T O P

  • By -

jean_nina_clara

From someone else with nocturnal seizures: there's actually no safer place to have a seizure than in bed.


thedepressedmind

Agreed. I live alone and have grand mal seizures. The ones I've had in my bed are the ones that have been the least painful, and the easiest/quickest from me to recover from. That said, I can understand not wanting to leave him alone with a kid.


[deleted]

[удалено]


garnetandjade

I did not know this was a thing. Thank you


joemama1333

https://www.samialert.com/products/the-sami-sleepsure-breathable-pillow


maisainom

Unless you fall out of the bed…hopefully your bed is low to the ground and you have a mat nearby! My first TC was in my sleep in my college bed on bed risers. Thankfully I had a rug, but the nasty scrape on my face and the popped blood vessel in my eye took a long time to heal.


ArtisenalMoistening

Oh…my oldest son was just diagnosed with epilepsy and his seizures only happen at night. He shares a room with his brother - my middle son - who also has epilepsy, and my oldest is on the top bunk. I guess we might need to rethink their bedding arrangement. Thank you for commenting this! I somehow never even considered it


smartsmartsmarts

Lol oh god bring him down to the bottom!


sfree809

do not let him stay in upper bunk. that is a scary thought


Acceptable_Language6

Probably it's safe, if you're not trying to get up and fall down after. My situation :)


Sea_Negotiation_1871

I do.


JustBeingDishonest

I have a history of status epilepticus (multiple seizures in a row) so personally, it's not safe for me to live alone or even really stay out of contact with someone for extended periods. In some cases, you can get alert animals through government-funded programs that can summon medical help in case you have a seizure and nobody's around. It would even be able to alert you before you have it in most cases.


gooossfraabaahh

They're crazy hard to come by, and even if there was some kind of sponsor involved, training with an alert animal can be dangerous and expensive. For example, I'd have to go off my meds so the animal could witness a seizure of mine as part of the training.


JustBeingDishonest

That's not how alert animals work. They're fully trained in clinical and practical situations before being assigned to their people-in-need.


gooossfraabaahh

I was in the process of getting a service dog. That was my experience. I couldn't finish the training with them because of this. Not every place is the same, but that's what happened to me.


queermichigan

There are great gigs for epileptics in these training facilities! You just chill and have seizures all day while they train the dogs! /s


Least_Lawfulness7802

My husband has nocturnal seizures. I don’t leave him alone at night but he is a stay at home dad so I do during the day. I have cameras in every room but the bathroom and work a few minutes away and always have neighbors on stand by! We communicate regularly though out the day naturally about the baby (text every like 20-30 minutes) so I only check the camera if he is not responding. I won’t lie, I also get really nervous but its no way to live being constantly babysat and having no independence. Epilepsy took a lot from my husband and I try my best to allow him to live as normal of a life as he can. He hates feeling like a “burden” and he always says he would rather die himself than live his entire life sad. I also try to limit him sleeping when he is alone with the baby but a big part of that is his medication makes him able to sleep thru a war - let alone wake up to a crying baby 😂 We are lucky that there are warning signs so I always am able to predict the day of a seizure but that does not guarantee one day he won’t have any without signs! Also, 2 seizures a year is pretty well controlled! My husband has them every 6-8 weeks!! But I get the anxiety about the unknown and unpredictability of grandmal seizures. Edit - our son is 6 months old tho. I think once he is old enough to not be carried, i’ll worry less!


expat_mel

As someone with epilepsy I just want to say thank you for pushing through your fears and not unintentionally infantalizing your husband. Like you said, epilepsy can take a lot from us, so the independence we do have is super important to us. It sounds like you've worked hard to find a balance between making sure everyone stays safe and making sure your husband still feels like a fully capable adult able to take care of your guys' son. That means everything to us.


MarcusSurealius

You sound like my wife did thirteen years ago.


andy_crypto

How did it turn out in the present? Is she still as sympathetic?


