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Topic: First time here... (Read 4328 times) |
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Gandalf the White
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Originally, "MadFlash," Now, just old and crazy...
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First time here...
« on: May 2nd, 2006, 6:18pm » |
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My girlfriend discovered this website.
I was a healthy, extraverted, vigorous kid until I reached 17 years...
I've had daily Clusters (usually around 3:30 AM and again late afternoon/evening) since I was 17 years old. I tried to take my life at 18 years... This December '06 I turn 49...
I attempted suicide (it was violent and I shouldn't have survived) in 1993; I just couldn't take anymore.
That's about it for now. I just wanted to add myself to this forum. I'm uncomfortable discussing my illness.
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"... All we have to decide is what to do with the time that is given to us."
~Gandalf the White~
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medic1852
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This will only hurt for a little while!
 
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Re: First time here...
« Reply #1 on: May 2nd, 2006, 6:26pm » |
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If you suffer from CH. Then welcome. Look around and you will find that there are others here who have had the same thought. That is one reason we are all here to support each other. We understand the pain that the other is feeling. So look around and be welcome.
Rodger
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Shoot Low Sherrif He's Riding a Sheltland Pony!
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Kevin_M
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withered branches grow green again.
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Re: First time here...
« Reply #2 on: May 2nd, 2006, 6:35pm » |
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If you want to share with other sufferers like yourself what has helped you get by, feel free.
Lots of good around here.
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Richr8
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It's all about today...
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Re: First time here...
« Reply #3 on: May 2nd, 2006, 6:44pm » |
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on May 2nd, 2006, 6:18pm, MadFlash wrote:| I'm uncomfortable discussing my illness. |
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Maybe being around folks who suffer in a similar way will change that. Welcome and dig in. Lots to read here.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Guiseppi
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Re: First time here...
« Reply #4 on: May 2nd, 2006, 7:04pm » |
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You might find a better comfort level here because no one will answer you with...Oh yeah my sister gets migrains I understand, or Oh yeah I had a sinus headache once I know just what you mean.
The beauty of this site is never having to justify yourself, never having to explain the pain, and knowing that when someone says they understand...they really do. So glad you found us, take your shoes off, sit down and yack with us a bit.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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Gandalf the White
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Originally, "MadFlash," Now, just old and crazy...
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Re: First time here...
« Reply #5 on: May 2nd, 2006, 8:06pm » |
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on May 2nd, 2006, 7:04pm, Guiseppi wrote:You might find a better comfort level here because no one will answer you with...Oh yeah my sister gets migrains I understand, or Oh yeah I had a sinus headache once I know just what you mean.
The beauty of this site is never having to justify yourself, never having to explain the pain, and knowing that when someone says they understand...they really do. So glad you found us, take your shoes off, sit down and yack with us a bit.
Guiseppi |
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Thank you.
My experience with Cluster is all-bad. Dark. I was amazed and terrified by the reaction of family, friends, DOCTORS when I first experienced Cluster. I thought I was going to die--my worst fear was to lose my mind during an attack; but no one seemed all too concerned. Back then I was convinced that I was possessed/trapped in some kind of nightmare - HELL. I grew so damn angry by the reaction of those around me that I was determined to survive and succeed just so I could say, "Screw you; thanks for nothing..." Earlier on Doctors were of little to no use. I was determined to find my own cure. I slipped at 18. But I fought hard and long and did claim a good measure of success in my life until 1993. I lost my Father to suicide, my business bottomed-out, my fiancee left me, and then my Doctor decided to take me off meds in order to rule out "rebound" headache! I was lost within a month...
YES, I do have Chronic Cluster. The pain never goes away for long! Most standard therapies only work for a few months or so or not at all. I have a new Neurologist. I am taking this new trip one step at a time, day by day. I am trying to remain positive... or at least open-minded. I trust this Doctor. (I want to trust this Doctor.) But I got to admit--here, only--that I can't see much sense in putting up with this much longer. And especially at my age. This is so strange speaking freely as I am here. I have discovered over the years that such things are best kept private... at least in my case. Why do so many people find it so damn hard to believe that another can experience such extraordinary pain with such frequency and still remain half sane or alive? I still remember in perfect detail my first violent attack. Wow. I got to stop for now. Sure, I speak to a Psychologist who deals in chronic pain. But once again I must emphasis that I am unaccustom to speaking freely about this devil, and speaking openly like this freaks me out. Yes, I keep a journal, as many of you probably do too. Thanks for the support.
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"... All we have to decide is what to do with the time that is given to us."
~Gandalf the White~
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Kris_in_SJ
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Re: First time here...
« Reply #6 on: May 2nd, 2006, 8:15pm » |
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Hi MadFlash,
I'm sorry you're suffering so! You'll never find a better group of people who understand and support you. We're one big family - we bicker and fight sometimes - but we're always there for each other.
