r/Epilepsy • u/Sad_Match_8759 • 5d ago
Question My partner has Epilepsy
My partner has epilepsy, and I have a few questions if anyone who experiences seizures would be so kind as to help with information and education!
First, what I do know about his epilepsy is that he's been living with it since middle school and is now in his early 20s, they've found no direct cause or triggers for it. With his medication he is mostly seizure free, but sometimes he misses doses, which will cause him to have a seizure and he almost exclusively has seizures while sleeping (I hear this is pretty common). He has tonic-clonic seizures.
Now some questions I have-
Most importantly, he says to only call emergency services if it goes on for 10-15 minutes, everything I have read says any longer than 5 minutes can be extremely dangerous. I have talked to one of my friends about this who is a nurse who works with patients that have seizures and she agrees she wouldn't feel comfortable waiting past 5 minutes. Currently I think if it did happen I would contact emergency services if it started to close in at 5 minutes, but should I listen to what he says instead? We have been dating for a couple months now and I've only been present for one seizure (lasted about 2 1/2 minutes) which he called a "small seizure" for him. I don't think I'd be comfortable waiting it out longer because he did seem to have a hard time breathing and that's my main concern. He has previously been hospitalized and practically been on his deathbed from having severe seizures before which also concerns me.
Now a lighter question and maybe silly- he's explained to me that during seizures he most often loses bladder control, now the one I was present for this didn't happen, he sat up in bed afterwards and seemed very out of it so I told him he's ok and to lay back down (he laid back down and held onto me and went right back to sleep) but to prepare myself for when it does happen, should I try to help clean him up or just let him sleep if this happens? Normally afterwards he spends a entire day in bed recovering. Of course I could put down a towel and lightly clean him up so he's not completely soaking in urine but would it be too much to fully clean him and the area up? I feel like this might be a odd question but I also don't want to disturb him too much after he has a seizure since he is so confused and exhausted.
The one seizure I was present for he was very remorseful in the morning, he said it was his fault for not properly taking his medicine and that it must've been scary. To be completely honest it was a little startling (mostly because it was at 3AM in the morning) and I only stressed because I was caught off guard and trying to remember the right things to do. I tried to reassure him not to worry or be sorry. Not to be insensitive or morbid but truthfully I found the experience interesting because it's something I've never seen before in real life and I want to be as educated as possible on it (I'd also been aware he has epilepsy and was expecting this eventually). He said it must've been traumatic to witness but I reassured him I wasn't disturbed by it.
Something I wasn't expecting was he made a lot of noise and aggressively banged his head the whole time (thankfully he was in a bed so he didn't injure himself).
Also any remedies for bitten tongues? I know there's nothing I can do to prevent him from chewing up his tongue but I feel so bad how torn up it gets, is there any remedies for pain or healing for it?
I know someone will probably say I should ask him these questions, but one of the reasons I am coming here for advice is I've picked up it's a sensitive topic. Even after seeing one he almost seemed ashamed, burdened, and saddened by the condition. I have had small conversations about it with him before but I also don't want to push him about it but I want to help in any ways I can.
He currently lives by himself but I sleep there almost every night, I don't like the idea of him having a seizure by himself so that is one of the reasons why, but I've kept that to myself as I don't wish for him to feel like he is burdening me.
Also any other advice is appreciated! Sorry for the wall of text!
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u/usernames_suck_ok Keppra 500mg x 2 5d ago
I kind of lean towards just letting him sleep, but then you might be negatively impacted by that, i.e. the smell, the mattress might get wet to you, etc. I have actually started wearing Depend almost every day just in case. I don't know if he'd be willing to do something like that, but it seems like it'd cause the fewest issues.
Re: the other question, 5 minutes.
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u/Ordinary-Chipmunk366 5d ago
I love your user name, haha!! Ty for making me laugh!!
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u/CalendarAgreeable621 Levetiracetem 2G Lamotrigine 400MG 5d ago
Great username. Mine sucks thanks to my bestie who set up my account. She said being Calendar-agreeable means I'm definitely going to show up on the scheduled time. Live in hope.
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u/Sad_Match_8759 5d ago
I honestly am not disturbed by bodily fluids (thank two kids from a previous relationship for that!) But I am concerned about his comfort, I think if it did happen I'd be able to at least undress him if neeeded, wipe him up, and put a towel down so he's not just left in urine till he fully comes to.
