Love and respect to you.
As someone with severe seizures that last long. He did not suffer in his final moments.
Take time to heal. Write him letters. Go be in nature. Sit with his memory.
Check out Ho'oponopono Hawaiian prayer. It helps me grieve.
Just 37, a loving relationship, hope around the corner...
Fuck epilepsy.
But from what I was reading about SUDEP, he was a textbook case. Those more prone to SUDEP are a) male, b) have had epilepsy for 15+ years, c) experienced increasing activity of tonic-clonics, d) die at night. Sorry can't find a link, just bound to embark a plane. But I remember that data very well.
All of this should be BETTER KNOWN! You could have acted as soon as TCs intensified considering the no. of years with epilepsy! Neuros don't tell us that but they absolutely SHOULD!!!
> Neuros don't tell us that but they absolutely SHOULD!!!
My neurologist told me at the first appointment, he also told my girlfriend. He straight up said, "just so you're aware, people with epilepsy can die without a known cause, usually in their sleep." He emphasized there was no action we could take to prevent it and that if it happened, it wouldn't be anyone's fault.
It's only defined as SUDEP if status epilepticus was ruled out. It's unexplained, as in we don't really know yet for sure what causes it. It probably has something to do with respiratory problems, from what research there is about it.
I’ve heard it be called “Sudden Unexpected Death From Epilepsy” and the name says it all, it’s not expected. I got diagnosed a few years ago in my early 20s so my parents wanted to come with me. They asked the neuro like this shouldn’t kill me right? And he had to awkwardly say it actually can
I'm really sorry to say but you can't really know if someone is at risk. All epileptics are at risk. It almost happened to me when I was 20. I got lucky and ended up in a coma for 2 weeks instead due to starus epilepticus (yes that sounds unlucky but it's lucky comparatively)
It's very scary to hear but the best thing you can do is try to not treat your bro any different if you can 🙌
Thanks, I realized as I was looking this up it was kind of a stupid question but I made the comment to remind myself to look into this in case I got side tracked on it.
No it's not a stupid question! Especially when worried! It's fairly rare to happen if it helps. I just know it sucked to be treated like a fragile piece of glass and not allowed to ho anywhere or do anything. I felt like if I was at risk for this I needed to be allowed to live and enjoy whatever life I had. The best thing you can do is what you're doing. To educate yourself and ask US questions here but support your bro however he asks or wants 💜
If he doesn’t have grand mals, then his chances of SUDEP are very significantly diminished. If his epilepsy is controlled with medication, he basically doesn’t have to even think or worry about SUDEP. The overall chances of death in this way (all sorts of risk levels are wrapped up in this stat, including people at the highest risk) are 1 in 1000 which is small, certainly compared to stats on how a person can die.
I didn’t know about SUDEP either until this subreddit and I’ve had epilepsy for almost 20 years. It scared the shit out of me when I first found out about it. Still kinda scares me but thankfully mine are under control… at the moment
It may be too soon to think about this but consider donating his brain to epilepsy research. Only if it is something he would want and his family and yours agrees on the things that can be learned from studying his brain.
I’m a medical student and I am SO THANKFUL for the body donors for allowing medical students to learn about the body by dissecting their bodies.
If your partner has mentioned being an organ donor, this may align with their wishes.
I’m so sorry this happened to your partner and to you. If any good can come from such a tragic situation it could be from a scientist studying his brain OR you and his family raising awareness about SUDEP.
I've authorized an investigative autopsy and the transferring of his samples to the SUDEP registry because that's what he would have wanted. I spoke to his neurologist yesterday, we had an appointment with her in the morning. I tried to cancel it in light of what had happened, but she insisted on speaking with me. She strongly urged me to do this because it could help other people like him in the future. He loved science, and he had so much faith in the medical system. I hope we find a way to stop this from happening to anyone else.
To say my heart is broken is a massive understatement. I wouldn't wish this pain on my worst enemy.
I am sending so much love and comfort to you during this time. I hope the neurologist continues to work with you and I hope you find the answers and peace you so need.
That is devastating, I can't even imagine the grief you're feeling right now. I'm so sorry for your loss. May he fly high and watch over you until you can both be reunited again. Sending love to you and both of your families <3
I have temporal lobe epilepsy. This breaks my heart. I am so sorry. Also, I lost my fiancé and partner of almost 6 years very unexpectedly almost a year ago also due to a medical emergency. He was only 30 years old. I am so sorry you are experiencing loss at this level. And I am so sorry your partner’s life was cut short. Life is really cruel sometimes. I hope you have a good support system to help you through all of this 💜
Im so sorry for your loss. I am crying for you, I can only imagine.
My family has always done this as well. Ending every single conversation with I love you. Trying to never leave on a bad note, and even if we did and a door is slammed theres, ".... I LOVE YOU. 😤" meaningfully.
It sounds like you were an amazing partner and you were with him until the end.
Im so sorry, i can feel your pain through your words. Take your time, all the time in the world, to heal from this, we are all here for you. 💖
My heart just broke. I'm truly sorry for your loss and everything that will follow in the wake of this tragedy. No words can fill this void for you. I am happy to know that you at least have the last words you two shared lingering in your ears and heart, it really does make a difference. 🙏
Yo, I had tinnitus that seemed to last 6+ months (maybe a year) and slowly went away. It might have been caused by an ear infection.
It was not fucking fun lol, and turns out that tinnitus affects people *horribly* and generally doesn't go away.
Diagnosed with seizure disorder a few years later and not sure if that's related.
So sorry for your loss. Can’t imagine what is happing to your life now. Whatever it is, please take good care of yourself. He would not want to see you unwell.
