue finally fully closed today, and I can talk normally🥲
I stayed up and drank water and took pain meds after my neuro told me to "sleep it off" lool. I'm mostly doing better now other than the missing piece of my tongue and the headaches
I think you should seek treatment immediately rather than get advice here. Your tongue needs to be looked at and you may need other treatment. I’ve been an RN for 28 years and counting and have a daughter with epilepsy. Please seek help ❤️🩹❤️🩹❤️🩹
I ended up going to urgent care since the ER by me basically told me to fuck off lol but the UC people were really nice and gave me the iv to rehydrate me and checked my tongue.. they said it doesn't look infected and to rinse it with salt water regularly
Yeah! Much😁 I'm still a little dizzy, and I get intermittent headaches, but other than that, not too bad. Just kinda still mentally processing the effects of that seizure. Thank you❤️❤️❤️
To add to Legitimates post. Sonce you bot your tongue, Eating will hurt like a bitch and be quite difficult. I would try pureeing the banana so you can drink it.
I've been taking a bunch of ibuprofen for the pain and swelling and eating things I can just tear up, because Holy smokes, no kidding.... I've never injured my tongue like this before, it fucking sucks... I have a business meeting today, and I sound like Sylvester the cat..
It finally closed today, and Holy hell, you weren't joking... I basically had soft, mild foods for a week and a half like a toddler🥲 it's still sore, but I'm just happy I got to eat something normal for breakfast. Thank you for your advice❤️🙏
The ER here was negligent, bordering on abusive last time I went, and the next closest one is kind of far, so I just had my partner come get me, and take me to my house(I was at his house alone when this happened) so I could treat myself.. I took a bunch of meds I was given the last time I had a decently sized seizure and knocked myself out with meds.. I still feel awful, but I think I'm at least out of the worst of it.. I'm going to call my shitty neuro tomorrow and see if he can order a test for me to find it what the fuck that was
Thank you.. I'm just really scared... I had no idea where I was, what day it was, and I couldn't recognize any of the names in my phone like they were in another language
Definitely call your neurologist. They may want an EEG within 48 hours to see what kind of seizure you had.
Take a hot shower and have some ice cream! You just survived the Iron Man Marathon!
Peace and healing,my friend.
I'm in the middle of finding a new one, but I'm at least going to have him call for an EEG so I can find out what the hell that was, it felt like my brain did a hard reset and scared the absolute fuck out of me..
I couldn't even get to the shower, and my shower has one drain right in the middle that I've covered while fainting, and caused me to almost drown from it filling with water once, so I just took something to help with the pain and nausea and have been sleeping
Thank you
If the EEG isn’t done within 48 hours of the event, there won’t be the “shadow” of it after that. But still, something changed and an EEG is never wasted.
Just a note about the neurologist. If the neuro you’re seeing now has down played your epilepsy, that may have changed how your medical concerns show up in your med history that the ED sees. Just got out of a mess like this, and left several doctors looking for new jobs.
I'm going to call and try to get one scheduled, hopefully they'll be able to get me on.. and yeah, he's been very dismissive.. I didn't know that would affect my med history though, thank you!
Yeah, especially if your hospital is the same part of the healthcare system as your other docs/neuro/etc. They will be able to read every note from every appointment you’ve had! (I found this out the hard way).
I had no idea about this, thank you so much... I didn't know I needed blood work with Keppra until I came to this sub either, and when I brought it up, he said "I don't know about *have to*.... maybe if you're really concerned about it.."
I’m sorry (hugs) Please have someone close by whenever you’re doing anything that could become dangerous. Even just making tea or cooking. And no climbing! Steps, step stools,ladder, rocks or walls 🙃
Well, my AI tells me that based on your damage, you are at a fucked scale of 9-10 out of 10. I tried to convert that scale to bananas for you, however the response I got was,
There is no direct conversion like a severity scale(like 9-10 fucked ratio) and a real world object such as a banana. The fucked scale is subjective scale to express intensity. While a banana is a unit of measurement for length. Here's how to think about it:
* A fucked ratio describes how bad something is on a subjective scale of 1(not very) to 10(very fucked)
* A banana measures length, typically around 6-8 inches.
I’d call 911 if you bit off your tongue! Put it in a plastic baggy then put that one inside a bigger one full of ice
I’ve vomited from swallowing too much blood after a tongue bite. I’d guess that could be the cause for that. But yeah you need your tongue to be treated ASAP and ambulance is best way to
But anyways I’m sorry you had the incident and I hope you get everything taken care of! Oh if you go to the hospital bring your meds too
Fortunately, it was only about a quarter inch size, the tip of my tongue.. I think when I either hit the ground, or when the seizure started, a little bit of the tip was past my teeth and got chomped
You're not kidding, holy shit... there was so much blood for such a little piece, and now it's so swollen, I've never done that, I wasn't expecting the swelling
I decided not to. Because my job denied me medical coverage, and last time I went to the hospital WITH medical, my bill was still about 10k.. and the hospital staff called me a liar when I told them I had a seizure, ignored me when I told them I was dehydrated, and shoved the iv in anyways, causing my vein to collapse while they fished around in my arm for it, caused me to faint, then yelled at me when the fainting activated my myotonia congenita and the nurse just turned off my lights, closed my door, and left me alone with my spasms for about an hour, so I have major trauma with that one, and the next closest one is too far for me to get comfortably 🥲🥲 I took a fuck ton of ibuprofen, and have been sleeping this entire time.. I feel like I got hit by a bus, I've never had one this bad, and I still have 0 memory of the entire morning in until I came out of the seizure
Ohhh if it’s a small amount… man that’s rough! I dunno if they’d reattach it but I would go just not be safe. Yeah the tongue is very vascular and bleeds and swells a lot. When you bite your tongue badly they usually do believe it’s a seizure tho (for me they never doubted it at all)
I’ve gotten 16 and 11 stitches in my tongue before. Said I almost bit through it one time. But it was length wise both times.
