Venting Epilepsy

[lesserbohemian]

Hi. I have struggled with depression for as long as I can remember. I got really good at resisting it. When I was twenty years old, I was diagnosed with epilepsy and now I don't see the point. My seizures are not controlled and given the different treatments tried they possibly never will be. Despite the heavy medication and narrowing my life because of the disease, I still have generalised seizures. Waking up with injuries and blood in my mouth on the floor and realising I could've died and no one would care much; weirdly, it just makes me want to die more. This happens in clusters every month or so. My housemates are personally offended by my epilepsy. My friends are tired of it. My family has either cut me off because they think it's gross, or think it can be solved by some bizarre quick fix and so I should stop wallowing. The NHS is shit, no surprises.

I don't want my illness to mean I can't live because these things aren't due to my illness, they are fixable. But I can't fix them. I also can't live knowing they can't be fixed.

So I'm fucked.

 

[PoisonedJuliet]

Welcome to the forum. I am so sorry you have to endure this pain daily. I'm not sure if my words could be any comfort to you but I'm always here and so are many others if you would like to talk. Sometimes talking is a medicine that helps. I'm sorry people have alienated you just for having epilepsy. Please feel free to talk and the people here won't abandon you. We're a community that sticks together

 

[GoodPersonEffed]

Okay whoa. Your housemates are personally offended by it? Your friends are tired of it. Just, wtf??? If you limped, would they be offended and tired of it? This isn't something you can just control, that's the point of epilepsy, a temporary loss of control. Family can be dicks, but I don't get the rest. What are they offended of and tired by?

Can you find a place to live with better housemates and find better friends? Are there irl epilepsy support groups?

Edit: Can you get a therapy dog trained to detect the onset of seizures?

 

[lesserbohemian]

Okay whoa. Your housemates are personally offended by it? Your friends are tired of it. Just, wtf??? If you limped, would they be offended and tired of it? This isn't something you can just control, that's the point of epilepsy, a temporary loss of control. Family can be dicks, but I don't get the rest. What are they offended of and tired by?

Can you find a place to live with better housemates and find better friends? Are there irl epilepsy support groups?

Edit: Can you get a therapy dog trained to detect the onset of seizures?

Compassion fatigue is how I think of it in terms of my friends. The first time you have a seizure in front of them and turn blue and they have to put you in the recovery position and call an ambulance, yeah they're terrified and there for you. The second, third, fourth? People just care less and less. Same with suicidal people. If your problem isn't easily fixable, they wanna avert their eyes.

And sadly, I am signed up to live for another year with the people who call me a liability and dislike me because of my epilepsy aha. I wish I could break that, but I can't afford it and the alternative isn't much better. I wish I could find better friends.

 

[a.n.kirillov]

Compassion fatigue is how I think of it in terms of my friends. The first time you have a seizure in front of them and turn blue and they have to put you in the recovery position and call an ambulance, yeah they're terrified and there for you. The second, third, fourth? People just care less and less. Same with suicidal people. If your problem isn't easily fixable, they wanna avert their eyes.

And sadly, I am signed up to live for another year with the people who call me a liability and dislike me because of my epilepsy aha. I wish I could break that, but I can't afford it and the alternative isn't much better. I wish I could find better friends.

Thank you! "Compassion fatigue", that's exactly it! I admire you for being so understanding towards your roommates/ friends.

Sorry for my relative ignorance of epilepsy, but how frequent are your attacks? Do you have a job right now/ are you a student?

Edit: sorry I meant you wrote every few months in clusters but I mean in terms of numbers?

 

[lesserbohemian]

Thank you! "Compassion fatigue", that's exactly it! I admire you for being so understanding towards your roommates/ friends.

Sorry for my relative ignorance of epilepsy, but how frequent are your attacks? Do you have a job right now/ are you a student?

Edit: sorry I meant you wrote every few months in clusters but I mean in terms of numbers?

I am a student, struggling to get a job because of the epilepsy. I have maybe 3-5 tonic clonics a month? Along with a lot of complex and simple partials. I've lost sight in one eye for a few days, cracked numerous ribs, broken hands, sprained wrists and elbows and ankles, got so many bruises and black eyes, lost SO MUCH of my memory. The lack of control over my brain and body and the disastrous consequences just make me want to take my life into my own hands. I've done everything 'right' and it made no difference.

 

[a.n.kirillov]

Damn that doesn't sound like a lot of fun. Are you somehow obliged to mention your epilepsy in job interviews?

 

[lesserbohemian]

Damn that doesn't sound like a lot of fun. Are you somehow obliged to mention your epilepsy in job interviews?

