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Groov
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ok, you may not like this
« on: Aug 23rd, 2007, 11:42pm » |
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Hi, I'm sorry my post is so long and had to be split up. I have a few observations.
First of all I will give my background and general attitude as it relates to problem solving. I'm about as positive a person as you would want to deal with. I attack a problem and hammer on it until I beat it into submission. I sometimes think about children with cancer who die. Who could be more deserving to proclaim they got the poo end of the stick. Makes you think you should be ashamed to ever complain again....don't it !!!
I can, however, claim to have had every type of adversity thrown on me and came out the better.
Found out today I am a CH person. Ah, no big deal...the Doc will drain my wallet, give me a simple solution , maybe I'll toss back a few morphine sulphates and ! viola ! problem solved...right?
Well, the Imitrex, lyrica, steroids & misc. foo foo the Doc gave me didnt do squat !!! Oh, how could this be I think. Every problem has a solution...some easy some hard, but nothing is "un-fixable" Remember in my inate ability to fix any problem that EVER came up !!!
My Docs on vacation so I sat & suffered and was waiting to see him here in 3 days. I talked to his associate. She told me opiates were no help and these CH's "come & go" I'm not an arrogant person by nature but they don't call me Ironman for nuthin' I'm thinking: yeah, morphine sulphate does help and I'm also thinking the statement "they come & go" means either she doesn't know what to do or it means that they come...are treated...and gone forever. So, I take her advise and pick up the Prednizone and intend to increase the dosage as per her orders. Still I think she is either being evasive out of ignorance or is afraid to dispense narcotics. So, I do what I always do...I start to research this subject. Guess what I found out???? Not only is she right about the narcotics, there is NO SOLUTION to this problem. The narcotics don't relieve the pain or solve any problem. The pain will simply run it's course (in my case 1 hour) That is why the Imitrex is a waste of a $2.50 pill. The narcotics will only make you dependent and do ugly things to you liver & digestive process. Trust me, I know more about opiates than some Doctors having researched and abused them for fun. Another problem I kicked cold turkey...yeah....please don't abuse them, you will be sorry. So I research and find out not only is there no cure, EXPERTS aren't even sure what causes it. So, I'm sittin here tonight thinkin I just received a death sentence. It is that indeed. You have a condition that will eventually: cause you to lose your job, home and dignity. The world don't stop to accommodate your problems Jack!!! Sorry for the slang, it is used to add texture or common understanding to what I am telling you.
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PARABELLUM
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Groov
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Re: ok, you may not like this
« Reply #1 on: Aug 23rd, 2007, 11:43pm » |
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Here is why I think this way: At the risk of sounding arrogant, pretentious or ( in a common or visceral sense)...an annoying weenie........... I'm a sheetmetal fabricator by trade. I'm extraordinarily good at what I do. I have a reputation in everything that I do as a hard driver and very productive. What do you think is happening to my sterling reputation at work when I cant even get through 3 days without going home early !?!?!?! Does my company understand? well, yeah...as far as they are concerned I'll solve this problem and be back as my normal kickass self very soon. I told them so.....that is before I found out I am doomed. I will eventually have to do 1 of 2 things: 1) pretend I have no problem and build 10,000 pound sheetmetal projects. This should be a breeze considering I use 1 million dollars of steel and work from buleprints, use calculus and don't make mistakes. Remember, $5,000 mistakes are frowned upon
or 2) end up disgraced because I cant hang anymore.
I suspect my quality of life will soon go from awesome to crap. I have to ask why you would even want to live with this absolute loss of quality of life? Hope for a cure? Hope don't pay the mortgage. Maybe I can become a politician...hold a pity party and get us suckers to pony up the cash for a fat pension for me....you know like your Constitution destroying Congress does.....oh happy day !!!
I am a realist. I am not a: narcissist , a magician, or wealthy.
I read about levels of pain. One says: #9 why me? I am not that person. Why you? cause the dang nerves in your head are doing the psychedelic bop Lumpy !!! Hows come children die horrible deaths from cancer? My CH is from??? Impure thoughts in my head ? Boo Hoo, woo is me Jesus done pooed in my corn flakes. Nope, it's just a stinkwad of physiology gone awry. That is realism for you. I'm Irish, but don't have lucky charms and cant grant wishes. Obviously I am not wealthy. If I was, I would hang out with Keith Richards and find out what chemicals he is on. He cannot be killed by even high levels of radioactivity and certainly a Cluster Headache wouldn't dare tread into his toxic waste dump of a body because it would mean certain death
All joking aside, you tell me why you want to carry on like this. If I offend anyone by this question...well...don't answer, stick pins in a little doll that looks like me, take up crochet, write your Congressman (provided he isn't under indictment or already in prison) . But DON'T chastise me for asking a poignant question. I did not come here crying on your shoulder. I didn't insult your race, religion , socio-economic position or belittle you in any way. I ask you: why do you live with this quality of life?
