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EXPRESSIONS The following remarks were submitted by several people to Expressions. and are not really poems but rather a collection of comments, experiences and questions about living with serious facial pain. name: natalie
w. I HAD A TOOTH EXTRACTED ON OCTOBER 20. I HAVE HAD FACIAL NEURALGIA SINCE THAT DAY. I AM BEING TREATED WITH MEDICATION. I AM DOING MUCH BETTER THAN I WAS. I WOULD LIKE AS MUCH INFORMATION AS I CAN GET. PLEASE SEND ANY INFORMATION THAT YOU CAN. I PREFER TO RECEIVE BY MAIL BUT E-MAIL IS OK TOO. MAY HOME ADDRESS IS 317 HAGEMEISTER EUREKA, MO 63025
THANK YOU VERY MUCH NATALIE name: julia I have a return of excruciating throat pain, I am visiting dentists, doctors etc as I just need to sort it out. I've had the pain 25 years after a tonsillectomy. It was relieved a bit with a root canal - but seems to have come back with a vengeance in the past few months. I have just been put on Tegretol, but I am a real natural health believer - does anyone know of ways to control the pain with herbs/natural medicine? Thanks Julia name: Martha My husband had Trigeminal Neuralgia for 30 years and took intermittent doses (sometimes quite heavy) of Tegretol. He now has Myelodisplastic Syndrome. Has anyone else had a serious blood problem like this from taking Tegretol? The Hematologist is trying to cure it without respect to its cause, but it should be a warning to others if it can be attributed to Tegretol. name: Ashraf I suffer what is called "trigeminal neuralgia" in the right-hand side of my face. I took Tegretol for about 6 months. I started with 200 and reached 1200 (400 CR for three times), daily. at the first dose the pain disappeared for about four days then reoccurred again. at 1200 the pain disappeared completely. after I finished the treatment by about 2 months the pain reoccurred. please advice me, what can I do ? Thanks name: Lynnette I was diagnosed with TN Jan. 2000 and have been managing the pain with Tegretol and several other medications. Acupuncture seems to help as well. I have several questions for fellow sufferers, I would like to know if anyone else has had similar experiences. First, I have had a chronic cough since June and I am wondering if anyone on Tegretol has had a similar problem. The dosage was increased about the time of the onset. Recently Topamax was added to the Tegretol, and I had to stop taking it because it made the coughing much worse. I am also wondering about the experience of anyone else who plays the violin. Unfortunately for me playing aggravates the TN, which is on the left side in the lower jaw. I also would like to hear from anyone who has experienced hearing loss following MVD surgery, which I am considering. name: Molly Like many others, I had trouble trying to express myself with regard to the pain of TN. "Is it worse than childbirth?" some asked. If you were birthing five or more babies at one instant, that might come close, I would tell them. Doctors asked "On a scale of 0 to 10 how bad is your pain?" A scale of 0 to 10? Come on, get real. On a scale of 1000 to 10,000, my worst pain was 12,999. One day in an effort to portray the pain, I sat down with pencils and crayons. It was plain to me that I am not artist enough to do that. Then I thought, "anyhow, what color is pain?" and with that a poem was born. I eventually put it together with a manipulated photograph I had done, and that is what I will attempt to send to the editors in another e-mail, on the heels of this one. God bless each of you, Molly name: Gayle Well, after visiting this site, I think I know why my face is so painful. I've been nursing the worst Herpes simplex cold sore of the past 10 years on my right lower lip, VERY painful this time, and today it exploded into facial pain. Fits the description of trigeminal neuralgia to a "T". gosh, what a pleasant prospect, to have this going on in my life for who-knows-how long!!!I prefer to assume for now that it's only temporary, that as soon as the cold sore heals the facial pain will stop. Just hope I can get to sleep tonight............as Scarlett O'Hara said, "Tomorrow is another day". name: Karen Braasch I am so angry at a neurologist, as I write this. Since September 15th I have experienced the most excruciating left side facial pain. The sharp shooting sensations have been unrelenting. At first I thought it was a problem with a molar...no the dentist said my teeth are fine. Then I thought it might be a sinus infection. Other than finding a slight elevation in my white blood count, my doctor could find nothing wrong. Sinus films and CT scan were both clear. I was put on an antibiotic anyway, by her, just to be on the safe side she said. When the pain continued, she referred me to a neurologist. He took a history, did a neuro exam and sent me for an EMG and MRI, to rule out a lesion on my Trigeminal nerve. I waited for the results...in pain. Finally I heard from him yesterday, my birthday. He said that nothing wrong was found on either the EMG or MRI. My relief that I wouldn't brain surgery was short lived. When I asked what he thought could be wrong he said he "could only say what it wasn't...it wasn't Trigeminal Neuralgia" and he wanted me to see a colleaque of his...a psychologist. I was appalled. I told him I felt I was being written off as a nut. Someone just imaging this terrible pain. He said people can do that. I agreed that it is possible for people with certain personality disorders to experience self-induced pain but for me to suddenly develop one of this disorders, at age 53, was absurd. You see, I am a Psychiatric Nurse with national certification. I know what I'm talking about. So now I begin the long battle to get a second opinion authorized, so I can see a neurologist out of my insurance plan...hopefully one with less hubris. Just because he could find no objective evidence for this pain...I must be imagining it. Unbelievable!!! name: Jerry I just started up my 4th go-round with TN. Back on Neurontin last night. I have the distinction of being the only director of a chronic pain center I have e ver heard of who suffers this tough pain problem. I have learned a few things, beginning with my first episode. After discovering the limitations of the standard medical pain management resources I knew