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(Message started by: head_darts on Sep 9^th, 2003, 11:00pm)

Title: new guy
Post by head_darts on Sep 9^th, 2003, 11:00pm

hi all
i'm new to all this but i read up on the site last year...call me fair weathered. here's a little about myself.

i graduated college last year and taught school this year, but am not doing it anymore (for lots of reasons) and since now i'm getting my clusters again that's probably just as well.

unemployed, i spend much of my time indoors, painting for a lady in my town and thinking of what i will do next to try to escape this thing known as the beast. last time, i walked home from the nearby college. when i got here i paced pretty bad, i can't remember much of what i did, and then barfed all over the place.

i took my immitrex shot and now i'm okay, short of some sore neck muscles. my typical remedy as of late has been to sit motionless. even if i want to move, i'm already commited to sitting and not moving. i think about the pain that is cultivating in my head. given no time frame, i breathe in, then out...sometimes i hum. after awhile, i am sitting on the floor motionless in pain that i'm paying no attention to while i think of irrelovant, and probably rediculous things.

when i lose focus and my head still hurts i do everything in my power not to go take medicine. i don't know why, but upon the decision to take my shot i grow extremely impatient, and panic. i'll do a set of push ups instead. if you've ever worked out you'll know the feeling. go until you cannot do anymore. even still, try. then i lay face down and breathe heavy. sometimes i sit back up and try to meditate again. sometimes i do up to 120 push ups to achieve my goal of no more head trauma, not all at once of course.

these remedies work for me assuming the famous kip scale rating is no more than an 8. 9 and 10 for me are the same, and i just am in a sheer state of panic.

my knowledge of headaches is riddled with my mother telling me what i should eat and my experience drinking beer when getting ch enough to realize that it's no good. so far i will not eat yeast, dairy, red meat, alcohol of any sort, and those are just a few. i know that yeast mixed with hydrogen peroxide will react to form oxygen gas, which is supposed to treat these, but i have not ever gotten o2. i'd like to but do not have the insurance to see a doctor about it. also i've been on a supplement that has caffiene in it. scared from my mom's warnings i stopped taking the supplement today and got more headaches than normal. it makes me wonder...bad or good? i think caffiene restricts blood vessels which i think should be good for a headache. so what gives?

either way it is good to be in your company finally, and i'll give thought to all of you the next time my 'dance' starts. that term made me laugh aloud, because that's exactly what it is. this morning in the shower i found head comfort doing some sort of tribal bounce, and it actually made me happy.

i'm looking forward with interacting with all of you. any suggestions of yours are always appreciated.

sincerely,

ben

Title: Re: new guy
Post by Lone_Wolf_FLA on Sep 9^th, 2003, 11:39pm

I'm not certain what Mom told you, but my remedy of choice Cafergot, is LOADED with caffeine. Caffeine has also been long known for headache curative powers, providing you don't do too much. I just ate two of them as the Beast is as I write this "tickling the right side of my head. No, I'm not refusing my meds, been there, done that, it just hurts.

I have for many years been of the motionless meditating camp, used to wreck the place, now i just think my way through it till the Cafergot kicks in and the pain stops.

My Neurologist says Clusters generally do not have food triggers, and that these are generally associated with migraine, rather than Cluster. I have not found any food that will trigger an attack in me yet, so for now I believe him. Alcohol is certainly a CH trigger, but is it a food?

I've heard many good things about the O-two, might want to try other sources. I see where someguys have convertered rigs, and used welding O-two, gotta be cheaper. I don't know the cost but it can't be much.

Mom is trying to help but find a good MD listen to him, humor your mother by saying yes mom a lot, then follow Docs instructions.

Be well.

Title: Re: new guy
Post by Georgia on Sep 9^th, 2003, 11:39pm

Hi Ben,

Welcome to the insanity otherwise known as cluster headaches.

Have you been diagnosed by a dr yet? I know you haven't any insurance and that seeing a dr can be horridly expensive, but perhaps you can try telling one nicely that you don't have insurance and you really need help? I would also recommend taking the cluster quiz on the left.

You don't need a script to get O2. You can buy welding oxygen and then buy the tubing and non-rebreather mask at a medical supply house, very inexpensively. Check out the link on the left.

Other than alcohol, there are no known food triggers for CH. If not eating all of those items is helping you, go for it. If not, then fuck it. A clusterhead has got to at least try to maintain some semblance of normalcy. Caffeine helps a lot of us...some even claim it helps their meds work faster. At the least, it constricts the blood vessels during an attack. The effect may not be as strong if your body becomes tolerant to it, however.

Lots of people here have found that exercise helps them during an attack too. My husband runs in place while breathing O2. Works great for him.

