epilepsy is too depressing

[brit1985]

I know some people cope better than others.. it affects everyone differently, with me it affected everything i'd wanted.. from joining the army to simply having a car or a job or going clubbing like my friends.. all of that i've missed out on, my teenage years were blown heh.. anyway does anyone else get these weird twitches in their hands as a warning that their about to go breakdancing? sometimes i lay in bedand they go away but other times i could have to lay in bed for a whole 2 days like i did from tuesday to thursday (today) it was a nightmare! and none of my tablets can control it.

i was thinking of brain surgery? .. but it costs so much, i live in britain with the money im on from benefits (its not really much of a benefit) 198 pounds every 2 weeks! i'd never afford surgery. makes me so mad that i cant just live a normal life not so degrading but seriously, can can death possibly be worse than this? it cant.. its impossible. i've considerd it allot, and allot more recently. i have 2 options, death or surgery.. and surgery is clearly not very optional.

my main question was does anyone else get these twitches befor they smash their head on a floor and end up with more scars to go with their collection?

 

[petero]

you know, I'll think I'll be able to start to recognize some warning signs, and then that whole knowledge database is thrown out of the window
there's a big difference between reasoning when interictal and when ictal or post-
sometimes the left side of my body starts tingling and getting a strange numbness, but nothing
sometimes I'll cut the coffee because I think it makes me feel weird, but then I feel weird without it - nothing
sometimes I'll get a 'lazy eye' sort of thing, visualizing the sides of my face as different - nothing
sometimes I'll panic because I'll start smelling strange smells - nothing
...

and then out of nowhere *boom* I'm recovering from a seizure with no correllations apparent

I've had a couple handfuls of tonic-clonic seizures, and maybe a few sleep seizures - something every couple months I'm ascertaining - it's hard to tell with sleep seizures
I've had many simple/partials that have no correllation that I can figure

but then again trying to think logically around times of seizure is ...impossible

I get myoclonic tics more lately, certain body areas... but I'm not sure if those are seizure related

but there is no way I'd get any sort of brain surgery - but then I know my epilepsy isn't nearly as bad as others' I've found out about

why don't you stay on this board for a while - there is a lot of useful information here regarding all sorts of therapies and there are a lot of great people here willing to help

I'd be willing to bet we all go through those times

 

[brit1985]

if i ignore this jerking of my hands, i go in to a seizure.. my hand starts to move upwards i have no control over it just a blank look on my face but i can see everything around me.. my heart beats like crazy my brain is going wild thinking all kinds of senseless things such as the intense need to touch something near me will save me.. its so horrible, scary - no one without epilepsy realises how scary it is.. makes me sick just thinking about it and then i wake up with new cuts and spew a little.

Doctors are also useless.. i'd like to speak to a doctor who has epilepsy.
I also hate how people suddenly judge you differently when they hear you have epilepsy they act like it's contagious lol.. they think your some kinda freak!onder:

I know comming on to a forum talking about suicide is a bit retarded and sounds like attention seeking however it's not a recent thought.. i tried with overdoses and failed..i was just sick instead :/ i think attention is when you make it public, i've kept it a secret for years... it's unavoidable that everyone has a limit, it's just a matter of when will they reach theirs.

 

[Cint]

I know comming on to a forum talking about suicide is a bit retarded and sounds like attention seeking however it's not a recent thought.. i tried with overdoses and failed..i was just sick instead :/ i think attention is when you make it public, i've kept it a secret for years... it's unavoidable that everyone has a limit, it's just a matter of when will they reach theirs.

Speaking of suicide is not retarded or an attention seeking matter....... it is a cry for help. If you have attempted in the past doesn't mean you won't do it again, more than likely depression will increase and your chances of trying and succeeding in the future are greater. Please find a neuropsychiatrist who deals with epilepsy and depression. Are you seeing an epileptologist or just a neurologist?