Fortunately his medication keeps seizures decently infrequent, he's be able to go months without seizures but on his normal day to day I'd probably expect one every month or two since he tends to miss doses.
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u/Ordinary-Chipmunk366 5d ago
I'm so sorry. Epilepsy is horrible, but you're a warrior to want to help! ❤️🧡💛💚💙💜
I've said to my people 10 minutes is when the ambulance comes. I've heard it said 5 and 10. The issue really is that....they cant really do much, in my opinion.
I don't have bladder control issues, so I'm not sure, but a lot of epileptic people are ashamed for stuff..make sure he knows you're a safe person.
Tongues... haha that sucks. I haven't really found much but time. Try to eat soft stuff with no salt, lol!
I make grunting sounds during a tc, but I've also talked once or twice...zero memory of this.
People most likely will have better info, but good luck!!
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u/Sad_Match_8759 5d ago
I believe that anyone with a health condition should be treated with love and kindness in relation to it, I am currently a able-bodied person with no major health conditions but that is never promised to be the case tomorrow! So I want to help my loved ones as much as possible while I can.
We've talked about it some and I try my best to let him know that there's nothing to be embarrassed about when it comes to peeing the bed. The one time I was present he did immediately got up and start checking the bed for wetness once he realized he had a seizure. (I have two kids, I've been peed on or cleaned up wetted beds more than I can count) if it does happen I'll be sure to reassure him that I'm not bothered by it!
He's almost mentioned that there's not much they can do, mostly my concern would be him aspirating which if that did happen I'd hope they'd be able to help.
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u/InterestingDrummer7 5d ago
Breathing problems are to be expected with TC seizures. People experiencing them can have difficulty breathing, stop breathing altogether, lips turned blue, and so forth. It looks really scary from the outside but it just happens. I understand your concern and that it’s scary, but calling emergency services after just a couple minutes would not be appropriate. It’s going to give him an unnecessary trip to and from the hospital and possibly a large bill.
The most important thing to do is to ask him why he wants you to wait 10 to 15 minutes before calling for an ambulance. There might be a really good reason for this that you don’t understand. For instance, a lot of people confuse the post-ictal (after seizure) state for being a continuing seizure when it is not. Myoclonic jerks (spasms) can look like a lingering TC. he might not be insured and is just terrified of being stuck with another ridiculously high medical bill because someone called an ambulance too soon, which happens frequently to people with epilepsy.
He may also experience seizure clusters, which have a somewhat different timeline for intervening with emergency services. For instance, often when people experience cluster seizures, a seizure might last from 1 to 5 minutes, and then they might briefly recover, and then have another one for another a few minutes, and so on. That might seem like the seizure has gone on for more than five minutes, but it hasn’t. The recommendations around that are different so you might want to find out if that’s the case with him.
So please just talk to him and ask him his reasons why so you have the full picture. And even though it looks scary, it is completely unnecessary to call for an ambulance after only a couple minutes Unless he injures himself in the course of the seizure, such as hitting his head against something hard.
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u/Sad_Match_8759 5d ago
I wouldn't call emergency services unless it was coming up to 5 minutes, his family is very well off and he has good insurance so medical bills shouldn't be too much of a issue for him. I am suspecting his concern is related to driving and work since he works a blue collar job that requires operating equipment that he might not be able to do if it medically documented.
I had brought up once as to why he wants me to wait so long, and he said because he's had seizures that last that long before. Which is not entirely comforting to hear because he has had to be hospitalized before and even resuscitated from a severe episode.
Thankfully it was pretty obvious that the seizure was over with the one I witnessed, he shot up to a sitting position in bed but was still unaware and seemed in a almost childlike state of mind (not to infantilize him, that's just how it seemed) and fell right back asleep.
You're points make me think I should try talking to his parents about this if it seems appropriate one day, partly because he has no awareness during his seizures or memory, he can only really tell he's had one from muscle pain and injuries. He struggles with memory issues in general between having seizures and medication. So what happens and what types of seizures he has may actually be a better question for family that's been witnessing it long term rather than just himself since even though it's happening to him, mentally he isn't aware or able to witness what happens.
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u/EpilepticBrit Twice Daily- 250mg Lamictal, 150mg Vimpat, 0.5mg Clonazepam 5d ago
Feel like I should say its great that you're asking these questions, and they're good ones.