I guess the important thing to remember is that you can find a way to manage this pain. This a great place to start. Read everything you can. Then read some more. You will not find more information, support, or empathy anywhere else.

In short, welcome home, clusterhead.

Peace and love,
Georgia

Title: Re: new guy
Post by Dave_Emond on Sep 9^th, 2003, 11:52pm

Hi Ben,
Welcome!
I don't want to sit in judgement, so please do not take it as such. I'm just wondering if you could follow up on some things you wrote that make me wonder?
Were you diagnosed with CH from a neurologist? How long have you had CH? From your message, I assume you're episodic?
I can't help but notice a few things about your message that puzzle me a bit.
Throwing up a lot? Is this common for you?
Not thinking about the pain and relaxing? Can you do this at will or have you been working on this for years?
Can a shower and dance make you feel happy?
Some of these things could raise doubts about you having CH. Before that happens, please explain in detail what an attack actually feels like. Sometimes a person can come in here and get pounced on for offering remedies that just don't seem to relate to CH.
Again, please post again, I'm not judging whether or not you have CH, just find your descriptions and coping methods hard to relate to CH.
Pain is pain, I hope you do not have CH. If you do, and can dance, exercise or meditate without thinking of the pain, I appauld you, but ask for more details.
This is not an attack at your methods, just puzzles me somewhat.
Thanks, and welcome here ...
Dave

Title: Re: new guy
Post by head_darts on Sep 10^th, 2003, 12:19am

dave, yes. a neurologist has diagnosed me with clusters. if you want to know what my clusters are like, maybe you could read everyone elses description of them and ... yeah, that's about what mine are like too...and yours if you get clusters as well. i'd prefer not go into details like this because they get me down. the satisfaction of living through them is enough, thanks. not to mention its almost bed time and you know what that means.

thanks for your concern but it would be much better if you could just trust and support than question me like this.

focusing on breathing does work well by the way. you should try it. when the very bad effects go away eventually, i get a feeling of relief, even if the pain is still dull. so yes, that is a major call for happiness and whatever dance i please :) try it out and you'll see what i'm saying.

-ben

Title: Re: new guy
Post by Dave_Emond on Sep 10^th, 2003, 12:31am

Hi Ben,
I do understand, and hoped I was clear I wasn't juding you.
I believe it can be done, sitting during a CH attack. I've been practing this for almost 2 years now. I'm actually serious about just how you do it.
I'm to the point where I can lay back in a recliner and "take the pain" but I'm all for finding a method of "not thinking about the pain".
I knew I'd have trouble asking questions like I did and not have them sound right, sorry about that.
Maybe the word "amazed" should have been used instead of "puzzled"
I seriously would be interested in how you have reached this level of tolerance.
I'd love to add the word "happy" back into my vocabulary!
Thanks,
Dave
(Sorry for the misunderstanding)

Title: Re: new guy
Post by Cooked Brain on Sep 10^th, 2003, 12:46am

welcome to the board ben!

Title: Re: new guy
Post by head_darts on Sep 10^th, 2003, 1:01am

dave, i'll try to go through it exactly how it happens. when i do this again i'll make sure i was being accurate. i sit indian style and support my back against a couch or bed. i close my eyes and droop my head. the first few breaths suck. they are hard to get out. but once that is done, that was the hardest part. the second hardest part is not moving. it only makes things worse. i've had the urge to stand and move to the shower only to be greeted by the expectation of release from the aching, but it is to no avail. you're better off where you are most of the time, i belive.

head drooped, indian style sitting, i try hard just to breathe deeply. i keep a glass of water next to me and imagine that every move i make will help make me feel better. if you really focus on it, the head pain is in a very easily located spot. i don't like that spot massaged. just observe the pain. it hurts yes, but separate yourself from that. if you have a bruise do you dwell on it? does it make you upset? most of the time it does not. i know that's not a perfect example, but you separate yourself from the ache, and try to visualize it. you are still breathing deeply. notice the pain, and observe it. from there i try to focus it into a spot. i imagine it being scooped onto a train car and driven from the location out of the spot on my forehead as i hum or breathe.

i have not achieved it in this cluster, but last year i was actually able to transfer the pain outside of my head, and shift it around. i might have been dreaming but to this day it feels real enough, and happened more than once.

you can't consciously focus on letting your mind wander. it might not, and doesn't always. sometimes though i feel like i fell in a time lapse. one minute breathing and thinking of the pain, the next minute in outer space.

my mind is relatively shallow, so if i can do it, you can too. it may not work for everyone, but i think it can. like i said it doesn't work perfectly every time. sometimes i resort to my shot, and sometimes i don't even know what to do so i cry and hit the floor and pace.

you are a trooper, and i hope you can get this thing sorted out as soon as possible. remember you have a lot of people on your team.

