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Title: first post Post by big al on Jul 23rd, 2004, 5:27pm Hi folks, call me Big Al, I have been aware of this site for a couple months but this is my first post. I have been a CH sufferer for about 20 years now ( interestingly, I was diagnosed correctly by a GP on my first visit way back then). I was told at the time that things would likely get worse as I grew older ( Iam 54 now). They sure as hell did! As I have reflected on my condition, I realized that I likely began Ch at a fairly early age. I recall as a 10-12 year old of getting what I used to tell my Mom were "eyeaches" because of the pain behind my right eye. In retrospect I believe those early episodes were a precurser for what was to come. Since being diagnosed in the mid '80s, I was episodic for about 15 years with long remissions of up to 18 or 24 months. Over the last few years I have had no more than 2 weeks free from CH. I currently experience 1 to 3 episodes each evening beginning about 7PM and generally, the last one wakes me about 2AM. I have had samples of Zomig and aprescription for Imatrex, but financial considerations ( any drug plan that I have had so far has not covered these ridiculously expensive products... so I suffer. About two months ago I read on this site the information about possible success with mushrooms, and was certainly willing to give it a try. I had used mushrooms at time or two recreationally many years ago, and enjoyed the experience. I was able to obtain some shrooms through a young co-worker, and gave it a try. I actually went several days with nothing more than the occasional shadow. I have lost my source but am hoping to acquire more soon, or learn to grow my own. Today I spent time at the clusterbusters site and was encouraged by what I read. If I can continue this treatment there may be hope after all. I am interested to know, do others find that they get to "know" what will happen during a CH based on how it starts and progresses? I believe that after thousands of them that I can often predict the severity and duration by how they begin. I find if they come on slowly, they will also end rather slowly, conversely if they come on very fast, they vanish almost as quickly. I consider myself more fortunate than many others because mine seldom last for more than 30 minutes. The longest I have had recently was about 1 hr. Also I have found that over the years they seem to change. Early in my episodic days I recall them being more localized behind my eye and in my temple with varying waves of intense throbbing. Over the last few years, they seem to be more general affecting the entire right side of my head. The pain is now constant as opposed to throbbing. Its kind of weird "talking" about this with others that may actually identify with what I go through. I will provide a few more random thoughts and observations, but am beginning to feel that if I continue much longer I could fill up pages. I have a saying for myself " it aint over til the crying is done" because I find if I have a rather "mild" one where my right eye doesn't send tears down to my chin, I know within an hour or so I will be hit with a bad one. I find that I get some relief (distraction?) from rapid, puffing exhalations, and when these puffs begin to fill with saliva, and my eye is running full out, I know I am within minutes of relief. It is hard to explain the way one gets to know thier demon after a few years. I would be interested to know if others get "familiar" with the stages of a CH. Since I have never met another person with this horrible condition, I am curious to know how I "fit in". Thank you all very much for this forum. I ahve a few more "good" hours til seven, so I'd best go now. |
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Title: Re: first post Post by Big Dan on Jul 23rd, 2004, 5:35pm Welcome big al... ... you've got questions, we've got answers.... Grab and oar, and start rowin... we're all in this together... Oh... and... -Big ©&TM 1980-2004 ... jus' kiddin' bro. |
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Title: Re: first post Post by kimh on Jul 23rd, 2004, 5:39pm Hi Al, I am sort of smiling here because i wondered the same exact thing as you - whether or not other sufferers "get to know" how attack will progress. During cycles, if i am getting numerous shadows during the day, i can usually count on the hard hit at about 3:30 pm that lasts about 45 minutes, and then diminishes back to shadows and then i fall asleep without interruption. If i am shadow-free throughout the day, i become fearful of the big bang that wakes me from sleep (about 2:00am). Funny how we get attuned to the demands of our special friend :D Anyhow, welcome and best luck with current plan of counter-attack. kim |