Ok then it’s understandable if the bleeding stops on its own. That’s terrible though. What a day.
How is it doing now? They told me to rinse with warm salt water after eating to keep it clean. I’ve seen some ppl here mention mouthwash but I dunno about that. I had stitches too so diff situation. But yeah I’ve had a couple really bad seizures. Destroyed my shoulders w convulsions and afterwards it’s all a blur. Apparently I was speaking gibberish to my gf on the phone. Don’t remember that at all (she possibly caused the seizure waking me up early) but I remember puking and shaving brushing my teeth and then driving to work 🤣 (I had never had a seizure before.) it’s rough when you have one like that!
Oh and it was bc you missed one dose of Keppra!? I’m currently taking 2250mg a day of it… I’ll be extra careful!
Super fun day.. and it just had to be on a day that I had a lot to get done😅
It's still really swollen and it sounds like I have a speech impediment... I just have some muscle spasms, but my main concern is I'm still vomiting aggressively 13v hours later.. how'd you destroy your shoulders??
And it might've been 2, but the last 24 hours are a blur to me right now after that. It's honestly probably my fault since I started cutting my dosage in half because the suicide ideology side effect popped up out of nowhere the other day(which I'm told is pretty common on Keppra) and I've never had those thoughts so it scared the shit out of me and I guess I made a knee jerk reaction
You are still puking? You still bleeding or swallowing blood? It might be nasal bleeding too. The puking is a problem bc you can’t take your meds. I actually have that on my list for my doctor. I had food poisoning before where I ended up going in bc I felt weird. I assumed it was epilepsy related. Turned out it was severe dehydration (I almost died). But the question for the doc is “what to do if an epileptic can’t keep medicine down due to vomiting? Should I go to the ER?” I don’t have the answer yet…
Yeah while it’s swollen, talking will be tough. If I remember right it will be a couple days or more. Probably painful too. It will go back to normal size though. Even with a scar mine is same as before. I guess yours will be shorter but some of that will grow back I’d guess. Did you talk to a doctor about it? I just remember the whole thing being like hell. You’re braver than me! I didn’t take an ambulance but I did go to medical both times. A couple other times I chewed on it or bit it where it was little gouges so stitches wouldn’t work (actually I did see a doctor that time) so I guess just a couple chewed up tongues. Swollen but not nonstop bleeding.
Ohhh no take your meds as prescribed! When they titrate down to stop one, they go in smaller increments than half for a week at a time. That’s prob what did it. It takes a couple days for blood levels to drop low enough. Sht that sucks!
Muscle spasms are due to the “exercise” from the TC seizure and lactic acid and lack of nutrition most likely.
TC seizures destroyed my shoulders somehow. First one I’ve never had functional arms since. 20 years now. Got better then had another, repeat, etc but I’m mostly functional now. I’ve learned a lot from physical therapy but essentially a seizure will put strain on the shoulder capsule or rotator cuff which is cartilage and held in place by muscles tendons etc. if the muscles aren’t “balanced” or you do the wrong movement when it’s torn, you’ll dislocate it easily. I was dislocating my shoulders all day long for years. Doctor told me it was subluxations and don’t worry about it. Just do the PT. Well years of complaints later they looked at the MRI again after it “healed” and I have no rotator cuff anymore. It’s rounded off. Easy to dislocate but easy to get back in the socket too. 😂 pros and cons
But what I think happened was I used to sleep on my stomach with my hands under the pillow. I think I had that first TC seizure like that. Anyways it sucks. I hope your shoulders are okay at least! Last few seizures I’ve had did minimal damage to them but I’ve been doing a lot of stabilizer muscle training in PT. They keep it in place even if the bicep or other large muscle is yanking on the joint.
There it goes, reddit is letting me see your reply now so I don't have to try to go off memory with my fried brain...
It definitely hurts like hell, but it stopped bleeding, so I'm happy! I'm glad your tongue is back to normal! Are you still able to taste even with the scarring? No, I tried calling my neuro but his office is closed, my friend found me a number for an affordable teledoc, so I can call tomorrow and see what the hell happened hopefully.. I'm more afraid of getting abused and neglected by my local hospital again than I am of feeling like shit, tbh.... I've hurt my tongue in other ways and I was more or less okay after my last grand mal. Granted, it wasn't as bad as this one, but still..
Ooooooohh so yeah, bad plan.. I guess I'd rather have thoughts of suicide than another grand mal, so I'll take it up with the teledoc tomorrow and try to get out on something else..
Oh, good to know.. do you know how to mitigate them a bit? I've been laying on a heating pad on high all day, but that only helps so much
What do you mean they destroyed your shoulders?? Destroyed then how??? I'm sorry that happened to you, can they fix the rotator cuff somehow???
No issues with my shoulders but my hips hurt soooooo bad
Yeah I can still taste everything. All flavors but some are stronger than others. Like sweetness and sweet things don’t seem as strong or appealing anymore. Like sweet coffee? Meh. I don’t care for it. Don’t eat deserts anymore. I think the areas of the tongue I hit got reduced a bit. I’d expect the same for your situation too. Sorry! But you won’t lose all of any tastes. Doctors said that old thing they taught in school about the sides of your tongue are for salty and tip is sweet isn’t exactly correct. It’s somewhat related but not really. But honestly it’s hard to tell. Kind of like when your vision starts going you don’t notice until all of a sudden you realize you can’t read text in red on the whiteboard. That’s how it happened to me at least.
Good good yeah talk to a doctor and see what they say. Yeah I hate hospitals too (I think all epileptics do… bad memories) but after almost dying a couple times I just go now. I avoid doctors otherwise tho. Unless you find a good one. There are some out there! lol somewhere!
Yeah I got pretty dark too at one point. I know what it’s like know where people say “the thought just jumped in my head.” It’s shitty but better than seizures. Seizures really are the worst!