Sincerely, CH newbie
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PARABELLUM
I do look like my avatar...But I swear to God I am not a bag of aqua colored french fries
Calling an illegal alien an 'undocumented immigrant' is like calling a drug dealer an "unlicensed pharmacist"
The Second Amendment is in place in case the politicians ignore the others!!
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Charlotte
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Re: ok, you may not like this
« Reply #2 on: Aug 23rd, 2007, 11:57pm » |
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we carry on because life is a gift.
Charlotte
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HeadhurtinMama
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Re: ok, you may not like this
« Reply #3 on: Aug 23rd, 2007, 11:57pm » |
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Why, you ask, do I live like this? Because my two little boys need a mommy! That's why... Because I have a family that loves me and would be devestated without me. That's why... Because I now have kickass neuro who won't let me give up until we kick the beast back to hell. Trust me, you have not been given a death sentance. Many of us work with clusters, and are harder workers because of it. Many of us just deal because we have no other choice (see second sentance above) and because there is only one other alternative to living... Sorry you gotta be joining us, but welcome to the family!
Bridget
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Here comes the rain again
Falling from the stars
Drenched in my pain again
Becoming who we are
Wake me up when September ends
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Groov
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Re: ok, you may not like this
« Reply #4 on: Aug 24th, 2007, 12:37am » |
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on Aug 23rd, 2007, 11:57pm, HeadhurtinMama wrote: Many of us work with clusters, and are harder workers because of it. Many of us just deal because we have no other choice (see second sentance above) and because there is only one other alternative to living... Sorry you gotta be joining us, but welcome to the family!
Bridget |
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Hi Bridget
I shortened your quote a bit because I would like to pick your brain about work. Of course I do not know what you do for a living and it isn't my biz. But maybe I will not be too intrusive to inquire just how you work with this problem??? Some here may have a job that allows them to pick & choose their hours or maybe own their own business. I could see that working for them. I would be interested to hear from anyone who works in a "production oriented" (so to speak) climate. That is to say a place where tangible items are produced by you. I am going to guess that your statement of "harder workers because of it" means that you have used your gray matter to find ways to work around the problem. Which could translate to making you a better worker by virtue of the fact that you learned "new tricks" read: ya got smarter.
I work in a fabrication shop. Like many here, you are responsible for production of a manufactured product. Here, y'all might not like this either..but it is reality. Any company (I owned one for 16 years) is only viable if the employees produce a product competitively. This is to say that an employee MUST consistently produce the product daily...every day. Now then, any company that has an employee who can no longer produce the necessary amount of product will inquire as to why. If they have a drug problem, are lazy or physically incapable....they are history. The Americans with disabilities act likely does not force a company to keep an employee who is simply incapable of performing his or her "normal and expected" activities. The employer must make what is called "reasonable accommodations" I.E. I cant have a job driving a taxi if I am blind. It is not discrimination if I am simply incapable. I am there to run my crew efficiently. I do not expect them to let me pick & choose when I can do the job. This may rub some people the wrong way. They may consider it somehow unfair. If you own a company, you will have a more fiscally correct insight as to why this is. Like it or not, that is how things work. All that nonsense aside, here is a good question for anyone: At any time, do you become capable of ignoring the pain well enough to resume your normal job without a reduction of quality of your job performance.
Heres my deal: if I can somehow find a way to get around this problem without compromising my quality of work...everything will be everything. If not, I'm done.
Anyone got a story of success as it relates to this?
Cheers, Dave
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PARABELLUM
I do look like my avatar...But I swear to God I am not a bag of aqua colored french fries
Calling an illegal alien an 'undocumented immigrant' is like calling a drug dealer an "unlicensed pharmacist"
The Second Amendment is in place in case the politicians ignore the others!!
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LeLimey
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Re: ok, you may not like this
« Reply #5 on: Aug 24th, 2007, 1:47am » |
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Yeah I've got a story of success for you
I've got a son who was six on Tuesday. He has been diagnosed with CH since the age of three and has cycles that last six month with five months remission before his next cycle starts.
