Trigeminal Neuralgia

Trigeminal Neuralgia History - Debra Campbell

This is a condensed form of my history with the disease called Trigeminal Neuralgia.

Before Trigeminal Neuralgia

Oct. 1997: I had a very painful root canal done at the dentist. Five trips to the dentist and he had to pull the tooth anyway. (After all of that torture!)

Jan. 1998: I have added this information just in case anyone else has had this happen with their own Trigeminal Neuralgia background. Email me if you have had a similar experience before being diagnosed with TN. Thanks! There is probably no connection to TN, but you never know!
Out of the blue, I had some kind of episode in my right eye that lasted approximately one minute. It was as if everything had a halo surrounding it. When looking at bright objects or light fixtures, little lightning bolts came jumping off of them. Five minutes later the same thing occurred and lasted another minute. This was not floaters! Scared the heck out of me! Went to the eye Doctor the next morning and he couldn't find a cause.

The Nightmare Begins

Feb. 1998: I will never forget this day! I had been at work and had popped a mushroom into my mouth. As I bit into it, I felt an intense electrical shock like nerve pain on the right top of my molars. It felt like I had bit into a live nerve. I went to the dentist immediately. X-rays negative. No problem found. The next day while washing my face I had another huge pain. It felt like a lightning bolt going from my cheek through my brain. (Trigger; pressure on right side of cheek) The pain almost knocked me over! I went to the family doctor and had a Cat Scan. Ruled out TMJ. The doctor referred me to Dr. Dorf (sinus doctor).

Mar. 1998: I was now having one or two BIG pains every day. Triggers; chewing, washing face and brushing teeth. All on the right side of my face, teeth or tongue. The worst pain that I have ever experienced happened when I touched the right side of my face with a wash cloth. Another (much more powerful)lightning bolt of pain so intense that it threw me against the wall behind me. Sure, the pain only lasted a few minutes, but they were the most agonizing moments of my life. Now, I wasn't just scared, I was petrified! I went back to Dr. Dorf and he ordered an MRI. The MRI showed a small retention cyst or polyp on the floor of the right maxillary sinus. The doctor explained that the polyp was pressing on a nerve and was causing the pain. (little did he know!) The Doctor prescribed steroids, antihistimins, and a cortizone inhaler. Pain seemed to ease just a bit. But much more frequent. Now I was having jolts of pain when talking also.

April 1998: The pain was the same but much more frequent. Have been taking meds prescribed above. Dr. Dorf prescribes new inhaler and Duratuss. Bad side effects from medication.

May 1998: Pain the same. I saw Dr. Annese (another sinus doctor) He explained that the disease that I had was Trigeminal Neuralgia, also known as tic douloureux, and prescribed 100 mg. of Tegretol (Carbamazephine) three times a day and referred me to Dr. Timothy Martin. (neurologist) He didn't explain much about the disease and needless to say, I was quite frightened.

Finding Answers

June 1998: Pain much better from tegretol. My visit to Dr. Martian was an educational one. The doctor explained in detail every aspect of Trigeminal Neuralgia. An MRI was scheduled to rule out tumors and TMJ. He also added to the dosage of Tegretol. I had been so relieved to have finally been diagnosed! I had many side effects from Tegretol, such as sluggishness and feeling 'dopey', but the pain was gone within three days!

July 1998: Pain gone. Still taking Tegretol.

Aug., Sept. 1998: In remission!

Oct. 1998: Went to dentist for small cavity. Three days later, pain is back. Same as before. I sadly went back on the Tegretol.

Nov. Dec. 1998: Pain pretty much under control with the medication but having problems with the side effects of the Tegretol.

TN Is Taking Over My Life!

Jan. 1999: Bad pain again. This time, mild touch to the right cheek causing pain and a burning sensation including all past symptoms. Dr. Martin adds Baclofen to meds. Also trying magnets and upper cervical treatment. By now, this disease is affecting every aspect of my life. I had been losing weight because I was afraid to eat. Daily tasks such as washing my face and brushing my teeth became a nightmare. The mood swings and depression from the Tegretol had put real stress on my relationships at work. I had problems concentrating when driving to and from work (caused by meds.) At times I wouldn't talk, worrying that speaking would trigger a lighting bolt through my head. It was not a happy time.

