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Just diagnosed ~ any advice?

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Old 04-06-2012, 08:13 PM   #1
Join Date: Apr 2012
Location: Mid-Michigan, US
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survivalmode HB User
Question Just diagnosed ~ any advice?

So far nothing is helping these "face spasms" I call them. It started one week ago. Now I get them any time I eat or move my jaw around. They last 10-20 minutes and are excruciating ~ it starts in my lower jaw, then my upper, then in my nose, then above my eye (only one side of my face). The medicine isn't helping yet ~ I have to ramp up to a full dose of one, and the pharmacy had to order the other.

What helps?

What do you eat?

How do you deal with that unbearable pain?

Thank you for any help you can give me!

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Old 04-07-2012, 10:08 PM   #2
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Location: Pineywoods (northeast) Texas, USA
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Re: Just diagnosed ~ any advice?

I take Tegretol XR, and if I miss a dose I can get in real trouble for a few days. When I'm in serious pain, I take a hydrocodone and sleep (I am not employed)! I have trouble eating, too, and find that warm soup and warm grilled cheese sandwiches are edible with little chewing, and I chew on only one side of my mouth, taking it slow. I wish I had better help to offer. Have you learned what triggers your pain? This is the most helpful thing for me. I have recently been unable to sleep on my right side because the pillow starts my face/jaw/head hurting.

Old 04-09-2012, 10:38 AM   #3
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Re: Just diagnosed ~ any advice?

So . . . should I just plan to eat soft foods from now on? Eating is THE trigger for me. I even got one last night after eating jello. I'm just having trouble wrapping my mind around this. I just started Tegretol XR today. When you have a face pain/spasm/attack, what do you do to relieve the pain? It is unbearable. Narcotics don't touch it for me, and so far Neurontin is only making me groggy.

Thanks for the response ~ I really appreciate your input.

Old 04-09-2012, 11:09 PM   #4
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Post Re: Just diagnosed ~ any advice?

On second thought, my post was very unclear. What I should have said is that I recommend Tegretol, because it has worked wonderfully for me for years. I took everything I could find for pain (like Excedrin, etc) and so many NSAIDS that it hurt my stomach - without any success in easing the pain. The family doctor that I saw tried me on Tegretol just to see if it would help me, sort of as a test to see if I had TN or it was something else. I have no insurance, and she had researched what else could cause me to look like I had mumps on the right side of my face. It only took a few days for me to get real relief. I was ecstatic. I could rest, I could think, I could breathe, I could move around, it was amazing. Now I must add that I had not suffered 24/7, just severe pain in unpredictable "attacks".

You will get pain free in a few days, THEN you can find what your real triggers are. When my medicine is taken consistently, then I am pain free if I avoid pressure on my tender area of my head: putting on makeup, washing my face too roughly, pulling the hair near my ear too much for any reason. After I started the medicine, I had to learn about all these things. Before I learned about this, it almost always hurt to chew, to talk much, to shake my head, even lights and loud noises. Just because it hurts for you to eat does not necessarily mean that eating is your trigger. For a long time I thought mine was bright or close lights that I used for putting on makeup and/or fixing my hair. Until I was pain free and began putting on makeup in a regular, dimmer room and triggered a serious headache rubbing in makeup roughly.

When I'm hurting, anything might increase the pain. An because of the physical and time demands on me right now, I have missed my twice a day meds several times. Usually, I am pain free. You will be too, it just takes the right meds and time to figure out what your triggers are. One great thing about medicine that actually works is that you can also REST---and that does so much for helping you feel better. I've had great success with Tegretol since 2004. You are just beginning. I usually can eat anything I want to, unless I've accidently triggered a TN attack, (sometimes just extreme fatigue can also cause one) or forgotten my medicine a few times. It is important to take my meds consistently.

Hang in there, you're just getting started!

Old 02-12-2013, 11:42 AM   #5
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Re: Just diagnosed ~ any advice?

I take tegretol and neurontin and have learned my triggers. If I am careful and get enough rest, I am pretty pain free. But you never know when an attack will break thru. Hope you do okay, wishing you success with the tegretol, it has been my life-saver, literally.
Fibro,neuropathy,TN, failed acdf 3 level, stenosis of the spine, cvid

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