Another intro post!
I was born in 1972 with hydrocephalus, or "water on the brain". I've had 17 brain surgeries, beginning when I was 3 weeks old; the two most recent were a week apart in July '04. My userpic was taken at the '02 Hydrocephalus Assn convention in Chicago, my hometown (although I've lived in Houston since '84).
In 1991 I was diagnosed with fibromyalgia.
I've been on anti-epileptic drugs (AEDs) for most of my life, starting around age 2 with phenobarbitol (I no longer take that drug). I was weaned off Tegretol when I was 20, and needed no further AED treatment until just before my last two revisions in '04, when my neurosurgeon prescribed Keppra as a prophylactic measure. I've taken a gradually-increased dose of Keppra twice daily since that time. I'm currently taking the maximum safe dosage, and *knocks wood* it seems to be working. Over the last eight years, I've also taken other AEDs in combination with the Keppra.
I was taking 300mg Lyrica (pregabalin), primarily to treat the fibromyalgia but also as a secondary AED. I've put on so much weight (a known side effect of Lyrica) that my dosage has been scaled back to 200mg/day, with only marginal success, I've lost ten pounds and have about another thirty to go.
For me, ever since the chronic fatigue syndrome (CFS)/fibromyalgia (FM) diagnosis, it's never been an issue of *if* I'm in pain, but how bad it is. I have to continually remind my doctors that the normal 0-10 pain scale isn't entirely accurate, as my tolerance for pain is pretty heroic--when my shunt fails and fluid reaccumulates in my brain, it's like there's a giant, overinflated water balloon pressing against my skull and my only respite, other than immediate brain surgery, is unconsciousness. Therefore, my "10" needs to be measured with that in mind. A "normal" day for me, insofar as the fibromyalgia is concerned, hovers between a 5-7.
I had a total hysterectomy in Jan '04, just before my husband and I met face-to-face (match.com set us up) for the first time. My only regret about the surgery is that, if I'd known hubby and I would get married, I would have held off for a year or two to see if we could have a child. Yes, we could adopt, but with my health the way it is now that's unlikely. I don't have the stamina to care for a young child, and the condition of my house reflects that. Oh well. As the saying goes, "Those who mind don't matter, and those who matter don't mind."
Anything else you want to know, either respond to me here or msg me privately, and I'll be glad to answer your questions.
:-)
In 1991 I was diagnosed with fibromyalgia.
I've been on anti-epileptic drugs (AEDs) for most of my life, starting around age 2 with phenobarbitol (I no longer take that drug). I was weaned off Tegretol when I was 20, and needed no further AED treatment until just before my last two revisions in '04, when my neurosurgeon prescribed Keppra as a prophylactic measure. I've taken a gradually-increased dose of Keppra twice daily since that time. I'm currently taking the maximum safe dosage, and *knocks wood* it seems to be working. Over the last eight years, I've also taken other AEDs in combination with the Keppra.
I was taking 300mg Lyrica (pregabalin), primarily to treat the fibromyalgia but also as a secondary AED. I've put on so much weight (a known side effect of Lyrica) that my dosage has been scaled back to 200mg/day, with only marginal success, I've lost ten pounds and have about another thirty to go.
For me, ever since the chronic fatigue syndrome (CFS)/fibromyalgia (FM) diagnosis, it's never been an issue of *if* I'm in pain, but how bad it is. I have to continually remind my doctors that the normal 0-10 pain scale isn't entirely accurate, as my tolerance for pain is pretty heroic--when my shunt fails and fluid reaccumulates in my brain, it's like there's a giant, overinflated water balloon pressing against my skull and my only respite, other than immediate brain surgery, is unconsciousness. Therefore, my "10" needs to be measured with that in mind. A "normal" day for me, insofar as the fibromyalgia is concerned, hovers between a 5-7.
I had a total hysterectomy in Jan '04, just before my husband and I met face-to-face (match.com set us up) for the first time. My only regret about the surgery is that, if I'd known hubby and I would get married, I would have held off for a year or two to see if we could have a child. Yes, we could adopt, but with my health the way it is now that's unlikely. I don't have the stamina to care for a young child, and the condition of my house reflects that. Oh well. As the saying goes, "Those who mind don't matter, and those who matter don't mind."
Anything else you want to know, either respond to me here or msg me privately, and I'll be glad to answer your questions.
:-)