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Cluster Headache Help and Support >> Getting to Know Ya >> 1st Post http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1223819681 Message started by bwhubbert on Oct 12th, 2008 at 9:54am |
Title: 1st Post Post by bwhubbert on Oct 12th, 2008 at 9:54am
Hello to everyone my name is Brian and I was diagnosed as being a CH a few years a go. Two nights a ago I rolled out of bed to my knees after what felt like a cattle prong had been jabbed into the left side of my skull. The CH during the middle of the night as many of you may know are much worse than the day time ones. The day ones you can recognize a little early on and can prepare to defend but when the beast jumps in your head during your sleep no matter medicine that you have on hand it’s too late.
My cycle started about a week ago which is a little late for me to be enduring this during an October month. My worst CH appears as early as May and as late as September. I have three levels of pain associated with CH they are shadow, moderate, and severe. The shadow usually occurs during morning and I can fell it coming as a storm cloud moves in to a town. At this point if I hurry I can do something to suppress it not make it go away but suppress it. The moderate level usually occurs in bed when I have obviously taken a medication that has been somewhat effective but the CH is still there. Severe is when I wake up in the middle of the night rolling out of bed to my knees. I have seen family doctors, allergy specialist and neurologist for my CHs and most of the time that I have seen them is when I’ve either been able to suppress the pain or I’m just not having an attack. I hate these time because I get the impression that I’m a nut. I’m not there to score some pills as they seem to treat me. I do however sincerely want a solution to this painful condition. Well I hope you guys and gals as well and if you’re not feeling well at least the lord above knows your pain. Take care Brian |
Title: Re: 1st Post Post by Just Plain Carl on Oct 12th, 2008 at 10:26am
Hi Brian,
Welcome to our exclusive group. What meds are taking. I know what you mean about nightime attacks. Thats when I get 90% of mine. Hang in there. PFD for everybody Carl |
Title: Re: 1st Post Post by barry_sword on Oct 12th, 2008 at 10:42am
Hi Brian and welcome. You are with people now who know you are not "nuts" and we will help you in any way we can.
I will be the first to preach the use of o2 to you. 100% o2 at 15 lpm with a non-rebreather mask, no outside air. Get on it at the very first sign of an on-coming attack. This for most here is our first line of defense, me included. Others will be along soon to help with advise. Sorry you had to find us. You are not alone with this anymore. Barry :) |
Title: Re: 1st Post Post by BMoneeTheMoneeMan on Oct 12th, 2008 at 11:43am
Welcome, Brian, I'm Brian.
Like Barry said, you should look into Oxygen. Many of us use it as an abortive and it works well. Best use is up to 30lpm. If you only get 15lpm, you could have a problem with those night-time hits. For me, the best bet is LOTS of oxygen, fast! 15LPM just isnt fast enough. You should also check into caffeine drinks. I drink coffee and cola. Others drink energy drinks such as RedBull. The energy drinks have Taurine, which some say also helps CH. In case you don't already know, stay away from pain killers. Those typically do more harm than good. PF wishes to you. We are right here with you. Brian |
Title: Re: 1st Post Post by Guiseppi on Oct 12th, 2008 at 12:14pm
So I'm late as usual which will make me the THIRD person to reccomend oxygen. 30 years of locking horns with the beast and 02 remains my first line and most effective abortive. Absolutely amazes me how fast 02 can send the beast packing!
Bob's right on. You need a doc who either understands CH or is at least open to being educated. Print out and read the links Bob has given you. Most find the best results are obtained by educating yourself first, then partnering with a neuro who is willing to work with you. Either way, get that oxygen....SOON! Wishing you a short cycle. Guiseppi |
Title: Re: 1st Post Post by thebbz on Oct 12th, 2008 at 5:46pm Quote:
and so is the sarge. Good advice, do it. all the best and welcome to headbangers club thebb |
Title: Re: 1st Post Post by Callico on Oct 12th, 2008 at 6:10pm
Hi Brian, welcome aboard.
Just to set teh record straight from the beginning. Just because you are here does not mean you are not nuts! There are a few of us around. there is a LOT of really great info available here, plus a lot of caring people who are here to help. Please feel free to ask questions as they come up. As you have already discovered, your Drs don't know all that much about CH unless you are lucky enough to get one who has taken the time to educate himself, or has an interest in headaches. Then most of them specialize in migraine. All that to say, there is a lot of experience here on this board that you can tap into. We are not Drs (with a couple of exceptions) and no medicine is practiced on this board, but you can get a lot of knowledgeable advice to take WITH you to your Dr. Find out all you can bout preventatives that you might want to try, as well as abortives. Find out the side effects and other issues b4 you have them prescribed. YOU are the one responsible for your care, not the Dr. As others have said, O2 seems to be the best abortive around for most. Personally, it only works for me if I get to it while still in the shadow stage, so I deal with mine mostly with coffee and energy drinks. Walmart sells RipIt for $1 a can, and it is twice the size of a Red Bull. The key to it is that you have to SLAM it down. If you just drink it like a soft drink it won't do the job. You have to get that sudden jolt of caffeine and taurene for it to be effective. Didn't mean to write a book, but glad you found us. Just wish you didn't need us. Jerry |
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