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Title: First time here... Post by MadFlash on May 2nd, 2006, 6:18pm 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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Title: Re: First time here... Post by medic1852 on May 2nd, 2006, 6:26pm 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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Title: Re: First time here... Post by Kevin_M on May 2nd, 2006, 6:35pm 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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Title: Re: First time here... Post by Richr8 on May 2nd, 2006, 6:44pm on 05/02/06 at 18:18:42, MadFlash wrote:
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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Title: Re: First time here... Post by Guiseppi on May 2nd, 2006, 7:04pm 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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Title: Re: First time here... Post by MadFlash on May 2nd, 2006, 8:06pm on 05/02/06 at 19:04:48, Guiseppi wrote:
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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Title: Re: First time here... Post by Kris_in_SJ on May 2nd, 2006, 8:15pm 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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Title: Re: First time here... Post by Charlotte on May 2nd, 2006, 8:19pm 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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Title: Re: First time here... Post by MJ on May 3rd, 2006, 1:12am Welcome home Madflash. |
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Title: Re: First time here... Post by Bert on May 3rd, 2006, 3:12am 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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Title: Re: First time here... Post by Jasmyn on May 3rd, 2006, 4:15am Yip, you're home. ;) Welcome. |
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Title: Re: First time here... Post by RichardN on May 3rd, 2006, 4:19am 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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Title: Re: First time here... Post by E-Double on May 3rd, 2006, 4:21am on 05/03/06 at 04:19:20, RichardN wrote:
Well put!!!!! Good to "meet" you and wishing you the best! Eric |
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Title: Re: First time here... Post by marlinsfan on May 3rd, 2006, 8:31am 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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Title: Re: First time here... Post by MadFlash on May 3rd, 2006, 9:35am on 05/03/06 at 08:31:47, marlinsfan wrote:
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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Title: Re: First time here... Post by Ghost on May 3rd, 2006, 10:05am 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. ;;D I hope things start to look up soon for ya and PF time ahead. Mike |
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Title: Re: First time here... Post by marlinsfan on May 3rd, 2006, 10:41am on 05/03/06 at 09:35:37, MadFlash 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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Title: Re: First time here... Post by Redd715 on May 3rd, 2006, 11:23am 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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Title: Re: First time here... Post by Linda_Howell on May 3rd, 2006, 2:17pm Welcome Madflash, Quote:
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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Title: Re: First time here... Post by Jimi on May 3rd, 2006, 2:28pm 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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Title: Re: First time here... Post by JenniferD on May 3rd, 2006, 4:20pm 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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Title: Re: First time here... Post by Sean_C on May 3rd, 2006, 5:05pm Welcome Madflash ;;D 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 [smiley=me&mb.gif] Sean.......................................... |
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Title: Re: First time here... Post by maffumatt on May 3rd, 2006, 5:08pm 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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Title: Re: First time here... Post by MadFlash on May 4th, 2006, 12:40am on 05/03/06 at 10:41:13, marlinsfan wrote:
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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Title: Re: First time here... Post by RichardN on May 4th, 2006, 12:01pm 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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Title: Re: First time here... Post by Melissa on May 4th, 2006, 1:47pm You will find no other humans on earth are like those who have had clusters. The uniqueness goes well beyond the pain. We are all extremely diverse, but there is no one else on earth who will understand you, and accept you like we do. yes... welcome home. :) mel |
