Bonkers

Jerry, To be taken with a grain of salt: I've never heard evidence that the mix would be harmful. Why not give it a shot? With the 1/2-life of SSRI's being so long, she probably wouldn't miss a single dose. So she misses her morning pill, doses that evening and then takes her Cymbalta again the following morning. Her blood level probably wouldn't have dropped enough for her to notice but perhaps enough to improve her chances of busting successfully. Ron

Jeebs da Man, all right. I was expecting Dr. Goadsby to come out to our place to treat Michael, however. He expects us to go to him! The nerve! I'm a very busy man; what with all the TV watching I gotta do and shit. All kidding aside, the good doc just feels (far out, me saying how he feels) that he needs to see Michael, talk to him and generally check him out before he's comfortable giving any advice. I don't think I'm betraying any real confidence (I asked the Jeebs first) by letting you read the exchange of emails (read from bottom up, of course): My final email to Goadsby: You are so kind to offer to help my son. Thank you. I will bring him to S.F. I need to know where and when and what you'd like me to bring. Ron Goadsby's response to my 1st email to him: On Oct 7, 2011, at 2:53 AM, Goadsby, Peter wrote: I understand regarding the travel It is very difficult to offer advice on a complex problem at a distance. I would be happy to see him if that were possible My 1st email to Goadsby: ________________________________ From: Ron Leyva [layvuz4@nethere.com] Sent: Thursday, October 06, 2011 10:43 PM To: Goadsby, Peter Subject: Mike Leyva, CH patient Hello Doctor, I received an email from you this morning, very kindly offering to see my son, Michael. His case is as, or more severe than anyone in our Cluster Community (ClusterBusters.com<https://mail.ucsf.edu/owa/UrlBlockedError.aspx>) has come across. We made two trips to the ER this week and Mike was finally admitted to Alvarado Hospital (we live in San Diego) thanks to Dr. Omar Ghausi (619-287-0147) to see what they could do to ease his pain. They really didn't have much success but I'm sure it wasn't for lack of trying. I'm hesitant to make the trip to S.F. to see you. I don't want to subject Mike to the pressure of a plane ride and land transportation would take too long. I'm pretty sure I can get his medical records to both you and Dr. Ghausi tomorrow, if need be. I would very much appreciate your having a phone conversation with Dr. Ghausi to hear from him what was done in hospital and perhaps get from you some recommendations for Mike's further care. Dr. Steven Horowitz (619-881-7896), Pain Specialist, has been taking care of Michael for the past seven years. It might be helpful if he were also a part of the conversation. I should mention that psychedelics (LSD and psilocybe mushrooms) have given Mike the most pain-free time but they lost effectiveness a few months ago after about a year-and-a-half of help. I can spend tomorrow doing what I can to organize. I'm at 619-445-0434. Maybe the first part of next week would work for everyone. Thank you, Doctor. You've been a hero of mine for a long time. Ron Leyva Goadsby's office's 1st email to me: Hello, Please have pertinent medical records faxed to 415-353-9539. We have a quite a waitlist, though weÂ’ll do our best to accommodate an appointment expeditiously once records are received. Thanks, Chris CHRIS FREY UCSF HEADACHE CENTER PRACTICE MANAGER Goadsby's respose to Jeebs: He certainly sounds in bad way. I would be happy to see him to discuss what is possible. It is hard to say what can be done without seeing him and getting a good history. I copied the practice manager Chris Frey into the email for any arrangements that need to be made. PJG Jeeber's 1st email to Goadsby: On Oct 6, 2011, at 0:55, "Matt xxxxx" <matt@xxxxxxxx.com<mailto:matt@mattxxxxx.com>> wrote: Hello Dr. Goadsby, I met you briefly and at the Nashville OUCH conference, enjoyed your talk, and found it to be genuinely informative. I'm writing you not about myself (my CH is currently well under control) but about a young man, Michael Leyva who easily has the most severe case of CH I've ever heard of. His CH escalated to unspeakable depths following a car accident years ago. Unable to reign it in at all (imitrex etc. ceased working for him), his doctors decided to put him in an induced coma. He came out of it with no improvement. The only thing that took the edge off a little was high doses of methadone. He then improved for a while after "last ditch effort before suicide" doses of hallucinogens, but is now back in as much unbearable agony as he ever was. He's been hospitalized with teams of neurologists throwing everything they have at him to no avail, finally discharging him today, breaking the hearts of the online CH community who know him and his story so well. He can't be expected to hold on any longer without hope, hence my plea to you here: Is there any way you could usher him into a research trial or something for the newest technology you spoke of towards the end of your talk? I'm pasting an excerpt from the latest online update regarding Michael's condition (prior to his discharge) from his father and caretaker Ron, and I'm providing Ron's email address and phone number below - THANK YOU. -Matt xxxxx (Michael's father) Ron Leyva phone: 619-445-0434 email: <mailto:layvuz4@nethere.com> layvuz4@nethere.com<mailto:layvuz4@nethere.com> "There are now several local (I live in San Diego) neuros, including my neuro and my pain spc who are discussing what to do next. They're mystified that he can take the amount of narcotics they've given him and it doesn't even touch it. He was getting 100 mg of methadone 2x/day, which they dropped to 1x/day. Also, 2 mg of dilaudid every hour. It doesn't touch his pain! They're also titring a warfarin drip, currently at INR 1.1. He's been given depakote (I think one of the things that didn't work). He's on an ergotamine drip. They did the thing with the lidocaine-soaked cotton swab up his CH-side nostril. Didn't work."

