sEiZuRe!
14-11-21, 16:07
Hello everyone,
I'm new here but like many of you I have health anxiety. I'm currently on medication for seizures and they run a relatively low risk of Steven-Johnson Syndrome (SJS). There's a 1 in 2500 chance of getting it while on these pills and it's freaking me out.
For anyone that's willing to read a little more background, here goes.
My mother and grandmother were protective of me as a toddler but I ended up in hospital a few times. Somewhere along the line I developed an anxiety disorder as a young child. Fear of needles, hypochondria, fear of medical procedure and fear of doctors. Yep, like many of you here, I avoided everything I could that had to do with any of it. I read about every illness there was and I was convinced I had them all. I think I even had AIDS as a ten year old and rabies (in Australia!).
Anyway, I because of an incident in my life at 16 I developed a severe depression. My left side became numb for a year or two. I was close to suicidal but honestly too stubborn to end it. I like living more.
Well the numbness in my face disappeared and I slowly grew out of the depression. But I had these immense head aches. At the time I played a lot of computer games and you'd get warning pamphlets inside warning kids games could trigger epilepsy. Of course I had a phase where I was SURE I had epilepsy. Or a brain tumour or both.
One night I woke up and thought I was going to have a stroke or something but it only lasted for one minute or so. It was the same side as the numbness I had earlier in my teens. At the time I was around 25. I remember shaking my arm, it felt as if a blood vessel behind my left eye was about to explode.
I was constantly panicking, worried about my health, as you can imagine. Too petrified to see a doctor so I ignored it for 10 years. The fits became a weekly occurrence and eventually I decided to pull all my courage together and go see a neurologist.
Tests came back ok. Nothing wrong with me. Thank God.
One day a friend of mine saw me have a fit and said, "That's a seizure! You had a seizure!". I was floored. One day I managed to record it on video and I broke down. This is like a nightmare.
Anyway, getting to the point, what followed was ten years of going from doctor to doctor, from hospital to hospital. 10 years worth of tests all came back clear. I am healthy and no one could tell me conclusively that I had epilepsy. No EEG, no MRI, not a single expert (including a neurologist who studied at some prestigious US university) could tell me what I had.
How ironic that the kid scared of hospitals would end up with an illness no one could name.
I'm sorry but there's no happy end to this story. The current diagnosis after 20 odd years is either refractory focal epilepsy (without any epileptiform evidence) or psychogenic non-epileptic seizures.
So I'm on these meds now, with a risk of SJS and my skin is itching beyond belief. I've had bad reactions to every AED (anti-epilepsy drug) I've tried and the one I have now is scaring the living daylights out of me. I've calculated the risk to be about 400 people in a million. That's a very slim chance, but of course I'm in that group.
It's so crazy that your mind can produce seizures, in your sleep, which you can't control. It's crazy that your body can create symptoms because your mind is convinced you have something.
Has anyone experienced any of this?
I'm new here but like many of you I have health anxiety. I'm currently on medication for seizures and they run a relatively low risk of Steven-Johnson Syndrome (SJS). There's a 1 in 2500 chance of getting it while on these pills and it's freaking me out.
For anyone that's willing to read a little more background, here goes.
My mother and grandmother were protective of me as a toddler but I ended up in hospital a few times. Somewhere along the line I developed an anxiety disorder as a young child. Fear of needles, hypochondria, fear of medical procedure and fear of doctors. Yep, like many of you here, I avoided everything I could that had to do with any of it. I read about every illness there was and I was convinced I had them all. I think I even had AIDS as a ten year old and rabies (in Australia!).
Anyway, I because of an incident in my life at 16 I developed a severe depression. My left side became numb for a year or two. I was close to suicidal but honestly too stubborn to end it. I like living more.
Well the numbness in my face disappeared and I slowly grew out of the depression. But I had these immense head aches. At the time I played a lot of computer games and you'd get warning pamphlets inside warning kids games could trigger epilepsy. Of course I had a phase where I was SURE I had epilepsy. Or a brain tumour or both.
One night I woke up and thought I was going to have a stroke or something but it only lasted for one minute or so. It was the same side as the numbness I had earlier in my teens. At the time I was around 25. I remember shaking my arm, it felt as if a blood vessel behind my left eye was about to explode.
I was constantly panicking, worried about my health, as you can imagine. Too petrified to see a doctor so I ignored it for 10 years. The fits became a weekly occurrence and eventually I decided to pull all my courage together and go see a neurologist.
Tests came back ok. Nothing wrong with me. Thank God.
One day a friend of mine saw me have a fit and said, "That's a seizure! You had a seizure!". I was floored. One day I managed to record it on video and I broke down. This is like a nightmare.
Anyway, getting to the point, what followed was ten years of going from doctor to doctor, from hospital to hospital. 10 years worth of tests all came back clear. I am healthy and no one could tell me conclusively that I had epilepsy. No EEG, no MRI, not a single expert (including a neurologist who studied at some prestigious US university) could tell me what I had.
How ironic that the kid scared of hospitals would end up with an illness no one could name.
I'm sorry but there's no happy end to this story. The current diagnosis after 20 odd years is either refractory focal epilepsy (without any epileptiform evidence) or psychogenic non-epileptic seizures.
So I'm on these meds now, with a risk of SJS and my skin is itching beyond belief. I've had bad reactions to every AED (anti-epilepsy drug) I've tried and the one I have now is scaring the living daylights out of me. I've calculated the risk to be about 400 people in a million. That's a very slim chance, but of course I'm in that group.
It's so crazy that your mind can produce seizures, in your sleep, which you can't control. It's crazy that your body can create symptoms because your mind is convinced you have something.
Has anyone experienced any of this?