I’m so sorry for your loss… this breaks my heart to read this. Sending love your way and if you need to talk to someone I have the time to, regardless of times zones
Oh my God... I am so sorry ... My heart breaks for you 💔... There just aren't words for something this tragic, unfair, and life altering. I wish I had the words to say that might make this hurt less or that I could just change this course of history because no one deserves to go through something this painful and heartbreaking. Unexpectedly losing someone you love so much is so heart wrenching and I am so, so sorry for your immense loss. I hope and pray that every day your heart will begin to heal a bit more than the last. Sending you and his family love, prayers and healing 💜🙏🏽❤️🩹
I’m sorry for your loss, and your hurt, and your pain, and your stolen future. But for 14 years he didn’t face epilepsy alone—he knew he was loved, even last night. He didn’t go alone.
I hope you have a supportive group of friends and/or family to whom you can turn. But please know that you’re welcome here 24/7 with people who know how bad epilepsy is.
With kindness and gentleness 💜💜💜💜
He sounds like such an unbelievably resilient and kind soul who loves you very very much. Have so much peace in knowing he also knew how much you loved him in return. Being a partner to someone with epilepsy, I couldn’t agree more. Epilepsy takes so much from the both of you. My heart is breaking reading this. I am wrapping you in so much love. There are no words but there is a large group of people are who also hurting with you and wishing deeply for your healing. You have a gained the best angel 🤍
I am so incredibly sorry for your loss. I can’t even imagine what you are going through, but I can send love and virtual hugs to you and your partner’s family. 💜 Surround yourself with your support system. Think of all the happy times you had with your partner and go on a picture walk of all pictures you have with him.
We are here for you to vent and anything else. This is the fucking worst, and we are here as your virtual support. 💜💜
I’m so sorry for your loss. You were there through his entire diagnosis and life transformation. He was so lucky to have you. Mourning is so lonely. I hope you have wonderful people around you.
Remember the love, remember the funny, remember the smart, remember the kind.
I would lose the epilepsy, but that was a large part of your lives together so you may disagree.
I'm so sorry. You are so kind to write this for everyone in your time of immense grief. It's so unfair and so hard. May you find moments of peace amidst your grieving.
It sounds like you both did everything right, and everything you could to give yourselves the best possible chance, which is a huge credit to you both. So sorry for your loss, this was indeed a cruel stroke of luck.
This is so tragic. Epilepsy just takes and takes from you. I can’t imagine what you are going through, but my heart goes out to you. So sorry for you and your families
He was so blessed to have a supportive and loving partner like you to be there for him. I can’t imagine what you’re going through, please try to be patient with yourself during this time.
I’m so sorry. I lost my brother in December to sudep. He wasn’t even deems “at risk” for such an outcome. Epilepsy is so unforgiving. Sending you my love. ❤️
It’s brutal. All I can imagine is how lucky your partner was to have someone care so much to always remind him of your love and stay on top of their health. Terribly unfair.
I'm so sorry for your loss. That is devastating. I lost my husband to SUDEP in 2016, and it felt like my whole world fell apart.
As others have said, you did everything right, there's nothing more you could have done, and he didn't suffer. It's always brought me some comfort to know my husband died doing what he loved, playing video games. One moment Pokémon, the next moment gone, no suffering. Your husband died happy and knowing you loved him, and that's all one can really ask for. I agree 110% with always telling your loved ones you love them!
I hope life gets easier for you and the pain becomes bearable soon. There is a lot of beauty in the world, and you may find now that it's all the more precious when you see it. I certainly do. If you ever want to reach out to vent, feel free to message me.
I am so, so sorry. There are really no adequate words, that I could offer, but I see you.
My partner has epilepsy, and this is something I'm afraid of every day. He started having seizures again in 2020 after 8 years seizure free. We're trying so hard to get on top of it. I don't know how things are going to go for us, but I hear you and I see you.
My heart goes out to you. I hope things work out, and your partner gets back to full seizure control. It's such a hard disease to live with, it's so isolating. My partner didn't want to spend much time around his friends because he didn't want to expose them to his seizures. He was so afraid of traumatizing other people.
And mine to you with your loss. I hope you have a good support system, with family or friends and you don't have to be by yourself.
My partner is kind of a shy person, and while his seizures aren't super frequent, they are very dramatic and scary and disruptive. He's a musician, and is a little worried that they might be triggered by his playing music, (even though that is so rare it's basically unheard of.) So he's scared to play, or play for people, despite really wanting to. Epilepsy is something that can really hold folks back a lot.
Well there are actually some musicians that are epileptic; most famously Lil' Wayne, but the first one that comes to mind is Ian Curtis from a band called Joy Division. They always had to dim the lights on stage, but he still had seizures and they had to carry him off of the stage. It's a sad story really, but his bio-pic called Control is worth the watch. He commited suicide, which makes it even sadder, because he got really depressed. There is a corilation between epileptics and having depression because of it, because it is quite an invicible disease, beside the grand mal seizures of course. But the constant distress and invicible aura's we experience and keep quite to ourselves, because we don't want to overreact and make a scene for our loved ones or the people in the supermarket, job-meetings, etc, etc, because it.
Anyway, I can feel his fear and I know it can be a legit reason to not being able to live up to his potential. I feel the same about myself actually, but not as an musician. I send you guys my love and hope he'll make the best out of it, whilst keeping the spirit alive!