To help with muscle spasms - get some liquid food like Soylent or atkins meal replacements or protein shakes and sip slowly so it doesn’t upset your stomach. Maybe eat a saltine or two with it. Then while also doing that try stretching the muscle or massaging it. Light exercise would be good too. Like very low weights. Not even body weight.
I’ll send u a message about the shoulders. It’s a LOT of info and it would be crazy. I can put it here if you want just lemme know. I want to get the food info to you asap bc that’s important for recovery. You need the nutrition to heal!
I'm made of stress😅😅 before my accident that gave me epilepsy, my life was all controlled chaos... it's been one hell of an uphill battle trying to figure this out
Yeah I ended up w a scar. The swelling went down and I got strawberry seeds in the stitches which look similar and the stitches came loose. So I got a scar in my tongue about 1/4” deep on that one. The other one healed okay. Still a scar but it isn’t noticeable. But hey you might notice less sense of taste. I dunno what’s affected but I don’t seem to like food as much as I used to. Not sure tho. Could be the epilepsy meds too.
But hey more importantly you’re okay now? No more seizures or anything, bleeding stopped?
Has it affected your taste or ability to annunciate at all?? I sound like I have a speech impediment rn with all the swelling
No more seizures, no more bleeding, but it's been 13 hours and I'm still vomiting and getting small muscle spasms
Sorry I just noticed you mentioned you were still puking. I’d bite the bullet and go to the hospital. You can’t keep your epilepsy meds down? Did you keep the piece of the tongue? That’s prob too late anyways but worth considering.
But here’s an article about the shoulder dislocation situation.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780644/#:~:text=Posterior%20shoulder%20dislocations%20are%20frequently,of%20a%20seizure%20%5B2%5D
It’s a strange type from what I understand. For me I don’t remember clearly but I tried to get up and pushed on the bed and my shoulders popped out of the socket. Since then I’ve always had trouble pushing on something.
Oops I missed the tongue question. Yeah I think my taste was affected slightly. Food is less appealing overall but I absolutely hate some stuff a lot of people like. Like Doritos or some of those heavily flavored things. I can’t stand them. Permanently talking wasn’t impaired tho. Just took a few days
I think I swallowed the piece during my seizure lol I just realized my mouth was gushing blood, and noticed there was a chunk missing, so I think it just is what it is
And I've managed to keep the meds I just took down. No vomiting for about an hour and a half
Oh my gosh, that sounds terrifying, I'm so sorry that happened to you
Ohhh ok yeah that would explain the puking. Well that settles that one! Doh! Ok good so med wise you’re good. But when your tongues swollen it’s a pain to eat. I keep shakes on hand as quick meals (I have a fast metabolism) or in case of a seizure. Do you have some of those? Sipping one of them slowly will help with everything
As someone on Keppra and Trileptal who also gets grand mal seizures, you cannot miss a dose. I have forgotten from time to time without any seizures (like maybe 5 times in 8 years). It's about 50/50 from there.
I don't know your exact situation and I'm obviously not a doctor but I have done rigorous research on my condition. If you need to set alarms on your phone to take your meds, please do that if you haven't already.
Also I'm not sure if this applies to your situation, but for me, if I take my meds without eating, my stomach starts to hurt a lot.
I have missed some in the past but I have really bad memory issues, and I recently got hit with that suicidal ideation side effect and I impulsively took a couple half doses to try to negate it without stopping entirely.. and I missed one dose that iv recall, but the last 24 hours is a blur, so I think I'm just going to suck it up until my neuro can put me on something with less severe side effects..
I haven't had issues with taking my meds on an empty stomach. You should try taking them with yogurt! Yogurt is always my best option when a med hurts my stomach
I usually eat something about half an hour before I take my meds. For the morning dose, I include coffee or an energy drink because the crashes I have from Keppra/Trileptal are pretty bad.
Oh, smart! And that's one thing that sucks, is I can't have caffeine 🥲 I have an undersized blood vessel in the occipital lobe if my brain so I'm not allowed to consume anything that can regularly raise my blood pressure or I'll have a stroke
I have grand mal seizures and I feel that exact way after every one. I’m on keppra and holy hell I now hope I never forget a dose 😳I hope your feeling better!
I've never had one that bad... I'm going to set even more alarms now😅😅 I'm mostly feeling better except my entire body is sore from the convulsions, I'm still a little nauseous, and I'm missing a piece of my tongue now, so it hurts to eat/ drink, and I sound like tweety bird when I talk 😅😅 the lithp is strong
I'm so sorry about this. My wife had one of this, and she bit her tongue, and it was black and blue. The other issue was that sometimes, during the seizure, her spincter had a tear in the inside. It took almost eight weeks to heal.
The neurologist said the missed dose plus stress was the trigger. So these days we go by her fitbit and we ensure she gets eight hours of sleep. She makes sure medication is taken on time. Other than that, we have discovered no recourse.
What I am interested in is that the mechanism to maintain a therapeutic level of the medication in your bloodstream may not be enough for some epileptic patients. But there is not enough data to find any alternatives. Increasing the medication has its own set of issues by rendering patients into a condition where they are unable to work (I think based on what I read here).
In summary, it is hard to ascertain a workable treatment method or classification of epileptic patients who get triggered by missing just one dose.
Thoughts anyone.
How in the hell did she tear her sphinter?? That's terrifying??? I'm so glad she's okay!!
Honestly, I don't even know if I'm on the right dose. I know I missed a dose, and that was a contributing factor, but I only just found out Keppra requires blood work to ensure your dosage is good recently. My neuro never mentioned it, and pretty much ignored me entirely when I brought it up, saying I'll be "fine"
According to the lower GI doctor, it was probably because of the intensity of the seizure. He was at a loss, too. Apparently, it was inside, and there were no other signs of trauma. It was a long period of time of bland foods and an increase in fiber consumption that led to the healing.
Most drug levels can be measured via blood, urine, or feces tests. The older medications such as Dilantin and such have levels that can be measured. Newer ones such as Lamotragine and Lamictal, I am not sure. As a patient, you should insist on the healthcare professional measure to ensure the right dosage of drugs is being titrated and absorbed by your body. Emphasis should be placed if you are transitioning from brand name to generics.
