I just remembered that the ongoing string of seizures that I've been experiencing whenever I sleep - I call them newType seizures, because they're different to the oldType - started almost a year ago. It prevented me from going to the Halloween party I had planned which I had been really looking forward to.
What is frustrating me now, though, is that there must be an unused costume lying around somewhere, but I can't remember what it was or where I put it. Now I don't know what costume to use this Halloween!
My twitching has worsened. There are days where the tremors in my arm never stop and my leg occasionally joins in. I went to see a new neurologist recently, and he actually expressed doubts as to whether or not I have epilepsy (he hasn't seen the EEG yet, though, so who knows?).
All the same, I have something that causes the right side of my body to twitch a LOT. Closest thing I've seen that I can compare is... well, sometimes it looks like Parkinson's (I'm sure a lot of things look like Parkinson's at one time or another though). It also causes my brain to shut down sometimes. Not completely, just to where I'm really incoherent and spaced out.
I like him though. I don't mind him doubting the Epilepsy diagnosis; we'll see what he decides on from the EEG. Either way, something's wrong with me. I don't care what label you want to give it, just fix it!
Exciting news though:
Doctor: Are you driving?
Me: ...I thought Epileptics couldn't...?
Doctor: Do you pass out, lose consciousness?
Me:... no, never have.
Doctor: Then you can drive.
Me: so... you are officially giving me the okay to drive.
Doctor: I officially give you the okay to drive.
Me:... can I have that in writing?
So I recently 'fired' my neurologist. He didn't take it well. It was the first appointment I had had with him for a while - over 18 months - and I went in prepared to tell him how opposed to him I was, after finding out that he has been conducting experiments on monkeys into Parkinson's Disease. He denied the accusations, on the basis that he didn't personally do the experimentation, ordering students to do it on his behalf, and argued that since they have the will not to participate, he could not be held accountable. I couldn't really argue with his reasoning, and continued to explain why I needed him to refer me to another doctor.
I told him that, after the past fifteen years of seizures controlled by medication to perhaps one or two per year, I have been having them every time I fall into a deep sleep since October. For a while it was every night, until I started setting an alarm to wake me every 45 minutes, which has controlled things quite nicely since, but left me tired and experiencing almost constant hallucinations of black and white tendrils seeming to lead from objects to their most likely destiny. I noted that I was unsure whether these symptoms were from lack of sleep or epilepsy, but added in jest that I could see how people with epilepsy sometimes think they have psychic powers.
'I see,' he said. 'So for how long do you believe you've had these psychic powers?'
If I hadn't come into the session planning on asking for a referral, I would have then. I made a point of explaining that I knew what I was seeing was little more than hallucination, and that I knew that I did not have any ESP, but he dwelt on the subject for so long. Finally he returned to the topic of the seizures. I explained that although they don't seem to be as severe as what I have experienced in the past, where I would be out of action afterwards for at least 24 hours, I knew the familiar after effects. He asked if anyone had witnessed one of the seizures, and when I told him that they haven't, because I am single right now and sleeping alone, he wrote off the incidents as bad headaches, and suggested painkillers.
I pointed out that on the nights I do allow myself uninterrupted sleep, I wake with bruises, cuts and scratches, and find inexplicable pools of blood in the bed and around the room. He did not consider this as important, though when I pressed him and insisted that I believed that I was suffering more than just headaches, he did send me for an MRI and EEG. It was only at the tests that I learned that he had ordered the results to be sent to him, even though I specifically stated at the conclusion of the appointment that this would be my final visit. He also refused again to refer me to anyone else, and told me 'Just because a doctor has fancy, inner-city offices doesn't make him any more qualified.' I asked the staff at the clinics to give me a copy of the results as well to take to my next doctor.
In the mean time, I have had messages on my machine from his assistant asking when I'd like to schedule an appointment to look over the results. It is somehow satisfying that I will be able to go to my new doctor with the confirmation that other people have now witnessed the seizures I've had while I'm asleep and proceed from there, and hopefully it will be someone who I will be able to gossip with about my ex-doctor. I guess for some doctors, breaking up is hard to do.