My sweet Danny boy, $400 for 3 doses. Even I could find a way to raise $400. Good news if true. From your snuggle-uncle, Ronny

And bless you, Jerry and everyone else here. This is the kindest, most open and loving group of people I've ever in my life been involved with. I'm honored to be among you. Yeah, the Jeebs really outdid himself on this one. He emailed Dr. Goadsby, told him about Michael and asked if he would help. Dr. Goadsby sent an email to me offering to help my son. Wow! Hey Jeebs. Anything I can do for you? Wash your car? Mow the lawn? Want a kidney? A chunk of my liver? Anything? Love ya, Dude. Ron

I've got some really cool news but no time. Will share later. The Jeeber knows. Ron

Damn!, I wasn't there. They released him to his mother a little while ago with a script for Dilaudid saying that there was nothing else they could do. I'm sure they also tired of spending 25K/day and the efforts of several big-buck doctors on a HA. He's just one person among billions. And, he's getting better treatment and advocacy than almost all of them (us). We'll persevere. BOL is just around the corner. It's all okay. I'm sure it's difficult to impress trauma personnel in an ER. He impressed them - I think mostly by his spirit and endurance - and I think they did the best they could. No despair. He's got me and his Mom and Sister and all of you. Thanks for the love. Ron

I think your 1st CAS# is for the 1st, much older formula, maybe back to Hofmann and maybe the new one is for THC Pharm Gmbh salt. And maybe I have no idea what I'm talking about.

Too tired to type more than a note, Mike's still in a lotta pain, but he's finally getting the full-monty. He's in a private room on a floor where they can very carefully monitor all his vital stuff. He's hooked up to so many wires and monitors and drips - I'll try to get a picture. There are now several local (I live in San Diego, la dee da) neuros, including my neuro and my pain spc who are discussing what to do next. They're mystified that he can take the amount of narcotics they've given him and it doesn't even touch it. He was getting 100 mg of methadone 2x/day, which they dropped to 1x/day. Also, 2 mg of dilaudid every hour. It doesn't touch his pain! They're also titring a warfarin drip, currently at INR 1.1. - Hi, Christy! He's been given depakone (I think one of the things that didn't work). He's on an ergotamine drip. They did the thing with the lidocaine-soaked cotton swab up his CH-side nostril (they wanted cocaine but too late for a compounding pharmacist - Damn!). Didn't work. I'm really glad that there're now several really good men collaborating with each other and I'm sure on the phone to other guys wherever about how to fix my kid's HA's. When I left him tonight he was writhing in agony. I really think these guys are committed.

I misspoke. I meant, no 50-year-old women in total agony with retarded children and out-of-work husbands.

Denny, you old fart, you don't get that joke any more'n I phukin do. You come off like, oh yeah that's really funny, and you don't get it any more'n me. What? Come on.

Start with a few less, say 20-25 seeds. Get an idea about what it does and how it tastes (yuck :-X). It might be all you need. Up it from there (some take upwards of 200) if need-be. Good luck! Ron

I have yet to hear of anyone being "busted" for using psychedelics to treat their CH's. In particular, no 50-year-old women with retarded children and out-of-work husbands.

You don't need to take enough of either (in most instances) that you'll reproduce an experience from your "wild" years. The stuff works without your having to hallucinate. LSD is a far purer substance that produces no nausea and is far stronger than psilocybin. 100 micrograms (not milligrams) would probably be plenty. Shrooms require upwards of 1.5 grams to be effective. It depends on either drug's availability to you. You take whatever you can get as long as the source is trusted to supply you with clean, pure psychedelic. I wish you good luck and welcome you to our forum. Lots to read here. Ask questions. Ron p.s. - If you can, watch this. It's a video presentation from our founder, an exceptionally good intro to busting and to what we're doing here and why:

Can't see why it would matter. A more stable compound maybe?