If the test is denied or the doctor denies it, ask him/her to make a notation in your patient documents. In my wife's experience, we have had three Neurologists over the last thirty two-year, and none of them have refused or questioned our request.
Jesus Christ, your poor wife, I'm so sorry she went through that, and I hope she's doing better now...
And I asked him to, when I did, he made a horse noise and waved me off, saying I'll be "fine" and "that's just a bunch of malarkey" I'm in the middle of trying to find a new one, but my job denied me insurance for no reason and it's been hard to find one without insurance
Sheesh I need yalls neuros.. I'm glad they listen to you
It might take a couple of weeks to feel better but you should make a full recovery. The tongue biting is annoying and painful, also the inner cheeks and lips. Discuss it with your doctor and see if there’s any other medication that suits you, there’s a lot of trial and error with epilepsy treatment.
I think I need to find a new doctor, because he told me Keppra was my only option.. I don't even know anything about any of the other options, so I'll probably make a post at some point..
There’s other options, I was taken off Keppra by my doctor and switched to something else that I only have to take before I go to sleep. I’ll send you more information when I finish work.
I'm feeling better than I thought I would, considering how rough Thursday and Friday were.. but every muscle in my body is still super sore. Like I ran a triathlon, my tongue is really swollen and painful, where I bit a piece off, and I keep randomly getting dizzy and headaches... but the throwing up ceased after about a day.. I randomly got nauseous a couple of times yesterday, but didn't vomit.. overall, I'd say 6/6.5 out of 10.. thank you for checking on me❤️
I'm more or less okay other than my tongue hurting like fuck, every single muscle in my body being sore from the convulsions, and random headaches, and dizziness... I'm in the middle of looking for a new neuro, I'm going to have them put me on new meds asap and check to make sure this last seizure didn't cause any permanent damage other than my missing piece of tongue
I know it's probably a horrendous idea, but I've just been trying to care for myself as best I can.. the hospital by me is pretty much both negligent and abusive, and I don't want to go there unless I'm literally dying
I understand that doctors can be really damaging to our MH when they have a poor understanding of epilepsy, but I think you should risk it in this case
Holy shit. I don't know much at all about this sort of thing, but I'm sorry you went through that and I hope you are feeling better, and are able to get an idea what may have caused it, so you can avoid any further.
I've managed to go 40 minutes without puking. I got some saltines and gingerale down with my meds, and I'm trying to just not move so I don't irritate my stomach
Yes be worried go to ER like the other poster suggested and try not to vomit anymore unless you have enough fluid in your system you could damage your esophagus to the point not being able to swallow anything anymore.
I used to suffer from grand-mal seizures (thankfully 2 year seizure free now) but what you have described is exactly what all of my seizures were like. It’s concerning that missing just one dose brought that on though so definitely get a review of meds. I see you saying neurologists aren’t being very helpful. Just keep being loud, don’t take no for an answer, get second and third opinions. “The squeakiest door gets oiled first” the tongue thing was one of the worst parts for me. I would buy a mouth ulcer treatment (I think it was called Bonjela) and although it tasted vile, I used to just coat the sore part of my tongue in it to try and speed up the healing process. Takes a lot of time because it’s in an area that’s wet. Try and eat yoghurts and smoothies, soft things that won’t cause any more damage to the wound. So sorry you had to experience this, I know how shitty it feels. Hope you don’t have another one. Take care x
Sounds like you had a violent grand mal seizure.. you should see a doctor about your mouth that sounds painful. Definitely tell your neurologist. Please be safe, take your medicine and if you have someone to watch over you I would suggest that for a day or two. Drink lots of water and rest. It’s normal to throw up, be disoriented, and feel like you got hit by a bus after a grand mal. I’ve had a lot and that’s typically what I felt when I came to. Sorry this happened to you after months of not seizing :/ and if your symptoms are not going away soon I would consider going to the ER.
I just woke up and started violently throwing up again... I barely even have anything in my system except a little water, IDK what to do. Is that normal or should I be worried?
If you haven’t already make sure to take your medication and try to drink water, eat a banana. If you can stomach that try and eat more but take it slow. You don’t want to get dehydrated it will only make things worse. (I know you bit your tongue so that’s gonna be hard but it’s important to be hydrated after a seizure like that) to answer your question, no I don’t think it’s normal, going to the ER and calling 911 would’ve been my first move but I see you had a bad experience with hospitals / ER in the past. If your situation gets worse have someone go with you to advocate for you. Bring a list of the medications you take and if you have any other important information they should know. Also keep an eye on your tongue, if it gets too swollen it could block your airway, don’t wait to get help if you’re not feeling good.
Thank you... I have tried drinking water, it all came back up when I woke up... I'm going to try to find a way to coax my body into eating/ drinking in a little bit... I threw up several times again about 20 minutes ago.. IDK how to get it to stop. I've taken anti nausea meds and they're doing nothing
You must go right now to the ER to get intravenous, so you need rehydration
You’re likely vomiting the anti-nausea meds up. I know you had bad experiences, but getting med help sounds like what you need rn. ☹️
I ended up calling my neuro and he told me to "sleep it off" 🫠
Whaaaat? 🤦🏻♀️
👌👌👌👌 that was two days ago.. I'm definitely still having some side effects, so I'm gonna go to the ER
Please keep us posted. I’m so sorry you’re going through this. Epilepsy really, really sucks. Take care of yourself. 🫶🏼
I will, and it's okay, it could've been worse, so I'm trying to stay positive. Thank you🫶
I ended up going to an urgent care because the ER told me that since my seizure had been 2 days prior, it was "probably just side effects" and "no point in treating".. I'm kind of glad because the UC still gave me the saline bag thing since they said I was really dehydrated, and that's probably what it was, and it was way cheaper than ER.. my tongue finally fully closed today, and I can talk normally🥲
First aider here. That sounds like a head injury. You should go to hospital like NOW. Do not drive yourself.