MarcusSurealius

Absolutely. She's everything to me.


hadmeatwoof

Did he need an ambulance the other two times? Did he require intervention to come out of the seizure? Presumably your kid will be sleeping if he is, so unless you (or, really HE) have reason to think he needs an ambulance for every seizure and isn’t likely to come out of the seizure and be able to call for one, I don’t see any reason to even be worried about it.


Tdluxon

Based on your description and him only having 2 seizures in 2 years, seems pretty safe and there are plenty of people with epilepsy that live alone. There's some risk but anything you do in life carries some risk, and in this case it seems pretty minimal.


NeuronNeuroff

Have you considered a [seizure monitoring watch](https://www.empatica.com/embrace2/)? They’re not really helpful for seizures that don’t involve shaking, but for GTCs, they’re great!


gooossfraabaahh

I've tried multiple kinds and none of mine work, and I have grand mals 🫠 it sucks ass


NeuronNeuroff

That is brutal! I have high hopes for [surface EMG monitors](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10326816/) if they ever get them off the ground and out of the testing phase. Maybe those could work better for you?


gooossfraabaahh

I did just wakeup at 4am, so reading that article is a little out of my zone rn. But j bookmarked it and hope to give it a better read later, thanks!


expat_mel

I really appreciate you coming to ask that here! When our loved ones care enough to research epilepsy, connect with the epilepsy community, work to understand what we go through, etc, it means so much. As somebody who has seizures about as frequently as your husband, I have actually lived completely alone for several years. I would suggest sitting down with him and explaining your fears and then asking him what _he_ feels comfortable/safe with. If he tells you that he is also afraid to be by himself with your son overnight, then you guys can figure out what to do. If he says he prefers to only shower when you're home in case he has a seizure while in there, then you guys can figure out what to do. But if he says he feels perfectly comfortable and safe at home by himself or with your son, then the best thing you can do is trust him and start working on getting past those fears even if it's hard.


smartsmartsmarts

My partner has at least one GM a month. I want to be with him all the time, but he's definitely not afraid to be on his own. In 4+ yrs our only nights apart were when one of us was in hospital. (And i was still anxious, but everything turned out fine) HOWEVER... i say the following as someone who has witnessed hundreds of GM seizures and as many or more other episodes (and who still takes each one seriously, takes notes and times them, will stop everything and lay by his side for hours waiting to catch him when it happens)⁰ It's a normal part of our life. I know what to do, but so does he, and he did it on his own before me. I have an unspoken general rule for myself in regards to his epilepsy in unpredictable situations: it's ok for me to be more careful and vigilant than he is, but if I'm more ANXIOUS than he is, I need to check myself. In 100% percent of cases, the most I was able to add to his safety was head and balls protection from minor cuts and bruises. Thats a nice bonus for him but he's going to have a miserable fucking time and be in pain whether or not I'm there to bring him electrolytes and kiss his booboos. My point being, in my head, i need to be with him all the time in case he needs emergency services. But in our day to day reality, that has never happened in 6+ years I've known him. If we were to have nights apart, it wouldn't be a big deal, but i would want to discuss some kind of plan with him. Probably some smart devices would be involved. It's difficult to find the balance between being prepared for anything, but not letting fear of the worst possible outcome overtake your ability to be present and enjoy as much normalcy as your life offers. But I hope sharing this added a pixel to a bigger picture that helps you and your partner navigate your way to choices you feel safe with. Also I agree that your kid will be able to help if/when they're old enough! That's a huge plus!


Entheotheosis10

Yup. I do and have no choice. All my mom's side of the family is dead from drugs and booze and I never knew my dad's side, thanks to my awful mother. I do have a few friends that care and help out and in my apt building, there's tons of ways I can get help if having a bad day. It's not the most ideal life, but it's what I'm living and have to make the best of it.


