This is my brain. It is from an MRI/MRA with contrast that I had a few months ago (record identifier blurred out). This shows a cross-section somewhere about 1/2 way through. Expectant mothers commonly carry around ultrasound pictures of their pending children, but I have a picture of my brain. Yes, that is my nose on the right side… the image kinda wraps around.
Now that you’ve seen my brain, you can see that it looks normal. Unfortunately, to the doctors, it looks normal. Imagine having an invisible illness that neither doctors or normal people can see or feel. In fact, the image above was taken with a million dollar MRI machine and it could not find any anomalies. You have a rare condition called trigeminal neuralgia. It is a neurological condition that causes what can be described as the worst pain in the world. I will place it in the class of “natural” childbirth, kidney stone, and cluster headache pain.
Now, you have pain in 1/2 your face that makes you unable to do anything. All you can do is try to not move and hope it won’t kill you until it passes in a few seconds or minutes. It is debilitating and makes you just want to cut your face off. You now have two choices: death or drugs. That makes the choice pretty clear. The big problem comes with the only class of drugs that work on this pain. Opiates such as morphine, codeine, Vicodin, OxyContin, Dilaudid, Demerol, fentanyl, etc. do NOT work on this pain. Do you know how difficult it is to have level 10+ pain and can’t take a pill to get ride of it?
That leaves the drug treatment of trigeminal neuralgia to anticonvulsant drugs (aka. anti-seizure and anti-epileptic drugs). The side effect profiles of these drugs are incredible. They are for the most part just nasty drugs, especially the ones used to trigeminal neuralgia because they must be given in extremely high doses. People take them because they have to. I am on one of the front line drugs, oxcarbazepine (Trileptal). Most people start on that or carbamazepine (Tegretol). I was already on 300mg per day of Trileptal as a mood stabilizer but am now up to 1,200mg. Frankly, to me, that much Trileptal is as close to debilitating as possible.
To be mostly pain free I have to put up with a lot of shit. I have no energy and am pretty weak. I have stuff like ataxia and abnormal gait. That means I must walk with a cane because my feet don’t always do what I want them to do. I’m not dizzy, but have trouble controlling what’s going on down there. I also can’t sleep because of that shit I take. The energy I do have is enough to give to work. Someone has to pay the bills!
All this means that I can’t podcast and blog as much as I want to. I also can’t be as active in the podcasting, blogging, and local LGBT community as I want to be. Because the pain is as bad as it is, once you find a drug that provides relief, you become incredibly fearful of trying another one that will possible help as much with fewer side effects. Six months in and I am finally ready to take that step.
I never imagined that I’d be going through this at 28. I’m writing this as a piece of education. I don’t want sympathy. I don’t want people to feel sorry for me. For a good reason I just feel that I need to explain why I don’t respond to people like I want and why I’m absent from life right now. Of course, I’ve never been good at any of that, but now that I’ve totally lost it, I realize how important all of that is. Hell, it is a lot for me to even write this. It sucks; it’s life; put up with it. Depression has kept me in the house for years but never this bad. Before I could have at least left the house with some amount of prodding. Now, I can’t even muster the energy for much of that.
The good news is that I go see my neurologist Tuesday and will hopefully get on the path of finding a drug that helps to suppress the pain and gives me my life back. I want people to be educated on what I’m going through and know that I do care about them and will do my best to get back to being the Jason that I want to be. TV and movies aren’t my only love but they are the only love that I can currently embrace. Somehow I just have to know that it will all get better… no matter how hopeless things seem.
Tags: depression · lgbt · movie · movies · tv
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