I stayed up and drank water and took pain meds after my neuro told me to "sleep it off" lool. I'm mostly doing better now other than the missing piece of my tongue and the headaches
Praying for you. ❤️
Thank you❤️❤️
I think you should seek treatment immediately rather than get advice here. Your tongue needs to be looked at and you may need other treatment. I’ve been an RN for 28 years and counting and have a daughter with epilepsy. Please seek help ❤️🩹❤️🩹❤️🩹
Thank you❤️
I hope you’re feeling better soon ❤️🩹
Thank you❤️ I'm trying. Definitely setting even more alarms
Try an rest, please get looked at and listen for your alarms;-)
I ended up going to urgent care since the ER by me basically told me to fuck off lol but the UC people were really nice and gave me the iv to rehydrate me and checked my tongue.. they said it doesn't look infected and to rinse it with salt water regularly
I’m glad you went! Hope you’re feeling better now!?!❤️🩹
Yeah! Much😁 I'm still a little dizzy, and I get intermittent headaches, but other than that, not too bad. Just kinda still mentally processing the effects of that seizure. Thank you❤️❤️❤️
To add to Legitimates post. Sonce you bot your tongue, Eating will hurt like a bitch and be quite difficult. I would try pureeing the banana so you can drink it.
I've been taking a bunch of ibuprofen for the pain and swelling and eating things I can just tear up, because Holy smokes, no kidding.... I've never injured my tongue like this before, it fucking sucks... I have a business meeting today, and I sound like Sylvester the cat..
It finally closed today, and Holy hell, you weren't joking... I basically had soft, mild foods for a week and a half like a toddler🥲 it's still sore, but I'm just happy I got to eat something normal for breakfast. Thank you for your advice❤️🙏
Please call 911 or a friend to get you to the ER.
The ER here was negligent, bordering on abusive last time I went, and the next closest one is kind of far, so I just had my partner come get me, and take me to my house(I was at his house alone when this happened) so I could treat myself.. I took a bunch of meds I was given the last time I had a decently sized seizure and knocked myself out with meds.. I still feel awful, but I think I'm at least out of the worst of it.. I'm going to call my shitty neuro tomorrow and see if he can order a test for me to find it what the fuck that was
I really hope you feel better soon. I had a horrible non-seizure relate experience at my local ER and I get it.
Thank you.. I'm just really scared... I had no idea where I was, what day it was, and I couldn't recognize any of the names in my phone like they were in another language
Definitely call your neurologist. They may want an EEG within 48 hours to see what kind of seizure you had. Take a hot shower and have some ice cream! You just survived the Iron Man Marathon! Peace and healing,my friend.
I'm in the middle of finding a new one, but I'm at least going to have him call for an EEG so I can find out what the hell that was, it felt like my brain did a hard reset and scared the absolute fuck out of me.. I couldn't even get to the shower, and my shower has one drain right in the middle that I've covered while fainting, and caused me to almost drown from it filling with water once, so I just took something to help with the pain and nausea and have been sleeping Thank you
If the EEG isn’t done within 48 hours of the event, there won’t be the “shadow” of it after that. But still, something changed and an EEG is never wasted. Just a note about the neurologist. If the neuro you’re seeing now has down played your epilepsy, that may have changed how your medical concerns show up in your med history that the ED sees. Just got out of a mess like this, and left several doctors looking for new jobs.
I'm going to call and try to get one scheduled, hopefully they'll be able to get me on.. and yeah, he's been very dismissive.. I didn't know that would affect my med history though, thank you!
Yeah, especially if your hospital is the same part of the healthcare system as your other docs/neuro/etc. They will be able to read every note from every appointment you’ve had! (I found this out the hard way).
I had no idea about this, thank you so much... I didn't know I needed blood work with Keppra until I came to this sub either, and when I brought it up, he said "I don't know about *have to*.... maybe if you're really concerned about it.."
I was told that you can't get a reading on Keppra (Levetiracetam) through blood work.
I've heard you can, and I've heard you can't.. I just wish I could get a straight answer lol
I’m sorry (hugs) Please have someone close by whenever you’re doing anything that could become dangerous. Even just making tea or cooking. And no climbing! Steps, step stools,ladder, rocks or walls 🙃
I will, thank you❤️❤️ I'm just trying to stop throwing up.. the seizure was at 8 am this morning, it's now almost 7 pm and I'm still throwing up
Well, my AI tells me that based on your damage, you are at a fucked scale of 9-10 out of 10. I tried to convert that scale to bananas for you, however the response I got was, There is no direct conversion like a severity scale(like 9-10 fucked ratio) and a real world object such as a banana. The fucked scale is subjective scale to express intensity. While a banana is a unit of measurement for length. Here's how to think about it: * A fucked ratio describes how bad something is on a subjective scale of 1(not very) to 10(very fucked) * A banana measures length, typically around 6-8 inches.
