Friday, January 27, 2006

I need to vent before I explode.

If I hear one more person tell me that caffeine is triggering these headaches I'm gonna smack them.

I am sick and tired of people telling me that I'm doing something wrong by drinking diet pop when I've been drinking it for 30 years, my doc says it's okay, and I know from personal experience that the migraine part of my headache cluster of problems gets worse when I don't get caffeine.

I also will not stop seeing this doc. I like him. He's trying. He treats me like a person.

I also will not stop taking the supplements I have to take because I had gastric bypass surgery. I need those supplements because I malabsorb nutrients and vitamins and unless I want to add malnutrition to my list of diagnoses I better keep taking them.

I have four diagnoses, not one. I have migraines. I have atypical trigeminal neuralgia, or TN2 as it is now called by some. I have occipital neuralgia. I have allodynia. I also have a very sensitive system that reacts quite strongly to new medication and unusual procedures, including nerve block shots in the head and the medications that should help control the pain I feel. That is why I am hard to treat. It is not because I am non-compliant. I keep a headache diary. I tell the doc every single time I take a Tylenol. He has a list of the meds I take on a daily basis as well as a list of the meds I've tried and don't tolerate, including the ones that should help me but don't because I swell up, break out in hives, feel like I'm falling into a deep black hole with no bottom, get tingling sensations from my head to my toes, have nightmares that cause me to wake up screaming, and various other oh-so-fun-and-unusual side effects.

I am doing the best I can. I am doing ALL I can.

I've lost my job. I've lost my income. I've lost the ability to walk in the sunshine and enjoy the feel of it on my face without the light triggering a migraine. I can't spend a whole day shopping, or spoiling my grandbabies, or doing ANYTHING any more except being sick.

So, until you are in my shoes for a while, and I'd be more than glad to let you have them for an indefinite amount of time, stop thinking you know what will "fix" me. I tried the simple stuff. It's where I started. We're now discussing the prospect of shots injected into my brain to permanently numb the nerves that cause the pain - the only problem is, they can cause lasting and irritating side effects like permanent facial numbness, difficulty chewing and swallowing, and tingling pain that I would have to deal with for the rest of my life. It scares the hell out of me. Or we have the newest treatment - an electrode implanted in my hypothalamus to stop the transmission of the nerve impulses - this one is only done in 3 places in the world; one being in Italy, one at the Mayo Clinic, and one who knows where.

Until you face my personal demons, don't presume to know what will chase them away. Trust me. I'm looking under rocks for a gun. The problem is, the bullets don't fit.

1 comment:

FDF said...
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