He is too young for Imitrex, DHE, Verapamil - you name ANY CH drug and he is TOO YOUNG for it. All he has to abort hits is O2.
This is hard for you to understand? Try explaining it to a kid of less than three. Think of what you'd tell him about why he gets pains in his head so bad he wants to bang his head on the floor or the wall to make it go away.
The reason I'm telling you this is he has dealt with it like a man from day one. He has his attack, he screams for his "magic mask" and he breathes in O2 like a drowning man and when the attack is over he picks himself up andgets on with the important task in hand of playing and living his life. He doesn't dwell on it, he has worked out his own theory about his "custard headaches" and it makes sense to him andgives him something to visualise and fight. He is my inspiration.
I'm chronic. When I first started getting hit this ruled my world, I lived awaiting the next attack all the time. It took a few weeks, not long after finding this site actually to give myself a good kick up the arse and learn to live IN SPITE of CH not with it. Shit happens. We get dealt a hand and we have to play it and that's all there is to it. We don't have to give in, we can look for options that work for us be it prescriptive, alternative or whatever. The important thing is not giving in!
There are a hell of a lot of people in this world a hell of a lot worse off than me. There are a hll of a lot of luckier people too. There's only one me, I have only one life and I'm bloody well going to live it and enjoy every damn minute I can and nothing, not CH and not any other medical condition will stop me. I do have my self pity times. I won't lie to you and say I don't. I allow my self a good wallow in it once in a while ad then I get back to dealin because my time here on this Earth is worth more to me than my damn CH.
Wehave other people here with jobs like yours. We have people heading up huge corporations and we have people who work for McDonalds. The world needs all of us. No one is more important, if we don't have people who cook and clean then captains of industry can't do their jobs.
So there you go - I make sure I get a hell of a lot out of my two cents!!
Helen
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Groov
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Re: ok, you may not like this
« Reply #6 on: Aug 24th, 2007, 3:32am » |
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LeLimey, thanks for your input. Sorry about your child. The "custard headaches" is kinda cute tho.
What I am looking for is practical or "mechanical" solutions or if not actual solutions...then tricks of the trade. I don't have a single pity moment for myself...not one. There is no point in such behavior for myself. If others find some solace in motivational talk or group therapy, 12 step programmes etc. That is fine for them. I wouldn't criticize. I don't use defense mechanisms or fantasy in any aspect of my life. I use realism and try to solve problems with the best means available. For instance, I'm sure some pin their hopes on some miracle cure. For me that is not mentally healthy. Do I think something is possible?? Well, you bet. Medical advances are almost staggering these days. But I will just have to research this subject and come up with the best solution available at this point in time. I have to weigh my response or reaction to this problem after I get all the facts....remember it was only tonight that I learned of this condition. Yesterday I would have bet you 50 bucks I could find a Doc who can cure it with ease. Gimme a break....I'm a sheetmetal worker Jim, not a Doctor
I appreciate the sincerity in which you give me something positive to ponder. That is kind of you. Truthfully, I'm looking for clinical facts or actual case scenario solutions members here are using in order to control the condition to the point where they can maintain their pre-diagnosis lifestyle. You speak of the myriad of members here who work different jobs who have found solutions to maintain on the job. Great !!! Those are the people I want to hear from. It doesn't have to be exactly the same industry as mine. The problem and possible solution is the same. What I mean by the "mechanics" of it is well...like this: The member will come on and tell me: Look Dave, I had the same problem at my work place. I did "this" and "that" which made it possible for me to perform my duties adequately. That would be a good place for me to start. I might hear this instead: Cowboy-up Davey....work with a headache and eventually you'll get it under control. Seriously, that would actually be valuable to me. Know why I research about everything under the sun? Cause I know there are a ton of people out there with information I wouldn't even be able to imagine on my own. Remember I was gonna bet you I could find a Doc to cure your headaches yesterday...glad I didn't take that bet. So, tell me what works best for you at work people. But hey, I'm not a slug. I already have a few ideas myself. First of all, I don't think my CH's are as bad as some of yours. This week I decided to stay at work no matter what and tough it out. I've done ok in regards to that. I didn't leave once. Ol Jethro did all his mathematical sypherin' in the morning when I had a clear head. That way when the pain came in the afternoon, I had the important stuff out of the way. Thats all I got at the moment. Oh, there is one other thing I have been doing. I don't show them I am in pain. Reason being two things. It gives my crew confidence and the people I am responsible to will likely not scrutinize me or become overly-concerned. Also, I don't want to bring other people down who work with me. They don't deserve it and like I said I don't go around boo hooing..not my style.
