Tonic-Clonic & Simple Partial Seizures?

Hey everyone. I'm posting here in search of some advice relating to seizures.

I had my first tonic-clonic seizure at a Lacuna Coil gig in 2009, though I wasn't sure what was going on at the time. My memory of the beginning of the gig and a few hours before is completely gone. The person I went with was given a list of stimuli to try and recover my memory (similar to the ways they try and help amnesia patients) but nothing was of use. Ever since that day I've been suffering from what I believe to be simple partial seizures. However, I'm not entirely sure about this as it's never been diagnosed by a doctor or any kind of professional. Every time I've seen any kind of professional, they tell me they have no idea what's wrong.

Earlier this year I had my worst and most notable seizure at Reading Festival. I had been awake for over 48 hours and walked over 10 miles with enough supplies to last me almost a week of camping. I had set up my tent in the pouring rain on one of the coldest days in months. Exhausted, I felt it was time for some food and a nap. All I remember after my nap is waking up, feeling completely disoriented, not knowing where I was etc. and I sat next to a friend outside and all I remember saying is "I don't even know where I am, Luke". I think I stood up after that, but I'm not sure. Next thing I knew, I woke up in the medical tent with two of my friends and a doctor standing over me. My initial reaction was "where the fuck am I?" and "what the fuck happened?" Thankfully the doctor was a pretty calming guy who sat and explained what had happened and how long I was unconscious for. I was checked for injuries, prescribed a high dose of codeine because I injured my shoulder quite badly when I fell and then sent back to camp. I got back to camp and it was at least a day till I got over feeling like I was watching myself in a movie (only way I can think of to explain it).

I asked some of my friends to give me a quick account of wtf happened to me so I could tell my doctors and here's what they said:

Ever since then, I've had occasions where I've woken up in random places such as the kitchen, my bedroom floor, the dining room and had no idea how I got there or why I was on the floor. Whether or not I had a tonic-clonic seizure during these times is unknown to me.

Also I'd like to point out the notable signs of the simple partial seizures I have are loss of orientation, speech disruption, muscle spasms, depersonalization and derealization.

So, what I'm posting to ask is: what the hell is causing this? I'd love to hear from epileptics and diabetics, as that's what most of the signs seem to point to.

 

Seizures can be caused by literally any stimuli. An ex of mine had epilepsy and she was always at risk, at any time. They make medications to help control and prevent the seizures, but they're not 100% effective.

Have you had a CAT scan or an MRI? I wonder if it may be tumor related, or a symptom of an underlying disease. Have you ever had unprotected sex, and if so have you been tested for a sexually transmitted infection? What were you doing prior to all of the seizures that you can remember? Were you eating a certain food, did you smell a certain scent? Can you remember any sensations of deja vu? Have you ever suffered a brain injury such as a concussion?

There is no real way for a sythe member to be able to answer your questions effectively. Each person with a history of seizures reacts to different stimuli and seizes differently. My ex used to collapse, eyes rolled to the back of her head, and she'd shake for about 5-10 minutes. Before she shook she'd always smell something (I can't remember what it was) which was indicative of her about to seize.

If you can, while with friends, tell them of everything you smell when something odd happens. If you feel lightheaded, tired, dizzy, or weak, or if you smell something out of the ordinary, tell someone. If you seize immediately after, you've found your aura. The aura is the precursor to a seizure that most victims of seizures experience. With knowing your aura, you can better prepare for a seizure.

The best advice I can give you for now is until you've realized what is triggering you to seize, avoid doing things that could kill you, like driving, operating heavy machinery, or mountain climbing. See a neurologist and schedule a CATscan or MRI, that may give an idea of what is going on with the electrical system of your brain.

 

I was referred for brain scans by my doctor but I've not been given a date. I don't even think she actually referred me at all.

My aura is hugely obvious to me. In the OP I described the detatchment from environment and the way it feels like I'm watching myself in a movie. That and muscle spasms usually mean shit's gonna go down.

 

If she never referred you, call one yourself. Every hospital has a convenient care section where you can tell the receptionist what is going on and get checked out. If your doctor never talked to the specialist, find a doctor that will. This situation won't resolve itself, after all. Most specialists can also be contacted directly. I wouldn't trust my doctor to recommend me, they're pretty terrible at remembering shit. I'd just do it myself.

As I said above, they make medications to thin the seizures out and prevent them. You'll probably have to wear a bracelet for the rest of your life stating that you are prone to seizures (Stephanie had to wear a bracelet that just said "Epilepsy" on it).

 

In this country its virtually impossible to see a specialist without a referral from a general practitioner unless I end up in intensive care after a seizure. It's a really shitty system ._.

 

my ex's dad gets them when he is overly relaxed,he makes the same clearing throat noise you describe, he doesn't convulse tho .

docters said it was due to a major car accident he was involved in while still a teen.


apparently there are many differant types of medication to control them to a degree. i spoke to him about it once and he said the first few types of medication actually made his condition worse..he just kept swapping till he found one that helped.

i only witnessed it a few times but i can remember the confused look on his face after he was finished. i couldn't imagine the feeling of not remembering a full day especially if i was not drinking heavily

 

That's unfortunate. I'm not at all familiar with the German hospital system. I'd say try a follow-up with your doctor. Give her/him a call and ask her why they are taking so much time to contact you about a specialist. A little white lie, like "the seizures seem like they are getting more frequent" can also speed up the process.

 

Sincerely hoping that life long medication isn't my only option if I get diagnosed with anything.

Yeah I think the white lie will be my only option. Doctors here are entirely useless and have zero sense of urgency.