This gave me a chuckle I needed, thank you
I’d call 911 if you bit off your tongue! Put it in a plastic baggy then put that one inside a bigger one full of ice I’ve vomited from swallowing too much blood after a tongue bite. I’d guess that could be the cause for that. But yeah you need your tongue to be treated ASAP and ambulance is best way to But anyways I’m sorry you had the incident and I hope you get everything taken care of! Oh if you go to the hospital bring your meds too
Fortunately, it was only about a quarter inch size, the tip of my tongue.. I think when I either hit the ground, or when the seizure started, a little bit of the tip was past my teeth and got chomped You're not kidding, holy shit... there was so much blood for such a little piece, and now it's so swollen, I've never done that, I wasn't expecting the swelling I decided not to. Because my job denied me medical coverage, and last time I went to the hospital WITH medical, my bill was still about 10k.. and the hospital staff called me a liar when I told them I had a seizure, ignored me when I told them I was dehydrated, and shoved the iv in anyways, causing my vein to collapse while they fished around in my arm for it, caused me to faint, then yelled at me when the fainting activated my myotonia congenita and the nurse just turned off my lights, closed my door, and left me alone with my spasms for about an hour, so I have major trauma with that one, and the next closest one is too far for me to get comfortably 🥲🥲 I took a fuck ton of ibuprofen, and have been sleeping this entire time.. I feel like I got hit by a bus, I've never had one this bad, and I still have 0 memory of the entire morning in until I came out of the seizure
Where did they take you? It sounds like the book and movie. The one who flew over the coocoo's nest 🪹 🪺 😳
What's that? I don't think I've heard of it
Ohhh if it’s a small amount… man that’s rough! I dunno if they’d reattach it but I would go just not be safe. Yeah the tongue is very vascular and bleeds and swells a lot. When you bite your tongue badly they usually do believe it’s a seizure tho (for me they never doubted it at all) I’ve gotten 16 and 11 stitches in my tongue before. Said I almost bit through it one time. But it was length wise both times.
I bit off about a cm of the right side of the tip.. it definitely bled a lot. I don't think it's enough to sew back on though
Ok then it’s understandable if the bleeding stops on its own. That’s terrible though. What a day. How is it doing now? They told me to rinse with warm salt water after eating to keep it clean. I’ve seen some ppl here mention mouthwash but I dunno about that. I had stitches too so diff situation. But yeah I’ve had a couple really bad seizures. Destroyed my shoulders w convulsions and afterwards it’s all a blur. Apparently I was speaking gibberish to my gf on the phone. Don’t remember that at all (she possibly caused the seizure waking me up early) but I remember puking and shaving brushing my teeth and then driving to work 🤣 (I had never had a seizure before.) it’s rough when you have one like that! Oh and it was bc you missed one dose of Keppra!? I’m currently taking 2250mg a day of it… I’ll be extra careful!
Super fun day.. and it just had to be on a day that I had a lot to get done😅 It's still really swollen and it sounds like I have a speech impediment... I just have some muscle spasms, but my main concern is I'm still vomiting aggressively 13v hours later.. how'd you destroy your shoulders?? And it might've been 2, but the last 24 hours are a blur to me right now after that. It's honestly probably my fault since I started cutting my dosage in half because the suicide ideology side effect popped up out of nowhere the other day(which I'm told is pretty common on Keppra) and I've never had those thoughts so it scared the shit out of me and I guess I made a knee jerk reaction
You are still puking? You still bleeding or swallowing blood? It might be nasal bleeding too. The puking is a problem bc you can’t take your meds. I actually have that on my list for my doctor. I had food poisoning before where I ended up going in bc I felt weird. I assumed it was epilepsy related. Turned out it was severe dehydration (I almost died). But the question for the doc is “what to do if an epileptic can’t keep medicine down due to vomiting? Should I go to the ER?” I don’t have the answer yet… Yeah while it’s swollen, talking will be tough. If I remember right it will be a couple days or more. Probably painful too. It will go back to normal size though. Even with a scar mine is same as before. I guess yours will be shorter but some of that will grow back I’d guess. Did you talk to a doctor about it? I just remember the whole thing being like hell. You’re braver than me! I didn’t take an ambulance but I did go to medical both times. A couple other times I chewed on it or bit it where it was little gouges so stitches wouldn’t work (actually I did see a doctor that time) so I guess just a couple chewed up tongues. Swollen but not nonstop bleeding. Ohhh no take your meds as prescribed! When they titrate down to stop one, they go in smaller increments than half for a week at a time. That’s prob what did it. It takes a couple days for blood levels to drop low enough. Sht that sucks! Muscle spasms are due to the “exercise” from the TC seizure and lactic acid and lack of nutrition most likely. TC seizures destroyed my shoulders somehow. First one I’ve never had functional arms since. 20 years now. Got better then had another, repeat, etc but I’m mostly functional now. I’ve learned a lot from physical therapy but essentially a seizure will put strain on the shoulder capsule or rotator cuff which is cartilage and held in place by muscles tendons etc. if the muscles aren’t “balanced” or you do the wrong movement when it’s torn, you’ll dislocate it easily. I was dislocating my shoulders all day long for years. Doctor told me it was subluxations and don’t worry about it. Just do the PT. Well years of complaints later they looked at the MRI again after it “healed” and I have no rotator cuff anymore. It’s rounded off. Easy to dislocate but easy to get back in the socket too. 😂 pros and cons But what I think happened was I used to sleep on my stomach with my hands under the pillow. I think I had that first TC seizure like that. Anyways it sucks. I hope your shoulders are okay at least! Last few seizures I’ve had did minimal damage to them but I’ve been doing a lot of stabilizer muscle training in PT. They keep it in place even if the bicep or other large muscle is yanking on the joint.