also, think of an acupuncturist or message. my good friend is a masseuse and she does some thing where she pulls on the base of my skull. it helped get rid of my last cluster and she described it as disengaging the (something) muscle that is on the base of your skull and contributes to many headaches. in the old days, she said, people used to just cut it off. i wish, right?

keep smiling cluterhead! :o :)

Title: Re: new guy
Post by Dave_Emond on Sep 10^th, 2003, 1:55am

Hi again Ben,
I just sent you an E-mail probably at the same time you were writing your post.
Thanks!
Dave

Title: Re: new guy
Post by Charlie on Sep 10^th, 2003, 7:37am

Welcome aboard Ben:

It looks like you are a fellow sufferer and I'm sorry that you needed us. Nevertheless, you've found a place full of people that know exactly what you're talking about and have some good ideas about handling this horror.

The body is pretty tough and like Georgia says, it's not too hard to become accustomed to things like Caffeine. I consume coffee by the gallon and it doesn't keep me awake. I'm an epileptic as well and I've learned that our system can handle more junk than most of us believe. Cable TV scares the shit out of everyone.

Ask again about welding O2 and you'll get some very good information from others here. O2 is O2, no need to worry. I hope you stick around and let us know how you're doing. It's what we're here for.

Here are two links: One for a technique I found effective and a second link to a description of this disease which does a wonderful job explaining to employers and others that this has nothing to with what is thought of as a “headache.”

http://www.netsync.net/users/charlies/

http://www.ouch-uk.org/ch/note_colleagues.cfm

Charlie

Title: Re: new guy
Post by jmorgan52 on Sep 10^th, 2003, 8:32am

I have never been able to fathom "the dance". For me I need to be as still as possible, preferably lying in a dark room. I know most of you think this is what you do for migraines, but it works for me.

I too try and distance myself from the intense pain by being as still as possible and concentrate on deep breathing. I was pretty good at getting through these bastards using this method until I found the Imigran Inj in the mid 90's. Now I find myself reaching for the "shot" as soon as it gets too much to bear.

As for the throwing up. I usually have at least 2 or 3 REALLY BAD CH attacks during an episode and I throw up big time, especially if I don't give myself the inj quick enough. I get really hot and red and even feel a little better afterwards?!

I am 18 months in "remission" and totally PF and hoping they don't ever return.

John

Title: Re: new guy
Post by vig on Sep 10^th, 2003, 10:08am

Hey,
Everybody's different. Try as many different things as you can stand and learn what works best for you. Pass on what you learn to the rest of us.... Collectively, maybe we get to quit having to do this someday.
welcome.

Title: Re: new guy
Post by stevegeebe on Sep 10^th, 2003, 8:59pm

I can relate to some of the things you are saying Ben.

If the pain is at lower levels, I don't have to get on the dance floor and I am able to sit still.

When it gets higher I start moving about. But during the dance, I find "special places" along the path where I rest. These places are where I go to each dance to pause because the pain is less at these places.

Don't ask my why...but know this. If you stay there too long and don't move away before the pain returns, than you can't go back to that place again. It's ruined and you have to find it elsewhere on the dance path.

My insane little Cluster World.

Truely insane!

Steve G

Title: Re: new guy
Post by Patrick_A on Sep 10^th, 2003, 10:29pm

Hey Ben, People here have left you a wealth of information. All i really have to add is the food additives. I avoid preservatives as much as i can. In fact i think if you can go all natural it will help. I disagree with those who say that foods dont bring on Clusters. I know for sure alcohol does and i am 99% sure cheese does for me.
Good luck and PFDAN, Patrick

Title: Re: new guy
Post by jmorgan52 on Sep 11^th, 2003, 1:12am

For those who have read any of my previous posts they will guess correctly that I am 100% with Patrick on diet causing clusters. Not neccessarily as triggers, although alchohol does it every time for me when in cycle, but as a long term build up of "bad shit" in the body (toxins to you Ueli 8) ).

My theory is that you need to flush all this shit out of the body a few times a year in an effort to avoid the CH cycles. Find a good detox aid from your health store or pharmacy or chinese doctor or something. This will make sure the detox process kicks off rapidly. If you are carrying a lot of toxic waste you will no doubt suffer from a horrible detox headache for several days as the toxins unload into you bloodstream and is eliminated by the kidneys and liver etc. Live through it, it will go away and leave you feeling great for a change. Drink lots of water!

Try it and see for yourself.
John

Title: Re: new guy
Post by surfshi on Sep 11^th, 2003, 1:36am

Hi their> and welcome. lots of healing zvibs going your way and out to all. Aren't they disruptive? hang around I am for some time to come a great place to be...Did I take that celexa today? anyway Welcome aboard...Surf