Hi, I'm Sam. 35 and living with partial complex seziures. Currently on 500 mg per day of Keprra and have been seing my Neuro for a year. Have been living with what I called "going funny" when I was ten, since the age of five. Though my dad kept chalking it up to my being sick (i.e. flu) or stress from school.
As an adult I was dismissed as having epliepsy till I had three grand mals, two in front of ER staff. Which had me cheering inside my skull (yesssssss,take that doubters). Anyways I have a darkly twisted sense of humor, that has kept me sane.
Some of my quirky thoughts:
-The next person that asks me "who is the president" (I'm from the States) after I come back from an episode. Is going to get decked. Being a history geek, I always want to give some less known answer (Grover Cleveland).
- No I'm not drunk or on drugs when I black out, actually I am on a drug. But it's not the kind to take to get high.
-Harley lover for life, even if I can only ride a trike (3 wheel). My friends dad said he'd nickname mine "twitchy trike".
-Just because I sleep in mega shifts (7-9 hours) at a time, dosen't make me lazy. A man needs his sleep!
-This is only one part of who I am, not the main focus.
-No you can't catch epliepsy from being around me. It isn't cooties and this isn't second grade.
-(after being asked had I found Jesus, once I came back). Sorry, didn't know he was missing.
Thanks for giving me a place to post.
A quiet breath upon my skin,
a tingling warmth midst the chill,
laying me at ease with life, with pain,
and all I struggle beneath.
A whispered hope, a waking thought
to take me from the depths of sleep.
I think perhaps I'll feel today,
and if the dove comes back, I'll try again.
Trembling tears threaten,
and I promise they will fall.
Love them for what they are and what they mean:
The courage it takes to hurt.
I am 25, almost 26, and was diagnosed three months ago. I have partial seizures that are resisting treatment, my short term memory is disappearing fast, I break down a lot and go into states where I don't move... maybe catatonic? I don't know. I blank out in the middle of conversations, and I get dizzy every time I stand up. For now, I can manage work. If I get it stable, maybe I can get some of my brain back. I am grateful for my brother and boyfriend who take me to work, I am grateful I have not been fired, but I still need places to vent. If you'll have me, then congratulations! You have been chosen to receive my various complaints and expletives!
I am fuzzy brained and have earned the purple ribbon of life!
I am very pleased to meet all of you.
Sorry for spelling an stuff I'm typing this out quickly before Hurricane Irene hits and power goes out! Hope everyone is safe if you are on the east coast!
I haven't posted in this community(or my livejournal) in years and its nice to see that its still active!
Brief Reintro/bio: My name is Shelly and I am 25 and I don't know when I started my lj account or when I left it...
Anywho, I have had seizures my whole life and was diagnosed in 7th grade. I suffer from grand mal, tonic clonic and JME.
I have been on Depakote (can't remember dosage, just hated the stuff it didn't work) and after that Lamictal (same deal).
Currently I am on a combo of Keppra 4,000 mg and Topamax 300 mg per day.
Now the reason I am posting in here after so long is I had a 'breakthrough seizure". Its been a year and half and everything was going great and WAH-bam!!! I'm out and a month later another. But the second one was very strange. I was conscious and screaming at the top of my lungs for help over and over again. Apparently it was a gut wrenching screaming that was like a mechanical alarm clock, like HELP. HELP. HELP. HELP. I was very delusional yet very aware. I have had seizures simaular to this but not this extreme. People said it looked like a severe panic attack or night terror, mixed with a seizure.
With all this information I am recieving I really don't know what to tell my doctor, I am thinking there is something else going on here. I have tried to think of the triggers too and the only thing that was in common was the fact I was about to get my period. Can anyone provide me with any info or questions I can ask myself or my doctor? Or has anyone had a seizure that was bizarre too? Could it be the meds?
I'm curious how you all dealt with the diagnosis. I'm 26, and was just diagnosed earlier today.