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About mff181

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  1. I have his wife on FB but cannot find Bill. I didn't ask her if he's on I just told her to let him know we all missed him in Nashville and feel terrible about what happened. Basically just said that they'd be in my thoughts and that if they need anything to just ask me.
  2. Here's my latest poem written in Nashville as I was on the O2 typed it with one hand. I know what you're thinking that it's impossible to come up with a poem during a cluster or bad migraine and I would've agreed 3 years ago. But now it seems these come to me like I see the words when I close my eyes and I can type them out. But if I can't keep up then I make no sense so I have to type fast to recognize the language through all the pain and auras from my migraines. Anyways without further ado here's my latest poem KIP 10 Agony: Tonight I awoke already in a fight for my life as soon as I
  3. birdman when you're out of cycle or even if you get a bit of a break and wanna drive here we have tons of O2 and an extra mask here for you to use. I also have cannabis oil which you may want to try in my experience it ups the pain for 5-10 minutes then you experience typically dramatic relief I'm talking going from a KIP 10 to a 5 or less. It can be a godsend at times and I'd be glad to share some I refuse to take money for medicine like that. But yeah man lets get together when your cycle ends we have a really nice guest room you can even stay overnight and we can hit the hot tub. Keep in
  4. I have had 3 Occipital Nerve Blocks and 3 more under Fluoroscopy via the method Bejeeber here mentions. I had no success with it relieving my chronic daily migraines (7-10 a day) and it didn't help with the episodic clusters I had at the time. I am now chronic and considering the SPG block, SPG implants, and Vagus Nerve stimulation.
  5. Thanks Tom that's a really heartfelt and encouraging post my brother it was a fucking pleasure to meet you and we sure will keep in contact as I will with my whole cluster family. I no longer feel as alienated since joining the boards, I don't feel like I am being treated like an animal anymore you all treat me like a human, just a normal fucking person and I love it. No being scared to talk to me because I'm dying at 23 you all just accept me for who I am and I couldn't say it enough times I love each and every one of you for that it's a blessing! Fabac it's a pleasure to hear from you I've
  6. It went well from what I heard I was passed out during the main auction but Day 2 I won some art work called Circle of CH friends and an unreleased book by Joanna Kempner so that was a total of $255 and we also spent money on the raffle and won the shroom christmas ornaments by Martha Stewart Living lol looks like ol' Martha learned about some new marketing techniques in jail! I also donated $100 worth of Amazon gift cards to the raffle, 4 of them at $25 dollars each and sent all the lucky winners their prizes electronically immediately during the conference. My hope is they will use Amazon
  7. Hell yea Tim glad to see you brother you gave one of the most important talks of the conference in my opinion! I'm so glad you're here I too decided to sign up for the msg boards the day after the conference. I will be considering the device and am willing to travel to another country for surgery if a necessity. I may try the SPG block here in NY first as I know if that works the impant will likely be effective! I definitely remember that question as to whether you had the block came up so thats what spurred me to try it myself before an implanted device. You are invaluable Tim and once I
  8. That's awesome birdman not that you can't get out of cycle but that you went to Hofstra. I went to Stony Brook University I couldn't afford a private school and didn't really qualify for scholarships as my grades were B's due to migraine and a 3 month battle during sophomore year with mononucleosis. I'm sorry I keep bumping this up but it really is nice to be on these boards! I am mainly here to support others, to learn more about busting and the various compounds used by Clusterheads, and lastly to share my experiences busting via high doses of CBD oil made with cannabis. I am not afraid o
  9. No problem Tony I'm glad to contribute in some small way with donations and coverage of CH related events. I really enjoyed hearing from Dr McGeeney he was an inspiration as well as Dr. Fadiman both of whom I will be in contact with as I delve into the world of busting and how it affects my vasculitides/migraines/neuropathy as well.
  10. No thank you all for being accepting of my other diseases and being so open to me being a member. No worries CHFather I am sure we will meet someday as I am planning to go to every CB Conference and every HoH until my death. If you need a sponsor hell if anyone does I make less than $250 a month but hell if I have the money I'd sponsor someone!
  11. It was a pleasure to speak to you too brother and many others who were there and yes Dr. McGeeney was such a wealth of information! I hope to actually go visit him in Boston and have offered to demonstrate the difference between migraines and clusters by triggering myself in his class with O2 present. I'll do just about anything for advocacy even risk a K10 wrecking my mind! It's great to hear from a fellow New Yorker I would be glad to meet up anytime and hang out! Please feel free to visit New York City anytime we're on the island so if you ever are out of cycle long enough to hit the beac
  12. If anyone missed out check out my twitter account I live tweeted the whole thing except the second half of Day 2 I got hit hard and passed out. https://twitter.com/mff181 (My tweets got a lot of coverage well over 300 notifications when I got home from people who interacted with me about CBNash14!) I will also be posting about each day of the event already done 2 articles on it for my blog which you can find a link to below. I will have another article out on Day 3 later today and that will be the final one wto wrap up my coverage of #CBNash14!
  13. Hey Bob I donated 4 amazon gift cards to the raffle and in my note encouraged all the winners to support CB through Amazon Smile I already do so. It's such a simple way to help the organization keep running smoothly!
  14. Indeed this weekend's presentation by Savant HWP was promising and lends me a bit of hope thought I tend to be pessimistic about these situations. GOGO BOL 148!
  15. Score another victory another ignorant mind forced to face the facts that these aren't migraines and they aren't your average excedrin "migraine" ugh, or aspirin and coke headache. This shit is life threatening and I've dedicated myself as an advocate to teaching people more about all my illnesses mainly CH and vasculitis though I started with migraines. Great work Fabac I couldn't have recommended a better way to handle such a situation. Congratulations on being so damn patient! I am sorry she was so in your face to your family and community about this what a jackass.
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