tic douloureax

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New Member

Date Joined Aug 2007
Total Posts : 2
   Posted 8/15/2007 8:15 PM (GMT -6)   
Hi, I am a 44 yr. old female and have been suffering with tic douloureax for about 2 years now. Ironically, I have a brain tumor (a facial neuroma) on the right side of my brain, but my td pain is on the left side. The pain is very bad, that is why I am writing this is red mad . It is not constant, but when it comes on, it hurts for hours. It can start as a sudden stab in my ear or cheek, or begin slowly. My left eye also suffers when I have an attack. My eye feels like it is on fire - and I run to put either ice or heat on my eye - anything to relieve the burning severe pain skull .
Does anyone out there have this? It is hard to diagnose. It usually does not turn up on x-rays. It is diagnosed just by history and description of pain.

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Date Joined Jan 2005
Total Posts : 9258
   Posted 8/15/2007 9:59 PM (GMT -6)   
Oh Dash!! I"m so sorry for the pain you have. I've never heard of this disorder but am here to hold your hand thru it all. Does your doctor prescribe pain meds for you? I hope he/she's easy to work with.

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Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)

New Member

Date Joined Aug 2007
Total Posts : 2
   Posted 8/15/2007 11:05 PM (GMT -6)   
The real term for it is: trigeminal neuralgia. It is basically the 5th nerve in the brain and that nerve controls parts of the face. I am supposed to take anti-seizure meds to control the pain, but I only take one at night. I tried taking one in the morning and I was a zombie all day and I have to go to work and be a mom!! I can almost deal with the stabbing pain in my ear and cheek, but the worst is my eye. I want to scream when my eye burns like that. Thanks so much for replying. What do you use for pain?

Regular Member

Date Joined Aug 2007
Total Posts : 69
   Posted 8/22/2007 10:34 PM (GMT -6)   
Dash, hi. I heard of this disorder a couple of years ago. I heard that the pain from this is absolutely insane. Is the anti seizure med the only thing that the doctor prescribes for you? You should definitely be in with a doctor that can manage chronic pain conditions like yours. I have heard that pain in this location is akin to having a severe toothache all the time. I can't even imagine what thats like. My nerves were violated when I got an infection in my vertebrae (Osteomyelitis). The damage from the infection left scar tissue in addition to the disk damage. The inflammation from the infection pressed on my nerves and shot pain up my spine like a lightning bolt. I can empathize with you. Good Luck!

Regular Member

Date Joined Jun 2006
Total Posts : 120
   Posted 8/26/2007 9:15 PM (GMT -6)   
Hi you are not alone in your disorder...I have trigemenal Neuralgia also..But mine is from a inoperable aneurysm....At first, it was just stabbing...Yeah just stabbing...!!!!  But then it got constant....No more stabbing, only sometimes..It is all the times constant horrible pain...Mine is mostly behind my left eye...It feels like someone is hammering a railroad spike in it at all times...( the location of the aneurysm and one of the cranial nerves..I beleive the one the deals with the eye...and my occiptial nerve behind the left eye is severly damaged also. ) I have horrible double vision, Where I am supposed to wear glasses all the time..But they cause me pain also...But I have found that topamax (anti-seizure med has helped alot with those ZAPS and pain...) But I also take 2 long acting narcotics dailt just to be able to get out of bed and to live a somewhat livable life...I got disability for dsabiling pain 18 months ago...It is a fight every day of my life...You are not alone....I have had it for 7 miserable years....Hugs, Cindy

Regular Member

Date Joined Aug 2007
Total Posts : 38
   Posted 8/27/2007 2:56 PM (GMT -6)   
the courage all of you have while dealing with such incredible pain humbles me to no end.  I just wanted to say that ......................prayers and blessings to you all
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