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Title: Re: First time here... Post by MadFlash on May 6th, 2006, 9:47am on 05/04/06 at 13:47:30, Melissa wrote:
Thank you Mel! Richard, I will do as you instructed and get back to you all with the results. My wife Melissa (SweetMelissa) posted recently on the support forum. She is as surprised as I am with the wonderful help and guidance demonstrated here. I have a question: I do not mind at all if Melissa reads my posts in this forum and she has no objection to my reading hers posts… But is it fair or appropriate to do so? I keep a journal and she keeps a diary, but I do not look in her diary unless she feels like sharing, and she is of the same mind regarding my journal. As an example, I do not expect her to tell me every detail she shares with her closest friends… Perhaps I am just concerned that if she knew that I was reading her posts she would not speak as freely as I expect she has? Or perhaps I am more concerned that if she knew just how morbid my thoughts turn that she would be scared to death! Melissa completes me. She is my anchor, she is my heart, she is my solace; I feel whole and grounded. Melissa is my best friend. It has been a couple of days since my last post. Since early morning, May 2, I have been fighting the beast. No sleep, very little food, seclusion. But the devil got me good on the night of May 4. I fell to sleep for a moment while reading and I woke in absolute horror... I am still here, and I am still sane. I kept repeating this to myself for hours, I am still here, and I am still sane… until finally the devil let go of my head. I saw my Psychologist yesterday. Our last visit was in February. He was recently promoted in January and moved to another district. At the conclusion of our appointment he said, "I feel we should negotiate the end of our relationship…" After 6 years that was all he had to say! He also added, "We both knew this day would come… we are both moving in new directions." This was new news to me. Bad news. I was hit completely by surprise. I was speechless. I can deal with this. But when I spoke to Melissa later I realized that this encounter sparked past memories with similar feelings of rejection, which I would like to share here. 32 years suffering and my only support now are Melissa and my new Neurologist. I developed symptoms during my sixteenth year. I had to leave school when I was 17 due to the daily pain and terror of CCH. My family treated me like a leper, a pariah. I was treated like a lunatic! I lost most of my friends! All of my life prior to the onslaught of CCH was good. I enjoyed the company of relatives—I had a large family. I was popular. I was active. I had the respect and admiration of both family and friends. And then I had nothing. I was terrified. I was helpless. I was alone… My Father finally took me to a Doctor 2 months after the fact! (In retrospect I realize that I was rather naive in youth, but then I was a complete mess. I was afraid to venture away from home.) My Father spoke with the Doctor first. When it was my turn to sit in the office and the Doctor returned, the first words out of his mouth: I am making you an appointment to see a Psychiatrist next month, and then he gave me a prescription for Valium! My Father did not say one word to me all of the way home. I was 19 before another Doctor referred me to a prominent Neurologist! But by then I was beat down hard and out and convinced that I was mentally ill. It was all in my head. I heard this repeated so many times that I had finally come to believe it. And as a result I have gone to extreme lengths to hide my illness from others from that moment on… and this is the reason why I still find it difficult to share my pain with anyone today. This is a hard mind-set to break! This is my experience. Today I hardly associate with family. I have only a couple of friends. I had to get this off my back… I am a tad depressed. I noticed today that I have collected some private messages. I promise to answer soon. |
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Title: Re: First time here... Post by MJ on May 6th, 2006, 12:43pm A man can go through life and develop hundreds of aquiantances some we think of as friends. Each often have there own agendas in mind. When there agendas are no longer met they move on. A man is very lucky in his life if he can say that truly he has 2 friends. That is those without an agenda. those who will be there for you when you need them most. They may not know you completely but you know you can count on them. I read a post by sweet mellissa. You are one of the luckiest of men. |
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Title: Re: First time here... Post by alchemy on May 6th, 2006, 5:47pm Welcome aboard Mad flash. Yuo are indeed in the right place. The family here is the best, they've sure helped me through rough times. Just remember we're always here. Don't let the beast win!! jim |