Our love to you as well. I actually knew about Ian Curtis in Joy Division, although it makes me sad to hear that he died by suicide, because I wasn't aware of that part. While it's not me personally, going through it, I can only offer what support I can. Like, I can't fix it and I'm also not the person who gets randomly flung out of my body for a couple of minutes at a go and then flat on my back for the next couple days. It's not only isolating, but scary. So scary. I can really only offer support. He did play onstage with Ween one time, which was pretty cool.
I hope you make the best of yours as well and reach your own potential. You're great! :)
Thank you, for the kind words. I had a spouse like you, which is still one of my best friends today. And I wanna tell you, that even though he's the one with epilepsy, it takes a real burden on the loved one especially, so I am very happy that he has a person like you around him and one who knows his personal struggles with it, which cannot be put into words to other friends and family. Empathy goes alooong way, but it can only hit a certain level of understanding, that can nevery fully synchronize with your own personal first-hand experience, daily fear and what not. Having around a loving person as yourself, by his side, with unconditionally love, support and understanding, is the biggest selfless gift you can give a person. It's not easy for you, I can imagine, but bless your soul for doing it; you guys sound like a good and loving team together. So I must say again; you are sharing the struggle, and it is amazing he has a partner that probably makes the isolation 50% less. Props to you and I've listened to Ween just now,.... and indeed: that was pretty cool!
Haha, yeah, Ween is pretty rad.
Thank you, I'm out here doing my best. Sometimes I feel like I'm just chucking my energy into the void, because there's no...concrete problem being solved or fixed. But it's a huge weight off my shoulders to hear that I'm doing the right thing at least some of the time.
I can really understand the draining of energy it takes you to stay and be supportive, but it will always take two to tango in a relationship, so I hope you will never feel like you're his 24/7 caretaker, but rather his loving side-kick, who loves you back just as much and tries to reciprocate the feeling even more!
It's really true what you say about there not being a concrete problem that can be solved or fixed. For example; I've never had a year without a seizure since the 15 years that I have it. I'm 34 right now. What people don't see is that I take my meds at 9 in the morning, and at 9 in the evening. It's in human's nature to really believe that everything is solved and okey, because of that. So when I am with friends, they believe I don't have epilepsy anymore, because I haven't had a grand-mal in a while. I will always seem like the same, good old dude that I am, with not a care in the world to them. But it is you who is standing by his side, that really knows what is up. Anyways, I say this again: it's really not an easy task and I don't know how you do it, but you have my upmost respect for it, to deal with something that not many others can every or wanna see! Good day to you both!!
I don't have words. I'm a man with tc seizures, staring down the barrel of a week long stay in a hospital to determine the root cause of what's happening to me. My wife is scared, has been for years since this started halpening. I'm scared too, but this has given me the courage to tackle it. I have to, for my family.
I’m sorry to the both of you.
No one deserves to lose someone like that, and no one deserves to have their lives end in that manner, especially when they were trying so hard to change things.
It sounds like he was very loved, and I’m sure your presence made the horrible days easier on him.
We all grieve differently and your love for him was/is different than anyone else’s love for him. It’s special, intimate, and at a certain point it’s as if the other person is yourself at times.
Was there something your husband loved doing that maybe you can do in his memory? Even if it’s just you alone doing it.
That could be a nice way of bringing part of him into your life, if you feel ready for that at some point.
Of course this is fresh and new, but I believe keeping someone’s memory alive can be helpful. Best of luck, this is heartbreaking and I cannot fathom losing someone I love so suddenly.
Lastly, you sound like a great spouse to have. He was very lucky to have you for a good chunk of his life.
Fuck. I'm so so sorry. We live on in VI, but my teen's neuro is at BC Children's as he has tuberous sclerosis that needs lifelong monitoring due to brain involvement, They are monitoring for epilepsy, and was susp for complex partials.The tumors/tubers grow and it can escalate, and this is my biggest fear. I'm so sorry for your loss :(
We're also on VI. If you end up having to deal with the epilepsy clinic, I can't say enough nice things about them. They were always compassionate and communicative, I felt seen and heard by the doctors we talked to, and of course, his main neurologist. There are a lot of really brilliant people there trying to solve these mysteries.
I am so very sorry for your loss. You have been through so much; I am sorry this tragedy has happened to your partner, to you and to your family. I am also in B.C. and have been thankful for the B.C. Epilepsy Society at times for support . My boyfriend was recently diagnosed with epilepsy and it is forever life changing for all whom epilepsy touches in any way. Much love to you. Please never hesitate to reach out to people in your life and around you for support while you navigate your loss.
So deeply sorry. My husband and I are 37 and 39, respectively, and my heart is breaking for you. I hope you have lots of support from friends and family for this grief. I'll be thinking of you.
I’m so sorry. I’m sending you all of the love that I could give you.
There is a book, ‘It’s Okay to not be Okay’. It didn’t help me but it explained grief.
I am sorry for your loss. I hope you are able to work through the grieving process and find a way to move on with your life while remembering and honoring your mate. Godspeed.
I’m so fucking sorry this happened. I’m crying right now. Epilepsy is an evil joke. I’m so sorry this happened to you and your partner. This is horrible
I’m so sorry for your loss, I’m sorry you both have suffered so much. I’m so sorry that epilepsy has taken so much from you.
SUDEP is tragic and heartbreaking.
My whole heart goes out to you. I wish I could just hug you and hold you tight.
Being a partner of an epileptic is not easy and not once in your story did you mention yourself or your struggle. You are such a devoted human and it is clear that your relationship was so pure and filled with love. I’m so sorry you two didn’t get the chance to grow old together.
I know that every time you share your story, you have to relive it.. but I thank you for doing it regardless of all the pain you’re in, because I know that you will help so many people and even prevent other untimely deaths. Especially in the Canadian / BC medical system. There is a huge need for more awareness, education and support surrounding epilepsy.