Feb. 1999: I have found a T.N. support group! At last I can talk to people who really understand what I am going through. What a blessing! Now I finally comprehend everything about Trigeminal Neuralgia. If you have this disease, or have a friend or loved one who does, I strongly suggest that you find a support group in your area. Here is a link to a site that will give you a list of all of the support groups available. T.N. Support Groups
You do have to register, but it is free.

Mar. Apr. 1999: Pain off and on. I have tried upper cervical treatment and it has helped twice, but the adjustment only lasted short time.

Turning Into A Zombie!

May Jun. July 1999: Taking Tegretol each and everyday. Still having breakthrough pain and turning into a zombie from the medication. I want my life back! I am considering surgery. At the support group they explained the different types of surgery available for T.N. I had my choice of five. Radiofrequency Rhizotomy, Glycerol Injection, Balloon Compression, Microvascular Decompression, or the Gamma Knife. I did research on each surgery carefully. I decided that I would wait until I couldn't take it any more and then have the Microvascular Decompression. Although, this surgery is the most intrusive, it had the biggest success rate and also the lowest recurrence rate.

Aug. 1999: Pain in remission. Off meds.

Sept. 1999: Went to dentist to get particle out of between teeth. Three days later... pain is back big time.

Oct. 1999: Dr. Martin prescribes Tegretol and Cytotec. Pain still there but duller.

Nov. 1999: Still feeling pain. Dr. Martin adds Neurontin to the other two meds above. Can't take Neurontin... Feel very "high". Stopped Cytotec also. Brought on period twice this month.

Dec. 1999: Pain seems to be going into remission. Eased off from taking 600 mg. three times a day to 250 mg. three times a day. Pain only when eating and brushing teeth. But, I am a total zombie. I can't take it any more! I have researched all of the doctors that perform the Microvascular Decompression and have decided on Dr. Ben Carson at Johns Hopkins Hospital in Baltimore. Although, there are many good surgeons in our area, I have read Dr. Carsons books and have heard that he is the best in the world. And... if someone is going to be messing with my brain... he's going to be the best! It took a lot of courage to pick up that phone and make the initial appointment. But when I did, I knew that I was on my way to a pain free life!

Bye Bye Pain!

Dec. 26, 1999: Had the MVD surgery!! The surgery lasted over five hours. When I opened my eyes I was soooo sick! I must have had a bad experience with the drugs. I have talked to many others who have had the surgery and all that they had was a headache and minor pain from the incision. Even though I was sick as a dog... the pain was gone! Below is a sketch of my head a week after the surgery. If you have any questions about my MVD surgery, please feel free to email me.

MVD Scar

October 3, 2001: The pain did not come back! What I did get back... was my life!

August 24, 2003: The pain still did not come back!

January 6, 2004: They say that if you have had MVD surgery that if the pain does not come back after 7 years, that the probability of it ever coming back is pretty rare. So... it has now been 4 years since my surgery and I am still pain free! And... I am over the hump (only 3 more years to go)!

January 5, 2005: Five years after the surgery and the pain is still gone! Thanks the good Lord and Dr. Ben Carson!!

March 1, 2006: Still pain free!

June 26, 2007: It has been 7 years and I am still pain free!

December 10, 2007: My TN came back, only the pain was a bit different. Not as intense, but painful none the less. Lasted 5 days and went away just like that! I feel that the trigger had been that my neck was out.

Disclaimer - The author is not a medical professional and the information in this presentation is not intended to substitute for, or suggest appropriate medical treatment.

If you have a few minutes, check out my other webpages below. My site is filled with hints and tips for the home, laundry, cooking, beauty, health and more. I built my website during my nightmare with trigeminal neuralgia to take my mind off of the disease. Besides, I had tons of time from being off work so much! I really think that you will enjoy my site.. and.... it will take your mind off of your problems too!


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Updated- 9/1/14