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Title: Re: First time here... Post by marlinsfan on May 6th, 2006, 10:38pm on 05/06/06 at 09:47:51, MadFlash wrote:
It's absolutely appropriate! CH hits you both, it's something we share with our supporters! |
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Title: Re: First time here... Post by MadFlash on May 7th, 2006, 7:52am on 05/06/06 at 22:38:50, marlinsfan wrote:
We do share. Everything... Even with CH I have had an active live. (Well, as best as may be expected under the beast.) I have enjoyed the company of several fine women to date, but I have only been seriously engaged a few times. Each serious relationship went straight to hell because of CH. Melissa is the first to hang in and on... 5 years as best friends, 3 wonderful years as lovers. I adore her. She is my life. She is so precious to me. I am a fortunate man. I was asked to post the medications and therapies I have tried or used down through the years. (There are so damn many...) When I have the list completed I shall post it here. Thanks, as always. |
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Title: Re: First time here... Post by Charlie on May 7th, 2006, 1:46pm Welcome Flash. Quote:
You better believe it!. The more information and interaction with clusterheads and those around them, the better. Although I've been free of this horror for 15 years and knew something about it, I learned much more about CH reading just a few posts. If only this place existed when they first hit. Like others, I was trying to prepare for cancer, stroke, and other deadly horrors. I had no idea. It's hard to describe meeting others and witnessing an attack or two. Those getting hit don't have to deal with post-hit shit from everyone around them. Everybody knows exactly what's going on and they know enough to ask only what the hittee would like us to do the next time..... and he or she doesn't have to explain a thing. No blank stares, or mindless questions or moronic suggestions. What a deal! Here is something that helped me most of the time: Dr. Wright’s Circulatory Technique: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. Charlie |
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Title: Re: First time here... Post by RDubois on May 7th, 2006, 2:41pm Hope you'll hang in there because there is "hope". They say that CHs diminish with age. That has been true in my case. I didn't start CHs until I was 55 & I'm 76 now. The last cluster I had was this past winter, from early November to January, but the intensity did not seem to be as bad. Has this been your experience? Or are your CHs as bad as ever. God, I guess they're all BAD!!!!!!!!!!!! I agree about thinking your going to go crazy or something, In my case, because of my age, and when I'm having a bad headache, I wonder why it doesn't cause a stroke. So far it has not. Good luck, RED |
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Title: Re: First time here... Post by cekelle on May 11th, 2006, 1:34am Welcome Home MadFlash! ;;D I had a whole paragraph ready to post and got logged out. Now I'm pi$$ed. Don't take it personal. I'm not the fastest typer in the world. To sum it up just hang in there and I think it's great that your wife is involved with you. Support is very important. Chris |
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Title: Re: First time here... Post by fireball on May 11th, 2006, 2:27pm 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? My husband was diagnosed 8 years ago. He has often asked the same question. He has said that if he was standing in the middle of the room with an open wound, a limb missing, etc., people would pay attention. But unless you are a sufferer or a supporter, you can't "see" it, so it's nearly impossible to get people to understand. I am so thankful that you and Melissa have found this site. Everyone here DOES understand. And it is so comforting to know that there are people that no exactly what life is like. Welcome home!!! |
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Title: Re: First time here... Post by Margi on May 11th, 2006, 3:23pm Hi MadFlash, Sorry you have a reason to go looking for others who've felt your pain but I'm so glad you did! It's honestly crucial to your survival. My husband is a sufferer as well, same age as you, started around the same time. He grew up in Kingston, ON and then spent some time in the Maritimes as well - Saint John, NB - completely undiagnosed until we found this board in 1998. He could have written your story word for word. So could pretty much any sufferer here. For something so rare, it is amazing the commonalities when you find another true clusterhead. From the pain to the persona, it's like you're all from the same batch of cookies, my friend. Know what? My hubby found huge comfort in that. Wait