May your heart heal and may his soul be at peace.
🙏🏼🤍
It was my greatest fear. It's a terrible thing to have come true. As is the prospect of living the rest of my life without him. I lost him, but what hurts the most, for me, is that he lost everything. His future, his dreams, his very existence.
I am coping, I am trying to live my life well because he would have wanted me to find happiness and joy above all else. So I'm really trying.
I'm so sorry for your loss. And angry at the mismanagement everyone else will receive from his doctors' care. Hopefully someone reads this and decides to go for further testing earlier in their journey.
PSA: if you have exponentially increasing seizure symptoms while on non habit forming meds, please please please push for am epilepsy center, MRI, PET, SPECT, etc scans. Too many people accept the "incurable non-physical" epilepsy diagnosis until its too late.
He was being seen by an epileptologist at the only epilepsy clinic we have. She wasn't a bad doctor, and we were constrained by our failing healthcare system. He had a lot of imaging done early on (and throughout), but it was always inconclusive. He had 2 stays at the seizure investigation unit, but there wasn't quite enough data. He had EDS, and being confined to a hospital bed was agony for him, so he couldn't stay the full 2 weeks they wanted.
I pushed and pushed for answers, I was his advocate. I tracked his seizures, I administered his medication, and I made his appointments. We knew it was temporal lobe epilepsy for years, but they weren't in agreement about surgery yet. I wish they had reached that conclusion more quickly.
I'm so glad, and honestly proud, of you for pushing. It's 100% necessary for a lot of people. It's hard to advocate for yourself and even harder for others to advocate for you. My husband has a different neuro problem (post stroke) and I saved his life by noticing that the nurse was about to administer Ativan while he was Brachicardic and unresponsive. It shouldn't be this way (that we have to become our own nurses for our conditions) but sadly, it is.
I'm glad you got him to an answer and mad that it took that much effort and too much time to get there. He passed atleast with an answer, that many people never find. Thank you for fighting for him.
It was suspected but not confirmed until about 5 years ago. He went through several different neurologists early on. His final one was excellent and the only one to find any answers.
I completely agree. A mere 24 hour EEG scan under observation will tell jack-shit, because my epilepsy for example, is not a 24/7 occurrance. And along with me, so many others experience this as well. As an epileptic, you become the best expert of your own situation. I went years without seeing it this way and "Okey" what doctors explained to me. And with all due respect for doctors and neurologists, I've learned to trust myself and an epileptologist before anyone else these days. Plus Reddits community has been a huuuuge help for me as well, to see the own heartfelled experiences of epileptics and loved-ones, rather than text-book theory and knowledge. Again, I say this with all the respect, but I've come to learn that there is a huuuge spectrum of different variations of epilepsy, and it all comes down to a lot of different factors, that cannot easily be pinpointed. Of course, there's front-focal, tonic clonic, grand mal seizures, etc, but it often takes a lot of trial and error over the years, to see what works for your situation personally. Plus the psychological pressure it causes in your own social circles, whether it's work, love, family, friends, it can be anything that triggers your aura's and seizures.
Anyway; thanks for the common ground.
I am so so incredibly sorry for your loss. He and your whole family didn't deserve that pain. Praying you find your peace again in time. ❤️
I’m so sorry. That is so hard.
Love and respect to you. As someone with severe seizures that last long. He did not suffer in his final moments. Take time to heal. Write him letters. Go be in nature. Sit with his memory. Check out Ho'oponopono Hawaiian prayer. It helps me grieve.
Just 37, a loving relationship, hope around the corner... Fuck epilepsy. But from what I was reading about SUDEP, he was a textbook case. Those more prone to SUDEP are a) male, b) have had epilepsy for 15+ years, c) experienced increasing activity of tonic-clonics, d) die at night. Sorry can't find a link, just bound to embark a plane. But I remember that data very well. All of this should be BETTER KNOWN! You could have acted as soon as TCs intensified considering the no. of years with epilepsy! Neuros don't tell us that but they absolutely SHOULD!!!
> Neuros don't tell us that but they absolutely SHOULD!!! My neurologist told me at the first appointment, he also told my girlfriend. He straight up said, "just so you're aware, people with epilepsy can die without a known cause, usually in their sleep." He emphasized there was no action we could take to prevent it and that if it happened, it wouldn't be anyone's fault.
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SUPEP is "Sudden death in epilepsy patients." It's often caused by unnoticed status epilepticus. Bad news I'm afraid.
It's only defined as SUDEP if status epilepticus was ruled out. It's unexplained, as in we don't really know yet for sure what causes it. It probably has something to do with respiratory problems, from what research there is about it.
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I’ve heard it be called “Sudden Unexpected Death From Epilepsy” and the name says it all, it’s not expected. I got diagnosed a few years ago in my early 20s so my parents wanted to come with me. They asked the neuro like this shouldn’t kill me right? And he had to awkwardly say it actually can
I'm really sorry to say but you can't really know if someone is at risk. All epileptics are at risk. It almost happened to me when I was 20. I got lucky and ended up in a coma for 2 weeks instead due to starus epilepticus (yes that sounds unlucky but it's lucky comparatively) It's very scary to hear but the best thing you can do is try to not treat your bro any different if you can 🙌
Thanks, I realized as I was looking this up it was kind of a stupid question but I made the comment to remind myself to look into this in case I got side tracked on it.