about (and believe me I know them after 25 years in the "pain game") I took Tegretol and tried to get on with life, with limited success. Good pain control but I couldn't think very well on the drug. By coincidence, I discovered that an osteopathic technique called Craniosacral therapy dropped the pain level about 50%, allowing decreased Teg. Then I tackled the problem with the whole range of "alternative therapies". After 5 months of trying different therapies to supplement the drug and manipulation approach, I happened on a practitioner of "energy healing" - a Jain priest from Canada. I'm game for anything and after fifteen minutes of laying on of hands augmented by big quartz crystals, everything connected with the TN stopped! I was astounded. Another treatment the next day and I went off Teg sans any return of symptoms! I was amazed! And delighted. A year or so later, I had some dental work and felt the tell-tale lightning bolts in my face the next day. I didn't wait around - started Neurontin and called for the healers. Craniosacral sessions again helped partially while I searched for a energy worker. Found a good one - again a two session "cure". Episode #3 started about 2 years ago and again remission followed immediately after some energy therapy, with a 3rd practitioner. This time I already have the C/S session scheduled and I see the healer from episode #2 tomorrow. Just wanted to share my experience - It may not be for everyone but a good energy therapist using Bio-energy therapy, Reiki or any of the related techniques seems like a worthwhile try - particularly early in an attack. No side-effects, non-invasive and either works or it doesn't. Self pay but inexpensive. For skeptics, see Larry Dossey's book "Healing Words" for a pretty good review of the scientific literature about healing
Thanks for listening. name: JIMMY expression I saw dentists, ENTs, TMJ experts, and oral surgeons. The oral surgeon suggested probable TN and prescribed Tegretol. I refused it for several months as the pain became more frequent and severe , but finally gave in and took the medication. It worked well and significantly reduced the level and frequency of pain. I began to read all I could about TN on the internet. One account I read was from a girl who said she had it so bad that she sat up all night in bed with a glass of ice water in her hand, and that was how she lived her life. It was all I could do to muster up enough strength to run ice water by a tooth that was having attacks. But nothing could be worse than the pain I was already having. So, I tried it and it WORKED. The ice water seemed to "calm" the episode and several drinks would do away with the pain altogether. It especially seemed to work when sucking it through a straw so I could direct the stream around the gums and teeth. Eventually I had to up the dosage of Tegretol. Also, I noticed that extreme agitation, irritation, and staying up late at night (not getting proper sleep) seemed to bring on the attacks worse. Proper and sufficient sleep really helped. It would not eliminate it but it certainly helped. My neurologist had no explanation about my description about the ice water being a temporary fix, and seemed to rather discount it. Later as the pain began to occur twice a day (every day) she recommended the Gamma Knife. I had the treatment in April 2000. Today is June 16 and the pain is about 1/10th of what it was. I'm still on the Tegretol, as I won't see her till July. Since I still have "some" pain I doubt I'll be taken off the Tegretol. But the Gamma Knife removed about 90% of the pain. They say, in time, with some patients, it can gradually reduce to zero. Some require a second treatment. Luckily I live near Birmingham, Alabama where a Gamma Knife is located. I would strongly recommend considering this for TN patients as it has been a blessing to me. My small level of remaining pain is nothing more than a brief and mild electric shock perhaps once or twice a week. If I had to I could live with that. No one around me even knows when they occur. That's how successful the Gamma Knife has been for me. I may be taken off the Tegretol soon and maybe not. At this point I don't know. And, I may have to have a second treatment of the GK. If so, I'm ready for that too. Whatever it takes, I just don't want to live my life with the pain and the FEAR of the pain that I was having. And I might add this. From what I have read my level was nothing in comparison to the pain experienced by others. Its a horrible, horrible condition and my hat and prayers go out to the medical profession who came up with this treatment, and those who treat people every day -- often with not even a Thank You. name: Leslie expression name: dc expression name: Hilary M. expression name: Lenda Robinson The Lonely Life I have people all around but I am still is lonely. People say they understand and can I do something for you but deep down in side you know that they are just being polite or just don't care. You cannot get Social Security for the reason of pain. Trying hundreds of medications and wondering what is all of this is doing to my body. If only people knew how the pain felt then you would not feel lonely anymore. I have not heard of anyone saying anything regarding the weight gain or having to sleep only on one side of your face until your hair starts coming out. I cannot drive to work anymore because I am so drugged up or riding the bus every bump hurt so bad. There are no support groups and if I accidentally over in the night lay on the wrong side of my face the next day or so there will be hell to pay. Lenda name: Liz expression name: lee expression Thank you. leejcarroll@aol.com name: Reinald expression Monday, she had excruciating pain for almost three hours when in desperation she applied Canyon Group's "Megapain Therapy" (MT) which she had used for successful abatement of muscle pain associated with a broken arm. Instant relief! She applied it left of her nose between mouth and eye. Even before she completed the application, pain was subsiding. My limited review of Net references turned up no mention of topical treatments for TN. Has any other substance been used similarly? MT is a marketed by Canyon Group Corporation of Liverpool, Texas. |
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