Tuesday, September 21, 2010

From Zero to Warp Speed Overnight........Maybe this is why I fight with food....

WOW! There really is not another word to explain how the last 48 hours feel. I wrote in here how I felt very little was happening about trying to figure out what is going on with my body and not losing weight. I had barely pressed the post button and that all changed. Since Sunday afternoon I feel like I have gone from stuck in neutral to moving almost too fast to think. So if this post seems a little disjointed I apologize, my mind is going a lot faster than my fingers.

First the back story, no one who has read my blog before needs to be told I have eating issues. I have covered this extensively. But what has become really clear in the last few weeks is something is triggering it. I do really well for a period of time (a few days, a few weeks) and then like someone throwing a switch I have a day or more when I just cant deal with food. I really hadn't noticed this pattern until I started working with Nick and focusing on my eating. He had asked me when we hit a previous couple days of anti-food if I thought it could be weather related, or something I ate the night before and I kind of blew off the ideas, they seemed too simple. But yesterday when I hit another hard day I did notice it was grey and rainy out and started to research if there could be a link with weather.

I started my searching with a question to Todd (who is now officially part of my team doing my metabolic testing this weekend, but more on that in a minute). I asked about weather and appetite research and he sent me some great information on Melatonin. I figured that was the end of the topic but boy was I wrong. That set off a chain of emails, phone calls and reading that has me for the first time in my life fully realizing maybe the food issues are NOT just me not trying or being emotional, that there may truly be a biological a cause here, and the ironic part, we may have known the cause for the last 15 years and just never put the pieces together.

This next part may be confusing, I will do my best to share this without going tooooo neuro-geek! If you read back in the blog I have mentioned many times my neurological issues in the 90's. At the end of a very long battle with Pseudotumor Cerebri (aka Idiopathic Intracranial Hypertension) in 1996 we realized that I have something called a Sulfa Conjugation Deficit Disorder. Simply put there are some enzyme issues in my liver that if I eat certain foods (anything high in Tyramine or anything with artificial sweeteners in it) or take certain medications my body totally wacks out. And for me this imbalance results in excess production of the fluid around the brain and spine (known as CSF or cerebrospinal fluid) and terrible headaches.

So why does this happen, because the enzymes that are out of balance in my body are the start of a long chain of events. For the geeks in the group...the chain is too much MAO (monoamine oxidase) is produced, MAO breaks down serotonin (so I have too little at times) and too little Serotonin lets the body make too much of the fluid.

The great part to the story is that we learned all this and resolved my medical nightmare by accident. I found an old article about CSF and MAO in the medical library and after I found that things moved VERY fast to finding my answer. I feel like I may be standing at the edge of another one of those moments.

In the 90's we stopped digging after we solved my PTC, we never went on to look at what else this might mean. For 14 years I have avoided certain foods and medications and never gave all this more thought til yesterday.

Being stuck on a plane for 3 hours I started digging for more about the Melatonin Todd had mentioned (got to love google and in-flight wifi) and how it all worked. Specifically I wanted to know if there had been any studies on Melatonin and Anorexia. I still thought I was on the sunlight path at that point, boy was I wrong.

One of the first things I started to see what that there was a link to serotonin and then I saw it.....MAO is involved in the Melatonin production process. Too much MAO can lead to too little Melatonin and too little Melatonin can lead to anorexia/anorexic tendencies. It was all there in black and white. At 37,000 feet I finally felt for the first time in 35 years that maybe this wasn't all my fault. That there could truly be a biological explanation for why I fight so hard with food at times, and it is all the same path that we already know is deficient in my body.

As I read more I realized that the sunshine path wasn't important (or was a lot less important) but it was Nick's other suggestion that was probably on track....it is things I am eating the day before. The same foods that have the potential to trigger my CSF issues are possibly the cause of my eating issues also. In full disclosure I had a hot dog Sunday at the farmer's market, I know it is not a safe food for me, but I wanted it so I took the risk. That single hot dog could very well have been the trigger for my bad eating days the last two days. Something so simple could be behind all this, as it was with my years of spinal taps and surgeries for PTC.

I have spent the last day picking the brains of people I respect on this topic, including my previous Neurologist, and it seems like this is a real possibility and I thought that is where this would stop for now. At this moment there was nothing concrete I could do to know if my Melatonin was off or even go farther with the theories.

Then tonight I came back to my hotel and had an email from the nutritionist I saw a few weeks ago. One of the tests he had done on me finally came back. The test measured Adrenal Gland related levels. One of the results was a DHEA. DHEA is also part of this overall system (it is broken down by the same enzymes in the liver that we know are abnormal for me) and as I flipped through the results I saw it, my DHEA was elevated. Back to google and I learn that Melatonin and DHEA are often linked, if one is up the other is down. Yet another sign that this may really all be tied together. I may finally have an answer. And even if I don't have an answer, we have a path to examine.

So what comes next.....

I have an appt with the nutritionist to go over the test results (I have mixed feelings on this as he kind of bailed when I wasn't eating, but he is very knowledgeable on all this neurochemical stuff so I figure at least I will gain more information if nothing else)

Todd is redoing all my metabolic testing. I am having my Calorie Point (calories needed to just exist) test and my Cardio Point (heart rate ranges the highest percentage of fat are burned in) test repeated. We are also going to go over all my old blood work and see if there is anything obvious we should be re-examining.

None of this may come to anything, but I have to admit if even if this just a false blip on the radar, it has helped me a lot by just making me feel there is hope. That there could be a biological answer for all the struggling I am doing with food. That I am not just weak and unable to cope with food, but that there could be a reason this is happening. Even if Melatonin isn't the right answer, it has me back on the mission to find the answer.

PS for the geeks in the crowd.... the graphic at the top is a ribbon diagram of an MAO molecule.

1 comment:

  1. Did you ever consider keeping a food diary? good and bad things you eat...this could also help narrow down certain things you might want to avoid or days where you may need a supplement (if you find a supplement to help with the Melatonin levels)
    just a thought, though you probably already do something similar,
    Hugs and keep on keeping on girl!