till you meet another clusterhead in person - you'll feel as is you've met someone from your home planet and so will Melissa, meeting another true cluster supporter. We walk to a different tune, us cluster folk, and only WE understand what it means to live with cluster. Just so you know, we do also have a Canadian site at http://www.clusterheadaches.ca and we've got a couple folks in your area. I know John and Darleen are in Sydney (I know, not next door, but this IS a pretty rare affliction). Here's the link to our message board: http://www.clusterheadaches.ca/cgi-bin/yabb/YaBB.pl - kinda slow right now but I think most of us are outside enjoying this wonderful Canadian spring!! As well, we've found that doctors in the Maritimes are quite uneducated about clusters. Sorry, but it's the truth. Our daughter and grandson are in Quispamsis and have recently had to deal with pediatric neurologists. Trust me, there ARE better neuros in the rest of Canada! Mike's "cluster career" came on full force when he was out there and he was given everything from tranquilizers to narcs to antibiotics to treat his "sinus infection". ::) Please do tell us what you're using, med-wise, to battle the pain. Oxygen is an amazing abortive and there are a few non-med things you can try: ice packs (frozen peas works in a pinch) on the back of your neck at onset ice cold water (read the water x 3 button to the left) gravol (Travel Tabs at Shoppers Drug Mart) to get you through the night staying calm (sounds easy, right? Mike says it's the hardest lesson he's ever learned but it's been HUGE in his ability to deal with an attack). Hope to see you over at OUCH Canada soon - you AND Melissa. Again, welcome. :) |
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Title: Re: First time here... Post by Gandalf the White on Jun 17th, 2006, 2:21pm on 05/11/06 at 15:23:56, Margi wrote:
Thanks Margi, From both Melissa and me. http://www.uspharmacist.com/index.asp?show=article&page=8_1745.htm I will write more later on. (I'm feeling better now...) [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] [smiley=thumb.gif] |
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Title: Re: First time here... Post by pleasantlyblue on Jun 17th, 2006, 5:52pm HI Madflash. I'm new here too and as I read your thread I could itendify with everything. I've been a clusterhead for over 25 years myslef. I noticed you hadn't posted for a while and was wondering how you were doing. Don't let go of this forum or these people. They've been a godsend to me and so many others. Just the understanding is invaluable. PF wishes to you. You are in my thoughts and prayers. Marie |
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Title: Re: First time here... Post by Jonny on Jun 17th, 2006, 6:16pm Hmmmmmm! |
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Title: Re: First time here... Post by b0x on Jun 19th, 2006, 9:59am Hello All, I want to start off first by saying... Thank God yous created this place. I have been getting cluster headaches since I was about 12 years old. At first we thought it was because my parents were getting devorce and since I was a kid they were just really bad stress headaches. I had stop getting them for a while when I was between 15 and 16. I used to think that no one could have as bad as a headache as me but i find thats not true. My headaches come and go somethimes I get them everyday for a couple weeks, sometimes I have no headaches for a month or two. Since this place is a support community I should tell you are that I am a smoker. I know I should quit but it is hard. I find that smoking doesn't really trigger a headache, but being in a smoke filled room does. The reason I came here today is that I had a headache last night one of the worst ones I have ever had. I was actually doing the dance bitting the couch and pushing my thumb in to my left eye as hard as I could. What is wierd is that even though getting sick is more of a migrain symptom that helps. Usally my headache ritual is to take asprin, get in a dark room put my left part of my head in the hinge of my elbow and then do like a headlock move on the top of my head as hard as I can. If I am lucky which most times I am not I can get rid of it. I sometimes have headaches that aren't as intense for those I can subdue them by laying in a bath of hot water with my head back and submerged. Because I am impatient I didn't really read thorugh the board yet but i wanted to let you guys know some of the things that help focus your pain away from your head. I like to put HOT! wash cloths on my head almost to the point that it burns. I also sometimes scrape my gums with my finger nail because that way I focus on that pain (I don't recomend that to anyone). Another reason I am here is family. I have been to the doctors many times and have had many test. They found that I have a pittuatary tumor that is inactive, but now everytime I have a headache on my mom finds out she starts to panic and tells me that I need to