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Old 04-29-2012, 10:37 AM
vbrys vbrys is offline
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Join Date: Apr 2012
Posts: 1
10 yr Member
vbrys vbrys is offline
New Member
 
Join Date: Apr 2012
Posts: 1
10 yr Member
Default Trigeminal Neuralgia - what helps me with the pain

Setting my alarm to take my carbamazepine in the middle of the night is what turned out to be the biggest savior with my trigeminal neuralgia. Before that, it had gotten to the point where most of the day consisted of the painful attacks. After that, as long as I take the medication every three hours while awake, things went pretty smootly, and I could resume eating and doing some of the things I previously could not. Here's what I experienced:

Triggers before I started taking meds in middle of the night:


going too long w/o taking the meds
cold air or room
drinking from a straw
Eating anything that is not eaten in small bites
Eating anything that is crunchy or requires
Sometimes, just eating period
Getting too hungry, thirsty or tired
Touch on my face
Tension in my neck, shoulders or face
Biting a piece off of something large, like a sandwich, burger, cookie, etc.
Somedays, before middle of the night meds, it was inevitable no matter what I did
Just plain chewing
talking
sometimes drinking period
sometimes, doing anything besides laying down

Triggers after I started taking meds in the middle of the night:

Not taking my meds every three hours
cold, although only if I'm toward the end of the three hours time period
touch on my face


What helps with an attack (sometimes):
taking meds in the middle of the night (1x seems to be enough, if I take them immediately upon waking)
a hot shower, lots of hot water on my face
laying down
raising the temperature of the room
Eating, if I am too hungry (hard to do, but it works)
Sleeping if I am too tired
Drinking if I am too thirsty
Sometimes, an NSAID like Advil, helps, but only if I do something else as well to address what brought on the attack. Apparently there is some inflammation in my face
Sometimes, I just have to take my TN meds plus meds prescribed to help me sleep and just go to sleep

The important thing to remember is once an attack is started, it's very hard to stop, so prevention is the key. Take meds on time, don't get too hungry, tired or thirsty (in order of importance)

The cure (in my mind anyway):

It seems to me that there's nothing to stop the pain except surgery, and even then, depending on your age and what kind of surgery you get, you are probably going to have to repeat surgery at some point. The meds work less and less over time. I concluded that right from the start, so fortunately I haven't waited very long (4 months). I learned something interesting about surgeons on this journey - surgeons in private practice are very worried about malpractice. Surgeons who work for a university are not. I'm guessing they have some sort of sovereign immunity. I went to a private practice surgeon and he had no interest in doing any kind of surgery on me because of my weight. A surgeon at a university, although probably just a decent human being by nature, just figured out what was the best surgery for my weight and proceeded to make a plan to help me. I might have suffered indefinitely if I just listened to the first jerk who said "lose weight and come back in a year and we'll talk".
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