 

[brit1985]

I've seen all kinds of doctors.. they will never truly know what we know, they can study and read all the books they want and it wont remotely come close to what we have to go through. It seems difficult to explain my problem to doctors, they quickly diagnose the problem with something that to me just isn't right, it was my girlfriend who found out i needed to use blackout blinds to reduce seizures in the mornings, not doctors onder:

Also, they are sending me for a medical possibly taking me off this *caugh* benefit and putting me on work seekers yey! i live in the middle of nowhere it's hard enough finding a job without being a walking health and safety risk & not being able to leave the bed some days.

I'm not a fan of these people who talk to you when your depressed, my opinion of them is that they get paid to listen to all of your problems, and they do. it works for some people but not me, it's always in the back of my head that this guy/girl is sitting there getting paid 10x more than me to listen to my problems lol.

I can see i appear to be a big bucket of depression and anger heh, but i put on a good front around people in the "real world" online im free to say how i feel.. when i was in finland my friends father who's house i was staying at showed me the LOADED handgun he keeps on a shelf above his bed jeez the thoughts going through my head were crazy.. totally not a wise idea to show that to a person on a suicide mission lol

I wouldnt call this a cry for help, i dont mean to sound ungrateful for your reply but i come here to see if im the only one who thinks this way

 

[Loopy Lou]

Has your neurologist ever mentioned anything to you about surgery? You don't have to pay for neccessary surgery like that in Britain, but there are an awful lot of tests you have to go through and a lot of criteria to meet before you would be eligible. I wish i could have surgery... imagine if that was a complete cure? Doesn't always work out that way though.

I could never understand why people would be sent for a medical for epilepsy... I mean, usually thats in the case of people who claim they can't walk, or something immediately apparent. What do they expect you to do, have a seizure in front of them? Also, on a financial note, i'm not sure if you're aware that you can claim DLA for epilepsy. I work part time and i receive it. I don't like claiming benefits but it's a huge weight off my shoulders.

I think that there is so much going on in your life at the moment, everything can all pile up on top of you all at once. I think the main thing is that your epilepsy is obviously not under control. What meds are you on? Do you think changing them around could help?

 

[Cint]

I've seen all kinds of doctors.. they will never truly know what we know, they can study and read all the books they want and it wont remotely come close to what we have to go through. It seems difficult to explain my problem to doctors, they quickly diagnose the problem with something that to me just isn't right, it was my girlfriend who found out i needed to use blackout blinds to reduce seizures in the mornings, not doctors onder:

Me too, I was to many docs before getting the right diagnosis, also suffered severe burns. And I agree, they will never truly know exactly what we go thru, but if he/she is a dr. that specializes in epilepsy, then they will know better than the rest of the medical population what/how to properly diagnose their patient and what to prescribe.

I'm not a fan of these people who talk to you when your depressed, my opinion of them is that they get paid to listen to all of your problems, and they do. it works for some people but not me, it's always in the back of my head that this guy/girl is sitting there getting paid 10x more than me to listen to my problems lol.

I can see i appear to be a big bucket of depression and anger heh, but i put on a good front around people in the "real world" online im free to say how i feel.. when i was in finland my friends father who's house i was staying at showed me the LOADED handgun he keeps on a shelf above his bed jeez the thoughts going through my head were crazy.. totally not a wise idea to show that to a person on a suicide mission lol

I wouldnt call this a cry for help, i dont mean to sound ungrateful for your reply but i come here to see if im the only one who thinks this way

No you are not the only one who thinks this way. I have many times had to put on a good "front" for the real world, but the real me on the inside many, many times wanted so bad to die and considered suicide, too, but....... I knew better and sought help with a doctor who specializes in depression with epilepsy.... a neuropsychiatrist, specially trained to listen... and prescribe meds to help. Many people with epilepsy do suffer from depression but don't want to admit to others. Being around a loaded gun when you're depressed and considering the unthinkable is NOT a wise idea!