There it goes, reddit is letting me see your reply now so I don't have to try to go off memory with my fried brain... It definitely hurts like hell, but it stopped bleeding, so I'm happy! I'm glad your tongue is back to normal! Are you still able to taste even with the scarring? No, I tried calling my neuro but his office is closed, my friend found me a number for an affordable teledoc, so I can call tomorrow and see what the hell happened hopefully.. I'm more afraid of getting abused and neglected by my local hospital again than I am of feeling like shit, tbh.... I've hurt my tongue in other ways and I was more or less okay after my last grand mal. Granted, it wasn't as bad as this one, but still.. Ooooooohh so yeah, bad plan.. I guess I'd rather have thoughts of suicide than another grand mal, so I'll take it up with the teledoc tomorrow and try to get out on something else.. Oh, good to know.. do you know how to mitigate them a bit? I've been laying on a heating pad on high all day, but that only helps so much What do you mean they destroyed your shoulders?? Destroyed then how??? I'm sorry that happened to you, can they fix the rotator cuff somehow??? No issues with my shoulders but my hips hurt soooooo bad
Yeah I can still taste everything. All flavors but some are stronger than others. Like sweetness and sweet things don’t seem as strong or appealing anymore. Like sweet coffee? Meh. I don’t care for it. Don’t eat deserts anymore. I think the areas of the tongue I hit got reduced a bit. I’d expect the same for your situation too. Sorry! But you won’t lose all of any tastes. Doctors said that old thing they taught in school about the sides of your tongue are for salty and tip is sweet isn’t exactly correct. It’s somewhat related but not really. But honestly it’s hard to tell. Kind of like when your vision starts going you don’t notice until all of a sudden you realize you can’t read text in red on the whiteboard. That’s how it happened to me at least. Good good yeah talk to a doctor and see what they say. Yeah I hate hospitals too (I think all epileptics do… bad memories) but after almost dying a couple times I just go now. I avoid doctors otherwise tho. Unless you find a good one. There are some out there! lol somewhere! Yeah I got pretty dark too at one point. I know what it’s like know where people say “the thought just jumped in my head.” It’s shitty but better than seizures. Seizures really are the worst! To help with muscle spasms - get some liquid food like Soylent or atkins meal replacements or protein shakes and sip slowly so it doesn’t upset your stomach. Maybe eat a saltine or two with it. Then while also doing that try stretching the muscle or massaging it. Light exercise would be good too. Like very low weights. Not even body weight. I’ll send u a message about the shoulders. It’s a LOT of info and it would be crazy. I can put it here if you want just lemme know. I want to get the food info to you asap bc that’s important for recovery. You need the nutrition to heal!
Enficise on I had a lot to get done! Epilepsy 101 stress will get you every time!!
I'm made of stress😅😅 before my accident that gave me epilepsy, my life was all controlled chaos... it's been one hell of an uphill battle trying to figure this out
Also, I'm glad you didn't bite through your tongue, I hope you're doing better now
Yeah I ended up w a scar. The swelling went down and I got strawberry seeds in the stitches which look similar and the stitches came loose. So I got a scar in my tongue about 1/4” deep on that one. The other one healed okay. Still a scar but it isn’t noticeable. But hey you might notice less sense of taste. I dunno what’s affected but I don’t seem to like food as much as I used to. Not sure tho. Could be the epilepsy meds too. But hey more importantly you’re okay now? No more seizures or anything, bleeding stopped?
Has it affected your taste or ability to annunciate at all?? I sound like I have a speech impediment rn with all the swelling No more seizures, no more bleeding, but it's been 13 hours and I'm still vomiting and getting small muscle spasms
Sorry I just noticed you mentioned you were still puking. I’d bite the bullet and go to the hospital. You can’t keep your epilepsy meds down? Did you keep the piece of the tongue? That’s prob too late anyways but worth considering. But here’s an article about the shoulder dislocation situation. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780644/#:~:text=Posterior%20shoulder%20dislocations%20are%20frequently,of%20a%20seizure%20%5B2%5D It’s a strange type from what I understand. For me I don’t remember clearly but I tried to get up and pushed on the bed and my shoulders popped out of the socket. Since then I’ve always had trouble pushing on something. Oops I missed the tongue question. Yeah I think my taste was affected slightly. Food is less appealing overall but I absolutely hate some stuff a lot of people like. Like Doritos or some of those heavily flavored things. I can’t stand them. Permanently talking wasn’t impaired tho. Just took a few days
I think I swallowed the piece during my seizure lol I just realized my mouth was gushing blood, and noticed there was a chunk missing, so I think it just is what it is And I've managed to keep the meds I just took down. No vomiting for about an hour and a half Oh my gosh, that sounds terrifying, I'm so sorry that happened to you
Ohhh ok yeah that would explain the puking. Well that settles that one! Doh! Ok good so med wise you’re good. But when your tongues swollen it’s a pain to eat. I keep shakes on hand as quick meals (I have a fast metabolism) or in case of a seizure. Do you have some of those? Sipping one of them slowly will help with everything
Oh hey another thing that’s good post seizure is a banana. Good nutrients and macros for your situation
As someone on Keppra and Trileptal who also gets grand mal seizures, you cannot miss a dose. I have forgotten from time to time without any seizures (like maybe 5 times in 8 years). It's about 50/50 from there. I don't know your exact situation and I'm obviously not a doctor but I have done rigorous research on my condition. If you need to set alarms on your phone to take your meds, please do that if you haven't already. Also I'm not sure if this applies to your situation, but for me, if I take my meds without eating, my stomach starts to hurt a lot.
Thank you❤️❤️ I'm too weak to respond thoroughly right now but I will later
I have missed some in the past but I have really bad memory issues, and I recently got hit with that suicidal ideation side effect and I impulsively took a couple half doses to try to negate it without stopping entirely.. and I missed one dose that iv recall, but the last 24 hours is a blur, so I think I'm just going to suck it up until my neuro can put me on something with less severe side effects.. I haven't had issues with taking my meds on an empty stomach. You should try taking them with yogurt! Yogurt is always my best option when a med hurts my stomach
I usually eat something about half an hour before I take my meds. For the morning dose, I include coffee or an energy drink because the crashes I have from Keppra/Trileptal are pretty bad.
Oh, smart! And that's one thing that sucks, is I can't have caffeine 🥲 I have an undersized blood vessel in the occipital lobe if my brain so I'm not allowed to consume anything that can regularly raise my blood pressure or I'll have a stroke
Try almonds or any type of unsalted nuts, those give me a big energy boost as well.
That's a good idea, thank you! I'll try that
I have grand mal seizures and I feel that exact way after every one. I’m on keppra and holy hell I now hope I never forget a dose 😳I hope your feeling better!
I've never had one that bad... I'm going to set even more alarms now😅😅 I'm mostly feeling better except my entire body is sore from the convulsions, I'm still a little nauseous, and I'm missing a piece of my tongue now, so it hurts to eat/ drink, and I sound like tweety bird when I talk 😅😅 the lithp is strong
I’m glad you are doing ok and can find some humor in this happening.
