My apologies all, it has been some time but it turns out, that may be a good thing! Here lately, I have been going through YouTube videos and responding with the following comment. Not just as a public comment but in response to other’s comments as well. Here it is:
'My best wishes to you![spoiler][spoiler] Here is my experience; on the 4th day of an episode I tried crystal methamphetamine in desperation. (How could it hurt any worse? And if it were to hurt worse, maybe that would give me the courage to make the pain stop finally once and for all.) I have a history with the drug - I’m not here to blow smoke up anyone’s behind. I’m trying to push for a study because at the time, I also thought “hey it might help”.
Scared as Hell I took a tiny puff off of the meth pipe, there was no way I would snort it!!! The pain in my face was already bad enough. Eating it would have taken too long to feel the effects and the suspense was already killing me (pardon the pun). I waited a second and THERE WAS NO PAIN!
I thought I had to be making it up. I touched my cheek. The musculature was tender, my face, neck ear, head all were tender to touch but the pain was gone. I took another ‘hit’, this time a decent one and returned to life. That was three years ago!
In the past 3 years, there have been times I could poke around on my cheek and find “the spot”, other times I have been unable to palpate it at all. No pain! I do a small amount when I wake up then get busy with life. Around lunch time, AFTER I eat I do another lesser ‘dose’. In the evening I do the same as I did that morning and then around 10pm I do a very small amount - never after midnight.
Stimulants have been recognized as a useful tool in pain management since WWII! There is caffeine in BC Powder. Never do I see it listed for use in this condition… Fishbowl fog dummy drugs then brain surgery when you can’t handle being a zombie any more, that’s it. And the surgery isn’t 100% effective and lasts as long as 10 years. So you still live in fear - not that I don’t. There is no study, no testing, this might stop working tomorrow. I understand the danger there. If it did, I would try increasing my dose and there lies madness! But that’s because I don’t have a doctor’s help and won’t get it until I flare up and get a proper diagnosis.
I’ve tried to stop my ‘medicine’. I’m in trouble and next time I pee dirty, I get violated. I was 3 days without and the stress was getting to me. I felt my cheek ‘draw up’ a few times (the tic) and when there was a light flash of pain, I reached for that pipe again. And (luckily) the pain stopped.
There needs to be a study! All pain management protocols call for at least consideration of amphetamines. Why is it not used for TN sufferers? Is it because the surgical intervention does not eradicate use of the meds? Is this one condition where neurologists and surgeons don’t have to compete for our business, they can share the wealth? It is a terrible thought!
Sorry this is so long. People that love me, care about me, are asking me to risk an episode. I’ve tried, I may try again but I’m terrified. I wouldn’t wish that pain on anyone - except child abusers and that only because it would stop the abuse. Not as a punishment, it is too cruel for even them! I can’t help but feel hurt family and friends are wishing that pain on me. I feel stupid and weak that I won’t even risk an episode. Not to save my skin and not to help you. I’m sorry. If they put me in jail, I’ll have no choice… It’s a pretty scary prospect. My only hope is to find a physician some where on this planet that will write me a prescription for Desoxyn. Talk to your doctor. Ask him to at least let you try. Big Pharma does have a small enough dose to use this drug effectively without going over the line into ‘tweaking’ where we don’t want to go, that is a nasty road. Believe me, I’ve been there! If you hear of a study or your doctor actually cares, please let me know.’
Do keep in mind, I am not reccomending anyone else try this! What I am pushing for is a study!
Today, I visited a walk in clinic. Right before I was called, I glanced around and thought “this is corporate! I’ll get no help here!” But, I saw the doctor anyway. She LISTENED! She asked why I hadn’t pitched my idea to her personal favorite research hospital. She referred me to three neurologists and told me to take my note book to my appointment and present my facts exactly as I had to her and that if they wouldn’t help, keep trying. We had already agreed that it could be placebo and that would suck for me but the fact that I realize this and would risk peeking into Pandora’s Box in order to help others is compelling. “Don’t give up. Fight, push, insist! What you have compiled merits study. Do not take no for an answer.” She went so far as to offer advise should this journey land me in jail with no way to self medicate.
Pushes like this are like a life line! It is clear what I am doing is not a cure - the stress has me aware of the Joker Face sensation. Watching others tell their stories of ‘torchment’ (torcher and treatment rolled in one) enrages me - another trigger. Let’s get this research done!This text will be blurred[/spoiler][/spoiler]