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Living With Facial Pain

Forgive me?

#1

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]

#2

KilleR, it’s been ages! Seenie here, from ModSupport. Glad you’re back, and it does sound like you are making some progress, even if it’s indirect, and that (even better) your progress could potentially help a lot of people here. Happy dance!

In strict terms, though, your post violates our policy of not allowing members to discuss or condone actions that are illegal, even with the best motives. (And your motives are well-intended for sure.) That places us, the moderators, in a bit of a difficult position, so I’m going to redact your post until we can decide how best to go forward.

What you’ve posted is so interesting, and potentially so valuable to other people, that we need to think carefully about this. Thanks for sharing this information. We’ll keep in touch. Meanwhile, the discussion amongst the mods and admin will be very interesting! Thank you for posting.

Seenie from Moderator Support.

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#3

Eegads, the curiosity is killing me! How about a small clue?

#4

I know, ziggy, I’m sorry about the blurring but I thought it was better to be transparent in our handling of this. If KilleR hadn’t been an old friend, with really sincere good intentions I probably would have just deleted the whole post and you would have been none the wiser. But KilleR doesn’t deserve a put down like that. I guess you don’t deserve suspense like this either, huh?:wink:

Discussion of illegal drugs on the community is totally out of the question. But on the other hand, going to a doctor and being straight up about it is admirable. I’m really glad that Killer’s doc was so receptive and so proactive: we should all be so lucky!

I hate being Seenie the Meanie, but I hate seeing peoples’ lives and freedom being put at risk more.

Seenie from ModSupport

#5

Desoxyn is not illegal! Please understand, or try to, rather. I feel so guilty for not sharing the news when it happened (THREE YEARS AGO!!!) and thought of y’all often. And I’m not suggesting everybody run over to the other side of the tracks and chase the dragon :dragon:! But I’ve done a ton of research and doing so, I’ve watched a ton of TfrieNd videos - they make me cry. I read ALL of the comments ie: “13&1/2 yrs. 3600mg Gabapentin, 400mg Carbamazepine, 30mg Baclofen and 8 other pills daily” WTF? In fact, that dosage, a direct quote is what wiped the bored “here we go, drug seeker” look off of the doctor’s face! That is torchment not treatment! Seriously! It makes my blood boil! HOW DARE THEY? Just because the pain is so great and hope is so dear, they feel they are at liberty to poison people into a zombie fog? They’ve known since WWII how effective stimulants are in treating pain! I’m mad as Hell!

Unfortunately, my quick temper and emotional distress tend to make me resemble some kind of amphetamine psychotic if I don’t keep myself in check. I think when it comes to compassionate, informed, rational physicians, the fact that I eat a few meals every day, sleep every night and present impirical data, proven in laboratory, double blind studies, they’ll at least entertain me. When I make it clear that I understand that my relief could be placebo yet I’m willing to find out in order to help others and to stand on the mountain and scream “THIS is the other face of Meth and it isn’t in pain!” even though the drug is so stigmatized, they begin to consider it as a possible aid in treatment. But when I acknowledge the fact that this is not a cure I’m suggesting but rather a treatment and I’ll gladly go anywhere to be part of a study, knowing I’ll have to quit my ‘methacin’ and let the lightening come and raging heat engulf my tongue (at least 1/2 of it) and feel my teeth on one side grow so long I can’t close my mouth and risk not being able to get it back under control again, they actually envision what I’m proposing. Imagine, an episode is raging. Your physician gives you a ‘vape pen’ with a calibrated strength of amphetamine with the methyl group intact (much cleaner and less incident of negative side effects of amphetamine salts). The pen is set at its lowest setting. You press a button and pull a vapor into your mouth and lungs through the pen. As you exhale, you feel the pain stop. The doctor checks your vitals. You are sent home with the pen and a treatment plan which may be the pen only or tablets and the pen to use for break through pain. The treatment gives you energy, helps you focus your attention and lasts about four hours. You are monitored closely in the first few months to guard against inadvertent abuse or contraindications followed by years of a normal life free from pain. (and I, having stopped for the study, never get it back under control). That’s why the doctor yesterday said, “Don’t take no for an answer. You fight and you push and you call every university hospital, contact every researcher, present what you just told me to every doctor you can get a minute with. Just don’t give up!” (Did I mention she spent almost an hour with me and didn’t charge me a dime? Or that she recommended her own neurologist, putting a star by his name?) I mean it! Screw all of this “take this med home and try it and wait a few hours and see if you feel anything for some of your pain” BS! If I’m right, even if only for a percentage of TfrieNds, it’s a damned sight better then the barbaric bullshit being inflicted on people today!

Some of you have known your physicians for years. Don’t block me and I’ll give you all everything I’ve learned. I’m keeping a daily log of my usage, I’ll share it. I’m not going to lie, I don’t want to go to jail and I don’t want to be labeled a felon or an animal. But I’ve been raising three dogs and training them to be service dogs for military veterans. They are just now old enough for me to select their partners. I knew I had to find another method of delivery and that a study has to take place! I’d have done what I’m doing even if I hadn’t gotten in trouble. Y’all consider my evidence. If it bears weight, take it to your doctor. Check out Dr. Carl Hart on YouTube. Think critically.

Don’t worry. I’ll win a study no matter what and Warmenders will have many charters and my dogs will stop many suicides - even if things go sour big time and I end up in a cold concrete cell with the pain (it’s freezing in that place!), I’m teaching Granddaddy’s dog training method to a young friend and my mom and best friend can get their hands on all of my research. There will be fewer suicides perpetrated even if I end up a victim. Mark my words, there will be another option if in deed one does exist.

#6

Hey! Or keep the post blocked and I’ll just post all of the info where ever you want. Just bear with me, I’m doing this all on my phone. And I have to drug test twice a week and now they want me in a rehab too. The way I’m passing so far hurts like hell and is dangerous as all get out - and the real pisser is, I’m so scared and freaked out and stressed and only allowing myself the tiniest bit of my remedy that I have Joker Face almost every day. And those videos whip it up even worse but I can’t just see a title and post my comment. I feel it is only good and right to honor the TfrieNd’s bravery of filming themselves and the very least I can do is listen to every word of their story; every whimper of their pain.
Lemme know.

#7

So glad there are people who understand the devastation of constant facial pain and are continuing to fight for resolution. I will join your battle.

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#8

Thank you for your support. A really funny thing happened just now when I tried to log on - I guess I missed a letter in my password? My heart hit my heels. I thought I’d been blocked (which I would understand. It would make the battle more difficult as some of the presentation I am preparing for State Legislators I have gleaned from my arguments / debates with moderators [especially the ‘Meanie’ ones - lol]. There would be no hard feelings, just a whole bunch of mushy really sad ones.)

To see your response after the relief I got when my little Joker Face icon popped on the screen was overwhelming. Happy tears feel so very different from tears of despair.