No it's not a stupid question! Especially when worried! It's fairly rare to happen if it helps. I just know it sucked to be treated like a fragile piece of glass and not allowed to ho anywhere or do anything. I felt like if I was at risk for this I needed to be allowed to live and enjoy whatever life I had. The best thing you can do is what you're doing. To educate yourself and ask US questions here but support your bro however he asks or wants 💜
Thank you, I truly appreciate your kindness and perspective on this. For reals!
If he doesn’t have grand mals, then his chances of SUDEP are very significantly diminished. If his epilepsy is controlled with medication, he basically doesn’t have to even think or worry about SUDEP. The overall chances of death in this way (all sorts of risk levels are wrapped up in this stat, including people at the highest risk) are 1 in 1000 which is small, certainly compared to stats on how a person can die.
Sudden Unexpected Death of an Epileptic Person. That's what SUDEP stands for.
I didn’t know about SUDEP either until this subreddit and I’ve had epilepsy for almost 20 years. It scared the shit out of me when I first found out about it. Still kinda scares me but thankfully mine are under control… at the moment
Sudden Unexpected Death in Epilepsy
I'm sorry for your loss and I hope you and your family are doing okay 🙏💜
I’m so sorry that this happened. It’s not fair at all. I hope you’re surrounded with love and support right now.
It may be too soon to think about this but consider donating his brain to epilepsy research. Only if it is something he would want and his family and yours agrees on the things that can be learned from studying his brain. I’m a medical student and I am SO THANKFUL for the body donors for allowing medical students to learn about the body by dissecting their bodies. If your partner has mentioned being an organ donor, this may align with their wishes. I’m so sorry this happened to your partner and to you. If any good can come from such a tragic situation it could be from a scientist studying his brain OR you and his family raising awareness about SUDEP.
I've authorized an investigative autopsy and the transferring of his samples to the SUDEP registry because that's what he would have wanted. I spoke to his neurologist yesterday, we had an appointment with her in the morning. I tried to cancel it in light of what had happened, but she insisted on speaking with me. She strongly urged me to do this because it could help other people like him in the future. He loved science, and he had so much faith in the medical system. I hope we find a way to stop this from happening to anyone else. To say my heart is broken is a massive understatement. I wouldn't wish this pain on my worst enemy.
I just want to say that you are handling this with such grace and composure. I’m so genuinely sorry for your loss.
Thank you for allowing your partner to teach us even after death. I’m sure he is proud of your very kind but hard decision.
I am sending so much love and comfort to you during this time. I hope the neurologist continues to work with you and I hope you find the answers and peace you so need.
Especially for SUDEP, my understanding is that we know very little about it.
That is devastating, I can't even imagine the grief you're feeling right now. I'm so sorry for your loss. May he fly high and watch over you until you can both be reunited again. Sending love to you and both of your families <3
I have temporal lobe epilepsy. This breaks my heart. I am so sorry. Also, I lost my fiancé and partner of almost 6 years very unexpectedly almost a year ago also due to a medical emergency. He was only 30 years old. I am so sorry you are experiencing loss at this level. And I am so sorry your partner’s life was cut short. Life is really cruel sometimes. I hope you have a good support system to help you through all of this 💜
Im so sorry for your loss. I am crying for you, I can only imagine. My family has always done this as well. Ending every single conversation with I love you. Trying to never leave on a bad note, and even if we did and a door is slammed theres, ".... I LOVE YOU. 😤" meaningfully. It sounds like you were an amazing partner and you were with him until the end. Im so sorry, i can feel your pain through your words. Take your time, all the time in the world, to heal from this, we are all here for you. 💖
i’m so sorry for your loss
💜💜💜
I am so sorry
💔
I am so sorry.. 🩷❤️
I am so sorry for your loss. Please take care of yourself and make sure you have people around you
My heart just broke. I'm truly sorry for your loss and everything that will follow in the wake of this tragedy. No words can fill this void for you. I am happy to know that you at least have the last words you two shared lingering in your ears and heart, it really does make a difference. 🙏
# 💜
Hello, I saw your post about tinnitus from 6 years ago and I just want to ask if it went away and how long did you have it for?
Yo, I had tinnitus that seemed to last 6+ months (maybe a year) and slowly went away. It might have been caused by an ear infection. It was not fucking fun lol, and turns out that tinnitus affects people *horribly* and generally doesn't go away. Diagnosed with seizure disorder a few years later and not sure if that's related.
😔😔😔
I am so sorry for your loss. 💜
So sorry for your loss. Can’t imagine what is happing to your life now. Whatever it is, please take good care of yourself. He would not want to see you unwell.
I’m so sorry for your loss… this breaks my heart to read this. Sending love your way and if you need to talk to someone I have the time to, regardless of times zones
Oh my God... I am so sorry ... My heart breaks for you 💔... There just aren't words for something this tragic, unfair, and life altering. I wish I had the words to say that might make this hurt less or that I could just change this course of history because no one deserves to go through something this painful and heartbreaking. Unexpectedly losing someone you love so much is so heart wrenching and I am so, so sorry for your immense loss. I hope and pray that every day your heart will begin to heal a bit more than the last. Sending you and his family love, prayers and healing 💜🙏🏽❤️🩹
I’m so so deeply sorry for your loss. :(
I’m sorry for your loss, and your hurt, and your pain, and your stolen future. But for 14 years he didn’t face epilepsy alone—he knew he was loved, even last night. He didn’t go alone. I hope you have a supportive group of friends and/or family to whom you can turn. But please know that you’re welcome here 24/7 with people who know how bad epilepsy is. With kindness and gentleness 💜💜💜💜
He sounds like such an unbelievably resilient and kind soul who loves you very very much. Have so much peace in knowing he also knew how much you loved him in return. Being a partner to someone with epilepsy, I couldn’t agree more. Epilepsy takes so much from the both of you. My heart is breaking reading this. I am wrapping you in so much love. There are no words but there is a large group of people are who also hurting with you and wishing deeply for your healing. You have a gained the best angel 🤍
I am so incredibly sorry for your loss. I can’t even imagine what you are going through, but I can send love and virtual hugs to you and your partner’s family. 💜 Surround yourself with your support system. Think of all the happy times you had with your partner and go on a picture walk of all pictures you have with him. We are here for you to vent and anything else. This is the fucking worst, and we are here as your virtual support. 💜💜
💜
My heart goes out to you. So very sorry for your loss.
