Sunday, October 10, 2010

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! ;)


Jessica said...

Good grief! You have certainly got more than your fair share of medical issues. I had a feeling you weren't doing so well. I really hope the dr's find something that will help you. How frustrating! You'll be in my prayers tonight.

dominique said...

Alyson - I used to have epilepsy and CFIDS as well. I have the asthma thing to.

I had tons of trouble finding the right drugs. I even developed a new type of seizure that was determined to be a side affect of the seizure medicine. (I didn't know that could happen).

I know this is overwhelming and probably frustrating. Please hang in there.

Keeping you in my thoughts and prayers and sending you a big hug!

Jo said...

I was wondering if you were ok since we hadn't heard from you in so long. I'm so sorry this is happening to you. I know it doesn't feel like it right now, but it sounds to me like you've made a lot of progress in identifying the epilepsy and learning to manage it. The more we learn about ourselves and our bodies' idiosynchrasies the better.

I think you are pretty amazing the way you cope with these odds. Hang in.

upnorth said...

Wow sound rough. So sorry. I think you're probably right. I bet the CFIDS is at the heart of it all....still, it's not like you need anything extra.

I'm really frustrated with my sensitivity to drugs as well. While my dr. and I both think I have underlying viral infection as a cause or factor in my M.E., I can't seem to tollerate any antiviral without getting really sick from it.

Hang in there Alyson, I hope things start to improve for you soon.

alyson said...

Thanks for all the well wishes, everyone! It's been a rough several months. I'm hoping that 2011 will be my year.

dominique - what did you mean when you said you "used to have epilepsy and CFIDS as well." Are you healthy now?

Sue Jackson said...

Nice to hear from you again, Alyson - we've missed you!

Sorry you've been through such challenging times lately. I think we're all medical oddities. It's likely that all the dysfunctions in various bodily systems caused by CFIDS has led - directly or indirectly - to some of your other health issues. Many of us have multiple problems. I don't think it's a coincidence.

Write when you have the time and energy.