mff181
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Posts posted by mff181
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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!
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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.
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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.
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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.
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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!
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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!
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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.
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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.
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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!
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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!
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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.
(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!
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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!
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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!
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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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I have daily chronic migraines and chronic clusters now all since birth and I think mine are genetic. I can assure you that you can certainly have both and it will agitater your cluster pain levels though it will soon become easy for you to know which you're having because a migraine is nowhere near the same pain level but when having both at once the first few times it can be hard to tell whther your cluster got worse or if you have a migraine as well.
You should certinaly talk to your headache spcialist about this and if he or she dismisses it tell them the founder of cephalalgia has diagnosed me with clusters and daily migraines so it is possible to live that kind of hell every day of your life, it's mine now I have very little quality of life and spend all year looking forward to headache disorder or vasculitis related events which my granparents fund my trips to or I get sponsored.
I hope this news comforts you that it is not bullshit you probably did have a migraine and cluster headache I'd write down everything in detial if you can remeber as thought aout as you can decribe every little trmor and feeling that pops into your head and bring that to the doc or next time you experience it might be good to video tape yourself with an iphone on a stand or a video camera or your caregiver helping to fim it whilst you try to describe to the camera the exact sensations you're feeling and what it is making you think and try to explain how the two types of pain are different like you said similar trigger point bt a bit duller of a throbbing pain that can last hour, days, weeks, even months.
PF wishes to you and I hope you feel better son. Get outta that cycle and you'll be ok migraines themselves are not all that bad I've had them my entire life and have managed to teach myself to read and write when I have a 10/10 migraine. It's nothing near a KIP 10 cluster which I have quite often now and makes me want to blow my fucking brains out excuse my French. But I know that isn't the way out for me. Perhaps busting will give me back my life soon.
Keep in contact with me and send any questions you might have about it I'm an advocate and very happy and friendly to answer any questions you may have.
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Hey you're allowed to complain chronic or episodic this illness sucks a big one! As for your teens I wouldn't think you'd have a proble should they know the severity of your situation. I myself am quite young and if I ad to I'd grow them for my mother without any intention of utilizing it recreationally myself I don't think your children would be capable of being so selfish whilst watching what you endure even on an episodic level.
I myself just became chronic and am about to try busting with RC seend and then move on to psilocybin if necessary. If your kids know the seeds can have a psychedelic effect and haven't touched those I'd wager they wont mess with your shrooms either.
I hope my input makes you feel a bit better hugs and PF wishes for you. Hoping you're out of cycle and up and about soon as possible!
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Well folks after over 14 hours we are back home on Long Island from the conference. I am Michael Fernandez. Many of you know me from HOH or from my blog Migraine Discussions. Anyways I thought I'd post here to let everyone know I've joined up in the forums so add me to your buddy list I'll be adding everyone I know and new friends I make online that I'll meet at future conferences.
Even though I had insomnia during the conference and couldn't make it through most of the second day( I got hit twice after Dr. McGeeney's presentation and had to get back to my room apparently I passed out and somehow or other my mom Alicia who many of you also know got me into bed and kept checking on me. Thankfully she heeded the advice of John Bebee and so many others who told her to just let me rest I rreally needed the sleep as I hadn't slept for days before the conference either. Partially sue to all the excitement of seeing all my new friends and meeting up with people I alrready knew.
Anyways about 15 minutes from the house we almost died. a car came up the left lane going well over 120 mph he was a dot on the mirrors one second then he started swerving as he approached and THANK GOODNESS he missed us by mere feet and swertved accross 3 lanes into a tree where the car literally exploded and we were hit by falling debris. Many cars stopped but I called 911 asap and gave thewm all I could remember as I was already being hit by a cluster KiP 5 at the time and needed my O2. Besides that my mom is an RN she knew what we would see and didn't want my cluster getting qworse or me trausmatized by seeing the dismembered body of man who only second earlier was high on life and maybe other things just zooming about. I truuly hope that in a miracle he survived but we will find out on the news I guess. the trees he slammed into set abalze immediately and it was the scariest thing I've ever felt even though I've had 6 near death experiences that I can remember and several more as an infant.
I can't get the guy's outline out of my head as I saw his mouth open mere milliseconds before he went off the road. I only hope he didn't leave a wife and young kids behind. I can't sleep thinking about it I'm up just afraid of more clusters since I got hit with at least 2 every night of the conference which is new for me.
I am seeing my headache doc Friday since I've gone chronic I've got O2 and sometimes that's enough but I need a new regulator as mine only goes up to 15 LPM and at the conference I was clearing the bag outside the conference room at 25 LPM with just a KIP 7 (Mine at typically 8-10 for a duratrtion averaging an hour). At one point I was even clearing the 40 bag but that got me back on track and I slowly tapered back down to 25 LPM then 15 LPM and aborted it within 15 minutes or so thanks to John Bebee who helped me out of the room and saved me from passing out by getting the O2 ready since someone had fiddled with the set-up of the Opti,mask there.
One thing I'm contantly working on is to stop saying sorry for things I cannot control, it's a bg problem for me. I felt guilty making my mom leave the room and for interrupting a conversation John was having. I know they liekly did't mind one bit but for some reason it bothers me. I'm also seeing Dawn Buse as my psychologist over at Montefiore who might be a good speaker at CB in the future perhaps if Lee or Bob want I'll bring it up with her. She's helped me become far less suicidal than I was when I got to her even though she is often traveling she does phone appts if you need them. And in my case she knows I do.
I guess it's a little harder not to consider suicide inb my situation because as some of you know I have a deadly incurable disease for which I've failed every treatment besides clinical trials...and they deny me from the trials due to my other pre-existing conditions. If I don't get remission the time span I've been given is 8-14 years and I'm only 23 about to turn 24. I just don't know how to stay strong anymore without leaning on someone's shoulder all the time it seems. Being in a wheelchair doesn't help either it makes me feel like a burden to anyone who has the job of puching me around wherever I go and having to find handicap accessible pathways everywhere.
I just wanted to thank you all for listening to me at the conference and not shunning me just because I have a few other odd diseases. I don't really have many friends anymore all but 2 from college have all forgotten about me since they learned of my terminal illness. My friends sinbce birht all shun me and claim things like IBS keep them from coming to visit which I can't understand because I have a terminal illness, can't walk, chronic cluster & migraines, and I still make it where I need to be most of the time. I'd never leave a friend like that who's down and out so I don't know how it happend to me maybe I just hung out with the wrong people during my life.
Anyways I now am an avid advocate I try to write a poem and an article whether it be a health update, conference info, or a video, sometimes self help tips or a review I still try and publish each day. I hope you'll all follow it as the blog is called "Migraine Discussions" but that's soon to change to Voice of the Patients. I was misdiagnosed at first so I thought I only had migraine but that didn't explain and handful of symptoms. Anyways if you have any questions about me just ask I'm an open book working on writing 5 books of his own.
I just can't wait to be a part of this forum and be active since I don't really have much of a life, I remain in my dark little corner most days and nights with my trusting dog Loca, so again thank you for accepting me and it was a pleasure to meet all of you just as it was ap my pleasure at Headache on the Hill.
I will be at all future CB conferences until the day I die or something BIG gets in the way, and I will be at Headache on the Hill as well hopefully paired up with my now great friend Steve who many of yo know from upstate New York special shout out to him as well because he has been super supportive whenever I need him.
-Michael
Clusterbusters 9th Annual Conference Presentations
in Advocacy, Events and Conferences
Posted
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.