Sweet Relief

I'm addicted to sugar. Plain and simple. I know better, yet I still eat too much of it, especially if it's in the form of chocolate. However, I've been developing this theory that since sugar and caffeine, which I've already easily given up again since I used to be LDS (Mormon), are so stimulating to our nervous system, I believe that there are certain symptoms of multiple sclerosis that can be exacerbated when too much sugar is eaten. Of course, this is only my personal experience (though there are some others who share this view).

I used to have chronic trigeminal neuralgia (TN), an **extremely** painful condition involving one of the cranial nerves that innervates the facial muscles; it is sometimes referred to as "The Suicide Disease" - OUCH!!!!! I have even been hospitalized and put on morphine for this. Then I started noticing that sugar and caffeine would trigger the pain. I began abstaining from both of these neural stimulants and it helped immensely. However, I still had some pain from the TN, so my doctor gave me tegretol for it. The tegretol helps a lot; I still have some breakthrough pain, but it helps so much I have been able to eat sugar again. (I still refrain from caffeine because any time I have it it feels like a lead pipe is being shoved through my brain!)

So lately I've been wondering if the sugar I eat can increase some of my other MS symptoms. I also have these seizure episodes, where I become nonresponsive and my muscles become extremely weak and I am unable to move. I am able to hear those around me, but I cannot respond. The Keppra I take helps immensely, but I still have these episodes sometimes. My dissertation advisor once remarked that it seemed like I was more prone to have them when I ate a lot of sugar. Well, today it happened again. I had two doughnuts for breakfast (oops!), and about an hour later I had one of my episodes. Luckily someone caught me before I hit my head on a file cabinet.

I am now going to keep a personal "lab notebook" and journal my daily activities and diet along with my MS symptoms. I know, many patients already do this and I had been advised to, but I didn't want to. I hated giving this disease any more of my time than it already had, but now I'm curious. I will begin trying to drastically limit my refined sugar (we'll have to see about honey and fruits) and see how it goes. In addition to managing the pain, I believe there will be a marked improvement in the number and severity of these seizure episodes.

To be honest though, these episodes are so far and in between that I'm not sure that's enough motivation for me to give up chocolate and other desserts. I need more motivation. (It's true - I'm addicted!) Therefore, earlier today I emailed my neurologist to see what she thought of the idea of halving my tegretol medicine, so that perhaps I could get enough breakthrough pain of the TN to motivate me, but an amount that could be managed with the sugar abstinence. Trust me, the pain from trigeminal neuralgia is ample motivation to not eat sweets!!! My mother thinks I'm crazy to gamble with such severe pain like this, but I really think the sugar is messing with my other MS symptoms; and I'm being honest here - I am just too weak to abstain any other way! It's sad, but true.

That's the way I am. I'm strong enough to control my vices in big decisions but not in the tiny moment by moment ones. For example, I do not subscribe to cable or any other service that will bring televised programs into my home. Why not? I *love* television (CSI, FBI files, Two and A Half Men, British comedies, Discovery channel, etc. etc.) I would watch tv all of the time. I would lack the willpower to just turn off the tv when a show I wanted to watch would come on; but I can control it from the grand scheme but just not having it in my home. Likewise, instead of saying "Hey eating sugar could cause some problems for me hours or days from now, don't eat it!" I have to have immediate agony. I'm like a rat being trained in a maze with electric shocks! So sad.

I will be interested in seeing what my neurologist has to say about this. She is wonderful really, and is always willing to indulge me and listen to my opinions. I am a difficult patient sometimes because I know just enough neurobiology to make me dangerous, and I can be very opinionated in what I want when it comes to my health care. Fortunately, my doctor appreciates this and we get along very well. I feel very blessed to have her as a member of my health care team.