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Title: Re: first post Post by Gator on Jul 23rd, 2004, 5:44pm Welcome to the website. Sorry you had a reason to look for us, but glad you found us. In answer to your question, I sometimes get those premonitions of impending doom. A lot of the time I just know whether it will be a really bad one or not. Other times, the beast will twist the knife unexpectedly and leave me looking for a place to pull over or trying to find an isolated place to ride it out. The beast morphs and changes tactics too often for me to always know. I use Zomig NS as an abortive and I do not leave the house anymore without having 2 in my pocket. I love Zomig NS. Besides O2, its the only thing any gp or neuro has prescribed for me that works. Easily kept in a pocket, quickly and unobtrusively used and quick acting. Unfortunately, starting this month, it is going to be almost impossible for me to obtain due to changes in insurance companies and drug plans and the cost of the drugs. Gator |
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Title: Re: first post Post by brain_cramps on Jul 23rd, 2004, 5:54pm Welcome aboard BIG Al. I was kinda wonderin what BIG Dan would have to say about your name... Guess I got my answer... PFDAN on 07/23/04 at 17:35:01, Big Dan wrote:
BWAAAAHAAAAHAAAAAAAA!!!!!!!!!!!! [smiley=crackup.gif] |
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Title: Re: first post Post by don on Jul 23rd, 2004, 6:19pm Quote:
Have your Doc write a letter of medical neccesity and contact the patient advocate for Glaxo-Smith Klien. |
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Title: Re: first post Post by alleyoop on Jul 23rd, 2004, 6:36pm Hi BigAl and welcome! Like Gator said, "Sorry you had to find us, but glad you're here." What caught my attention in your introduction, was your mention of having CH or a precursor of at age 10-12. That happened to me as well. I can vividly remember rolling in the floor and banging my head against the floor at about the same age. I can remember in college having a few hangovers with a headache that would I think incapacitate most. To me however, it seemed nothing more than a mild inconvience (maybe I would have drank a lot less in those days if it had hurt more!) Anyway after around age 12-13, I went along happily in life with no visits from the Beast. I have two younger brothers whom were both diagnosed at around age 30 with ECH. One of them "grew out of it." The other is in cycle right now. Shortly after I turned 50, the Beast let me know that he had never really left. The weird thing is, even with my family history and all, I didn't recognize what was happening. I actually went through major sinus surgery before I finally saw a neurologist who diagnosed me with chronic cluster headaches. That was five lifetime years ago. Although I have been on lithium and verapamil for several years now(with little results), in the last month or so I have been almost PF. The only thing I can attribute this to, is I adjusted the dosages. I'm rambling too now. I just found it interesting that you, too had these headaches at about the same age as I experienced them. I wonder if anyone else out there can say the same? Ramblin' On................................................. ..............................................................alley 8) |
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Title: Re: first post Post by Jeepgun on Jul 23rd, 2004, 7:42pm Welcome aboard, Big Al. As others have said, I'm sorry you had reason to seek us out, but mighty glad you found us. There is a light at the end of the tunnel: Supposedly, as we age, the remission periods grow longer and longer. (Unless the beast decides that you're one of his "extra special friends.") Anyway, welcome to the funny-farm. ;;D |
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Title: Re: first post Post by Carl_D on Jul 23rd, 2004, 7:44pm Hiya Big Al - Welcome to the fold. Peace, Carl D |
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Title: Re: first post Post by big al on Jul 23rd, 2004, 8:37pm Thanks for all your responses and support. Big Al |
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Title: Re: first post Post by Tim_Z on Jul 23rd, 2004, 8:45pm Welcome Big Al. This is a great place for CH info and many other things. Stick around, I' sure you'll enjoy it. ;;D ;;D ;;D Tim |
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Title: Re: first post Post by stevegeebe on Jul 23rd, 2004, 8:49pm Hey Al. Welcome to Clusterville. Steve G |
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Title: Re: first post Post by Redd715 on Jul 23rd, 2004, 8:59pm Welcome to the Family Al... So sorry you had to find us.....so glad you are here. All you need to know to get to feeling better is right here! |
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Title: Re: first post Post by Mark C on Jul 23rd, 2004, 8:59pm Welcome home Big AL...sorry you need us but glad you found us........as the now old saying goes grab an oar and start rowing. PFDAN's Mark |
