First steps. What’s wrong with me?

Finding out you have temporal lobe epilepsy can be tricky. You may have very strange symptoms and cannot explain them well to doctors. If you experience simple partial seizures these symptoms can easily sound like mental health conditions and you might have to work very hard to find the right doctor for you. If you believe you are having partial seizures it would be wise to state that to any doctor you see.

You need a neurologist! Someone who specializes in epilepsy.

You will have an EEG and will have to answer numerous questions, maybe even starting from birth, on your health history. Finding temporal lobe epilepsy on an EEG can be lengthy, depending on where the seizures are happening. You may need repeat tests and you will also most likely need to do at least one sleep deprived EEG. If your case is severe, or your test results keep coming back “normal” you may need to be admitted into the hospital to have a VEEG.

I was put on a very long waiting list to get a VEEG done but other life circumstances came up so I took myself off the list. This would probably be the only test for me that could find the problem, as all my EEG’s were normal. I didn’t have one seizure, no aura’s at all, during any of my EEG’s. When you have a VEEG done you are admitted to the hospital, your medication dose is taken way down, and you are monitored on camera the entire time. You will stay for however long it takes for you to have seizures. At least that is what my neurologist told me. It didn’t sound pleasant…

Accepting you have epilepsy

For me I was in denial for quite some time. I just couldn’t believe that I could have epilepsy, especially when no one, and I mean not a single person, in my family had epilepsy. It didn’t make sense to me. Where did this come from?

I needed to take many deep breaths. The diagnosis of temporal lobe epilepsy was probably the best thing that could have ever happened to me. I finally knew what these “attacks” were that I was having and I knew how to treat it!

If you have recently been diagnosed with epilepsy you may be going through some denial as well. Look on the bright side. You now know exactly what the problem is and you can now treat it.

I didn’t tell anyone I had epilepsy for a while after my diagnosis. I couldn’t, not until I believed it as well, but I did buy a medical keychain that said “Epilepsy” in big letters on it and attach it to my purse. That would do for now.

Once I did start to full accept it I felt nothing but amazement. For me I had been having seizures most of my life without knowing they were even seizures. Now, I could actually treat them and stop them from happening. And what do you know! Medication worked, and still works to this day! I could finally take a break! Also the fact that anti epileptics worked for me helped me accept the fact that I had epilepsy. The medication wouldn’t have done anything if I wasn’t really having seizures.

Living with epilepsy unmedicated

I have simple and complex partial seizures of the temporal lobe. I do not have convulsions. I get my seizures in clusters usually lasting 3 days, unmedicated.

I would wake up in a fog on the bad days, knowing something was wrong, something was “off” with me. I couldn’t snap out of it, I was groggy and confused. I felt strange. Then it would hit like I had just been hit by a bus. I would get a massive complex partial soon after waking up then more as the morning went on, but they would get weaker until I was just having simple partials. But this could go on for days, and it was frightening. I couldn’t leave my house in fear of having one in public or walking into a busy road. When I wasn’t on medication I was undiagnosed and had never seen a doctor in fear I would be considered “crazy”. Living life with these seizures, without medicine, was hell.

There were a few times when I did go out, not knowing I would be hit by a seizure, where I ended up crossing busy intersections while having complex partials. My body must have gone on auto pilot because I made it across, although not remembering actually doing it.

The fear from these seizures was enormous. Not knowing what was going on was hell. And the fear actually got the better of me and that’s when I finally went to my doctor.

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