Where NOT to have your first seizure

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Always great to see others that have the same challenges in life as you do, just makes it so much more bearable! I got a rude awakening last week. I'm 29 years old. I've recently (past two-three months) been having "spells" where I just fade away with some strange sensations. (Now, with an educated eye, I can recall a strong sense of deja vu, fear and a bad taste in my mouth.) No passing out, just struggled understanding speech for a few seconds. The two or three times it happened I didn't really know what to make of it, so just ignored it. Unfortunately. Then, last Thursday afternoon, I awoke in hospital, my wife frantic, by my side. I had had some sort of seizure while driving home from work, on the highway. I remember nothing of the incident, but according to eyewitnesses, I just suddenly veered off to one side and ploughed into some concrete barriers at the side of the road at around 80-100km/h or so. I was very fortunate indeed to have a trained paramedic in a car a few hundred metres behind me who stopped and helped me. I spent the night in hospital for observation after it was determined that I had thankfully suffered no major injury due to the accident (the same cannot be said for my car!) A bit more worrying was the fact that there was no apparent explanation for the blackout that caused the accident - EKG, blood pressure and sugar levels all appeared to be normal. A CT scan also didn't raise any eyebrows. One of the only options that remained was epilepsy, so I'm scheduled to go for an EEG later today. Having now done some reading on the symptoms, I'm reasonably convinced that I had some sort of simple partial seizure the first few times, with a complex partial seizure that day in the car. In retrospect, I should have acted on the earlier "seizures", but as someone in adulthood who did not have seizures as a child, I think it's understandable that I didn't even think that it could be epilepsy. (I did however get a pretty serious bang on the head during a cycling accident as a teenager.) Anyway, if you're reading this, chances are that I don't need to tell you to NOT ignore the potential signs of epilepsy! I can only hope that this posting and efforts I hope to make in the future will help raise awareness, to help prevent others from placing themselves at risk.

Comments

Re: Where NOT to have your first seizure

Submitted by Cat Lady on Tue, 2006-12-05 - 22:41

You are lucky to be alive after that. I know that must have been scary. I don't think you could have known it was epilepsy. I had simple partial seizures (Temporal Lobe) for a long, long time. I didn't even know what to tell a doctor. Do I tell a medical doctor--is it a physical thing? Or is it a mental issue? Perhaps I am developing a psychic ability? Those are the things that crossed my mind. So don't feel bad for not getting your partial seizures checked. The medical media makes a point of telling you what the signs/symptoms of heart disease, diabetic disorders, cancer, etc. When have you ever heard of Deja Vu being a symptom? Most seizures occur without a brain defect being seen on any test. An MRI and CT scan would probably pick up a tumor, but only an EEG will pick up electrical disfunction in the brain and I have been told that the EEGs only pick it up about 1/3 of the time so even if that test comes up negative, it means little. I had an EEG and MRI about 10 years ago. MRI was fine, the EEG showed a left temporal lobe spike. The testing was done because I finally self diagnosed my TLE with use of the internet and sought help. The neurologist to which I was referred wanted to run tests to see if my diagnosis was correct. This fall, I had a Tonic-Clonic (Grand Mal) seizure while asleep at 4:00 a.m. (the seizure woke my husband who called 911 not knowing what was going on, this was my first T-C/GM seizure). The hospital gave me a CT scan which showed nothing abnormal. They told me to start seeing a neurologist again. The neurologist scheduled a MRI and an EEG and both showed nothing abnormal, but I know that I have TLE at a minimum. The neurologist explained that the test only is successful at diagnosing epilepsy about 1/3 of the time because you have to actually have a seizure while connected for the machine to pick it up. Unless you are constantly seizing, it isn't likely to show anything. I will tell you that I was put on Tegretol years ago and I stopped taking it after about a year. That didn't work 100% it just kind of kept the TLE from completely running its course. Now I am on Keppra and have not had any type of seizure or deja vu since I started taking it. The side effects and risks seem to be less too. Hope this is helpful. Know that you aren't alone, as you can see there are a lot of us here. Who knows how many are out there and undiagnosed like us.

Re: Re: Where NOT to have your first seizure

Submitted by wflisa on Fri, 2006-12-29 - 14:22

Hi, I am surprised that the Neurologist did not have you stay in the hospital for at least five days with an EEG on you 24/7. It is not difficult to induce a seizure. In fact I learned that if I wanted to, I could induce a seizure myself. I just don't want to. All "they" have to do is keep you up most if not all of the night, and reduce your meds to half or less. This is a guarantee for the MD's to see you have a seizure. I had two of these experiences just a few months apart (May and August 2006). I learned a lot. I was diagnosed with primary generalized epilepsy. Keppra is a wonderful drug, except for all the side effects. Best of luck, and be sure to ask your Neurologist lots of questions.As you said, you are not alone. We are all just beginning to learn what is going on. Lisa

Re: Re: Re: Where NOT to have your first seizure

Submitted by JBJ1984 on Fri, 2006-12-29 - 16:26

When they did my 24 hour EEG they sent me home with my head and body wired like I was a bomb, but the strange thing was they kept me on all of my meds. Up until last month I had had my first two seizures in my sleep so I figured that my EEG would be about the same. During the test I didn't have any seizures. I think it was because they didn't take me off the meds. Now they can't even diagnose what kind of seizures I have because of this.