Friday, December 25, 2009

Seriously?! Epilepsy?!

I wrote this post on Wednesday, December 23, but it's taken me some time to get up the nerve to publish this post because of the life-changing implications and complications. I finally made the decision to make this post public because I made a commitment to share all my health-related experiences when I started this blog.

Today my husband and I went to the neurologist to get my MRI, MRA, EEG, and blood test results. I had the tests done earlier this month, but today was the earliest I could get in to see him for the results (he's got a full patient load because he's considered a top neurologist in the area, so it's difficult to get in quickly).

I fully expected the tests to come out normal. After all, they were only done just to be thorough; my only complaint had been regular headaches and increasingly frequent migraines. The good news is that my MRI and MRA results are entirely normal. Physically, my brain and brain arteries look good.

The crazy news is that my EEG was NOT normal. In fact, it was quite abnormal, indicating multiple "subclinical seizures."

WHAT?!

The good doc spent about an hour (AN HOUR!) with us asking me all kinds of health-related questions and answering my questions. Long story short, I've been diagnosed with "primary generalized absence epilepsy. Based on answers to his questions and my EEG results, he thinks I've had (or have) "absence seizures" (a.k.a. petit mal seizures).

The doctor has put me on antiseizure medications to see if they help my memory, concentration, sleep, and EEG results. The meds are depakote and neurontin.

Interestingly, depakote is sometimes prescribed to prevent migraines and neurontin is sometimes prescribed off-label for fibromyalgia. The depakote may help the frequency of my migraine symptoms, and the neurontin may help the new and unexplained pain I've been having in my upper back, neck, and arms.

The doctor is also recommending that I extend my Short Term Disability until I have been stabilized on my new medications.

Seriously?!

The doctor showed me an excerpt of my EEG results (the full thing is really long) and said he thought I'd be able to see the abnormal parts without him pointing them out. He was right. I immediately pointed to the wave areas of larger spikes.

Things are still sinking in. Only after I left the doctor's office did more questions come to mind like:
  • Are you sure?
  • What other reasons could cause an abnormal EEG?
  • When can I have another EEG just to be sure?
  • Exactly how many "subclinical seizures" did I have during the test?
  • Is this condition for the rest of my life, or is it temporary?
After doing some research on epilepsy and absence seizures on the internet I came up with a couple more questions including:
  • Most of the information I've read indicate that absence seizures are most common in children. Why would I develop this as an adult? or have I had it since childhood and it's just gone undiagnosed?
  • Are you sure?
The epilepsy diagnosis does not explain all my CFIDS symptoms, so it looks like I'm just "lucky" and happen to have both conditions (in addition to all my other conditions) unless we can prove otherwise. Yippee...

I still don't entirely believe I have epilepsy at this point. I'm not sure if I am in denial or if I just have a healthy skepticism. As far as I know (and based on observations by husband), I have not had any clinical seizures. I don't remember having any seizures (but, ironically, not remembering having a seizure is one of the symptoms of absence seizures).

I am going forward with treatment nonetheless because the EEG clearly indicates some sort of abnormality. That is something I can't argue. If my neurological symptoms improve, I might be more inclined to believe the diagnosis.

I've got an appointment with my regular doc on Monday, and I'm going to ask her all the questions I should have asked my neurologist while I was there. I'm also going to ask if it's worth it to get a second opinion or if I should wait and see if I make any improvements on the new meds. My next neurology appointment is in a month.

It's all still sinking in...

P.S. Merry Christmas to all who celebrate!

11 comments:

Sylvia said...

I'm so sorry about this, Alyson. Definitely not fair! Here's hoping the treatment helps some of your other symptoms. Considering how much energy the brain uses, perhaps getting it 'smoothed out' will help with the fatigue. Good luck with it and here's to a better 2010!

Jo said...