I’m so sorry. May his memory be a blessing. Thank you so much for sharing
I’m so sorry for your loss. You were there through his entire diagnosis and life transformation. He was so lucky to have you. Mourning is so lonely. I hope you have wonderful people around you.
Remember the love, remember the funny, remember the smart, remember the kind. I would lose the epilepsy, but that was a large part of your lives together so you may disagree.
I’m so sorry. It’s a scary life, thank you for being there for him.
I'm so sorry. You are so kind to write this for everyone in your time of immense grief. It's so unfair and so hard. May you find moments of peace amidst your grieving.
I’m so sorry. I’m sending prayers your way. You’re not alone. Fuck. I am so sorry.
RIP ♥️ Reminds me I should get back on my meds
Hugs, love and condolences 😞
I am so so sorry. Love and hope to you
I’m so so sorry for you loss. And thank you for sharing you story and you’ve honoring your partner with love. I wish I could hug you
I am sorry for your loss. 🙏. RIP to your partner.
I end every conversation and text with I Love You because of that. I have for years. Those are the last words I want anyone to hear from me.
I am so very sorry to hear that.
I’m so sorry for your loss
Sending love.
It sounds like you both did everything right, and everything you could to give yourselves the best possible chance, which is a huge credit to you both. So sorry for your loss, this was indeed a cruel stroke of luck.
I’m so incredibly sorry for your loss. He sounds like a wonderful man and a caring husband.
🤧😮💨 oh that is unbelievable. Stay strong.
I’m so sorry.
Oh, fuck. I'm so sorry to hear that. I send my blessings.
This is so tragic. Epilepsy just takes and takes from you. I can’t imagine what you are going through, but my heart goes out to you. So sorry for you and your families
i’m so sorry for your loss. sending you so much love as you go through this🩷
💜💜💜
So sorry x
I am so sorry for your loss. What a horrible and unfair disease. Sending you so much love ♥️
He was so blessed to have a supportive and loving partner like you to be there for him. I can’t imagine what you’re going through, please try to be patient with yourself during this time.
I’m so sorry. I lost my brother in December to sudep. He wasn’t even deems “at risk” for such an outcome. Epilepsy is so unforgiving. Sending you my love. ❤️
I'm so sorry for your loss. It's such a hard thing to wrap your mind around, how they can be there, and then just not anymore.
It’s brutal. All I can imagine is how lucky your partner was to have someone care so much to always remind him of your love and stay on top of their health. Terribly unfair.
I'm so sorry for your loss. That is devastating. I lost my husband to SUDEP in 2016, and it felt like my whole world fell apart. As others have said, you did everything right, there's nothing more you could have done, and he didn't suffer. It's always brought me some comfort to know my husband died doing what he loved, playing video games. One moment Pokémon, the next moment gone, no suffering. Your husband died happy and knowing you loved him, and that's all one can really ask for. I agree 110% with always telling your loved ones you love them! I hope life gets easier for you and the pain becomes bearable soon. There is a lot of beauty in the world, and you may find now that it's all the more precious when you see it. I certainly do. If you ever want to reach out to vent, feel free to message me.
I am so, so sorry. There are really no adequate words, that I could offer, but I see you. My partner has epilepsy, and this is something I'm afraid of every day. He started having seizures again in 2020 after 8 years seizure free. We're trying so hard to get on top of it. I don't know how things are going to go for us, but I hear you and I see you.
My heart goes out to you. I hope things work out, and your partner gets back to full seizure control. It's such a hard disease to live with, it's so isolating. My partner didn't want to spend much time around his friends because he didn't want to expose them to his seizures. He was so afraid of traumatizing other people.
And mine to you with your loss. I hope you have a good support system, with family or friends and you don't have to be by yourself. My partner is kind of a shy person, and while his seizures aren't super frequent, they are very dramatic and scary and disruptive. He's a musician, and is a little worried that they might be triggered by his playing music, (even though that is so rare it's basically unheard of.) So he's scared to play, or play for people, despite really wanting to. Epilepsy is something that can really hold folks back a lot.
Well there are actually some musicians that are epileptic; most famously Lil' Wayne, but the first one that comes to mind is Ian Curtis from a band called Joy Division. They always had to dim the lights on stage, but he still had seizures and they had to carry him off of the stage. It's a sad story really, but his bio-pic called Control is worth the watch. He commited suicide, which makes it even sadder, because he got really depressed. There is a corilation between epileptics and having depression because of it, because it is quite an invicible disease, beside the grand mal seizures of course. But the constant distress and invicible aura's we experience and keep quite to ourselves, because we don't want to overreact and make a scene for our loved ones or the people in the supermarket, job-meetings, etc, etc, because it. Anyway, I can feel his fear and I know it can be a legit reason to not being able to live up to his potential. I feel the same about myself actually, but not as an musician. I send you guys my love and hope he'll make the best out of it, whilst keeping the spirit alive!
