Red, I agree with your comments. I am fairly new at this condition. Have had it for a little over a year. From what I read from all the posts, so many variations of this condition! And since it is a fairly rare illness, little research is being done to cure/control TN. My heart breaks for the young people who have it! At least I was in my mid-60's when I got it. But it's so depressing to think that I have to live the rest of my life with it. What a life-altering change!
Paula said:
Hi Christi - have to say that when I was first diagnosed, the tegretol worked like a charm. No weight gain, no side effects (maybe a little difficulty in finding the words I wanted, but I initially attributed that to getting older - I'm 67), then since I was feeling so good, I bought a pack of chewing gum and boy, the sh-- hit the fan! Within days, the pain was back. I could not believe it!! My neurologist put me on neurontin - gradually increasing the doses, and within a couple of weeks I had the glycerol injection on June 28. Still having pain -- all three varieties: aching, burning and sharp shooting pains. The doctor's nurse said to take 400 mg of neurontin at bedtime and I can gradually increase the neurontin (I am on 1,000 mg now). This is to a person who never so much took an asprin!!!
I know the sensation of feeling a "livewire" -- sometimes I hear a buzzing like I have a bee in my brain! Christi, I don't know what the answer is -- I never dreamed this could happen to me (I'm sure this is your worst nightmare as well). What can I say -- is there an answer???
One bit of light at the end of the tunnel (or maybe part way there). Recent epidemiological studies in the UK and Netherlands have revealed that the incidence of neuropathic face pain is possibly between 2.5 and 4 times more common than previously believed from studies done in Rochester NY in the early 1980s. Instead of 4 new cases per hundred thousand per year, medical science now acknowledges more like 12 to 21 cases per hundred thousand.
Likewise, when I first began working on websites for the the Trigeminal Neuralgia Association in 1997, the number of Web documents containing the term "Trigeminal Neuralgia" was about 3,600. This morning, a search at google revealed 1.9 MILLION such documents. Thus the visibility of this disorder has practically exploded. People who search google for terms such as "pain on one side of my face" are frequently routed to my personal website. The three most often visited articles on the site which deal with chronic neurological face pain, between them receive over 1,000 readings every month. The Trigeminal Neuralgia Association website receives over 30,000 visits per month.
Now what we need to do is turn those statistics into commitments of research money. And there are several patient-run foundations active in just that attempt. If I'm recalling correctly, the Myelin Repair Foundation has received millions of dollars in donations during the past five years, and now has at least three new therapies nearing the stage of human trials. For a review of their research results, you may visit http://www.myelinrepair.org/myelin_repair/the_progress.shtml
Gabapentin really threw me for a loop. I need it for neuropathy, and it took me 3 whole months to get up to a high enough dosage to make my feet feel a little better. My gabapentin dose was very difficult to master and was tricky to begin with.
I had liver failure after just 6 weeks on Tegretol. One of 1 in 15,000,000 (million) to have such an adverse reaction. Oh, lucky me!! I had a the life threatening rash as part of the reaction to this drug, the rash is something they term “Stephen Johnson” syndrome. Very sucky thing because the drug was actually making some impact on the nerve pain.
I spent weeks in hospital.
I’m now take Gabapentin - I agree, and do believe it is the poor cousin of the drug world when it comes to this particular condition.
I take a medley of drugs and one of them is Gabapentin and my dose is 600mg 3 times per day, I can say, yes, it is working but not as well as the Tegretol did (liver failure aside!).