No, it's just that the gap in my CV having left my previous job because of epilepsy is pretty conspicuous and the hospitality industry where I live is pretty small so. Everyone knows. The only thing holding me back is that a lot of methods that are effective and quiet can induce seizures and I don't want to go out like that tbh. I've tried hanging and I can't make it work.

 

[GoodPersonEffed]

The only thing holding me back is that a lot of methods that are effective and quiet can induce seizures and I don't want to go out like that tbh.

So true about the methods inducing seizures. I have a lot of Diazepam for seizure prevention if I go such a route. I take it Diazepam has not been sufficiently effective for you?

 

[lesserbohemian]

So true about the methods inducing seizures. I have a lot of Diazepam for seizure prevention if I go such a route. I take it Diazepam has not been sufficiently effective for you?

They've only given me IV diazepam in dire cases. My neuro wanted to prescribe clonazepam but when I mentioned I had reservations due to my parents being alcoholics it was immediately off the table. I have tried to overdose on 2 months supply of my regular anti-epileptic drugs before and nothing. I'm thinking it has to be hanging unfortunately, but partial suspension never seems to work.

 

[GoodPersonEffed]

Yeah, partial doesn't work for me either, although there is one position I backed out of so I can't say for sure. If you look at the first post in the hanging megathread it's position three. I stopped before I let go of my full weight, it was just too intense. And my cartoids have gone no contact with me, I can't locate them.

 

[lesserbohemian]

Thank you, I'll try that position tonight!

 

[Deleted member 1768]

Hi. I have struggled with depression for as long as I can remember. I got really good at resisting it. When I was twenty years old, I was diagnosed with epilepsy and now I don't see the point. My seizures are not controlled and given the different treatments tried they possibly never will be. Despite the heavy medication and narrowing my life because of the disease, I still have generalised seizures. Waking up with injuries and blood in my mouth on the floor and realising I could've died and no one would care much; weirdly, it just makes me want to die more. This happens in clusters every month or so. My housemates are personally offended by my epilepsy. My friends are tired of it. My family has either cut me off because they think it's gross, or think it can be solved by some bizarre quick fix and so I should stop wallowing. The NHS is shit, no surprises.

I don't want my illness to mean I can't live because these things aren't due to my illness, they are fixable. But I can't fix them. I also can't live knowing they can't be fixed.

So I'm fucked.

Bohemian I have epilepsy too, and I know where you are coming from. I used to work in a pharmacy and found out a lot about the different anti-epileptics. Mine happen when I am relaxed, mostly nocturnal, and cover: TC, simple-partial secondarily generalized, and complex partial. I have been on dilantin, tegretol (carbamazepine), and lamictal (lamotrogine). I too have had numerous broken bones, dislocations, and the loss of multitudinous friends. What meds have they tried you on?

 

[lesserbohemian]

Bohemian I have epilepsy too, and I know where you are coming from. I used to work in a pharmacy and found out a lot about the different anti-epileptics. Mine happen when I am relaxed, mostly nocturnal, and cover: TC, simple-partial secondarily generalized, and complex partial. I have been on dilantin, tegretol (carbamazepine), and lamictal (lamotrogine). I too have had numerous broken bones, dislocations, and the loss of multitudinous friends. What meds have they tried you on?

I'm so sorry to hear that, but you also sound like a great person. I've tried lamogtrigine and zonasamide, currently on 1750mg levetiracetam. The loss of social support is hard to handle. Not that I had a good social support system before, but jesus christ.

 

[Deleted member 1768]

So true about the methods inducing seizures. I have a lot of Diazepam for seizure prevention if I go such a route. I take it Diazepam has not been sufficiently effective for you?

Some people with epilepsy are more likely to have a seizure on sedatives/antidepressants. Bizarre as it may seem. I am one of those.

I'm so sorry to hear that, but you also sound like a great person. I've tried lamogtrigine and zonasamide, currently on 1750mg levetiracetam. The loss of social support is hard to handle. Not that I had a good social support system before, but jesus christ.

Do they not have epilepsy nurses anymore in the UK? And have you gone on any of the forums for epilepsy. I know that the best forums no longer exist, but you can still glean a lot of information from some of the ones left. https://www.epilepsy.com/connect/forums/medication-issues

 

[GoodPersonEffed]

Some people with epilepsy are more likely to have a seizure on sedatives/antidepressants. Bizarre as it may seem. I am one of those.

But Diazepam is a benzo, and usually the first line of emergency treatment. Does it not work for you in such an event?

