In January of 2007, after driving 15 hours cross country through the night from Morrison, Illinois to Mechanicville, New York, I woke up the following morning and had a grand mal seizure. Up until this point, I had had zero health issues. Doctors had told me I was in perfect health my entire life. I grew up playing sports and continued through high school and college. I had never had any surgeries or head injuries, and there was no family history or genetic predisposition to seizures. There was simply no explanation as to why I had all of a sudden had a serious seizure. One second, I'm driving with my friend on River Road, telling her about my Christmas break, and the next thing I know, I'm in the hospital. I had no clue what had happened, so I looked to my doctor to give me some answers because, after all, that's his job. The conversation I had with the doctor was absurd to me:
Doctor: Hello Diana. You had a seizure.
Me: (coming out of my post-seizure daze)What? A what?
Doctor: A seizure. A grand mal seizure.
Me: ...Okay. How? Why?
Doctor: Well, your brain is in perfect health and there's nothing showing up in your blood tests or body scans, so I don't know.
Me: What do you mean you don't know? There has to be some cause for this, I haven't been sick a day in my life.
Doctor: Sometimes these things just happen and we don't know what causes them.
Me: I don't understand what that means. This is ridiculous.
Doctor: I'm sorry, we just don't know what happened.
Needless to say, I was salty. He had no answers for me, he only gave me two options: one, I could go on medication for the rest of my life and not have another seizure. Two, I could refuse medication and risk a 50% chance of having another seizure at some point in my life. I was like, "Screw that, I'll take option 2, thank you very much." Why should I medicate myself after some freak accident? I won't have another one, I'm sure I'll be fine.
Well, I wasn't. I went back to college at SUNY Cortland and had a second grand mal seizure. At that point I gave in and started the medication Lamictal. I have had five neurologists in total, and to this day no one has given me any answers as to why I have seizures. They speculate and predict and advise, but never give me any answers. I've had tests up the wahzoo: two extended stays in the hospital, three EEGs, two MRIs (which are crazy scary, by the way), and one CAT scan. Nothing. Perfect health. I tried to reduce my medication, thinking one day I might be able to stop it. Reality is that once a person has two seizures, there is over a 90% chance they will have another one at some point. I'm a teacher. That's out of the question.
So here's what's up: I am 29 years old, in perfect health, with a clinical diagnosis of epilepsy and periodic dizzy spells. I have no answers, only treatments, and modern science has reached it's final conclusion that I should take Lamotrigene (the generic version of Lamictal) for the rest of my life. But don't worry, there are no serious side effects or birth defects associated with it. It's been around since 1994, it's great. I'll be fine.
...I'm not satisfied. Instead, I am left with an infinite number of questions. Why? Why should I accept this diagnosis? Why hasn't anyone explored the causes of my seizures? Can I do anything else to control my seizures besides rely on medicine for the rest of my life?
Which leads me to why I've started this blog. I've decided that there has to be more to my treatment than relying on a medicine that will be my crutch for life. I want to explore every option, every approach, every possibility that's out there. I refuse to let a medication control my life, and I refuse to accept that this is the only way to manage illness. I'm hoping that my blog will help readers that suffer from elusive illnesses like mine to see that life isn't always about accepting what we believe to be true about medicine. Why should I accept that a neurologist is the know-all end-all of seizure treatment? We still don't understand the brain for goodness sakes! I will share my imperfect life, difficult decisions, and crazy adventures into the world of medicine, and hopefully you readers will expand your perspective about medicine as we know it. I know that this exploration will broaden mine. And it's like I tell my students: Never accept what someone tells you just because of who they are. Question everything, explore life with vigor, and search for your own answers.
And that's exactly what I plan to do.
Diana,
ReplyDeleteI have had epilepsy for 20 years. It started when I was 9 years old with petit mal seizures, which are characterized as looking like dizzy spells. They can sometimes be hard to catch as many people may think that you're just kind of in a daze. I was always unaware that I was having a seizure. When I was 13, my neurologist took me off my medication because he said that many children grow out of these types of seizures. When I was 16, I had my first grand mal seizure. Pretty scary! My new neurologist put me on Lamictal and I have been taking it ever since. I have been given the opportunity to come off the meds but I have chosen to stay on the medication. Over the 13 years I've been having grand mal seizures, I've maybe had 10 total. In one instance, I was in my car, but had stopped in front of a building to drop a friend off. Thank God I wasn't driving down the highway. Another time I was in Atlanta airport and I hit my head on a pole. Most recently, I feel flat on my face, tore open my lip that required about 10 stitches, busted my front tooth out of place, which the ER doctor graciously "popped" back in for me, and had a nice rug burn on the right side of my face. In pretty much all instances, the seizures occured after either missing my meds or from not getting a good night sleep (7 hours at least). I am so lucky not to have killed myself or someone else in a car accident, or to have fallen down the stairs, etc. As for birth defects, I have a beautiful 3 year old who was born exactly a month early (which my dr. said is common with epileptics), but is completely healthy. I am pregnant with the 2nd child and am terrified of having a seizure that would not only put my life in danger, but also my unborn child. For all of these reasons and more, I have made my own personal decision that the medication will not rule my life, but protect it. I would be happy to answer any questions you may have. Oh and btw, of all of the EEG, MRI, and CAT scans I have had over the years, every single one was normal. You're not alone.
