Sunday, December 19, 2010

I Don't Have Epilepsy

The title sums it up.

I apologize for the delay in my post. The past few weeks have been quite an emotional roller coaster, and the past year has been one of the most challenging of my life. Obviously, not having epilepsy is great news because it's one less thing for me to worry about, yet some of the happiness I should be feeling has been overshadowed by the anger and sadness I have surrounding the misdiagnosis. I do not understand how the neurologist that diagnosed me with epilepsy could have been so wrong. I only went to see him for migraines! Epilepsy wasn't even a consideration.

I am not exactly sure how to explain what's going on in my head, but I'll try.

I was diagnosed with epilepsy in December 2009 and was immediately put on horrible anticonvulsant medications that only someone who has taken them can understand. I suffered the consequences of the epilepsy diagnosis from December 2009 through November 2010, when it was finally determined that I do not  have epilepsy.

Medication side effects ranged from annoying and unpleasant to horrific and life-threatening. Some of the side effects were magnifications of symptoms I already experience from the ME/CFS, while others were new symptoms altogether. Medication side effects included extreme fatigue and weakness, difficulty going up stairs, twitching, trouble thinking and processing information, mood changes, hormone imbalances, mild rashes, swollen hands and feet, exacerbation of RLS, worsening insomnia, tremors, uncontrollable eye movements, nausea, headaches, dizziness, severe memory problems, hair loss, and anaphylaxis.

The last experience (anaphylaxis to Keppra) was the most traumatic. I was home alone when it happened and had to call 911 for myself. I still have flashbacks of the event when I see ambulances, hear sirens, or see the hospital I was taken to. I sometimes wonder what would have happened had I not called for help. Would I have suffered from more serious complications, or might I have died?

Even after I stopped the medication that caused the allergic reaction, my body stayed in a highly allergic state for weeks after the event. Additionally, I strongly reacted to the steroids I was put on – developing Cushing's Syndrome-like symptoms, including swelling of my face, fat pads on my shoulders and back, excess fat around my middle, weight gain, acne, and chronic yeast infections. Though I have not taken any steroids for several months, I still have some of these symptoms.

I went on Short Term Disability twice as a direct result of the epilepsy medications. The first time I took disability for epilepsy I was already on disability for another reason (poor reaction to a lumbar puncture), but the neurologist recommended that I extend it for about a month so that I could adjust to my new medications. The second time was because of my allergic/anaphylactic reaction to Trileptal.

Technically, I was not supposed to drive anymore because of the epilepsy diagnosis. Because I never lost consciousness, I made the decision to continue to drive myself to and from work (which is about 5 miles away). I stopped driving anywhere else, so my husband had to drive me to medical appointments and anywhere else I needed to go.

Towards the end of October, however, I made the decision to stop driving altogether. It was my understanding that I was still having seizures (according to my neurologist), even though I'd never once lost consciousness. I didn't like the idea of breaking the law (people with uncontrolled epilepsy are not supposed to drive in my state) or putting others at risk by driving with epilepsy. I started to ask around at work to find out if anyone lived close enough that they would be willing to drive me to and from work. One of my coworkers said that maybe we could organize some sort of carpool rotation where different people would drive me on different days of the week. If I had not seen the epilepsy specialist who determined that I do not have epilepsy, I would not be driving today.

Epilepsy is a life-long condition that affects every aspect of one's life. The neurologist that diagnosed me told me that I would be on medications for the rest of my life. He said that if I hadn't started medications, my seizures would likely progress to tonic clonic seizures (aka grand mal) and possibly permanent memory loss. I was scared about getting pregnant while taking epilepsy medications because of the terrible effects most of the medications can have on a fetus. I had a medical ID bracelet that would inform emergency medical personnel of my epilepsy diagnosis and allergy to Trileptal. I was terrified that the next pill I took would put me in the hospital again or kill me.

It's been said that if you really want to understand someone, you should walk a mile in their shoes. Well, I've walked about 10,000 miles, and I can tell you that epilepsy is not something to be taken lightly. I wrote a letter to the neurologist that misdiagnosed me to ask him how he could have misdiagnosed me. I am not expecting a response, but I think it is good for him to understand the consequences of diagnosing (or misdiagnosing) someone with epilepsy. (I will post a copy of the letter later. I first have to edit it for privacy reasons.)

This whole experience has made me a stronger advocate for my own health needs. I had doubts about the diagnosis to begin with, but it took a life-threatening emergency and nearly a year's worth of suffering for me to seek a second opinion from a specialist. From now on, if anyone decides to diagnose me with something serious, I will be seeking a second opinion from a specialist -- no matter how obvious the diagnosis seems or how expensive a second opinion ends up being (because it might be less expensive in the long run).

I now feel the need to do some research on the misdiagnosis of epilepsy. I want to know how common misdiagnosis is because I am concerned that my old neurologist might be doing this with other patients. If he read my normal EEG's as being completely abnormal with lots of seizure activity, how can anyone trust him to be reading other patients' EEG's correctly?

Sorry about the long post, but I've had a lot on my mind. Writing about it is cathartic.


kitty said...