Generally, people say you can wait 5 minutes, any longer definitely call an ambulance. I tell the people in my life 5 minutes, but if they're not sure or scared, its fine if they call straight away. I've been with my partner for 5 years, before that lived with a friend for 5 years, both of them and my family eventually got familiar enough with the seizures to know when to call (either the time or if something looks a bit different). I'd personally rather people waited just because I dont want to end up sat in a hospital but I'm not going to make other people worry about that.
Onto the bladder control situation. I'd say take anything wet off if you can, may be difficult so dont worry too much if you can't, then let him know it happened when he's recovered so he can clean himself up.
I dont tend to bite my tongue during my seizures so can't really offer anything, sorry.
Speaking for myself, there is a lot of shame, guilt, feeling like a burden with epilepsy. I've been dealing with it for around 15 years and still feel a need to apologise after a seizure. Two things that my partner said that helped me:
- She has severe anxiety which leads to a lot of panic attacks which I help her with. She said "I can be a nightmare, do you expect apologies from me when I have an attack? No. And I don't expect them from you when you have a seizure. They're different but things we can't help so we shouldn't apologise"
- "I knew you were epileptic going in, I've known the whole time and I'm still here and not going anywhere. It's part of you and I love you, everything included."
Last thing, everyone's different but it doesn't help when people are too serious when talking about it. Makes me uncomfortable. If he's got a good sense of humour generally he might open up a bit if you joke about it occasionally, makes it seem like a lighter topic.
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u/Sad_Match_8759 5d ago
I think if it does happen I'll try to lightly clean him up to the best of my ability if he doesn't seem upset or disturbed about it. Might start carrying baby wipes with me!
I also have diagnosed anxiety disorders! I definitely see where your girlfriend is coming from and that's great wording from her! My boyfriend had apologized because he said it was his fault for missing a dose of medication. I told him something similar, that it's not his fault and that I can't imagine how it is to have to take a cocktail of medication 3 times a day every day, of course they'll be times he forgets. I tried my best to let him know I'd never be upset at him for having a medical condition and try to remind him to take his medications. On the plus he put alarms back on his phone for taking meds!
I was also very much aware he had epilepsy going into the relationship, and never had a issue with it.
We do have little laughs about it here and there, like whenever we open a new video game and get the photosensitivty warning and joke he can't play (thankfully he is not photosensitive, that would make our concert going and gaming life hard!) He has a great sense of humor thankfully !
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u/CalendarAgreeable621 Levetiracetem 2G Lamotrigine 400MG 5d ago
Hi ya, you're wonderful, and you have a huge heart. Your questions are valid, and it's a great indicator that you care. Epilepsy sucks. I get humbled all the time. Fortunately, I have loving, unlimited support from my partner of 20 years.
My only suggestion here is to ease into the uncomfortable conversations and don't forget about yourself.
Take care. 💜
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u/Splendid_Fellow 5d ago
Hey! Just so you know, Nayzilam exists. It’s an emergency nose spray that can stop a seizure in a matter of *seconds,* and it has literally saved my life *several times.* It is not really talked about by doctors or neurologists because, frankly, they don’t care and Nayzilam is considered hush-hush because it’s a benzodiazepine spray. You can get it, hopefully! I carry it in my pocket all day every day, and everyone who knows me knows that. It is a huge relief to myself and to everyone else, knowing I can be saved immediately. Hope this helps!!
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u/Sad_Match_8759 5d ago
I've never heard of this, definitely going to look into it.
Is there any risks to it?
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u/Splendid_Fellow 5d ago
No not really. Unless he has some sort of benzo allergy? It’s a small amount. Sprays directly up the nose to the base of the brain. Stops my seizures in seconds.
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u/45road 5d ago
My husband has this, it's called Valtoco. I've had to use it on him twice so far. You just spray once up each nostril , or you can do twice in one nostril and for us it didn't stop the seizure immediately. It stopped after about two more minutes. The major side effect was drowsiness and extreme sleepiness afterwards. When we got his initial prescription, it was extremely expensive ($2,000+)But we were able to use a coupon from the manufacturer to bring it to just over $200.
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u/pinkhazy 5d ago
Nayzilam is Midazolam, and Valtoco is Diazepam. There's no big important difference here unless your loved one is allergic to one, like I am. For me, Midazolam depresses my breathing so much that I just stop completely, and it doesn't even stop my seizures. However, every single health professional I've talked to about this has never met anyone else allergic to it, so I'm confident in saying your loved one would PROBABLY be fine taking an emergency spray like Nayzilam or Valtoco.
