I am 86 going on 87 and so nearing my 25th year with severe TGN. Had all the operations, taken all the drugs, when by accident at my facial=pain doc’s a young salesman trotted in with a carton of a new drug he was touting, VimPat. “Try it out,” my face doc said. “Be sure to dose only as directed. Let me know if it works for you.”
That was 10 years ago.
I took 200 mg. every 4 hours as directed for big males. Miracle! for me. Pain gone. Could brush my teeth again. Eat peanuts. Chew steak. And most of all, sleep for 8 hours. First thing I do in the morning: take dose of Vim Pat, check the time to be sure when next 4 comes, for another dose.
That is the good news: Pain subdued. Gone. Quelled. Controlled. You’re boss again instead of that faulty electrical connection in your head.
Bad news:
Most docs have never heard of VimPat and blanch when they see the price. So did I: $600 a month or maybe more. And never leave home without a necessary supply in your pocket or purse. I never leave home without two-days supply in my pocket. Because I’ve had hospitals refuse to get it for me when there I was, about to howl. Why? Costs too much. How about aspirin instead and a nice bowl of boiled cabbage? I should also mention, one of biggest and allegedly brightest on the West Coast told TGN was fantasy and one of their mental docs would be calling on me. He did. He knew why I was howling and causing coyotes to surface on the lawn outside. He got me the dope I wanted. Which resulted in a lecture from the Chief Nurse, who entered with a retinue of head bobbers. I shan’t write here what, as an old Alaskan frontier boy, I replied to her. They all huffed off.
As an old bird living on a pension, I hunted around the world for a cheaper VimPat price from a good source. Found that in India, for $240 a month for 240 tablets. I would have paid a hell of a lot more than that for my failed brain surgery: $30 K.
(That counts in the price for the major brain infection that also cost me a month in the hospital and almost cost me my life. The hospital did not argue when I said I would not and could not pay for an involuntary month hospitalized so that I could feel TGN again, as I doing every day there, which for its enjoyment I should not and would not pay a penny. I was willing to take a jury if the hospital sued.)
New problem: Indian government has put my Indian supplier in prison for a year for mailing me my VimPat supply without an overseas mailing permit, or so the story goes. (Forgive the tones of a long-retired newspaper editor.)
To sum: For 21 years, for TGN, nothing has worked for me except except VimPat, It costs as the Rolls-Royce TGN drug for me. It is a powerful drug. I ODed on it one morning and spent the next 24 with a very unhappy body and brain.
Again, I am a big guy: 6 foot four with little fat but much meat on me. When I started VP I weighed 260 lbs. I have since pared that to 190 and breakfast on foods good for you but otherwise detestable. I know a couple of folks of smaller build who get by one 100-mg VP pill every four hours.
The trick: Find out how to time VP to quell TGN and stick to it. I am especially careful on days I go to the Metropolitan Opera in NYCity. I can assure you that other opera lovers do care if you suddenly stand up and shove to the nearest exit, all the while howling an aria only we who suffer TGN appreciate. (Wagner’s Ring Series is best for exiting while you fish for your TGN pills and a place to howl without breaking union rules on opera choristers.
