Tuesday, November 2, 2010

It Might Not Be Epilepsy?!

I might not have epilepsy.

Everything has happened so fast that I'm still processing the recent events.

I saw the epilepsy specialist on Monday. My mom came into town to accompany me since my husband was unavailable that day. After reviewing all the medical records I had sent over to the epilepsy center (including previous EEG's), interviewing me, and giving me a neurological exam, the doctor said that he did not think I had epilepsy.

What?! I looked at the neurologist in shock.

He said, "This is good news! You don't want to have epilepsy." I suppose he was expecting me to cheer or at least smile.

I couldn't smile. All I could think about was how the past year of my life was one of the worst of my life. Ever since starting epilepsy medications, I have felt sicker than ever. I nearly died in May from one of the medications. I'm losing my hair, my entire body is weaker than ever, my memory is worse than ever, and I have all sorts of problems I never had before.

All of the suffering and all of the pain over the last eleven months have been for nothing. I suffered through horrific side effects and put my body through tremendous stress for nothing. I almost died for nothing.

I wanted to cry.

I was suddenly angry at my previous neurologist. I asked the epilepsy specialist how I could have been so wrongly misdiagnosed. How could this have happened? How could my previous neurologist have been so wrong? Of course, the epilepsy specialist couldn't really give me an answer. I said that my old neurologist needed to know that he was wrong and asked if the specialist could send over a copy of his findings.

I am still going to have another EEG that the epilepsy specialist is going to review just to be sure. The EEG results that were sent over by my previous neurologist's office were a bit difficult to read because they were printed out on paper and condensed, rather than sent on a CD or DVD which would have made the spikes and waves easier to interpret.

At this point, I'm not sure what to think or how to feel. I think I am mostly in shock. I don't really feel anything.

I'm not going to get my hopes up just yet. I'm too afraid to believe that I don't have epilepsy just in case I actually do. At the same time, if I don't have epilepsy, I'm back at square one -- trying to figure out what to do to feel healthy. For a while, I had hoped that the epilepsy medications would "fix" everything that was wrong with me. Unfortunately, the medications seem to have done the very opposite and hurt me instead.

On the upside, I am now tapering off one of my epilepsy medications, Keppra. The epilepsy specialist believes that it is the source of many of my recent problems. I am hoping that the hair loss, extreme weakness, high cortisol levels, high triglycerides, and even some of my neurological issues will improve with time.

There is so much more the epilepsy specialist said, but I am too tired and overwhelmed to write about it.


cinderkeys said...

What a roller coaster ride. If it isn't epilepsy, I hope they figure out what it is sometime soon.

Laurel said...

So sorry all that you've been through. I know there are some people with ME/CFS who experience seizures. I hope you find answers soon. I'll be thinking of you!

upnorth said...

How could they be so mistaken over something like this? Oh I hope you find something to help you feel better soon.

Sue Jackson said...

Sorry you've been through so much, Alyson. But this is good news! One less diagnosis to deal with. So, how did the neurologist explain the seizures you had?

Let us know how it all turns out.


alyson said...

Thanks for all your comments! The funny thing is that I never thought I was having seizures until the neurologist told me I was having them. He diagnosed me primarily based on my EEG's and an interview. He said that seizures explained my brain fog, memory problems, sleep problems, and more. He even said that I would probably stop grinding my teeth in my sleep once we got the seizures under control. He scared both my husband and me when he said that if I hadn't started treatment it was likely my seizures would progress to the more severe type (where I pass out and fall to the ground) and possibly suffer permanent memory loss. Once I get a diagnosis from the new neuro, I will deal with my old one.