atypical facial pain

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New Member

Date Joined Sep 2011
Total Posts : 1
   Posted 9/9/2011 2:12 PM (GMT -6)   
 Hope that I am doing this right! Not too computer savy.
I accidentally found this place, I have never in my 40plus years of suffering with this condition run into anyone that has it!
Have been to Dr's who in the beginning told me that it was all in my head.....yes, it is in my face and I would love to be able to share it with those various doctors.
Finally got a diagnosis from a doctor in 2004 ! I've had all of the drugs used to treat it over the years, most  doctors thought they were just Migraines.
I've been back & forth from the Dentist to the doctor for no avail until 2004. I finally got the insurance approval for a Pain Management doctor, had a few injections in my face (right side) and they did help. Lost my job, lost my insurance, so for the last seven years have gone to a walk in clinic where I was able to obtain the medication that I currently use.
To those of you out there, I use the generic form of Elavil (Amitriptylin) 10mg. You are supposed to take it everyday, but after so many years of using it, it was not working. I now only take it when I have an "episode"! Sometimes one will relieve it, today starting another episode and have taken 2 so far.
To those of you out there, do you get "episodes"? I can figure on 5-7 days each month, sometimes I will go for a couple of months without any.
It's been a rough 7 years without insurance, and finally in 2012 I get Medicare. Finally will be able to see a neurologist and hopefully get more relief.
I don 't feel so all alone with this now......Thank you all

Veteran Member

Date Joined Apr 2010
Total Posts : 2261
   Posted 9/9/2011 10:14 PM (GMT -6)   
Welcome to our chronic pain forum nanax3. I'm happy you found us but sorry that you have chronic pain. There are a lot of caring and supportive members here. I'm sure you'll feel at home in no time. I wish you good luck in finding a pain management doctor that can help you with your pain.

Take care. I hope you're having a low pain night.

Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Forum Moderator

Date Joined Mar 2011
Total Posts : 1276
   Posted 9/9/2011 10:42 PM (GMT -6)   
Hi Nana, and welcome to the forum. Like Loretta said, I'm sorry that you have chronic pain, but glad that you've found us here - a more caring and supportive group of people you'd be hard pressed to find.

With you talking about monthly 'episodes' of pain, I'd suggest keeping a pain journal - record what you do, what is going on in your life, your surrounds. Is there something that happens every month (your username suggests you might be a bit older, but are you still having a monthly cycle that could be triggering something hormonal for example?).

All the best - and hope it's not too long before you can see a pain management doctor.

CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

New Member

Date Joined Nov 2011
Total Posts : 5
   Posted 11/26/2011 8:09 PM (GMT -6)   
Dear NanaX3,

I had atypical trigeminal neuralgia for about 18 years, on the left side of my face. I took all of the usual meds one would take for it...elavil, tegretol,neurontin....nothing ever helped. I was in pain most days, so I certainly understand what you are going through. Four years ago I had an emergency stent placed in a left artery to my heart, and while recuperating in the hospital, I realized that I did not have face pain. I have be virtually pain free (at least in THAT area of my body!!!) for the past four years. I am convinced that this pain had something to do with the blocked artery to my heart....too coincidental. I do suffer with chronic neuropathy in other parts of my body, but no longer in my face.
I hope that you have been able to square out your insurance. Medicare is a real blessing!!!!

By the way, ice packs helped me more than any medication I took for the ATN.

Veteran Member

Date Joined Oct 2009
Total Posts : 5004
   Posted 11/27/2011 6:23 AM (GMT -6)   
Welcome to the forum NanaX4. I hope you will keep the pain journal as Laura suggested. I have to keep a symptoms and food journal to keep track of what triggers my GI and heart symptoms - they're linked.

Welcome also nopainplease. I hope you'll start your own thread. Your information about the stent stopping your face pain was interesting! I think ice is more helpful than meds a lot of the time too.
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