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mff181

Home After 4 Hits and Almost being Killed

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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

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Wow, seems you have a lot to handle besides the CH and that's enough for anyone.  As a fellow NYer I am sorry to say I heard about the accident which resulted in two fatalities, driver and passenger.  I am so glad you had the strength and commitment to make the conference.  I missed it as I am currently in cycle but it doesn't seem like you let that stop you.  And that's a good thing.  I finally got correctly diagnosed at Montefiore and credit them with saving my life as well.  I hope you can continue your efforts and thanks for sharing!!

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Well John BeBee is a hero in so many ways to us clusterheads, so it's not exactly a surprise at all to hear how he rushed to your aid!

I've got O2 and sometimes that's enough but I need a new regulator as mine only goes up to 15 LPM

AGREED. From what I've observed and experienced bumping up to higher flow can make the big 'ol difference. With 15 working for you sometimes, I bet the higher flow will REALLY work. 15 LPM, and even 25 LPM in high cycle, doesn't do jack for me, but 45 LPM does, so especially after seeing BB's O2 demo and talking to Dr McGeeney on the high flow subject, I'm thinking you'll be a prime candidate for the high stuff, you may want to consider a regulator that goes to 45 or so.  8-)

That whole driving home experience sounds like something out of a movie - a very disturbing movie - between the 4 hits and the mind blowing close car crash encounter.  :o

Man it's great to have you on this forum now Michael. This is a genuine boon for us.  :) I was glad big time to get a chance to talk to both you and your ma :), and get some some of your insight on the hemp oil CBD subject.

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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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You guys are just making me feel worse and worse about missing the conference!  Michael, I'm thrilled that you're here. Thank you so much for all you have already done, and thank you in advance for the support you will be to future visitors to this board.  I hope maybe we can continue to help and support you, too.

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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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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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Hey Michael, its Tom aka ClusterHead Survivor on FB.

It was my pleasure meeting you and please PM me if you need to talk anytime on FB.

I can relate in soooooo many ways...as others can. Especialy about the doughe bag friends we once had.

I don't wish the CH on anyone but as I laid in the hospital for 30 days total...I wasnt them to feel the loneliness I felt laying there without a visit, without a call, text,  email, shit anything....nothing from no one. And they knew when and were I was. Pathetic huh. How badly can we have pissed our friends off? We didn't Michael. They are just cowards. Self absorbed bastards who live the life of no pain or health issues and are so tied up in their own mental state they can't even have the balls to face us.

I see the one bastard sometimes a couple times a week(we belong to the same group of car events as we are both car guys). But this prick is a firefighter. He once told me...i can't bear to see you have an attack, its to hard. I thought you cowardly bastard...try being the one having the attack!

So Mike....don't sweat it....just cowards. Forgive them for yourself. Not them. Move forward. We are family now. us cluster Heads at CB and on FB are your friends and family now...capiche?

Love ya man

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I am so happy that you found this group of people!  I, like you was flying solo, not because the support was not there, but because I was so embarrassed by the condition ( had these for my whole life, 50 years) or because way back when I first started seeing doctors and having tests, they didnt know what CH was, so in their professional opinion I was either crazy, or just trying to get drugs.  This site has saved me, and given me courage and support to trust people a little more, and because of that maybe educate them more and raise as much awareness as possible. Thats a lot of the battle.  I wish you blessings and luck and much pain free time.  If you ever need another guinea pig feel free to pm me.  I am willing to do anything to beat this frickin beast down and keep him down.  So sick of the pain .  HUGS for you! and I will add you to the ninja hug recipient list for the conference next year!

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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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Glad to see you are upbeat. Once I get this damnable cycle behind me I would love to meet you. As I have stated before,  I have only meet one other sufferer in person and it would be great to talk to someone again who knows the pain.

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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'm not to educated on much besides the mushiness and the vitamin d3 and even that is limited. Never was a science guy but will do some reading on the cannabis oil. First, I gotta kill this cycle before it kills me

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