EEG Tomorrow

Tomorrow I have the EEG the epilepsy specialist (a.k.a. epileptologist...I think) ordered for me. I'm looking forward to this latest EEG because I'm hoping it will help give me some sort of definite answers.

Because I want the good doctor to have as much information as possible before he makes a definitive diagnosis either way, I called my old neurologist's office earlier this week and asked if they would burn a CD of my previous three EEG's and mail it to me or to my new neuro. (If you'll recall, paper printouts of my previous EEG's were sent over to the epilepsy clinic rather than electronic versions.) They agreed to mail it to me (though I'm not sure why they didn't want to mail it directly to the epilepsy center even though I'd already signed a release form...). I should be receiving the CD in the mail any day now.

My hope is that with four clear EEG's (three old ones plus the one tomorrow), the epilepsy specialist will have a much better picture of what's going on in my head -- literally!

In other news, I've been tapering off one of my epilepsy medications, Keppra. I've been on a lower dose for over a week now, and I am starting to feel a bit better. While on higher doses of the medication, I was having the worst brain fog ever (even worse than normal ME/CFS brain fog), terrible memory issues ( I would forget what I was doing or saying in the middle of doing or saying it), horrible weakness (getting up stairs was worse than ever), head tremors, eye rolling, and more. I've also suspected that the Keppra was causing my hair loss and exacerbating my restless leg syndrome.

I still have brain fog, memory issues, and weakness, but they seem to be improving bit by bit. The head tremors and eye rolling have nearly stopped, my RLS does not seem to be quite as intense, and my mood has improved. On the down side, I've had terrible headaches since I've been on the reduced dose. I've gotten headaches every time I've started a new epilepsy medication or increased a dosage, so I suppose it only makes sense to have the headaches as I'm lowering the dosage.

I can't wait to be completely off the Keppra. I've suspected for a while that this particular medication was causing side effects, but my old neurologist thought I should stay on the medication (even though I kept complaining to him).

From now on, I will trust my instincts and be a stronger advocate for myself.

I can't remember if I've already mentioned this in a previous post, but ever since I started the epilepsy medications nearly a year ago (December 2009, in fact), my triglyceride levels have been extra high. More recently, I learned that my cortisol levels are high as well. My body demonstrated the effects of having high triglyceride and cortisol levels in a textbook fashion -- I gained quite a bit of weight, mostly around my middle. I looked pregnant without being pregnant. At my worst, I could no longer fit into most of my work slacks; however, I refused to buy new clothes because I didn't want to accept my new rounded shape.

To try and combat these issues, I started taking omega-3 krill oil -- which has no fishy aftertaste -- for the high triglycerides. I was taking fish oil for a while, but I got tired of the fishy aftertaste -- which I got even from the supplements marketed as being "odorless." Then I resumed taking phosphatidylserine complex (which I had been taking for the ME/CFS but stopped when my list of drugs and supplements became overwhelming) for the high cortisol.

I think the supplements must be helping, because I can now fit into more of my clothes without the assistance of my really uncomfortable waist cincher. I have not had my triglycerides or cortisol retested, so my evidence at this point is purely anecdotal. I'll take it, though. Fitting into the right sized clothes is good for a woman's ego.

I won't get my EEG results until the next week or so, but I'll be sure to post an update.

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.