Epilepsy experience anyone?

Post Reply New Topic

So I was diagnosed with right temporal lobe epilepsy several months ago. It was not a huge surprise, and it helped explain why I would find myself on the floor without knowing how I got there (for a very long time, I assumed I was just clumsy [which is the case] and just kept falling down, hitting my head [which was not the case]).

They started me on some anti-convulsants (at the minimum dosage), and after many problems with side effects, they switched me to a new medication (that seems to have the exact same side effects). I am not doing well with the side effects. The medication seems to exaggerate a lot of the social, emotional, and concentration problems that I am already plagued with. I am having significant problems at work, especially with word retrieval and simple conversations.

Can anyone relate to this/provide me with some advice?

I finally have a job where the results matter more than my ability to interact pleasantly wiht my supervisors, and I am beginning to worry that this is going to screw everything up after I have struggled so long and so hard to get here.

moved from Health, Fitness, and Sports to General Autism Discussion.

although this is technically a health issue so you started the thread in the right place, i think that epilepsy tends to be comorbid for a lot of aspies, so i moved the thread where you may get more replies.

Sorry to hear that. Is there anything you can take for the issues you mentioned? Also, I think some people tend to be on a combination of drugs to control their epilepsy and the side effects of the other drugs.

How long have you been on the medication for? I find (in general) that the side effects wore off after a while.

I've been on the medication for a few months. The side effects were horrible for the first few days, then dropped off to a steady level after a week or so. No improvement since then.

I drink a sleepy time tea in the evenings (on the advice of a cousin who has similar problems), which helps a little.

I had a seizure once

was not very fun

haven't been given any medication for it, did get an ekg and a echocardiogram

I was diagnosed with epilepsy when I was 8 years old.

I'm sorry about your problem. It must be very difficult. I don't have any similar problems (apart from the more autistic-like problems), but I just wondered if you can speak to your boss or HR about the problem you are having so that they can be understanding and give you some accommodations. Having epilepsy is hard enough. You would want to at least minimize other problems.

Your description of you finding yourself on the floor without knowing how sounds really frightening, though you put it rather matter-of-factly. It can be very dangerous, can't it?

I am not on any medications and don't have a diagnosis of epilepsy but I do have epilepsy type symptoms. I also don't have a diagnosis of ASD and am diagnosed with social anxiety and depression but I again get a lot of ASD symptoms (difficulty making friends, cannot interpret some social cues or read peoples intentions (mostly because their way of thinking so strange it is impossible to understand and make sense of...they live in some bloody twilight zone dimension out there!), intense interests, a liking of sameness and some routine etc yadda yadda.

What I will say is that my epilepsy like symptoms have contributed to messing up my life but then so have many of my other health issues. IE I have terrible sleep problems (cannot sleep at a normal time at night and swing between insomnia and hypersomnia without being able to get it to settle down into something normal...ie either can't sleep or I need to keep napping in the day even when I do get a full nights (or days) kip).

I also get splitting migraine headaches and this can get me down a bit. I can't risk taking medications for things like depression, migraine and sleep problems etc as it makes the headaches and epilepsy like symptoms worse and I get too many side effects. So many I can't function at all!

Basically I call my epilepsy like symptoms my 'brain glitches' as it is like my neurons are temporarily misfiring. One brain glitch is a tendency to experience a phantom burning rubber smell, followed by a feeling of deja vu that gives me goose bumps on my arm and experience a wash of fear rising up from the pit of my stomach. I sometimes also get brief periods of missing time afterwards (although that is rare) which I only notice because the time line is warped in such a way that it would be physically impossible if I had not lost time. I am not aware of the missing time until I notice the distortion in the time line and have no conscious awareness of the period of missing time itself.

The whole process takes less than 5 minutes with missing time and less than a minute without missing time, the glitches are identical each time and never changed in the 11 years that I had them. I cannot bring them on by getting anxious or by willing them, they either happen or they don't and I cannot predict them or stop them once they start.

I did report these symptoms to my gp but they just said they were anxiety attacks and that I had just gotten distracted to explain the missing time. I know distraction....I am the queen of distraction...distraction is quite different especially as with distraction I have awareness of what I was distracted by whereas with this I don't and it was always preceded by the burning rubber smell etc every time.

The other one is a sudden inability to read. Only for a moment or two. Basically I can see the words, I maybe able to sound the words out but I do not know what they mean. I may as well be reading German when I don't speak the language. This can be followed by missing time as well.

Another one is the alice in wonderland thing where for a few seconds things appear to change size (I will feel taller, furniture will look smaller). It is like I swallowed the wrong potion or something.

Things worsened when I came off antidepressants. For about 6 months I was waking up to brief muscle spasms in my sleep. I would then fall back to sleep before waking up later with a bitten tongue, covered in drool, confused to the point that I hardly knew where I was and covered in bruises when I didn't know where they were coming from. This could happen during any naps I took in the day as well and I would sometimes fall asleep in the middle of doing things (although I didn't fall over as I was lay down or sat down at the time). I was also getting really bad migraine headaches that left me feeling like I have been lobotomised for a while.

