Trigeminal Neuralgia Support Group
Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.
Hi, I first had symptoms of TN in 2017.
As with most sufferers, it started with what I thought was tooth ache.
so I visited my dentist, who did an x-ray, and told me my teeth were fine. He said that I was
most likely grinding my teeth whilst asleep.
I accepted his account, the pain went away, but returned a couple of months later.
My pain is what I can only describe as a creeping intense pain which numbs the side of my face.
starting in the back of my lower jaw, then quickly rising up to my eye. Lasting anything from 5-20 mins .
I then decided to google my symptoms ( not always recommend) .
Most of the symptoms coencided with what I had. However I thought it best to consult my GP
My GP had about as much knowledge as me ! No actually I knew more than her. All she did was google
just as I had done.
She then asked me! what I thought about what steps to take !
I said that I was aware that it’s usually pain relief. But I said that I didn’t in the intereim want to start
on strong medication. She said well I will just give you a prescription for Carbamazepine 100mgs.
I was advised to take if the pain became unbearable. She never suggested an MRI, ( but I was secretly
thankful ) I am a MRI Radiographer ( slightly claustrophobic) so I wasn’t that bothered.
But having read that other people have said that it doesn’t always show anything. That is true, but sometimes
it does show one of the cerebral veins enlarged. I have read about various types of surgeries, I hope I
never get to that stage, but I’m ever the optimist.
I have very quickly become aware of triggers which can affect this condition.
In my case so far I have stopped having Bananas ( potassium apparently the culprit ) also turmeric tea, and anything
that is too cold, even air conditioning, which I only have in my car.
So for me, it will be trial and error, cope with the pain if not too bad. Take vitamin B. And to become aware of any other triggers.
And when the need arises, I shall be taking my prescribed medication, not too soon I hope.
I hope your not all falling asleep! But it’s so good to be able to speak to others who are unfortunate
to be suffering from the same debilitating condition.
Thanks
My MRI nor CT showed anything unusual. Hopefully you will have remissions like I do but I'm beginning to think I should stay on a maintenance dose forever.
Good luck. TN is no fun!
This is the nerve that IS also the ONE Dentists keep you in fear of when they do a root Canal it enters from the outside to the inside of the mouth VIA a channel between the "I " tooth and the First Molar. it was not bad until the ends tried to grow together Forming a large BULB that hurt like Hell when touched . I had 4 surgeries to trim the bulb and One more tooth removed that was healthy. Despite that IT HAD TO COME OUT . A MANIAC Doctor Decided after 4 Surgeries with shorter intervals to REMOVE the ENTIRE NERVE ROOT form the "I tooth to the Union of the face and GUM line . And back around to the midline of my Lower JAW. He left billions of Fibers that Never DIE just Compete for medication to control their anger . in all 5 inches of nerve root . On the return line the Far end of the Nerve runs thru the GUM CAVITY to the brain. And I am familiar with every millimetre of the journey. As I am thinking about it its Setting up for a HELL storm today and it will dynamite a Similar headache that accompanies it . IVe had the Worst possible method to Calm this And like the rest Brain surgery included RADIOCULPATHY NOTHING WORKS. I had the ITOOTH removed NO ANEASTHETIC I simply smiled as it was removed that felt GREAT As it Came out. the pain subsided.
I then had My Doctor INJECT DEPO MEDROL directly into the OPEN end of the Root as it entered the GUM at the I tooth. If your scared of Needles this has to be the Cure all for that Phobia. I have never feared them however I did STAND TOALL AND SILENTLY scream as He inserted the needle. Now You could give me 10 Spinal taps and I would never complain .
After ALL we are Discussing the Single WORST PAIN KNOWN TO MAN!
It IGNORES MEDICATIONS. thus dont expect miracles. I an now LOST for surgeries to be done GREAT What was done was the WORST PAIN 10 fold I have ever encountered And If you have read a few of my Medical Wars IVe had any Injury that can inflict Permanent pain . Neurological or BONES OR MUSCLES. I have 7 Broken Vertebra in my neck that ALL OF them 8 in my Lower Spine. Broken both hips Pelvis Femur's tibias Arms Every Rib at least once . Jaw Skull Cheek bones Enough lacerations to hold the next 24 hour Formula one Grand Prix . I am a Physical Disaster. From ae 4 I began my self destruction that the Evil Knievel . cannot match.
TGN is a short Root And thus Easily sets up the Worst headache you will ever have When they begin you must end them instantly or your in for the longest Battle to eliminate pain you will ever have . MOST IMPORTANTLY TGN_N requires 24 7 medication Every day of your Life . Never miss a dose or cut the dose to close to minimum . ONLY Medications in the Neuro Epileptic Class are Able to terminate and control this pain . PLUS CODEINE or Tylenol 3
I am Able to suppress nasty pain I am far too used to it . I only use 8 T 3's per day anmd 3600 ,g og Gabapentin EVERY DAY 3 1200 MG doses . I also believe Dilantin plays some role in my success's. Also Quetiapine
MY MIX is 3600 MG Gabapentin 2 4 times a day T 3 and 300 mg of Dilantin at bedtime . LESS than that is Cruelty to man .
I do stress test my doses regularly few people do this. A friend of mine wanted to use Gabapentin for his spinal issues and HE just could not . I asked his doctor to help him ween form a 5 year life of morphine and He Did them Swap the MORPHINE for CODEINE. at a good dose HE did . When He shifted to the COMBINATION NO side Effects were Felt While on Codeine
POINT I MAKE GABAPENTIN DOES NOT MIX WITH MORPHINE DONT TRY IT .
you will be requested to Titrate the Gabapentin until the pain is under control and your happy.. initially your dosing will bounce around Dont Give up. This is a nasty. So dont give up There are Pain remedies for this Worst Known pain So your not the WIMP its all REAL dont go my Journey you will make it worse I have struggled with this since November 10 1968.50 years. AS I get Older I know My pain tolerance will waken I am not looking forward to what lays ahead .
I only wish you all freedom from this pain unfortunately My Journey to The here after is my cure.. Ive in the times of the Worst headaches and TGN Cursed the Doctors for resuscitating me. I do not submit easily.
Peter
GABAPENTIN ( Neurontin) is FUNNY I listened to CRY BABBIES complain of Weird side effects When none are reported form the patent holder of Neurontin . ??? soon I learned from this group that they were Using MORPPHINE, not Codeine.
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