Kelly,
ReplyDeleteThank you so much for sharing your story, I feel better when I know that other people have to make choices like this too. And that you had dizziness growing up. Sleep can be a trigger for seizure activity in me too. I'm going to post about the seizures I had and what happened. I think people should be able to share what it's like to experience a seizure, it's so scary! I'm so happy you've been able to have a healthy family! It gives me hope that one day I might be able to have kids too. Who knows if I'll have any, but I'm on Lamictal too and it's an option I have one day. All of my tests have been clear too. It's so frustrating, right?!? It's also scary to think about what could happen if we have seizures in the wrong places. I feel like someone is watching over me! Thank you again for sharing, please add your comments to any of my posts as I continue to write!
Diana,
ReplyDeleteLiving so long with epilepsy, I have had many different emotions about it. I was originally diagnosed so young that I don't really remember what I felt like when I heard the news. I will say that I have had many emotions about it since we started a family. When I became pregnant with our 1st baby, I went to my neurologist and asked a million questions. I was basically given the option to stay on the meds while pregnant or to come off. I asked what the risks were and was told that there wasn't much information about it, but that the risks were low for birth defects. I chose to stay on the medication and had a fairly normal pregnancy (the exception being the early labor). Our daughter was in NICU for about 10 minutes and was released. She was only 5lbs 5 oz, but perfectly healthy and has had no problems whatsoever. When we moved, I switched neurologists and am SO HAPPY I DID!!! I cannot stress enough how important a good neurologist is. When I told my new neurologist that we were planning to have another baby, he had tons of information for me. For example, he said that the chance of birth defects is very low on Lamictal, and that during pregnancy, he wanted to put me on 5mg Folic Acid because that decreases the chances of birth defects. He explained it in so much detail. He also insisted on seeing me every month and doing blood work. He said that when you are pregnant, you have extra proteins in your body or something that basically dilutes the medication making it less effective. So, every month he checks my Lamictal levels to make sure that I have the right amount of medication in my system to be effective and prevent a seizure. I was furious that my previous neurologist had no knowledge and seemed to have no care about any of these things. Over the years I have had 5 different neurologists including the pediatric neurologist, and I have finally found one I am happy with. I suggest asking tons of questions of any doctor you see and find one who keeps up on research and medical news, etc. If they tell you: "hold on, I'll go look that up real quick" when answering every question, move on to another. It may be tedious, but when you find someone who knows what they're talking about and actually cares about staying up to date with the latest info, you'll be glad in the long run.
As far as experiencing a seizure, I have discovered some warning signs. Sometimes I notice them, sometimes I don't, but there are a few times that I've felt the warning signs and have maybe prevented a seizure. There are 3 warning signs for me. I get super tired all of the sudden, or I lose my train of thought and can't remember what I was about to say or do, or I start stumbling on words and stuttering a bit. When I notice these things, I lay down and take a nap, usually for an hour or 2. When I wake up, I feel completely fine and refreshed. I tell the people close to me what these triggers are so if they notice they can let me know. I also think it's REALLY important to tell people what to do if you have a seizure in their presence. If I hadn't done that, I probably would have caused all my co-workers to have heart attacks. However scary it is to you to have a seizure, imagine a loved one seeing you have a seizure. I can't imagine! Sorry that was rambling. It's great for me to have someone to talk to about having seizures.
You're not rambling! It really is nice to share, isn't it?? Especially with a person that understands. I wonder how many people have seizures of any type, or even illnesses that affect their daily living like this. The thing with me is that they happened out of nowhere in college after absolutely zero health issues. I feel like I need to try to find out my own triggers before I actually get dizzy or mentally start to break down. There has to be something that I can change that will prevent that from even happening, right? I'm going to look into some holistic approaches that might help. Let me know if you come across anything that helps you!
ReplyDeleteWhile holistic approaches have validity, don't drive yourself crazy trying to figure out what you can change or you can do to make the seizures stop. It's not that simple. I don't know if your neurologist has explained what happens when you are having a seizure, but the best way I can explain it is that it's like an electrical short. The electrical in your brain is firing off randomly out of normal pattern. While many times there are things you can avoid that may trigger a seizure, such as flashing lights, video games, hyperventilation, etc. there is nothing you can really change in your life to stop it. Even if you avoid all of the things that trigger a seizure, that doesn't necessarily mean you won't ever have a seizure. I applaud you for trying to find a more natural remedy and hope that you find something that gives you peace. There is lots of research out there about different types of seizures and different treatments. I knew a guy who had to wear a helmet because he had so many seizures. I took a philosophy class that talked about split-brain patients, which is pretty interesting stuff, but really crazy too! I also read a book about a Hmong tribe that thought epilepsy was a sign that someone was a shaman. There are many points of view on epilepsy and in your path of finding answers, you should read up on these different views just to become familiar and comfortable with epilepsy and realize that it doesn't have to be a stigma.
ReplyDeleteI was seeing neurologists all my life and they all did the same thing when i came in there office: Stand up. Walk heel to toe. Turn around and walk heel to toe again. Sit on the table and touch your nose while keeping your eyes closed. Same drill over and over again.
ReplyDeleteThen I was told about "epileptologists". Neurologists who specialize in epilepsy. Definitely the way to go and since they specialize in our issue, they seem to care more about it and can rule out other things a lot quicker. But yeah - still have epilepsy. :[