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.

New Neurologist Appt on Monday!

I am very excited that I was able to get an appointment with my new neurologist for Monday.

My new doc is an epilepsy specialist at an epilepsy center. On the recommendation of my local Epilepsy Foundation, I called back in September to try to get an appointment, but the earliest they could schedule me was for December. Though frustrating that I couldn't get in sooner, I took the delayed appointment as a good sign because so many people are clamoring to get in to see him.

On a whim I called the epilepsy center last week to ask if there was any way they could call me in for an earlier appointment if anyone happened to cancel. The woman I spoke with told me she'd be happy to put me on their list of people to call.

Well, someone cancelled their Monday appointment! And the best part is that I got the call on my birthday. :) What a great birthday present.

I have high hopes about this appointment (perhaps, too high?) because I have been experiencing growing disappointment with my current neurologist. He is not an epilepsy specialist and has more recently not been treating me with much compassion. My husband who usually accompanies me to my neuro appointments was shocked at how rudely the old neuro treated me at my last appointment.

I've been on too many epilepsy medications to count, most of which have caused (or are causing terrible side effects). I am losing my hair, my hormones are off balance, I can barely get up a flight of stairs (it's worse than usual these days), and I feel extremely weak all the way around.

The doctor didn't seem to think these things were that big of a deal. He told me to go find an endocrinologist to deal with my hormones because my case was "too complicated" for him to deal with. He then ordered a new EEG and some blood tests to try to figure out what's causing my weakness, but he basically brushed me off. In his defense, maybe he was having a bad day.

(Unfortunately, the EEG showed that I am still having seizures, and the blood tests showed abnormally high morning cortisol levels. The weirdest thing is that I still can't tell when I'm having seizures for the most part because I simply do not lose consciousness. I have plenty of brain fog, though. Did I ever mention that my old neuro said I probably don't have absence seizures? He now thinks they're simple partial.)

Either way, I'm happy to be going to an epilepsy specialist. I'll keep you updated.

A Fresh Start (for my blog)

I've been feeling particularly frustrated with doctors (two, in particular) the past couple of days, so I thought I'd cheer myself up by sprucing up my blog. Unfortunately, my brain fog is pretty thick right now, so I've made a few mistakes.

In trying to rearrange some the layout of my blog, I accidentally deleted some things I didn't mean to delete. If I deleted your blog (or if you blog about ME/CFS or epilepsy and it's not listed), please respond to this post with your blog address.

If you notice anything else that's missing, just let me know. Thanks!

I Think I've Won the Genetic Lottery

I feel like I'm watching my own life pass me by. My last post was in July. Suddenly it's October, and I'm about to turn 32.

I'm not a statistician, but the odds of having both CFIDS and epilepsy have got to be slim to none. Add in the fact that I have some not-so-common conditions (like thalassemia minor and unusual drug allergies) in addition to a combination of fairly common conditions (like PCOS and asthma), I am pretty sure it's safe to say I'm a medical oddity.

I think I must have won the genetic lottery.

This past year has been one of the most challenging of my life. If you're a regular reader, you'll notice I've modified the title of my blog. I've added my epilepsy diagnosis. The past year has been consumed with the exhausting task of trying (and failing) to find the correct combination of medications that works for me.

So far, no success.

I think that part of what is making everything so complicated is my CFIDS. My immune system simply does not seem to function correctly, so I don't react to many medications the way I'm supposed to. It's my dumb immune system that almost got me killed in May when I had an anaphylactic reaction to Trileptal -- an epilepsy medication. I'm still not ready to write about the entire experience, but you can probably figure out it was traumatic for me.

More recently, I reached toxic levels of one of the epilepsy medications I'm on. I started feeling extremely sick (more than usual) every day and would often wake up with my eyes rolling around with my head shaking. It was not pretty. We've backed off that dose, and I'm doing a little better (I think), but I'm still exhausted.

I have so much to say, but so little mental energy. Maybe I'll write another post in December...though I hope to write something sooner! ;)

How Can It Possibly be July?

I didn't exactly mean to take this long of a break from blogging... Thanks for all your patience (and hello to my new readers)!

So much has happened -- both good and bad -- since my last post. Oddly, most everything seems to involve large sums of money. Here are the highlights:

• My old car died, so I had to get a "new" used one. Where I live public transportation leaves much to be desired; thus,a car is a necessity. I have to admit, though, I was not that sorry to go shopping for a newer model. It was actually pretty fun. Unfortunately, we had to take out a loan because we didn't want to spend the money we had saved for our home down payment (see below). Fortunately, we got a good interest rate and hope to pay off this loan by the end of the year.
• Of course, not long after we plopped down a bunch of money for a car, a bunch of unexpected expenses popped up (it's funny how things often seem to work out that way). I started having uncomfortable tremors due to the antiseizure medicine I had started (Depakote ER). Writing and other fine movements became difficult. I stopped that medicine, started having even more seizures (simple partial), then had to try out some different meds. I had too many doctor appointments to count. Prescriptions and medical appointments -- even with insurance -- can get very expensive when you have so many of them.
• While all of the above was going on, we were working on trying to buy a home...something we'd been saving up for (the down payment, that is)for a few years. We saw quite a few houses before we found a "dream" home that was within our budget. It's got two bedrooms and two and a half baths. There are some minor problems and cosmetic issues we've been slowly working to fix, but it's been amazing to call this place ours.
• Not long after we closed on our home and before we actually moved in, I had a terrible reaction to the antiseizure medication I was on at the time (Trileptal). The reaction I had was anaphylaxis. I was alone at the time and had to call 911 for myself. I was taken by ambulance to an emergency room and given life-saving treatment. Because the reaction was so severe, they admitted me into the hospital to monitor my breathing. Though life-threatening, anaphylaxis has a fast recovery time when caught and treated early enough. I was released from the hospital the next evening. I ended up on short-term disability (again) for about a month. I'll write about this experience in detail in another post. I was pretty traumatized by the event.
• Most recently (this month, in fact), I started a new job. It has better hours, better benefits, better pay, and requires less energy. I'm sure you can understand why I accepted the position! It was tough leaving my old job after five years, but the timing felt right...especially after the rough year I've had. Having gone on short-term disability twice in one year was not my idea of a good time; however, I think it was my body's way of telling me to give it a break.

Anyway, I need to get to bed.