So it's been a while. I had a seizure in November as I got up in the morning for a Saturday seminar - the first biggy I've had in medical school; the first in 6 years. Ody saw most of it - thrashing around, blood coming out of my mouth & when I stopped breathing for what must have seemed like 10 minutes. He did really well and as he explained that I had a seizure over and over to my bewildered self he let me text my colleagues to tell them I couldn't do the seminar. Ody went to get cartoons, which I vaguely remember seeing since talking about it months later: Toy Story II and How to Train Your Dragon.
I believe I had cut my little poison pills down in half again at this point - perhaps a month or two before the seizure. I should have been keeping track with this blog, but I didn't want to bore you... which is silly. So, I was on a very sporadic 25mg two times/day. That's 1/4 of a pill - high margin of error.
Of course now I'm on 50mg bid (2x/day) and it's easier to chop. I have no neurologist and actually haven't technically been to see one in many years... I think my last exam was 4 years ago, but I have my ways of refilling and haggling with MAs who insist I come in. I'm going to be a doctor in 33 days, so I respect not wanting to have your patient unguided and unsupervised on your treatment plan, but the patient part of me feels a different way. What will happen with the next neuro I see? He (we'll assume as I've only had male docs so far) will frown upon my efforts that are so common amongst us with epilepsy to get off the drugs. He will test my blood levels and say that they are insufficient for a therapeutic dose and that I must take more. I will say no. He will say he will fire me if I don't because that is what he truly believes would be best for me.
Well, I truly know that it is not best for me.
New twist: pregnancy.
So, I was pregnant in August for a very short time and he/she decided it was a no-go. That was rattling since when you get pregnant, your whole view changes into a motherhood mode - planning what type of diapers you will buy, how you will afford anything but Top Ramen and which school you will choose for them. Then nothing happens and you go back to what you were doing. Very odd. Well, might be pregnant again - I'll spare you the details, but I'm 31 years old and there's a part of me that wishes I hadn't chose to go into medicine. You give up so much of your life. I might be just as happy working at the mill of my home town learning medicine for my family through herbal books and nutrition websites. I would have a family, a house, a retirement plan and I would not owe a quarter of a million dollars in debt (I've accrued over $17,000 in interest just while I've been in school).
So I've been doing my research and I've written an ebook on preventing neurological defects in your unborn child - all the supplements and lifestyle factors that will work to improve the development of the embryo. That's all fine and dandy until I started looking into my lamotrigine again. The approach I have found on PubMed is more of a "Well, it does seem to increase the chances that the baby will be born without a face by 3%, but I'm sure every other baby is fine."
You have no idea what you are doing. Now, I'm not saying that if a mother has seizures every day that that is a fine alternative to medication - cutting off oxygen supply may be pretty harmful (although people smoke while they're pregnant that that does the same thing for a longer period of time). Every case is different, although we are all treated the same.
But I believe off drugs I average a seizure every 6 months WITHOUT any lifestyle modifications. That is when I didn't think that drinking, staying up late and consuming large amounts of pizza, bagels and coffee would do anything for seizures. Think it would be worth it to me to have a lower IQ baby? Maybe one with autism or early onset Parkinsons? Nothing like that is studied - only physical defects that can't be ignored.
I stumbled upon a side effect that I had no idea existed (not surprising). Lamotrigine binds to melanin. This can cause blurry vision and changes in the retina - an area rich in this pigment. Know what else has melanin? Basically anything dark, like the many moles that are continuing to pop up all over my body making me nervous that I have melanoma. Know where else? Hair.
I'm always saying that the way I am naturally is beautiful. Take it or leave it because I'm not changing it. I used to dye my hair and then I thought, "You know, it's just the way I am" Gray at 30 doesn't run in my family, but I'm also the shortest and the only one with a neurological disorder, so maybe that's just me. Well, actually, long term lamotrigine can cause loss and graying of hair as it binds strongly to melanin and strangulates healthy cells that produce pigment. So all this time when people think that I'm Ody's mom (we're the same age), when he gets carded for wine and I don't, when people say "Oh, I wasn't expecting your wife to be so... old" could all be because I am carrying a toxic load of a pharmaceutical.
Know what else it causes? Arrhythmias and damage to your heart. I'm sorry, but with cardiac problems being far and away the most common killer in this country, I'd rather not have something else leading me there. I've been having premature ventricular contractions since last year. It's an uncomfortable flopping of my heart as it struggles to reset its rhythm in class - very distracting. Don't mess with the heart. I'd MUCH rather have arrhythmia of the brain and flop around every once in a while than take this poison.
Know how they discovered folic acid was necessary for pregnancy and why it is in all of our processed food? Because 9 out of 56 women with epilepsy taking drugs because they were told that was the best thing for them had major birth defects. 4 women had the screams and strain of labor leading to the death of their babies nearly immediately. The medical community furrowed their brows and thought, "Could nutrients matter??"
It's kind of like statin drugs used for lowering cholesterol and HMG-Coreductase inhibition. Hey dumbies, that enzyme you're knocking out does more than one thing and your depleting CoQ10, a crucial energy producer in each cell with mitochondria. But I guess you don't have studies yet, so prescribe away and see what happens, if you care to look. Never mind the reason why someone is producing cholesterol - just say it's genetics and look smart. Keep on thinking that the body is as straight forward as working on a car except you can take parts out and it still runs. How cool for you.
I am so annoyed at the medical establishment and their inability to treat people for cure. I have epilepsy = give me a drug
for life. No one has stepped up to be a detective. That's what doctors should be to me; detectives, not mechanics looking at everyone like they have the same physiology & must just have a deficiency in a pharmaceutical.
I read on Mayo clinic (on their very general article on anticonvulsants, for which lamotrigine does not typically fit with biochemically) that some minor changes may occur such as a wider brow... you mean like in Downs and Fetal alcohol syndrome? That's fine, it's probably just cosmetic - continue taking your pills. If I had a baby inside me with Downs, I might add, I'd love him/her with all my heart... but I'd rather not be wondering if it was my decision to take a pill twice a day that lead to it.
Oh, and I thought about the argument for having a seizure or two off meds whilst pregnant. O.k., so hitting the floor would be bad, especially if you're far along & the trauma triggered a birth response (giving birth during a post-ictal state...hmmm), BUT the low oxygen piece is theoretical based on fear without logical analysis of the situation. Fetal blood optimizes his/her use of your oxygen via myoglobin, which has a huge advantage over our blood comprised of hemoglobin. If I stopped breathing for 2 minutes, I think the baby would grab on to all the oxygen possible with higher affinity... and I'd wake up with a worse headache. If you had 3 seizures a day all throughout pregnancy, that's an issue, but I'd argue even if I had 5 seizures throughout my pregnancy (when I'm awake enough to have one) it wouldn't instantly create the type of pathology taking my medication every day will. With the great advances that happened when babies of epileptic moms started dying and being born with major defects due to folic acid deficiency, sometimes I wonder if I'm not just a number in an unannounced experiment.