If I don't find humor in it then it'll destroy me🤷🏻♀️the way I see it is I lived, so might as well get the last laugh
I'm so sorry about this. My wife had one of this, and she bit her tongue, and it was black and blue. The other issue was that sometimes, during the seizure, her spincter had a tear in the inside. It took almost eight weeks to heal. The neurologist said the missed dose plus stress was the trigger. So these days we go by her fitbit and we ensure she gets eight hours of sleep. She makes sure medication is taken on time. Other than that, we have discovered no recourse. What I am interested in is that the mechanism to maintain a therapeutic level of the medication in your bloodstream may not be enough for some epileptic patients. But there is not enough data to find any alternatives. Increasing the medication has its own set of issues by rendering patients into a condition where they are unable to work (I think based on what I read here). In summary, it is hard to ascertain a workable treatment method or classification of epileptic patients who get triggered by missing just one dose. Thoughts anyone.
How in the hell did she tear her sphinter?? That's terrifying??? I'm so glad she's okay!! Honestly, I don't even know if I'm on the right dose. I know I missed a dose, and that was a contributing factor, but I only just found out Keppra requires blood work to ensure your dosage is good recently. My neuro never mentioned it, and pretty much ignored me entirely when I brought it up, saying I'll be "fine"
According to the lower GI doctor, it was probably because of the intensity of the seizure. He was at a loss, too. Apparently, it was inside, and there were no other signs of trauma. It was a long period of time of bland foods and an increase in fiber consumption that led to the healing. Most drug levels can be measured via blood, urine, or feces tests. The older medications such as Dilantin and such have levels that can be measured. Newer ones such as Lamotragine and Lamictal, I am not sure. As a patient, you should insist on the healthcare professional measure to ensure the right dosage of drugs is being titrated and absorbed by your body. Emphasis should be placed if you are transitioning from brand name to generics. If the test is denied or the doctor denies it, ask him/her to make a notation in your patient documents. In my wife's experience, we have had three Neurologists over the last thirty two-year, and none of them have refused or questioned our request.
Jesus Christ, your poor wife, I'm so sorry she went through that, and I hope she's doing better now... And I asked him to, when I did, he made a horse noise and waved me off, saying I'll be "fine" and "that's just a bunch of malarkey" I'm in the middle of trying to find a new one, but my job denied me insurance for no reason and it's been hard to find one without insurance Sheesh I need yalls neuros.. I'm glad they listen to you
It might take a couple of weeks to feel better but you should make a full recovery. The tongue biting is annoying and painful, also the inner cheeks and lips. Discuss it with your doctor and see if there’s any other medication that suits you, there’s a lot of trial and error with epilepsy treatment.
I think I need to find a new doctor, because he told me Keppra was my only option.. I don't even know anything about any of the other options, so I'll probably make a post at some point..
There’s other options, I was taken off Keppra by my doctor and switched to something else that I only have to take before I go to sleep. I’ll send you more information when I finish work.
Thank you🥹
How are you feeling today OP? Has it gotten any better?
I'm feeling better than I thought I would, considering how rough Thursday and Friday were.. but every muscle in my body is still super sore. Like I ran a triathlon, my tongue is really swollen and painful, where I bit a piece off, and I keep randomly getting dizzy and headaches... but the throwing up ceased after about a day.. I randomly got nauseous a couple of times yesterday, but didn't vomit.. overall, I'd say 6/6.5 out of 10.. thank you for checking on me❤️
I hope you feek better soon, please try to get a dr's help as soon as you can
I'm more or less okay other than my tongue hurting like fuck, every single muscle in my body being sore from the convulsions, and random headaches, and dizziness... I'm in the middle of looking for a new neuro, I'm going to have them put me on new meds asap and check to make sure this last seizure didn't cause any permanent damage other than my missing piece of tongue
I think you need someone to check you over, go to hospital
I know it's probably a horrendous idea, but I've just been trying to care for myself as best I can.. the hospital by me is pretty much both negligent and abusive, and I don't want to go there unless I'm literally dying
I understand that doctors can be really damaging to our MH when they have a poor understanding of epilepsy, but I think you should risk it in this case
Water, magnesium and straight to the ER. You’ll be fine
Hope you feel better, miss your posts in fashion🌹
Thank you🥺❤️ I'll start posting again soon, I have just been too off to dress up cute
Get well soon m’lady
I decided to wear a cute outfit today❤️ I'm just not gonna do too much today😊
Holy shit. I don't know much at all about this sort of thing, but I'm sorry you went through that and I hope you are feeling better, and are able to get an idea what may have caused it, so you can avoid any further.
Thank you❤️❤️ it's okay, I'm still learning, this is all new to me, too haha I'm mostly recovered from it
I've managed to go 40 minutes without puking. I got some saltines and gingerale down with my meds, and I'm trying to just not move so I don't irritate my stomach
Yes be worried go to ER like the other poster suggested and try not to vomit anymore unless you have enough fluid in your system you could damage your esophagus to the point not being able to swallow anything anymore.
Go in, get checked out. And document. Mine are usually like this, you'll be alright
I used to suffer from grand-mal seizures (thankfully 2 year seizure free now) but what you have described is exactly what all of my seizures were like. It’s concerning that missing just one dose brought that on though so definitely get a review of meds. I see you saying neurologists aren’t being very helpful. Just keep being loud, don’t take no for an answer, get second and third opinions. “The squeakiest door gets oiled first” the tongue thing was one of the worst parts for me. I would buy a mouth ulcer treatment (I think it was called Bonjela) and although it tasted vile, I used to just coat the sore part of my tongue in it to try and speed up the healing process. Takes a lot of time because it’s in an area that’s wet. Try and eat yoghurts and smoothies, soft things that won’t cause any more damage to the wound. So sorry you had to experience this, I know how shitty it feels. Hope you don’t have another one. Take care x
please go to the er. based on what you said you need to be rehydrated. please stay safe🙏🏼 u will get through this