Anyways, it may help to add that I work with heavy machinery and safety is a concern. Changing jobs is not an option BTW. This one is what I do and has good insurance. If you have an insight...lay it on me...don't be shy 
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PARABELLUM
I do look like my avatar...But I swear to God I am not a bag of aqua colored french fries
Calling an illegal alien an 'undocumented immigrant' is like calling a drug dealer an "unlicensed pharmacist"
The Second Amendment is in place in case the politicians ignore the others!!
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Wayne
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Re: ok, you may not like this
« Reply #7 on: Aug 24th, 2007, 3:35am » |
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I do believe that there are many people here who have asked the same question as you - if this is how my life is going to be then do I really want to carry with it? Fact of the matter is that these things can be beaten, so don't despair, fight back! there are many options available to you that, while they will never cure your CH, will certainly make the whole experience a lot more tolerable. You're a resourceful bloke so I urge you to grab a Redbull and read as much as you can. Knowledge is definitely power with these things.
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A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.
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soulroach
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Re: ok, you may not like this
« Reply #8 on: Aug 24th, 2007, 6:58am » |
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Hey man, I hear ya. I too work in the production field and there is no way to walk away without reprocutions. The magic that works for me is Immitrex injections. I tried the pills and the nose spray but neither worked. However, the injections are a miracle!! I just carry them in my pocket, if I feel a HA coming on I slip into the bathroom, BAM, take a shot and in 5 min.(no lie) it's gone and I'm back to work like nothing happened. When I'm at home I use oxygen to beat it, but carrying a tank around brings me down, so I keep the immitrex in my pocket. You should try it, what have you got to lose, know what I mean?
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once in awhile you get shown the light in the strangest of places if you look at it right
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medicjeff505
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Re: ok, you may not like this
« Reply #10 on: Aug 24th, 2007, 11:41am » |
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i am a paramedic in a busy urban system. i work a 24 hour shift in a relatively slower station that averages 8 -12 calls in the shift then i work two 12 hour shifts in the city that typically average 12-15 calls during the shift and depending on what events may be going on in the city that can easily go up to 20 calls on the night shift on the weekend. i am not discounting your loss of productivity at your job at all, and we all here know the pain you feel, but your loss of productivity is just monetary, whereas if i have a bad day at work the potential loss is someones life. my intent is not to come off as an ass but just put a little perspective on things. we all live our lives with ch's. i am on preventatives, i have abortives that i know work, and i know my triggers. i have had some minor hits while on duty and have managed to push through. i have yet to miss any work, and most importantly none of my patients ever have ever had sub par care. my partner is fully aware of my headaches as is my commander and if it were ever to become an issue while i was on duty or most importantly with a patient we would deal with it appropriately. i wish you luck. cheers...jeff
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seasonalboomer
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Re: ok, you may not like this
« Reply #11 on: Aug 24th, 2007, 12:50pm » |
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Hey there Assault:
Sorry you've got CH. It's not the end of the world. You need to spend a little less time writing and a little more time researching what is on this site. There are plenty of tools that allow most of us to manage our CH in a way that it is simply a facot of our lives we live with.
1.) Oxygen -- get some -- I know you may not be able to use it at work but for the hits at home it has good odds on knocking them out quick (with no drugs)
2.) If you would have spent more time reading you would know that Imitrex pills DO NOT WORK fast enough for CH. You need injections. They work almost every time for me in less than 6 minutes. The time it takes to hit the restroom and disappear for a few minutes if you are at work. They are not pain killers and do not alter your motor control or judgement so you're back to work.
3.) Preventative options -- there are several -- click around the meds page.
These allow you to possibly get fewer hits when you are in cycle.
4.) Alternatives -- there are plenty.
So quit blathering on about how uniquely screwed you are and read on to find good answers to your problem. Folks who have spent the time and done the homework don't feel screwed - simply inconvenienced and living our lives with CH.
Scott
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Groov
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Re: ok, you may not like this
« Reply #12 on: Aug 24th, 2007, 3:29pm » |
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Thanks for the good advise Jeff.
Scott, show me where I was "blathering" about my "unique pain???" The only reference I made to pain was asking how it might affect my job and the safety of my crew as well as productivity. These are valid questions absolutely void of any pointless blather or self-pity. If you even bothered to read my post, you would have seen I had all of about 2 hours to research the entire subject. Uh, doesn't it tell members to ask questions on this very board? Common sense tells one to ask questions of those who know. How much more succinct can I describe it for you? I mean, please don't try to pin some "drama queen" moniker on me when my questions were posted as nothing more than trying to learn from those in the know. You're hacked off at me because I took up too much bandwidth? Judging by your 5 stars, you live here. My plan was to come, ask a few questions and research as quickly as possible, then get a plan together...done.