If you don't have an aversion for alternative therapies and continue to have problems after you see your new neurologist, you might want to visit our friends at clusterbusters.com. It's an entirely different avenue of treatment that works especially well for chronic sufferers.
Many hugs and PF wishes,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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Charlotte
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Re: First time here...
« Reply #7 on: May 2nd, 2006, 8:19pm » |
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I found that people with migraines don't understand why my medicine won't work, and that includes the doctors with migraine.
I don't like to educate people or let people know what I really go through so this is the place I find my comfort zone. I can talk to others about pain, in general, but I don't want to explain how bad it is to anyone who can't see it, for my own sanity.
I'm glad your girlfriend found the site. There is a whole section for supporters, so she is welcome here, too.
I hope you will consider us part of your family.
Charlotte
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MJ
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Re: First time here...
« Reply #8 on: May 3rd, 2006, 1:12am » |
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Welcome home Madflash.
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MJ
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Bert
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Re: First time here...
« Reply #9 on: May 3rd, 2006, 3:12am » |
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Hi Madflash,
I "discovered" this site only yesterday and since then I've learned so much more about CH. It's very comforting to communicate without having to explain what you're suffering from time and time again.
When reading the experiences of other clusterheads I realize that I have a great GP and neurologist. It only took them a few weeks to find out what was wrong with me and now I have a "hotline" with my neurologist: I can call him anytime when I need stronger medication or advice.
I hope this site will do the same for you as it has done for so many others.
I wish you all the best from Holland.
Bert
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You're in for surprise, you're in for a shock. When you least expect me and you turn your back, I'll attack. ( by Judas Priest )
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Jasmyn
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Re: First time here...
« Reply #10 on: May 3rd, 2006, 4:15am » |
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Yip, you're home. 
Welcome.
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Jazz
Madness is proclaimed by society’s inability to accept its own infallibility
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RichardN
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Re: First time here...
« Reply #11 on: May 3rd, 2006, 4:19am » |
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Welcome Home Madflash
When my wife found this site (2/02), after a year of mis-diagnosis, non-working meds, "normal" tests (CTs, MRI, etc.), and having 6-8 attacks, Kip 5-9 per day and sometimes 3-5 a night . . . I was a basket-case.
This place gave me the tools necessary to get my life back . . . I seldom fear sleep anymore.
You have much to read and many questions to ask, and here the info/caring/sharing comes from folks who truly know your pain. You are no longer alone.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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E-Double
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Are we ourselves?
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Re: First time here...
« Reply #12 on: May 3rd, 2006, 4:21am » |
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on May 3rd, 2006, 4:19am, RichardN wrote:Welcome Home Madflash
. . . I was a basket-case.
This place gave me the tools necessary to get my life back . . . I seldom fear sleep anymore.
You have much to read and many questions to ask, and here the info/caring/sharing comes from folks who truly know your pain. You are no longer alone.
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Well put!!!!!
Good to "meet" you and wishing you the best!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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marlinsfan
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Re: First time here...
« Reply #13 on: May 3rd, 2006, 8:31am » |
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Welcome home, Flash. Lot's of weapons out there to fight the beast. Traditional meds can be found here:
http://www.brightok.net/~mnjday/chtherapy.pdf
One alternative which many use after they can't get relief via the traditional methods:
http://www.clusterbusters.com
I'm like you in that I talk to NOBODY (except my wife) about my condition. Even here I don't talk about how bad it is, only about what works and what doesn't, and I do my best to help others just like "strangers" here have helped me. Like you, I've also had this for 24 years, and like you I had a gun in my mouth about 10 years ago.
Hang tough, stick around.
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Gandalf the White
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Originally, "MadFlash," Now, just old and crazy...
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Re: First time here...
« Reply #14 on: May 3rd, 2006, 9:35am » |
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on May 3rd, 2006, 8:31am, marlinsfan wrote:Welcome home, Flash. Lot's of weapons out there to fight the beast. Traditional meds can be found here:
http://www.brightok.net/~mnjday/chtherapy.pdf
One alternative which many use after they can't get relief via the traditional methods:
http://www.clusterbusters.com
I'm like you in that I talk to NOBODY (except my wife) about my condition. Even here I don't talk about how bad it is, only about what works and what doesn't, and I do my best to help others just like "strangers" here have helped me. Like you, I've also had this for 24 years, and like you I had a gun in my mouth about 10 years ago.
