Thought I’d give you an update on how I’m doing. For the most part, I’m pain free, which is wonderful. Some days I still have severe pain though, usually if it’s raining, if I’m stressed out, or, surprisingly, if I laugh too hard (that really threw me for a loop, but I suppose it makes sense — the motions of the face while I’m laughing must irritate the trigeminal nerve). I still have a bit of breakthrough pain near my next dose, and lately, I’ve had breakthrough pain as early as five o’clock (my second dose is at nine o’clock in the evening). Sometimes it will hit me out of nowhere with no discernible cause, and those times have me scratching my head. TN is definitely still a mystery, and I think it will take some time to peel all the layers off this condition.
BUT when I think of where I was around this time last year, in excruciating pain and hopeless, I am ecstatic. Most of the time, I’m okay, and I’ve been able to handle the breakthrough pain well enough. It’s not constant anymore. And, I have a diagnosis. I finally have a reason why my eye and face hurt so much. That’s invaluable to me. And to think that if I hadn’t done the research, had given up hope…I’d still be in pain and depressed and probably suicidal (did you know that TN was once called the “suicide disease”? Because people, like me, were in such horrific pain that they killed themselves to be free of it. Scary). I can’t count how many times I had the thought that if I were dead, I’d be free of the pain. But I didn’t want to die. I certainly didn’t want to give up. So I kept going. I’m pretty strong — I’ve been through so much in forty years that I’ve had no choice but to be strong. But a weaker person, someone who hasn’t been through so much, might be tempted more. I wish I could help all of those people out there right now who have it and don’t know it. Going almost three years without a diagnosis or treatment (I don’t count the prescription painkillers) was absolutely hell and I hope no one else has to suffer like I did. (Yep, on Feb 3rd it will be three years). But you learn really fast what’s important to you. I managed to find my way back to writing and photography after pretty much giving them up. I couldn’t imagine never doing either one ever again. Even now, I can’t even believe how close I was to losing it all. It was sheer force of will that kept me going.
This new dose is going well. The only thing that’s really tough is the fatigue. I have severe fatigue from fibromyalgia and have a hard time getting up and staying wake in the morning. Add in a medication that makes me even more tired, and it’s not pretty. I’ve had a few incidents where I’ve more or less fallen asleep at work. Usually not doing anything important — it’s when I’m not actively focused on something that the sleepiness really hits. But I try to keep that to a minimum because I want to be able to do my job and I can’t if I’m asleep. Unfortunately, I don’t think there’s a way to fix that. I need the higher dose, so lowering it wouldn’t help. And I need the pain to be gone or minimal. But it sure beats having the pain, so I can’t complain too much!
Overall, I feel better and I am happier. I’m not gloomy (well, no more then usual) and I talk more (before, I didn’t talk if it meant complaining — I am not a complainer). I’m less depressed and I am writing and doing photography again. I have big plans to reopen my darkroom, which is in progress. I haven’t been able to see if anything in there — the low light or chemical smell — bothers my trigeminal nerve yet. So there may be a wrinkle if that happens. But I think I’d still find a way to do it because it’s such a big part of who I am, and I can’t not do it. I haven’t been in my darkroom for eight years now and I feel like I’ve cut off some vital part of myself. So I will do it, just how much and how much it bothers me is the question. We shall see.
There are other treatments besides medication, and I have not broached the subject with my neurologist yet. I’m sure they try to control it via medication, and move on to surgery/nerve blocks/etc when it can’t be. And mine for now is pretty well controlled. It is a progressive condition, so it could get worse over time.
I was thinking about some of the facial pain I’ve had in the past five years, and remembered a few incidents where I thought it was a tooth (which is really common apparently. Some dentists have diagnosed their patients with it) or a leftover piece of hardware from my jaw surgery 20 years ago that’s infected (I’ve had two infections and one rejection so far, and half of the hardware has been removed). And I wonder if those incidents were the beginnings of the TN, but obviously we had no idea until my eye started getting bad. One of my dental hygienists suggested recently that my jaw surgery could have caused the TN. But why it waited over 20 years to activate is anyone’s guess. I find this stuff fascinating and a bit scary. 😉
So that’s the story. I hope to get a handle on things even better in the months to come. But I thank God and my mother-in-law, who suggested I “be my own advocate” because that’s what set me on this path. I know it’s not over, that it probably never will be fully, but I’m headed in a good direction, and I am living life again. That’s a win in my book. 🙂