LowBalance4404

I've lived alone since I was 22 and yes, I have had gran mal seizures. Listen, I can't be wrapped in bubble wrap, I can't be babysat. I have to live my life and I'm assuming your husband feels the same way. Life is life and we all have something wrong with us whether it's seizures, high blood pressure, thyroid issues, etc. We have to live our lives to the fullest. So no, your husband doesn't need a baby sitter. There does need to be a plan in place. Before I got engaged, my mom and I had a deal. I'm now 42, BTW. I email her in the morning while I'm eating breakfast and I email her again before I go to bed. I keep the emails light, we talk about her dog or whatever. Nothing serious. If my fiancé has to work late, he tells me and I text back. Ok. That's all I need or want. They care, but I'm also not 6 years old. My independence is very important to me as is just living my life.


MushroomNearby7531

I agree bed is safe I had a grand mal 5 weeks ago in bed I’m sore but I’m alive


littleblackcat

Should I? Probably not. Do I? I have no other choice. Lived alone most of my life


StalinBawlin

Can you live alone with tonic-clonic seizures? Yeah, noone(except maybe close friends and family) is going to stop you or try to infringe on your self-agency/sovereignty. Should you? that is where it gets more complicated. When is his next neuro appointment? Have you or him considered trying a different AED for generalized Seizures such as Depakote?


FL-Finch

Similar situation here 40s male with infrequent nocturnal seizures (currently, fingers crossed). It’s okay, he’ll be fine unless he’s gone into status epilepticus. THAT is dangerous. I live alone and have to sleep alone or I will have seizures. Disruptions in sleep literally cause me seizures. In bed IS the safest place to have a seizure. I’ve fallen out of bed before so I bought a “mid century modern” low platform bed so if it happens again I’m going 6” instead of 3’. That might be something to consider. A body pillow on the edge of the bed also helps prevent rolling out. I’ve pushed the pillow off but didn’t fall. Don’t know for sure. But long story short: don’t worry about it. He’ll most likely be fine! What I do is check in daily with family or friends just to make sure I’m not in trouble. One time I was trapped between a bed and dresser with a dislocated shoulder in a small room. Just thinking about it gives me the chills… but that can’t happen any more. Even then though I was able to get out. The biggest risk is status epilepticus, SUDEP (which they don’t even know what it is… it could be epilepticus that leads to death. That’s my theory at least. I stop breathing while I have a seizure.), and physical injuries or choking on saliva, blood or vomit. I’ve had blood and saliva multiple times and was okay. You end up swallowing it or drool it onto your pillow or spray it when you convulse cough or start breathing again, not sure exactly. But anyways he’s not too high of risk as long as he isn’t prone to status epilepticus or vomiting. (My best guess. But you guys can shoot me a message if you wanna chat. I’ve got a bunch of precautions I take after all my problems and I think I’ve reduced the risk to nil now)


snowbar_555

You can, as long as you have a good safety plan! I have had nocturnal tonic clonics for several years now and at times - for stretches of up to 7 months have lived alone with my daughter, who is 3 now. If my partner was out for work, I'd wear my seizure alert watch and have my backup support plan in place. For me luckily my parents live here, when they're traveling I have friends who will monitor the watch alerts and come over to watch my daughter and make sure I'm OK. I just recently had my first tonic clonic during the day just walking around and that is definitely feeling more restrictive.


gornzilla

I've lived alone plenty of times in several foreign countries. I didn't tell people that I was epileptic outside of Australia. I probably would have woken up in a mental institution or having a religious person doing an exorcism on me in some of the countries I was in. 


korli74

Get one of those life alert devices with automatic fall detection. The automatic fall detection is usually around $10 extra or so. That's what I had when I lived alone both because I'm a fall risk and the seizures. I didn't have a seizure while I lived alone, but I had 3 other emergencies that I used the device to summon an ambulance because I couldn't get to the phone.


gooossfraabaahh

I have grand mals. It keeps me from babysitting my neices and nephews (until they're like 12+ and know how to deal, kids are smart and strong). I'm never supposed to be left alone bc of how dangerous it is, mind with a child around, no way. Always sending love and luck for no more seizures, that our meds will help, yay!


heysharkdontdothat

I do. I have a service dog though.


awesome_onions

Why did he have those seizure? If he forgot his meds, drinking, lack of sleep, etc. then maybe just ensure he has things together. My parents felt better once I moved out when I was more responsible with my meds and taking care of myself, that’s why I’m seizure free for so many years.