Hang tough, stick around. |
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My God!
medic1852, Kevin_M, Richr8, Guiseppi, Kris_in_SJ, Charlotte, MJ, Bert, Jasmyn, RichardN, E-Double, marlinsfan… I hardly know how to respond! I wish I could reach out and touch all of you. I have felt so isolated for most of my life. Loneliness is such a drag. Charlotte wrote, "I can talk to others about pain, in general, but I don't want to explain how bad it is to anyone who can't see it, for my own sanity." How true! Often I find that the aftermath of an attack is as bad as the horror itself, and I need time to chill and unwind, and another hour to gather my senses; and having to explain myself to those around me is excruciating. I know it is not necessary to describe the pain, recurrence, duration, and reaction to all of you here. You understand… RichardN wrote, "I was a basket-case. I seldom fear sleep anymore." Such a little and insignificant thing is sleep to most others. I still pray for one good uninterrupted night of peaceful sleep. Nothing is worse than screaming out of bed feeling a razor piercing white-hot wound! Better to be half-sane than insane… though I am a basket case when the devil comes. I fear that one day I may literally lose my mind. Richard, I want to be safe. I want to believe that I am a strong individual… Kris, when you wrote I’m sorry you’re suffering so… and MJ added, Welcome home MadFlash, I cried. No one has ever treated me with such care and respect… It is hard. A little understanding goes a long way in contributing to my self-esteem and feelings of worth.
Kris, I am constantly searching for alternative therapies. I teach private lessons in Sivananda Yoga, certified by http://www.sivananda.org/. I also instruct in Taoist Tai Chi, http://taoist.org/english/index.php, although I hardly stray far from my apartment now. I work from home. I hold a B.Sc. in Computer Programming.
(I studied from my kitchen table, part-time, and earned my degree through Distance Education.)
I look forward to exploring http://www.clusterbusters.com/.
(Please be patient with me while I warm-up to this extraordinary method of communicating. I was so utterly drained and overwhelmed last night following my first two entries that I had to retreat. I was scared. I was uncertain.)
RichardN also said, "You have much to read and many questions to ask." I would appreciate any direction or advice any of you may care to lend. I would like to know you all as friends.
Bye for now.
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"... All we have to decide is what to do with the time that is given to us."
~Gandalf the White~
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Ghost
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Re: First time here...
« Reply #15 on: May 3rd, 2006, 10:05am » |
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Sorry for getting here so late Mad but welcome to the mad house of pain. Most here have been pushed to dark places durring hits and some have tried to make it stop at any cost. We all deal with it differently but when you have a support system like we have here it becomes so much easier to deal and harder to end it. This is some of the best people in the world and from all over the world. I try to use humor to cope but some here may tell you that I try but usually don't succeed. 
I hope things start to look up soon for ya and PF time ahead.
Mike
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Illigitimus Non Tatum Carborundum
If all men are endowed by their creator, why was mine so short sighted?
***WARNING*** Oxygen will rust your pipes!
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marlinsfan
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Re: First time here...
« Reply #16 on: May 3rd, 2006, 10:41am » |
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on May 3rd, 2006, 9:35am, MadFlash wrote:I would like to know you all as friends.[/i]
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You can call me and other friends anytime you like, but I like to think of this place as my Family.
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Redd
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Re: First time here...
« Reply #17 on: May 3rd, 2006, 11:23am » |
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Welcome Home!!!!!
This is family here, and you can rest assured we DO understand intimately what you deal with.
I want to assure you as well, that we all were in the darkest, most isolated depths of our own living hells before finding this site, and THANK YOU AGAIN Deej...(the creator of this home) for building this retreat. You can probably guess how many of us cried tears of relief when reading the first few stories, "I am not alone....I'm not crazy. This thing is real and others actually understand!!!"
Frame of mind changes once all this soaks into your system and takes hold in your heart. This site has literally saved hundreds of lives, mine included.
I'm pleased to make your aquaintance, and do jump in with both feet.
Please feel free to visit the OUCH-US non profit website as well.
www.ouch-us.org
There may not be a cure...but there is hope, and help, but most important.....the best medicine of all....love support and understanding of others that truely know and understand.
Pegg
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Linda_Howell
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Hearing is one thing. Listening is another.
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Re: First time here...
« Reply #18 on: May 3rd, 2006, 2:17pm » |
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Welcome Madflash,
Quote:| Why do so many people find it so damn hard to believe that another can experience such extraordinary pain with such frequency and still remain half sane or alive |
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I don't know how you might feel about showing this to someone who doesn't understand but Chuck allowed himself to be video-taped during a hit JUST SO Dr.s and Neuros who don't get it....might.
Windows media player
http://tinyurl.com/hwdum
Graphic...please be forewarned.
You truly are among family here.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Jimi
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Who loves ya baby!
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Re: First time here...