Much of the brain glitch stuff has passed now I am no longer on medication (gone quiet) although I can get the occasional flare up now and again...especially with the sleep related stuff. And of course the migraines and sleep issues are still so bad they are stopping me from functioning during the day.

I don't report it to my drs anymore, they just keep trying to give me antidepressants and such medications make my brain glitches, headaches and EDS worse. They also treat me like I am a hypochondriac and/or mental as though I am imaging things when I am not. I find their attitude offensive especially when my symptoms are very real and very disruptive to my life (especially the skull cracking left sided thumping excruciating headaches which come with visual disturbances, nausea, light sensitivity etc and which they keep insisting are tension headache when I think they are migraine). They also think I can just normalise my sleep when it was never normal to begin with (ie it has always been fragmented and my circadian rhythm has always been difficult).

It is the same with the social stuff...i try to tell therapists I don't know how to socialise, make friends and have trouble maintaining friendships and they just keep saying "it will come naturally when you relax". Its rubbish, it will not and has not come naturally when I relax in 37 years. So I continue to struggle on that front as well.

I have no social support network, no family, no real life friends, no partner, and I can't rely on my drs for support because they make me sick with their medications and treat me like I am a mental imbecile (ie they do blood tests to find out the cause of my headaches and sleep issues insist that all is well because the blood tests come back normal. Ummmm since when could you diagnose a sleep disorder and migraine headaches with a blood test? idiotic drs). They patronise you too...if you relax you will be able to sleep normally/the headaches will go a way. What bollocks. I only get stressed because the sleep won't regulate normally and society is trying to force me to have a normal sleep pattern when I physically CANNOT. They also expect me to function normally with those headaches. I CANNOT. I need to go lie still in a dark room for several days.

I am tired of society torturing me with its ignorance.

Ergo am I left to struggle with things on my own.

I don't work at the moment though as I am on disability but that is not going to last forever especially as I am now refusing psych treatments until they run a sleep study and refer me to a neurologist. I also won't take any more antidepressants for the social problems...they really don't help on that front at all. Relaxing me does nothing to help me make friends.

I've had some before. Not fun at all and I never remembered them. Except not sleeping well at all and waking up with a very sore head. (I was informed that I'd fallen out of bed, which is the only reason why my mum knew what had happened)

My EEG (I think that's what you call the EKG? It's an electrical recording of your brain activity) came back clear.

I never took an EEG, I probably should take one but the other test came back normal

im not sure if its related but I also get really bad tremors sometimes and my hands always shake

I have seizures as well. I have had them for 3 years now (maybe four... I can't remember). I can totally relate to being on the floor and having no idea how you get there. I lose about an hour before my seizures and about that much afterward so I can wake up in a hospital being told I had a seizure at the store but I don't even remember having gone to the store. It can be quite disorienting...

I have seen that people with autism/Asperger's often have epilepsy.

Yes! I have had that reading problem, too! And with hearing speech. I have epilepsy, and the last two seizures I've had (now over 10 yrs ago), were preceded by, in one case being suddenly unable to comprehend what someone was saying to me on the phone. I mumbled something to the other person, hung up the phone, and my next memory is waking up on the floor. The next seizure, I was sitting at a desk reading, realized I kept going over the same paragraph again and again without its meaning penetrating, then boom! I was on a stretcher being wheeled out to an ambulance.

When I was younger, I don't remember anything preceding my seizures, which helped make them more frightening. I had no 'aura' so I didn't have time to sit down, tell someone, etc. they seemed to hit completely at random. Now, I'm not so sure there isn't a findable cause...

The seizures are totally under control with meds now, but I discovered a couple years ago that I could recreate the reading comprehension problem pretty reliably by eating a meal that contained a significant amount of wheat gluten. A single piece of bread wouldn't do it, but a sub on a big fluffy roll would. It would also make me so tired that I'd have to take a nap in the middle of the day. That, or drag myself through the rest of the day in a mental fog.

Anyhoo, that's one small bit of my weirdness. Had to join WP when I saw that someone else shared it.

I have had an episode once, during my military service, and was tested afterwards, but nothing was found. I found out years later that I react very badly to rum and Coke, but this was the worst reaction.
And since I abstain from drinking rum and Coke, nothing, even remotely similar, has ever happened again.

I can't relate even though I have a past history of Epilepsy because it cleared up when I was still very young. I didn't even know I was having seizures at the time but I was on medication for some reason. I was lucky. I got it in childhood but it was temporary. I'm not sure if it can clear up in adulthood. I hope there's a way for that to happen.

Have you had a seizure since starting the medication? Hopefully the medication eliminates them completely while you're taking it. As someone else has already said, talk to your boss.

I hope you're okay.

Same as me. I had weird rolling eye episodes as a baby and they put on my medical records as a child that I "fainted" but then it became clear they were more than faints when I had what they called epilepti-form attacks at age 12. I remember them vividly, I would get dots in front of my eyes and I knew it was coming. Apparently at least one of them was a full grand mal (now known as tonic clonic - bizarre name) seizure. I had an EEG and I had an abnormal result, which I found out very recently is the same result that autistic children get. I was put on tranquilisers. Shame in those days they didn't investigate things properly as I only got diagnosed with AS recently as an adult!