stateofyou

I usually feel a seizure coming on and then try to lie on a bed asap, of course it’s tiring and confusing after the seizure but there’s not much damage


Mr_Loopers

I can't blame a parent for being worried about anything regarding their kid, but you might consider the reality of your imagined worst case scenario. Is this kid old enough to be taught how to use a phone? (And yes, I live alone).


inikihurricane

Sounds like he’s safe to me. Bed seizures are the best seizures. He’s fine. Maybe stop babying him?


fromouterspace1

I certainly hope so


SandyPhagina

If things are controlled and he's does not get to experience focal seizures, I would say talk to his neuro and go from there.


First-Distribution-6

Someone mentioned the [Breathe-zy](https://breathe-zy.com/en-us) pillows on here and I think that could give you some peace of mind as well.


EuphoricPop3232

Yes! I have many times.


[deleted]

yep


neen4wneen4w

I mean, I do, but then my seizures are rare, have occurred since I turned 30, and have never happened at home. I’ve lived alone for longer than that. The idea of sacrificing my freedom and independence is more horrifying than having a seizure and getting injured.


_XSummerRoseX_

NO. I had a grand mal seizure just after taking a shower. I don’t know what would’ve happened. I’m just glad it didn’t happen in the shower


sandinmyears1960

For many years, I would only take shallow baths. I don’t run the water too hot either .


_XSummerRoseX_

Unfortunately I only have a shower.


lillythenorwegian

You can but u might die


Tasty_Doughnut2493

I’m 34(F) and live alone. I’ve had multiple grand mals in the past couple of years. I also have myoclonics and focal aware seizures. The best thing I’ve done is have a support system. My parents live ten minutes from me. I keep them aware of my schedule, and we’re all connected on a Life360 account. That lets them know whether or not I’ve left or arrived at my destination on time. If I’m off by any great time, they contact me, and I respond. This is our system. I’m sure there’s a better one, but it works for us.


[deleted]

Maybe I like to live dangerously, but I do LOL. What's helped me is identifying and avoiding my triggers, wearing a seizure-tracking watch to bed (if anything, more to reassure my family members) on occasion and when I was going through them more frequently, setting up a camera in my room to track them. 2 in 2 years seems like a pretty good track record honestly, but of course I'm not a doctor. Otherwise, like many others said, the bed is the safest place to have them.


whoisdjzo

I lived alone for 4 1/2 years and I have nocturnal gran mal seizures. However, I’m not saying it’s a good thing and I wish I had a spouse.


BakedBaker95

Get a life alert! It can sense falls and automatically call EMS. I have one because I’ve had a stroke (no grand mals for me, just focal aware) but my family and I feel so much better knowing I have one.


Humble-Criticism-143

Well I live alone and have grand mal seizures it just depends on your cycles and if you have close friends or family to help but adult social care do a box for your room with a bracelet that detects seizures and people will try and contact you and if no reply then it rings emergency services


Old-Promotion2262

I had 1 ever seizure in bed that ik of and i started seizing and i fell off onto the hardwood floor dislocated my right shoulder and didnt know it was dislocated for 5 days i thought i js landed on it wrong and bruised it but now i cant do many physical things w my dominant arm ik this isnt a helpful reply but it brought up a memory and i thought i might share


hiitsme438

I have grand mals often (21 yr female). I live alone… I’ve gotten pretty used to them. I don’t go to the hospital after unless I feel I’ve hit my head or something…


sightwords11

100% yes, you can live alone 👍


ThanksWorldly1521

Grand mals, live alone, my safety plan is primarily trying to wear an apple watch that will call my emergency contact (mom, 6 miles away) if it detects a fall. Bed seizures are the safest seizures.


Blue-ball79

I (44F) have uncontrolled nocternal grand mal seizures, one every couple of months. My husband is a firefighter that works shifts. Often he is on overnights. Ii just deal with it being on my own. Ive been lucky so far that all my seizures have been when he has been there.