« Reply #19 on: May 3rd, 2006, 2:28pm » |
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Welcome aboard Mad Flash. I just wanted to say to never give up hope. I am 57 years old and started my clusters at the age of 20. My cycles were yearly or twice a year. My last cycle lasted 6 mos. I thought I was going chronic. And then they stopped after 37 years. That was in Aug 2000. I have been pain free since. They may come back, I don't know. Or I may truly have out grown them. Time will tell. I just wanted to offer you hope that they do sometimes just quit for no reason. Gather up some money and come meet us in July in Milwaukee, Wisconsin at our annual convention. It will be worth it.
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I am convinced that life is 10% what happens to me and 90% how I react to it.
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PollyPocket
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Re: First time here...
« Reply #20 on: May 3rd, 2006, 4:20pm » |
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Hi Madflash. Welcome to your new home We are friends and family here. We are all here to help and support and encourage and get you thru the tough spots.
These people here have been truly a lifeline for me at times, and I am certain we all have been for each other- even if its just a crappy day.
I've been episodic for 20 years, cycle almost every fall for 3-4 months, but did get a 3 year remission once. Just like most everyone else, I thought I was alone in this, searched online, books, everywhere, and found nothing. Till this site. I sat staring in disbelief that there were others who understood what I dealt with, I mean REALLY understood. Then balled like a baby when I got a response to my first post.
There is so much to learn here, and believe it or not, so much that YOU can contribute too. You are valuable to us, and welcomed more than you know.
So kick off your shoes, plop yourself down on the big comfy couch and stay a while. And give that girlfriend a big ol' hug for getting you on here. She is welcome here too. 
Wishing you peace and pain free times.
Jen
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
"If I don't remember it happening, it never happened. " - Tori
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Sean_C
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Welcome Madflash I see you've come to the right place You'll find that everyone here understands your pain. Although we're all different when it comes to responding to treatments, we have one thing in common, unilateral pain.
PLease look into this http://homepages.nildram.co.uk/~tritech2/clusterx/index.html
And just so you know, WE never give into the beast here, its a major rule
Cheers 
Sean..........................................
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maffumatt
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Welcome to your new home on the net, we know your story all to well. Hope you find the information and people here as useful as I have-
matt
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Gandalf the White
New Board Newbie
Originally, "MadFlash," Now, just old and crazy...
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Re: First time here...
« Reply #23 on: May 4th, 2006, 12:40am » |
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on May 3rd, 2006, 10:41am, marlinsfan wrote:
You can call me and other friends anytime you like, but I like to think of this place as my Family.
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Yes. I stand corrected. You are my family. It is hard trusting--at first shot. My experience with all of this--CH is bad bad bad... all bad until now.
Pegg, thanks for the support. I will visit www.ouch-us.org. Linda I will watch the video when I feel stronger. I am afraid...
Jen, I am still soaking all of this in. I too am amazed with this special place on the www! Sean, thank you. So many sources to explore. I had no idea... I am not alone after all. I do the best I can; I can promise nothing more.
Jimi, I would like to attend the convention. Your story is encouraging. Thanks for sharing. I can wish/pray.
Mike, I agree. I do have a healthy sense of humor when I am well.
I apologize for fading again. I have not slept... my head... jesus it hurts... it hurts... it hurts so much.
I had to check back and respond to all of you good people. Thank you so much. I wish I could hang here for a little bit longer but I am. I got to stop now. It hurts... I got to move... I wish I could lose myself. Shit! I can not type at all. I will be back. I promise. The pain.
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"... All we have to decide is what to do with the time that is given to us."
~Gandalf the White~
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RichardN
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Re: First time here...
« Reply #24 on: May 4th, 2006, 12:01pm » |
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Hey again MadFlash
If you have not tried 02 . . . GET IT AS SOON AS YOU CAN! Works for 60-70% of us to abort an attack. I can't take triptans (like Imitrex) due to arterie blockage and high cholesterol . . . so 02 is my only abortive . . . a real miracle for those of us it works for. Copy the info off the "brightok" link that marlinsfan posted and take to your doc for a script. You need a 15 lpm regulator and a non-rebreather mask (or clustermask) to be effective. This is currently recognized (by medical community) therapy, and if he won't prescribe it . . . find a doc who will.
Water/water/water . . . see link "water X 3" on left. I am convinced this therapy has been beneficial to me and many others . . . . worth the extra trips to the john if it can reduce the number/intensity of the hits.
Explore the kudzu info . . . . especially the "survey" . . . . haven't seen lots of those folks arround lately . . . . and I take that as good news.
Verapamil worked for me . . . . but you might already have tried it. It is a taper drug and you taper up til' you hit an effective dose. I had my first PF day at 240 mg (low for many), got as high as 360 mg. Many take much more and in combination with other drugs (such as lithium)
Can you give us a list of the meds you've tried that didn't work? Any that showed promise?
There is not a drug/therapy out there that hasn't been tried/explored by someone here and the effects/side effects are pretty well documented.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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