 

[Deleted member 1768]

They always give me dilantin iv. and I do not go to hospital after a seizure. If injured I wait, and see the doctor days later. No post-ictal pain for a while anyway...so. like the szs. you just live with it. But no, no benzos for me. they are more likely to precipitate another sz, than stop them. I hate dilantin.

 

[lesserbohemian]

Some people with epilepsy are more likely to have a seizure on sedatives/antidepressants. Bizarre as it may seem. I am one of those.

Do they not have epilepsy nurses anymore in the UK? And have you gone on any of the forums for epilepsy. I know that the best forums no longer exist, but you can still glean a lot of information from some of the ones left. https://www.epilepsy.com/connect/forums/medication-issues

Yeah they do afaik, but they can't assign me one rn because cuts. So I kinda just rely on people I know online with epilepsy for advice, because my neuro's kind of a dick. And yeah, your hospital experiences really resonate. I'm thinking of going today or tomorrow because I want to do it before my birthday.

 

[Deleted member 1768]

Yeah they do afaik, but they can't assign me one rn because cuts. So I kinda just rely on people I know online with epilepsy for advice, because my neuro's kind of a dick. And yeah, your hospital experiences really resonate. I'm thinking of going today or tomorrow because I want to do it before my birthday.

Yeah cuts...well acquainted with those. Do you know which part of the brain is affected Bohemian?

Yeah cuts...well acquainted with those. Do you know which part of the brain is affected Bohemian?

Ooops, I forgot I was also on Valproic for a short time. My hair came out in huge clumps, but it would have been wonderful had I been able to continue on that med.

 

[lesserbohemian]

Yeah cuts...well acquainted with those. Do you know which part of the brain is affected Bohemian?

Ooops, I forgot I was also on Valproic for a short time. My hair came out in huge clumps, but it would have been wonderful had I been able to continue on that med.

Left neocortical temporal lobe (sp?) but it seems to generalise weirdly often, idk if that's normal. The meds I'm on now have pretty good side effects compared to others apart from no appetite and extra depression. Luckily they never put me on valporate because I'm female.

Any links to hanging threads pls? I've found a few but nothing that helped enough for the last time.

 

[TimeToBiteTheDust]

I don't want my illness to mean I can't live because these things aren't due to my illness, they are fixable. But I can't fix them. I also can't live knowing they can't be fixed.

I'm so sorry. I'm in a similar situation to you. Health issues that I can't fix. And I understand how you feel. That thought in my mind that something is wrong with my.body when I want everything to be alright tortures me everyday. Makes me want to ctb.

 

[ImSoTired]

Hi. I have struggled with depression for as long as I can remember. I got really good at resisting it. When I was twenty years old, I was diagnosed with epilepsy and now I don't see the point. My seizures are not controlled and given the different treatments tried they possibly never will be. Despite the heavy medication and narrowing my life because of the disease, I still have generalised seizures. Waking up with injuries and blood in my mouth on the floor and realising I could've died and no one would care much; weirdly, it just makes me want to die more. This happens in clusters every month or so. My housemates are personally offended by my epilepsy. My friends are tired of it. My family has either cut me off because they think it's gross, or think it can be solved by some bizarre quick fix and so I should stop wallowing. The NHS is shit, no surprises.

I don't want my illness to mean I can't live because these things aren't due to my illness, they are fixable. But I can't fix them. I also can't live knowing they can't be fixed.

So I'm fucked.

I mean look on the bright side, like 1 in 100 people die from epileptic seizures I believe.

 

[lymestolemylife]

Hi. I have struggled with depression for as long as I can remember. I got really good at resisting it. When I was twenty years old, I was diagnosed with epilepsy and now I don't see the point. My seizures are not controlled and given the different treatments tried they possibly never will be. Despite the heavy medication and narrowing my life because of the disease, I still have generalised seizures. Waking up with injuries and blood in my mouth on the floor and realising I could've died and no one would care much; weirdly, it just makes me want to die more. This happens in clusters every month or so. My housemates are personally offended by my epilepsy. My friends are tired of it. My family has either cut me off because they think it's gross, or think it can be solved by some bizarre quick fix and so I should stop wallowing. The NHS is shit, no surprises.

I don't want my illness to mean I can't live because these things aren't due to my illness, they are fixable. But I can't fix them. I also can't live knowing they can't be fixed.

So I'm fucked.

I'm very sorry people around you are heartless. I'm sure they would not like to be treated the way they are treating you if the tables were turned.

 

[AcornUnderground]

I am so sorry to read this. I am thinking of you. Life can be so cruel.