You guys bring tears to mine. Ron

I waws just about asleep. Mike called. He's getting ready to go to sleep. Peeeeeacefully. They'd been giving him Dilaudid all day to no effect. Finally got the attention of really good-man-type doc in the ER. Yesterday the Dilaudid took the edge off so hats off to the ER crew. Wonderful folks today too, but for different reasons. Today, I think I met a man (2 men, really) who saw my son's pain and took responsibility for it. First a trauma guy, basketball-tall, who met me dead-on when I told him that my son would comit siucide if he didn't get him out of his pain; that someone here, now, in this hospital had to take responsibility for it. He looked at me for a few seconds [i'm ragged; no shave/bath/sleep for like 3 days; I was wearing dirty shorts/t-shirt/ugly brown Crocs. Honest, don't mean to offend (most of our Country's 3 paychecks short of the street) - but we were street people] and said okay, and turned away. Not long after, a really nice, hip, obvious-genius, neuro rolls in who knows a lot about CH. Didn't know about BOL but knew stuff to try that I hadn't heard of. He took charge of my son's care. Cool guys. 'Bout effin time. Ron

Thanks for all the good info, Ricardo. Will reply tomorrow or next day. Gotta get my kid out of hospital 1st. Ron BTW, weed isn't a trigger for him. Never has been. He just hates how it makes him feel and how it smells. Funny, I've always loved those things. Later.

Thanks guys. I'm exhausted. 2 trips to the ER in last to days. You all know how much fun that is. They admitted Mike this evening - instead of shooting him up with Dilaudid and sending him out the door like they did yesterday. Might have had something to do with my saying loudly to his ER doc that "my son will commit suicide if you don't get him out of the pain." Now he's got a private room, his own nurse and a neurologist who is really up on CH. He's trying several things I've never heard of. Funny me, thought I'd heard it all. I'll find out everything they try and get his name. I like him. He knew all about psychedelics but hadn't heard of BOL. Gave him our website address. And now to bed. Later. Ron

Good goin,' Bubbs. Potter said it right.

I'm trying to convince Mike to take a "manageable" dose some time this evening. A very good suggestion from a friend. I'll let you know.

I agree, Denny. I didn't mean to suggest that everyone working to develop a drug for us was a profiteer. I also applaud Dr. J and others obviously committed to the cause and their work in 3rd world countries where so many of those who suffer with this horrible affliction have no idea what or why they're suffering and have no access to any modern medical facilities, personnel or medications. CHfather (clearly not the dullest knife in the drawer) made it very clear, in language all of us can understand, how the business side works and why I can't (as yet) go to the pharmacy and get something to help my son. I posted my "Gosh... thanks, guys" post before reading his explanation (we must have been composing at the same time) and probably wouldn't have written what I did if I had. The last few days have been difficult. Michael's getting hit so hard. All the meds are gone. I've been taking narcotics for 7 years but went cold turkey off my methadone last Tuesday so Michael could have the rest of my Rx. It's been a lot easier than I expected. I feel pretty good today. We've been debating going to the ER all day. It hasn't let up for him for several days. Now he's going through withdrawal as well. We got all the way to the highway a little while ago but when I confessed to having 2 pills I'd kept for an extreme emergency he wanted them so we returned home. The next meds for either of us won't be available till next Wednesday. I don't know what we're going to do. Mike's afraid to try to bust while he's getting hit so hard (set and setting, you know), so that's not on the table. I have a medical marijuana card. Weed's been really helpful for me while I've been going through withdrawal (probably at least part of the reason for some of my recent odd posts) and I bought some that I thought might help him sleep and maybe give him a little relief but he hates weed - even the smell makes him nauseous. It didn't help him. We'll probably go to the ER later but I don't know when.

Jerry, damn!! You sure do know your stuff. I wish I had had you for a teacher. But then, you'd have needed to have graduated from high school when you were 13. Thanks Ron

Hi Jeff, I don't pretend to hurt as bad as you do but I've had a bum neck for most of my life and have found some things that have helped. If you can, see an Orthopedic Surgeon at another facility for a 2nd opinion. Get a hard collar from a medical supply store. Try to find a way to partially suspend yourself by your head. I'll explain. I bought 2 big packs of bungie cords of different lengths from the hardware store that I suspended from hooks in the ceiling in pairs about a foot apart. To these I attach a cervical harness (med supply store, might need Rx) to different pairs to provide a variety of different tensions. You kinda hang yourself. I know that sounds bad - but it sure feels good. I got (through workman's comp) a blue, semi-soft(?) PronPillo (kinda expensive) that allows you to lie flat on your stomach with your face supported by this "pillo," like it is on a massage table. Feels good; a new position to sleep in. Try one of those inversion tables they advertise on TV. They're pretty cheap (mine was only $100.00 several years ago). If you like how it feels, buy a good one. I'm not okay but these things make me feel better. Good luck. Ron

If you don't quit picking at it, it won't go away.

Gosh... thanks, guys. I hope that everyone who wants to, makes a billion dollars. Swear to God. We're all together here on this planet as human beings. If we, as a species, are unable to put compassion before profit, to help free those of us who suffer the most, what will become of us? Love, Ron