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hi here is my pain story

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Unread 04-28-2012, 07:07 PM   #1
jfowler12
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Join Date: Apr 2012
Posts: 1
Default hi here is my pain story

Foods I Can Eat:

Overcooked Veg, Pasta, Milk (warm), Ensures/Protein Shakes (warm), Tea (warm)
Soup (no meat), Desserts
Eggs, Baked beans, Potatoes, Rice, Pot Pies (veg only), Cereal (soggy with milk), yoghurt

Foods I don’t eat often –hurts too much
Pizza
Bread

Foods I Can NOT eat
Cold Liquids (milk or shakes)
Veg (under cooked veg or raw)
Anything crunchy or sticky
Corn on Cob
Thick things (greek yoghurt)(hard to swallow)
All meat in any form
Anything requiring chewing


I am able to eat at the earliest 12 (noon) and find it easier to eat late in the day. Otherwise my jaw is too sore. I often wake with jaw stuck open and dry. I am usually hungry enough to eat first thing when I wake but choose not to due to the pain in my jaw.(Would prefer all food pureed – have not done this too often)

Things I have tried:

- Exercises (cause pain) (given to me by cousin who is a Physiotherapist)
- Night guard (cause pain)
- Pain meds (naproxen, Advil, Tylenol, etc)(nothing happens)
- Elavil 20mg at night/10mg in the am (helps with sleep not so much with pain)
- Acupuncture (varied results, tried 3 times)
- tylenol 1s (over the counter) (dulls the pain with out truly lowering)


CURRENTLY on codeine and nortriptyline

Symptoms

Jaw tires and get really pain after a few bites
Pain in jaw
numb chin
popping/clicking in jaw
Headaches
Tired all the time
Tension even when mouth is slack
jaw feels hot all the time

Could it be?
CRPS
RDS
trigeminal nuralgia
Neuralgia of some sort (nerve was snapped in the operation I had)


Year By Year

Year #
Pain Levels- Out of 10
Comments

Year of the operation (april 2008) Hard to tell was numb 5/6, Not to bad


Year 2009. 5+ Started feeling more pain.

Year 2010. 7+. Second half in crease in pain. Summer 2010 – crowns put in

Year 2011. 7+. Constant pain with a major increase in oct

Year 2012. 8+ too much pain. no longer truely enjoy food

*On Feb 1/12, I had 3 fillings done. The dentist used 4X time the normal (before the op probable 1.5X) injectable freezing and some topical gel. With all that I felt most of it. The freezing stuff only numbed the soft tissue.


Triggers

- ice to cool things (spasms and pain)
- hot (spasms and pain)
- touch (pain)
- chewing (tightness/pain)
- pillows (electrical shock)
- vibration (toothbrushes/bumpy roads)
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Unread 04-29-2012, 10:37 AM   #2
vbrys
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Join Date: Apr 2012
Posts: 1
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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