Oh my goodness.. this is the first time I have visited your blog and I am sat here with tears in my eyes. I am so sorry about the misdiagnosis, what a journey you have been through. It's always good to let it all out I think and the blog is the perfect place to do that. So I'm pleased that you don't have epilepsy but I'm sorry about how much "having it" has affected your life. Goodness, I hope you do get a response from your specialist, even just for closure's sake. Best wishes to you x

Treya said...

My God Aylson... What a terribly tough year... I feel for you. JUst how was this error made???

THat must have been terrifying going into anaphylactic shock whilst on your own... IT;s a a scary enough thing I would imagine to ever experience anyway...

AS you know I recently was diagnosed with Lyme Disease. Before this a couple of years ago I was put on steroids and I had a very negative reaction to them, mainly with stomach issues. Later I found out that steroids are not recommended for Lyme patients... I can't remember if you were ever tested for it(western blot). If not, it's perhaps something to consider looking at down the road due to your strong reactions to steroids. HOwever after such a traumatic year and now this misdiagnosis I know the thoughts of considering all that kind of stuff at this point is probably a no go area : ) You of course need to process things and find your ground again.

I hope you have a peaceful and Happy Christmas xx

Anonymous said...

So what was it? I'm having same issues! Abnormal EEG, high am cortisol and horrible dizzy spells. They just put me on Topamax and so far its made me dizzier than my dizzy spells. Any info and feedback that you might have would help Alyson. So sorry you've been through so much.

Kitty said...

Anonymous, what reason did they give for your high am cortisol? Mine is high in blood tests but I doubt their reliability as waking up early plus getting a blood test done at the doctors would surely raise anyone's cortisol? I then had a 24 hour free urine test and it was "negative"....... I was like ermmm, negative for what? LOL I have no idea..

dominique said...

What happen to you makes me so freakin' mad! Errr.

I actually had epilepsy - petit and gran mal. It took me years to get diagnosed and I had a horrible reaction to one of the drugs. Actually developed more seizures!

To do this to someone who isn't having them is unconscionable.

I am glad you went for the second opinion and I agree with you that our health is in our hands and we have to be our own best advocate. Sometimes that is harder said then done because we do not feel well.

I'm not one for suing, but I think you may have grounds here. This, as far as I can see, was negligence on the part of the neurologist.

I'm glad you are doing better and I hope and pray that your recover completely with no ill side affects left.

alyson said...

Hi Kitty - Thanks for visiting my blog! I'm sorry I made you cry. It's been a rough year, so I'm hoping 2011 will be a better one for everyone. I added your blog to my list. I hope that's ok!

Hi Treya - You've had your own crazy year. I hope you're feeling better! I have been tested for lyme disease before (though I'm not sure what method), but it's probably not a bad idea to get tested again. Merry Christmas to you, too!

Hi Dominique - The scariest part about the bad diagnosis is that I would have been on medications indefinitely if I had not gotten a second opinion. I'm not big on legal action either, but it is something several people have encouraged me to look into. I don't want to ruin anyone's life, yet I do not want other patients to suffer like I did. Misdiagnosis can be deadly.

alyson said...

Hi Anonymous - Thanks for visiting my blog! I decided to answer you separately because my response to you is a bit long.

I am not a doctor, so I can only tell you about my own experiences. I definitely experienced dizziness and headaches from the antiepileptic medications (including Topamax). Sometimes symptoms passed after about a week or two, sometimes they didn't.

What kind of doctor diagnosed you and put you on Topamax? Was it an epilepsy specialist (epileptologist) or general neurologist? The reason I ask is because my EEGs were completely normal; however, the general neurologist who misdiagnosed me with epilepsy interpreted my EEGs as abnormal. Basically, he misread my results.

Make sure you tell your current doctor about your side effects. The best advice I can give you is to take control of your health. If you are not satisfied by your doctor or doctor's responses, find someone who listens to you. My biggest mistake was not trusting my instincts to get a second opinion sooner.

It might be expensive to seek a second opinion, depending on your health insurance situation. My second opinion cost me about $1,000 out of pocket (that's AFTER my insurance paid what they were going to pay). However, it was worth it. In fact, if I had gotten a second opinion earlier (i.e., before my anaphylactic reaction to one of the epilepsy medications), it would have saved me even money in the long run. Going by ambulance to an emergency room and then staying overnight in a hospital is very expensive.

I strongly encourage you to get a second opinion from an epilepsy specialist. If you do have epilepsy, a specialist can help you find the right medication for you that still allows you to maintain a high quality of life. If you don't have epilepsy, the specialist can tell you that, too.

I found my specialist through my local Epilepsy Foundation. If you live in the US, you can go to the national website at and type in your zip code to find the nearest group. You can contact them for recommendations. Alternatively, there is a "Find a Doctor" search button at the top of the Epilepsy Foundation page that you can use.

If you are in Canada, Epilepsy Canada lists epilepsy centres on their website at I don't know anything about these places, but I'm guessing they're a good starting point.

If you're not in the US or Canada, try some of the Epilepsy links on the right side of my blog to see if they can help you find an epilepsy specialist.

I wish you the best. Please feel free to post another comment or email me at if you have any more questions.