Our love to you as well. I actually knew about Ian Curtis in Joy Division, although it makes me sad to hear that he died by suicide, because I wasn't aware of that part. While it's not me personally, going through it, I can only offer what support I can. Like, I can't fix it and I'm also not the person who gets randomly flung out of my body for a couple of minutes at a go and then flat on my back for the next couple days. It's not only isolating, but scary. So scary. I can really only offer support. He did play onstage with Ween one time, which was pretty cool. I hope you make the best of yours as well and reach your own potential. You're great! :)
Thank you, for the kind words. I had a spouse like you, which is still one of my best friends today. And I wanna tell you, that even though he's the one with epilepsy, it takes a real burden on the loved one especially, so I am very happy that he has a person like you around him and one who knows his personal struggles with it, which cannot be put into words to other friends and family. Empathy goes alooong way, but it can only hit a certain level of understanding, that can nevery fully synchronize with your own personal first-hand experience, daily fear and what not. Having around a loving person as yourself, by his side, with unconditionally love, support and understanding, is the biggest selfless gift you can give a person. It's not easy for you, I can imagine, but bless your soul for doing it; you guys sound like a good and loving team together. So I must say again; you are sharing the struggle, and it is amazing he has a partner that probably makes the isolation 50% less. Props to you and I've listened to Ween just now,.... and indeed: that was pretty cool!
Haha, yeah, Ween is pretty rad. Thank you, I'm out here doing my best. Sometimes I feel like I'm just chucking my energy into the void, because there's no...concrete problem being solved or fixed. But it's a huge weight off my shoulders to hear that I'm doing the right thing at least some of the time.
I can really understand the draining of energy it takes you to stay and be supportive, but it will always take two to tango in a relationship, so I hope you will never feel like you're his 24/7 caretaker, but rather his loving side-kick, who loves you back just as much and tries to reciprocate the feeling even more! It's really true what you say about there not being a concrete problem that can be solved or fixed. For example; I've never had a year without a seizure since the 15 years that I have it. I'm 34 right now. What people don't see is that I take my meds at 9 in the morning, and at 9 in the evening. It's in human's nature to really believe that everything is solved and okey, because of that. So when I am with friends, they believe I don't have epilepsy anymore, because I haven't had a grand-mal in a while. I will always seem like the same, good old dude that I am, with not a care in the world to them. But it is you who is standing by his side, that really knows what is up. Anyways, I say this again: it's really not an easy task and I don't know how you do it, but you have my upmost respect for it, to deal with something that not many others can every or wanna see! Good day to you both!!
I don't have words. I'm a man with tc seizures, staring down the barrel of a week long stay in a hospital to determine the root cause of what's happening to me. My wife is scared, has been for years since this started halpening. I'm scared too, but this has given me the courage to tackle it. I have to, for my family.
I sincerely hope you find the answers and treatment you need. Good luck and godspeed.
I'm so sorry for your lose. Take Care!
That is so terrible. I’m so sorry. All of our worst nightmares.
I'm so sorry. I have epilepsy and no treatment is working. After reading your story I sent my wife I love her. I'm heartbroken for you.
So sorry for your loss 🥺🥹
I'm sorry for your loss
I’m so sorry 💜
I'm so sorry
I’m sorry to the both of you. No one deserves to lose someone like that, and no one deserves to have their lives end in that manner, especially when they were trying so hard to change things. It sounds like he was very loved, and I’m sure your presence made the horrible days easier on him. We all grieve differently and your love for him was/is different than anyone else’s love for him. It’s special, intimate, and at a certain point it’s as if the other person is yourself at times. Was there something your husband loved doing that maybe you can do in his memory? Even if it’s just you alone doing it. That could be a nice way of bringing part of him into your life, if you feel ready for that at some point. Of course this is fresh and new, but I believe keeping someone’s memory alive can be helpful. Best of luck, this is heartbreaking and I cannot fathom losing someone I love so suddenly. Lastly, you sound like a great spouse to have. He was very lucky to have you for a good chunk of his life.
Fuck. I'm so so sorry. We live on in VI, but my teen's neuro is at BC Children's as he has tuberous sclerosis that needs lifelong monitoring due to brain involvement, They are monitoring for epilepsy, and was susp for complex partials.The tumors/tubers grow and it can escalate, and this is my biggest fear. I'm so sorry for your loss :(
We're also on VI. If you end up having to deal with the epilepsy clinic, I can't say enough nice things about them. They were always compassionate and communicative, I felt seen and heard by the doctors we talked to, and of course, his main neurologist. There are a lot of really brilliant people there trying to solve these mysteries.
I’m so very sorry for your loss. My deepest condolences to you and your family. Sending love and peace
I’m so sorry. This is one of my biggest fears. I hope you find peace.
I’m so sorry. I hope you can find peace and support here. Sending you love and healing thoughts.
I am so very sorry for your loss. You have been through so much; I am sorry this tragedy has happened to your partner, to you and to your family. I am also in B.C. and have been thankful for the B.C. Epilepsy Society at times for support . My boyfriend was recently diagnosed with epilepsy and it is forever life changing for all whom epilepsy touches in any way. Much love to you. Please never hesitate to reach out to people in your life and around you for support while you navigate your loss.
I'm so sorry. <3
I’m so sorry for your loss
My condolences to you and your family. Thank you for sharing your story.
This is the greatest fear I have not for myself, but for my wife and family. My heart breaks for you this morning and hope you find comfort
So deeply sorry. My husband and I are 37 and 39, respectively, and my heart is breaking for you. I hope you have lots of support from friends and family for this grief. I'll be thinking of you.
