Needing some advice...

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AmandaS85

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Hi Everyone,
I had my first Grand Mal seizure about 5 years ago. I was working night shift at the time. I got home and instantly fell asleep on the couch while my b/f was doing laundry. All i can really remember is being woke up because my head started feeling like it was bubbling. I instantly panicked and tried to jump up and yell to him to get his attention. But i couldn't stand so i started to crawl and couldn't even yell. After that everything went black. I woke up to him over top of me asking me if I had taken any drugs or anything because i had just had a seizure. Of course the answer to that was no.

I ended up in the hospital for 3 days going through test after test and was discharged with a prescription for Keppra. I lost my job because of it.

After finally getting in to see the Neurologist, i was sent for a Cat-scan and MRI. The results of the MRI came back saying "Suspicious for Heterotopic Gray Matter." My Neurologist didn't even explain to me what that meant but it sounded scary. After talking with a few different doctors i still don't understand what that is.

Since then, I've had an EEG, another MRI, and more tests done. I still have no explanation why I have seizures. 99% of the time the Grand Mals only happen when I'm sleeping. I honestly believe I'm having more then just grand Mals, but i don't know. I quit all of the medication and testing because nothing was helping and none of the doctors could figure anything out. The side affects from the meds were horrible and i felt it wasn't worth it.

As of right now I just deal with it as it happens, the best way i know how. I'm hoping that by joining this forum, I'll be able to gain more knowledge on whats going on with me and meet new people that understands what's going on. If you can help in any way it would be greatly appreciated. Thanks for reading and I'm looking forward to meeting you!
 
Hello and welcome! Epilepsy is a very mysterious disease, hard to pin down, hard to treat successfully. There are many AEDs, and it can take a lot of trial and error to find which one or combination of them will help control your seizures.
It's not uncommon to have seizures associated with sleeping, and there are various types of seizures that you could be having concurrently. Wikipedia has some good info on the types:

http://en.wikipedia.org/wiki/Seizure_types

Note: when they talk about "impairment of consciousness" with complex partial seizures that does not necessarily mean loss of consciousness. You can be conscious but unaware of some of the things you are doing or exactly what is going on around you. That's the type of seizure I mostly have.

My main advice is to visit an epileptologist and NOT just a plain neurologist. Epilepsy is far too specialized and complex for most regular neurologists to handle well. Here is a recent thread I wrote about that:

http://www.coping-with-epilepsy.com/forums/f23/get-thee-epileptologist-23319/

Again, welcome to the forum. This is a great place to be, with people who understand what epilepsy is all about. Keep us posted on how things go.

Onward and upward!
 
Hi! Welcome to the group!

Diagnosis is scary as hell. I started having complex partials when a cavernous hemangioma burst in my temporal lobe. During mine, I'd run around screaming (as if running from it) and then I'd pop out of it as if nothing had happened.

First they thought it was panic attacks and put me on meds for that. Then they found the blood and did surgery. 2 years of being seizure free before scar tissue became a problem. I'm switching from keppra to Lamictal at the moment. Keppra sucked for my memory and stopped working. What have you tried?

It's a sucky thing to have to get use to. :l

Glad you're here. Ask whatever you want and vent a little if you need too. I like it here because I have people similar to me rather than family that "gets it".
 
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Thank you so much for the info! I was able to learn more information. One step closer to figuring out the problem and fixing it.
 
I left one important thing out of my post...

One thing I forgot to mention was that, when i was around 5 or 6 I busted my head open and had to have stitches. Up until about 5 years ago all i had was a scar about 1 and a half inches long. Now there's a hard lump that has started slowly growing. It only hurts when i put pressure on it or bump my head there. I also developed migraines around the same time the lump started growing. My question is, could the lump and migraines have something to do with the seizures? My neurologist didn't seem concerned at all but she didn't even examine it.
 
Hey Amanda, welcome to CWE!

I recommend that you find a neurologist/epileptologist who will answer ALL your questions -- you should never leave an appointment feeling like there's something that you don't understand or that the doctor hasn't made clear. It can be a pain to doctor-shop, but finding the right 'collaborator" in your treatment can make a huge difference.

It's also important to see a neurologist to get your seizures under control. Uncontrolled seizures have a risk of escalating over time -- in other words, the more seizures you have, the more seizures you are likely to have in the future. If keppra wasn't the answer for you, don't despair -- there are other meds out there that could work much better for you with fewer side effects. (BTW, if you are unhappy with an anti-seizure med, NEVER quit cold turkey -- that can actually cause more seizures to happen by stressing the brain big-time.)

"Gray matter heterotopia" is basically a description of when the neurons in the brain of a fetus don't develop properly and end up in the "wrong place". It can have a range of symptoms, anywhere from zero to severe. Seizures are a fairly common symptom. If it is a cause of your seizures, it's good to know, but ultimately not crucial or scary. It's NOT something that progresses over time. You should definitely get some better answers from the doc to reassure you and explain why it's suspected and whether it's relevant to your treatment.

Your seizures could also be related to your head injury. I had a severe head injury when I was 5, and developed epilepsy 30 years later. It's possible that tiny scarring from the injury is responsible for my epilepsy, but there's no way to know for sure. And I'm okay with that -- most of us with epilepsy never know the primary cause.

Migraines are a close cousin of epilepsy -- some of the symptoms overlap -- and many folks have both. It's also possible that your migraine symptoms are actually a form of seizure called "simple partial." that doesn't involve loss of consciousness. Your neuro should help explain any possible connection as well as what may be going on with your head bump. I recommend that you make detailed notes about your symptoms -- past and present, even things that you aren't sure are relevant -- and make a list of all the questions and concerns your current docs have been unable to address. Be persistent until you find the neuro who will take them seriously, and who will help you find a treatment to give you relief.

Best,
Nakamova
 
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