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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 awoke I knew the pain was out of sight I absolutely needed to continue to fight so I got in my comfortable corner that night wishing I had my dog at my side and flowing O2 bag on that constant rise I felt safe again for I knew this pain would subside relief did not come quickly but all that matters to me is that IÂ’m no longer convulsing in pain puking blood and vomit down the drain feeling like my mind is driving me insane yet to the average person I look mundane theyÂ’d never know about my invisible illness unless they saw an attack first hand oh goodness that would show them what my diseases are killing me from the inside and not visual from afar to know that IÂ’m sick you need to know me so why not become friends in pain relief I know we all want to be set free from this agonizing lifestyle we live constantly KIP 10Â’s ruining days running rampantly destroying lives and families we cannot continue to let this happen so letÂ’s go ClusterBusters, please, let us take action!
  3. mff181

    Home After 4 Hits and Almost being Killed

    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 touch brother and I'm sure we will meet soon, there was also someone else from Long Island there from Commack so I'll get in contact with him and maybe us three cluster heads can meet up each month to hang out start a little hang out group/support group for each other.
  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. mff181

    Home After 4 Hits and Almost being Killed

    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 been reading your posts and some of them have been really helpful to me as I'm a newer member of the boards too. I've been going to the CB website for so long I don't know how I missed this opportunity earlier. I've lived with it my whole life too though as an episodic until this cycle which I've gone chronic having up to 10 attacks a day so far which seem more and more resistant to O2 relief. These people have saved me as well I was misdiagnosed until 23! I went to the ER twice a year trembling and flailing in agony trying to get the words out to explain that this wasn't a headache and the nurses never believe me until they take my BP and its been 230/145 at times which is fucking scary especially with a heart rate resting at 160 feels like your heart is gonna explode! Anyways I am far more comfortable than I was before the conference now with busting and will be documenting all my experiences on video for my own knowledge and make an archive of my attempts along with a good journal which my fiance is helping me keep up to date because as you all know sometimes during an attack you really don't have the time nor the mindset to be writing in a headache journal. Heck sometimes I go blind and can't see and need to yell until someone hears me either a neighbor or family member and beg for them to bring me to my O2. It was embarrassing at first and so is being dressed and showered by my parents with my vasculitis but I've come to terms with the fact this isn't my choice it isn't my fault it's just me. I'm just glad I have you ladies and gentlemen here and today I will sign up for the CH.com boards too under the same name. I know many of you frequent that site as well.
  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 Smile and donate to CB through that. I'll post again later with all my new stuff we also got the "O2 Suck it" and I <3 O2 t-shirts there from chris. It was a great time and I heard lots of auction items went for $400 or more like the signed guitars and the custom quilts. Hoping there's more CH related artwork next year as I love my mosaic!
  7. mff181

    Hi, it's Tim from Germany ;)

    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 re-do my site and change the name to Voice of the Patients LLC I'd be more than proud to interview you and offer you a money making opportunity giving online lectures about your device and procedure. Hope to talk again soon Tim PF wishes to you!
  8. mff181

    Home After 4 Hits and Almost being Killed

    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 of the authorities and I like people to know they can ask me anything. Unless I find an answer my terminal illness is on schedule(lol as if there was one), but I am told I have 8-14 years left. I hope to spend each and every year I have left getting to know as many of you as possible and becoming family. CB is the most supportive group I've ever been a part of and I've been a director of what I thought was a good support group before, they turned out to be a migraine group called CMA(Chronic Migraine Awareness) they kicked me off the board after I was suicidal due to a cluster....how fair is that? They made me think of trrying suicide twice just due to situations with them my mind set is far better now that I avoid that group even though I still maintain supportive friends who are in it. I just don't recommend that particular group because it seems potentially deadly if the supporters start flaming you and thats what happened for me all for the crime of fundraising over $600 for them and selling their products via my name and endorsement. I no longer endorse such a hypocritical group, but if you just have migraines it seems decent enough. Though they will try to 1 up you...when I told the board I was dying and had CSS they all came up with near death experience stories and said they understood. Obviously they didn't.
  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. mff181

    Home After 4 Hits and Almost being Killed

    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. mff181

    Home After 4 Hits and Almost being Killed

    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 beach contact me and lets meet up!
  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. mff181

    Amazon Smiles

    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. mff181

    Any news on BOL-148?

    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. mff181

    Proud of my self restraint

    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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