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Title: Re: first post Post by klp on Jul 23rd, 2004, 9:00pm welcome aboard big Al. I totally agree you can begin to "feel" what coarse your cluster is going to take. I'm episodic and are one of the dreadful people who usually just lurk. Although i come to this site just about everyday for the past couple of years. A litle over a week ago i decided to post a hello. At the time didn't know why but something just made me come out of my shell and write. Little did I know but my cycle started 2 days later. I think deep down i knew and had to reach out to someone. Anyways, hope you can get your hands on a good preventative and abortive. Don had good advice. When i called the drug company after my insurance turned me down they intevened and shortly later i had meds at a very good price. Good luck. Krista |
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Title: Re: first post Post by alleyoop on Jul 23rd, 2004, 9:21pm on 07/23/04 at 20:59:29, Redd715 wrote:
She's a poet and don't know it, but her feet show it- 'cause they're LongFellow! BardBob.................................................. ...........................................................alley ;;D |
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Title: Re: first post Post by purpleydog on Jul 23rd, 2004, 9:39pm on 07/23/04 at 19:42:54, Jeepgun wrote:
There are a few sane comments made ocassionally, but welcome to the board! (There's a stripclub here where I live called Big Al's) ;;D purpleydog |
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Title: Re: first post Post by Charlie on Jul 23rd, 2004, 11:41pm Welcome to the fold. I'm 57 and got my CH when I was 23. Good news is that when I was 45, they disappeared. I have no idea why. Just in case you missed it, try some vigorous exercise or anything that affects circulation. You may also have some luck with this: Dr. Wright’s Circulatory Technique What follows is a technique learned from a neurologist: 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. I hope this technique is helpful and I wish you the best of luck Charlie |
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Title: Re: first post Post by cootie on Jul 24th, 2004, 12:13am Hey Big Al......welcome !! You'll have to plan on goin to one of the conventions.......a real meet and greet deal ! And ya learn alot also !!!! Big Pammie |
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Title: Re: first post Post by Darleen on Jul 24th, 2004, 6:07am Hey big al, Welcome to a fellow Canadian. Sorry you had to find this place but glad you did!! D [smiley=hiya.gif] |
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Title: Re: first post Post by BarbaraD on Jul 24th, 2004, 5:03pm Welcome to Clusterville Big Al. sorry you're here but glad you found us. I'm chronic and have been since 1997. The only relief I've had since then is with topamax and it quit working last Oct. Preminitions? Yep -- Used to I could tell you when it was gonna rain by my old knees - now when the barometer starts to go up or down, my head tells me and I know it's HIT time. Back in my early 30s, I had a few "blinding headaches" that caused me some blackout periods, but that was written off as harmones -- hysterectomy and ZAP - no more headaches. Right before I hit 50 - I had what I thought was a brain tumor -- it woke me up in the middle of the night, no drugs would help. But I was lucky - 2 months later I got diagnosed and the "episode" was halted. Until about six months later -- ZAP again.. Got to be a twice a year pattern. Then I went chronic and nothing helped for long. I was at the end of my rope when I found this board. It's been my lifeline since 1998. Do what Don says about getting to the GSK patient advocate. A little paperwork and it will help out on the drug bills. There's also a program with most drug companies. Your doc should have the forms. And check out O2. It's been a BIG help to so many. Go to the left and start reading up on all the things that have helped others. Again welcome - got that oar -- row row row ...... Hugs BD |
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Title: Re: first post Post by BruceD on Jul 24th, 2004, 5:35pm Welcome Big Al, Please do follow Barbara's advice & check out the O2 button on the left. Oxygen works great for me (as well as a number of fellow clusterheads). It's also cheap when compared to any of the triptans. Lots of info here & a bunch of good people ... read, read, read & don't be a stranger. Also, I see Big Dan was quick on the scene. Crud, I see the guy is working an angle to charge you a royalty for using "Big" ... more beer money for the big guy. ::) Later BruceD |
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