go to the neurologist. I try to explain to her that it has nothing to do with that but she hounds me. I used to have to hide my headaches when I lived there because I would get so stressed that another one would happen. Now that I live with my girlfriend its even harder, she is a very STORNG girl, so she doesn't understand this. She thinks that because there are cures for many illness this shouldn't be hard for doctors. She doesn't understand what its like to go to the doctors over and over to find out that there really isn't anything they can do, and sadly they don't really care, most have heard stories but few have ever felt the pain. I don't blame them for not caring no one can ever know how intense they are with out having them. So after saying all that I am making an appointment with my Genral Doc to get a referell to see the neurologist whos is going to tell me that there is nothing he can do and that the pitutary tumor is now the endocronologist problem. I have plenty more to say but I will let all you readers get back to doing what you were before starting to read this novel. One more thing... Nothing bothers me more when someone says that they have a migrain when they don't |
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Title: Re: First time here... Post by Gandalf the White on Dec 22nd, 2007, 8:41am Hello all, I am back... It has been such a long time. It took all night to find my original post and profile information here so I could log on again. I should mention that I am still with Melissa - she does not know that I am back on this board... I NEED HELP! Early this year RE-diagnosed as combination Cluster headache and Trigeminal neuralgia, which is a rare condition known as "cluster-tic syndrome." (If you read back on my earlier posts, you will know that CLUSTER is the monster.) My pain repeats several times and more each day, lasting an hour or two, every day - for 33 years non-stop. (This past year has been especially difficult to manage, with additional symptoms, indicating more, or just nerves... I do not know...) Scheduled for more comprehensive testing at a local hospital by a referral to another Neurologist. However, my personal physician LOST MY ENTIRE CASE FILE! I have been to four doctors since leaving my original physician. Without my medical history, not one doctor is taking my word... I am in hell! I am thinking hard on suicide. I do not believe I can take much more of this... and now I have no support. It is now 9:39 am in Dartmouth, the pain is returning. I will check back later. |
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Title: Re: First time here... Post by RichardN on Dec 22nd, 2007, 11:29am Hi MadFlash Sorry to hear you're having such a bad time. Did you ever get to try 02? I re-read this thread from the beginning. Hope some of the info last year gave you some hope/direction . . . and at least some PF time. Please let us know what you may have tried since then, and what did (or didn't) seem to work for you. Be Safe, PFDANs Richard |
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Title: Re: First time here... Post by Groov on Dec 22nd, 2007, 9:41pm Hey MadFlash: Most here know more than I about the subject of Clusters, but I can tell you something in my own words. I read your posts and saw you feeling better as you went. When I first came here, I had really no idea what I had...or at least if there was help. I was seriously considering blasting my head off with my 12 gauge. Fortunately I met the fine people here and they got me on the right track !!! You ain't gonna believe how much people here care about your problem and to what extent they will go to help you. I owe them a lot !!! I'm doing just fine right now, but if things get awful again...I know where to come. I've met people here who have become by very best friends. Welcome aboard & visit often...you wont find a better group of people !!! Cheers, Dave |
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Title: Re: First time here... Post by BarbaraD on Dec 23rd, 2007, 7:31am Mad-Flash, Welcome back... I've been reading this whole thread and yes, you've had a bad time -- so have a lot of us. When I found this site (back in 98) I was in about the shape you're in now. I thought I was ALONE and saw no reason to keep on with the pain.... but I met some wonderful people who KNEW what I was going thru and NO it wasn't an overnight thing, BUT, thanks to a post from a guy in CO, I found a drug that was my miracle one and has been since Aug of 99. I'm chronic and still have "high" cycles where I want to chop my head off, but for the most part I NOW live a fairly NORMAL life. But it was DUE to a CHANCE post on this board. And let me tell you something else friend - If there's a drug on the market I haven't taken, it ain't been made yet - and not a damn one of them worked - surgery didn't work, narcs didn't work - For two long years I didn't even go out of the house - my business went to hell (an employee embezzeled more than you