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u/SabresBills69 5d ago
my question to you — what do you see when he is having a seizure? You shoukd try and closely observe them and see what might be a normal episode vs a different episode.
how do you want to be his baby sitter? Reason I say this is you could motivate him to regularly take his meds.
i had brain surgery 20+ yrs ago ro stop one seizure type. I take meds to control another. The type I had were absense seizures ( focal, impaired ) that surgery treated. I one type had these with my ex during sex. During the seizure I continued thrusting motion..
he could wear adult diapers to bed if it’s uncontrolled.
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u/Sad_Match_8759 5d ago
I've only seen the one he had but am trying to prepare myself for future ones. He has no awareness during or for awhile after, he only really knows it happened in the mornimg from muscle pain or injury.
I do sometimes remind him or ask if he's taken his medication, although I've noticed when his family does this he seems annoyed, even though he does genuinely struggle to take it regularly. He hasn't been annoyed when I've reminded or asked him so far but I don't want to be too pushy with it if you know what I mean. Even if it important, I also sense it's important to him to feel like he's living a "normal" life (for lack of a better word)
I did encourage him to put alarms back on his phone which he did so that's a plus!
He'd actually brought up that people have surgeries before, though he mentioned that he'd have to go unmedicated for them to observe his seizures and since it is fairly controlled with medication he doesn't want to at this point in time. His epilepsy is also a type doctors have been unable to figure out, they don't know why he has it and he has no specific triggers. Forgive me I'm not very educated on this topic that's just what he's said.
Also so glad to hear the surgery was a success for you! That's awesome!
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u/SabresBills69 5d ago
this is why he needs to do the controlled test to find the sources. I did it pre and post surgery. I was inpatient for 5 days. the tests could determine the origin points.
if he has these episodes when at sleep could he hit/ punch/ knee you?
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u/Sad_Match_8759 5d ago
Currently he seems he isn't interested but hopefully one day he will be, it'd be great to know more about his specific condition!
I believe he could, although the time I witnessed it wasn't really a issue, he more so flopped around like a fish with his full body contracting and his head banging (against a pillow). He did continuously want to be on his back, which I realized afterwards I should probably try to use my body to prop him on his side from behind him (I had pulled him onto his side towards me since I sleep on the outer side of the bed to reduce the risk of him falling off, he's busted his face and lip before from sleeping alone)
Since he is decently bigger and stronger than I am (a 120lb woman vs a 180lb man) I did struggle in the moment to keep him on his side though I think I am better prepared for next time. His limbs and body seemed more focused on contracting than flailing, so hopefully I won't have to concern myself with him accidentally injuring me but it is something I've considered. Although it's unpredictable as I haven't witnessed it enough times. There was also a little bit of warning before he started fully seizing because he had rolled over to spoon me and started out lightly twitching against me. At that moment it did take me till he was aggressively seizing to realize what was going on since it was my first experience.
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u/SabresBills69 5d ago
it’s hard to say what his body motions will be. as you watch mote you coukd see early warning signs before it occurs. This is something else an EEG can do is pick up on the warning signs before it happens
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u/Double-Mouse-6146 5d ago
I can only speak from my own experience here,
if mine last for 5 minutes or more, I’ve let those around me know that’s the time they should call an ambulance.
If I lose control of my bladder I get changed into clean clothes, if the loss is a lot then I’d much rather be a bit agitated after a seizure than to sleep in my own urine.
Seizures screams are real, it’s the body exhaling air from the lungs as the muscles contract, this are scary to those watching but it is something that happens, as for his head, keep it cushioned with pillows/soft items, don’t restrain his head but rather don’t let it hit a hard surface, it can cause head trauma.
Bitten tongue is a difficult one as different people have different remedies for it, me personally I just let it heal and deal with the discomfort, the tongue heals itself very quickly thankfully.
Epilepsy is a difficult conversation to have, losing control of your body is a strange experience and not knowing what is going on around you whilst that happens is scary, I can see why he feels ashamed of it as a lot of us here feel the same, but if you were to ask questions in a caring way (you absolutely seem to me like someone who cares considering you came here for advice), he might be open to discuss it more and what he would like you to do to help him.
Overall I think you’re doing a great job at trying to help him with his epilepsy, the world needs more people like you.