Just to echo Sylvia, it's not fair! It's been one thing after another for you. I'm always amazed by your determination and courage in the face of it all. I hope the medication gives you some improvement. All the best (((hugs))))

Anonymous said...

The course of your illness is so similar to mine.
I would guess that you do not have epilepsy, but you do have seizures. A nurse I know who also has ME/CFIDS believes that restless leg syndrome and the horrible muscle spasms I have are a type of seizure, brought on by whatever is affecting/infecting our central nervous systems.
I think you are fortunate, if that word can be used for we who suffer this devasting disease, in that, with the discovery of XMRV there is renewed interest in finding out the cause, and maybe a treatment. I hope you won't have to deteriorate to total disability, as I did, before some help is made available. Keep hoping. HUGS!

Joanne said...

Sorry to hear your news but all the symptoms you describe and now the seizures could be as a result of Lyme Disease rather than you are unfortunate enough to have several different illnesses.

I tried googling seizures and typically can't find any good references but Pam Weintraube touches on it here.
http://www.psychologytoday.com/blog/emerging-diseases/200812/shadowland-the-mind-neurological-lyme-disease-part-one

Also Dr Bransfield talks about it in his presentations to the conference in UK last year at http://www.lymediseaseaction.org.uk/conf2008/index.htm

I can't remember which of the two mentions seizures. Bransfield is this year President of ILADS http://www.ilads.org/

Pat Smith's daughter's symptoms included temporal lobe seizures and you can hear her talk about her daughters health here.
http://www.lymediseaseassociation.org/VideoView.html
also watch trailer http://www.underourskin.com/

Good luck with finding something that helps your symptoms.

upnorth said...

Hey Alyson,
Thanks for sharing...I hope that the treatment isn't too harsh on your body. I understand your skepticism....hmmmm I think I've heard of others with M.E. being diagnosed with a seizure disorder. Hang in there and feel better soon!

Dominiqu said...

Hi Alyson - I just wanted to encourage you. I had petite and gran-mal seizures for almost five years and I have suffered from CFIDS and FMS for over 20. I understand where you are at. As much as I can. I actually got healed from the seizures and don't suffer from them anymore but was unable to drive for over 2 years because of them. As a matter of fact, I caused a serious car accident from having a gran-mal and hitting the accelerator instead of the break. Seizures do change you life but they don't have to change it dramatically. The number one suggestion I would give you is to make sure those around you know how to remain calm and help you when you have one (if they are aware you are having them).

I wanted to let you know I am launching a blog to chronicle my journey with CFIDS/FMS. I thought you might want to read it. I will be launching it on Jan 1 but you can see what I have so far if you like. I will be linking to your blog as well.

My blog is, Four Walls and A View @ http://www.fourwallsandaview.com.

I hope you start feeling better soon and get all your questions answered!

Renee said...

Alyson
I am so sorry you are having to deal with this now. You have had so much to manage. Please know that you are in my thoughts and prayers.

beatricemdfr said...

Good luck, Alyson. I've been on Depakine, a form of Depakote, for a couple of years now. I haven't had more migraines but more tension headaches.

I wish you better health. Life ain't fair. It's a big poker game, and sometimes it sucks to be dealt a weak hand time and hand again.

Sue Jackson said...

Wow, Alyson...that's just incredible. I can understand your surprise! I hope that by now (we've been away) you've had your questions answered and have hopefully had some improvement in the medications. There's another anti-seizure medication that's often used to treat sleep dysfunction in CFS, but I can't remember what it is right now. I'll look into it for you.

I hope you were still able to enjoy some part of the holiday season and are feeling a bit better by now.

Here's to a healthier new year!

Best -

Sue

alyson said...

Hi everyone! Thanks for all the info, support, and advice!

Nina said...

Seems like your healthy skepticism is justified. No one even knows what CFS/ME is; how can they now say you have epilepsy?

I hope you can remain calm and snatch all the joyful moments that come. Sounds trivial as I write it, but I think it makes all the difference in the world.