even want to know about). Well, thanks to that post, I found a MIRACLE, got my business back, got rid of that employee and got my life back. My family thought I'd flipped out totally. And they still don't understand anything about these headaches (they don't want to). And during all this my husband had a stroke and was sick for several years before he died. I took care of him during this time with the headaches. And he sure didn't understand them. Try going to ER with a stroke patient in a semi-coma and getting hit with a 9 and trying to tell the damn ER doc that you've got to have O2 NOW! (Well, they finally got used to me, but the first few times were a challenge). What I'm getting at is -- You're NOT alone in this - when we say - WE UNDERSTAND - by gosh we DO. Now there's something out there that's gonna help you - it's just a matter of finding it. For most of us it's been trial and error (and some are still looking), but keep an open mind and be willing to TRY new things. Be assertative in your treatment with your neuro and GP. And stay tuned in here -- we're here to HELP. Now, what are you taking? What have you tried? When is your next doc appt? Give us something to work with so we can start to help you. Hugs BD |
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Title: Re: First time here... Post by Gandalf the White on Dec 23rd, 2007, 7:01pm Hey BD, I have tried every medication and combination you can name in 33 years, including herbs, potions and street drugs, including MMs. Nothing worked, or I just felt worse. (02, ice, heat, physio, meditation, hypnosis, bio...) I have tried direct injections to the base of my skull in Emerg - a combination of steroid, narcotic, freezing - which works (not wise or preferred). I haven't tried surgery - if surgery is actually a choice in my situation... I don't know. I need a reliable doctor. I am on my third business loss. This time my partners robbed me blind and I ended up on government support. Melissa is the only woman, best friend and lover, who has bothered to learn and to understand. We have been together for nearly 10 years. I still have a hard time letting her see me in the gasp of a major attack - I have hidden my struggle for so long that it's just a natural turn of my personality. (and I don't like freaking people out, especially as they have no idea what is happening...) I would rather keep my "crazy" to myself. But I often do get caught in a situation where there is no retreat. I just wanted to thank you all for responding and rallying to my support. I'm on my second wind now, and I think I'll be alright for now. Merry Christmas! |
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Title: Re: First time here... Post by BarbaraD on Dec 25th, 2007, 7:00am Oh Mad-Flash -- I'll make you feel better this Christmas morning --- Right now I'm in a high cycle -- At Christmas time what else? :-/ So last night I had a house full (not to mention my 6 year old Caleb - grandson). Got thru that with about a 6 -- got the dishes from dinner in sink cause dishwasher was running from the afternoon. Took my meds after presents were done and unloaded dishwasher -- Told idiot kids to put dishes in sink in dishwasher cause I had to go nighty nite. Took Caleb to bed to wait for Santa (rule - ya gotta be asleep when he comes). Got woke up about 4 am with a 9 (unusual but it happens). Grabbed cafergot, Red Bull, O2 - everything in site, then went for the coffee... got to kitchen and lo and behold!!!! dishes still in sink and not loaded in dishwasher!!!! Now one thing (and I'm not a neat freak by any means) I CANNOT handle is dirty dishes in the sink in the morning!!!!! And with a headache - this is NOT good! By the time I get my coffee, Caleb is awake and yelling for Santa -- I tell him to go wake up Mommy and Daddy -- they hate getting up early -- it's now about 5a.m. My head is down to about a 5 (I'm still in the DO NOT TOUCH stage!) I mention to the "kids" that the dishes are NOT in the dishwasher and they inform me that they were TIRED last night! Not a good start to the morning! We get thru Santa (he brought Granny some power tools - had a strong urge to do a lobotomy on two very deserving parents of my grandchild, but ....). Granny goes to bathroom and chain smokes while coming down off the hit (the children don't like Granny to smoke in HER house when they're around - :-X and she's NOT going to sit OUTSIDE in 20 degree weather just to keep them happy, but is "trying" to be nice during the holidays. So here it is almost 6 a.m. My head is down to about a 3 - Caleb is happily playing with his toys, the kids are "resting", Granny has done the dishes and is sitting at the computer trying to keep her mouth shut and getting ready to start cooking (now that the kitchen is clean) for a "lovely" Christmas Day with the in-laws. And YOU think YOU have troubles!!! ;;D ;;D ;;D Just thought I'd cheer you up --- And you have a Merry Christmas.... Hugs BD |
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