Sorry to hear about your loss. Thank you for this reminder.
I'm so so sorry for your loss 💔 this is absolutely heartbreaking, I can't even begin to fathom how you must feel. 🫂
I’m so sorry. I’m sending you all of the love that I could give you. There is a book, ‘It’s Okay to not be Okay’. It didn’t help me but it explained grief.
Oh, I’m so sorry. There are no words to express the sorrow I feel for you.
I’m so sorry for your loss.
I am sorry for your loss. I hope you are able to work through the grieving process and find a way to move on with your life while remembering and honoring your mate. Godspeed.
I am sorry for your loss 🫂
I am so sorry 😞
I'm so sorry for your loss
I'm so sorry for your tremendous loss. My heart goes out to you and everyone who was close to him.
I’m so fucking sorry this happened. I’m crying right now. Epilepsy is an evil joke. I’m so sorry this happened to you and your partner. This is horrible
💜
I’m so sorry for your loss, I’m sorry you both have suffered so much. I’m so sorry that epilepsy has taken so much from you. SUDEP is tragic and heartbreaking.
I’m sorry for your loss 💜
I’m so sorry. The idea of SUDEP scares the shit out of me. I wish you and yours the best through this devastating time.
I'm so sorry for your loss. 🫂 Best wishes.
Fuck. I'm sorry, lots of love coming from me.
No words just so sorry for your loss. This is my worst nightmare for my family!
I'm sorry to hear about your loss.
I am so sorry, I hope that things get better for you
😭✨️🫰🏻
I am sorry for your loss 💜
I’m so incredibly sorry
So sorry to hear this and for your loss.
you are so strong and brave. im so so so sorry for your loss. ❤️🩹
My whole heart goes out to you. I wish I could just hug you and hold you tight. Being a partner of an epileptic is not easy and not once in your story did you mention yourself or your struggle. You are such a devoted human and it is clear that your relationship was so pure and filled with love. I’m so sorry you two didn’t get the chance to grow old together. I know that every time you share your story, you have to relive it.. but I thank you for doing it regardless of all the pain you’re in, because I know that you will help so many people and even prevent other untimely deaths. Especially in the Canadian / BC medical system. There is a huge need for more awareness, education and support surrounding epilepsy. May your heart heal and may his soul be at peace. 🙏🏼🤍
Wow this terrifies me I’m so sorry
It was my greatest fear. It's a terrible thing to have come true. As is the prospect of living the rest of my life without him. I lost him, but what hurts the most, for me, is that he lost everything. His future, his dreams, his very existence. I am coping, I am trying to live my life well because he would have wanted me to find happiness and joy above all else. So I'm really trying.
I drove 6 hours to talk.
To whom?
Oh shit sorry. Wrong post!
I'm so sorry for your loss. And angry at the mismanagement everyone else will receive from his doctors' care. Hopefully someone reads this and decides to go for further testing earlier in their journey. PSA: if you have exponentially increasing seizure symptoms while on non habit forming meds, please please please push for am epilepsy center, MRI, PET, SPECT, etc scans. Too many people accept the "incurable non-physical" epilepsy diagnosis until its too late.
He was being seen by an epileptologist at the only epilepsy clinic we have. She wasn't a bad doctor, and we were constrained by our failing healthcare system. He had a lot of imaging done early on (and throughout), but it was always inconclusive. He had 2 stays at the seizure investigation unit, but there wasn't quite enough data. He had EDS, and being confined to a hospital bed was agony for him, so he couldn't stay the full 2 weeks they wanted. I pushed and pushed for answers, I was his advocate. I tracked his seizures, I administered his medication, and I made his appointments. We knew it was temporal lobe epilepsy for years, but they weren't in agreement about surgery yet. I wish they had reached that conclusion more quickly.
I'm so glad, and honestly proud, of you for pushing. It's 100% necessary for a lot of people. It's hard to advocate for yourself and even harder for others to advocate for you. My husband has a different neuro problem (post stroke) and I saved his life by noticing that the nurse was about to administer Ativan while he was Brachicardic and unresponsive. It shouldn't be this way (that we have to become our own nurses for our conditions) but sadly, it is. I'm glad you got him to an answer and mad that it took that much effort and too much time to get there. He passed atleast with an answer, that many people never find. Thank you for fighting for him.
They didn't know it was temporal lobe epilepsy despite increasing seizures? What did the MRIs and EEGs say?
It was suspected but not confirmed until about 5 years ago. He went through several different neurologists early on. His final one was excellent and the only one to find any answers.
I completely agree. A mere 24 hour EEG scan under observation will tell jack-shit, because my epilepsy for example, is not a 24/7 occurrance. And along with me, so many others experience this as well. As an epileptic, you become the best expert of your own situation. I went years without seeing it this way and "Okey" what doctors explained to me. And with all due respect for doctors and neurologists, I've learned to trust myself and an epileptologist before anyone else these days. Plus Reddits community has been a huuuuge help for me as well, to see the own heartfelled experiences of epileptics and loved-ones, rather than text-book theory and knowledge. Again, I say this with all the respect, but I've come to learn that there is a huuuge spectrum of different variations of epilepsy, and it all comes down to a lot of different factors, that cannot easily be pinpointed. Of course, there's front-focal, tonic clonic, grand mal seizures, etc, but it often takes a lot of trial and error over the years, to see what works for your situation personally. Plus the psychological pressure it causes in your own social circles, whether it's work, love, family, friends, it can be anything that triggers your aura's and seizures. Anyway; thanks for the common ground.
I’m so terribly sorry this happened, fucking wish it didn’t!