The site or sites I looked at last night had information, but the charts showed 70% of the people had absolutely NO control plan that worked. So waddya suppose I thought would work best? Ask questions from experienced people...not look at charts. Well how bout that !!! I got some great suggestions from people here and after some more extensive research (not like the whole 2 hours I had last night after I found out I had CH) I have a plan that looks like it will not only work, it may exceed my wildest expectations. You see, my Doc told me almost nothing as it relates to this condition. I knew absolutely nothing last night other than I had these pills I was supposed to take and the problem would be eliminated. I was frankly shocked to find out that it was nothing like I thought. So excuse my ignorance Scott. Sorry for being such a burden and leach because I didn't know where or how to research this subject.
Sorry, I don't mean to be such a jackass about it, but your post was what appeared to me to be antagonistic. No harm done, maybe just a misunderstanding.
Regardless, thank you all for the timely information. I am very grateful for the members help here today. A point I apparently didn't get across earlier was this: these people I work with, including my own son, are people who rely on me and are friends I have known for many years who I feel a personal responsibility to.
It ain't just "about me" or about pain or some other steaming heap of narcissistic pony loaf. It's about a sincere attempt on my part to find a solution to a problem. Yes, I know I am long winded sometimes on the wrong track. But my intent is sincere and I do very much feel indebted to y'all for your help.
Cheers, Dave
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PARABELLUM
I do look like my avatar...But I swear to God I am not a bag of aqua colored french fries
Calling an illegal alien an 'undocumented immigrant' is like calling a drug dealer an "unlicensed pharmacist"
The Second Amendment is in place in case the politicians ignore the others!!
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Charlotte
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Re: ok, you may not like this
« Reply #13 on: Aug 24th, 2007, 3:45pm » |
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When were you diagnosed? When did you try lyrica, imitrex, etc? Were they part of an elimination process in your diagnosis? How did you find out you have ch?
If this is your first cycle, how long has it been since it started?
What is the plan that your doc or neuro has outlined to help you?
What are you looking for here?
Charlotte
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| « Last Edit: Aug 24th, 2007, 4:01pm by Charlotte » |
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seasonalboomer
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Re: ok, you may not like this
« Reply #14 on: Aug 24th, 2007, 4:25pm » |
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Okay, look I'm not trying to antagonize but I am trying to tell you to take a breath, communicate succinctly and you will get the advice which you seek.
My advice is the same. Get your nuero or physician to get you imitrex INJECTIONS and O2 that delivers at 12-15 lpm with a non-rebreather mask and you find your life improves.
You may have to live with CH for the rest of your life. The sooner you take the time to learn how people try to manage CH and you may not like this but I have actually read posts like yours before and provided help by getting the person to calm down a little and get focused. I did read your posts. And in summary they say, "new guy to CH, feels fucked, needs help" - so thats what you got from me, some good advice.
peace,
Scott
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BlueMeanie
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Re: ok, you may not like this
« Reply #15 on: Aug 24th, 2007, 5:24pm » |
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Obviously your new to Clusterheadaches and I can certainly understand what you're going through. Believe it or not you're actually lucky to have found this site. There are many possibilities out there to help abort and prevent clusterheadaches.
Many of us who have had them for decades never had all the options that's available today. You need to forget those pills and try Injections. There is a big difference between the two. They may not work for you, but for the majority, they work within 10 minutes.
There is Oxygen, othere triptans, and lots of different preventitives to possibiliy reduce the intensity and amount of hits per day.
You ask how we deal ? I can tell you it's not easy, but we do. I used to teach and would feel terrible putting my class on a break for an hour a day while I suffered. Back then, they didn't have Trex injections and no-one heard of 02 for aborting CH's. Mostly all I got was narcotics which just made me walk around in a daze and not stop the attacks.
You WILL learn to deal with it. There are LOTS of things you have yet to try. READ READ READ.
Good luck to you and I hope your cycle ends soon.
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Groov
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Re: ok, you may not like this
« Reply #16 on: Aug 24th, 2007, 5:39pm » |
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Thanks for the help Scott. Yes, I was indeed extremely confused about the subject. I read some junk about how it is incurable and has almost no viable treatment. Saw the site & figured I might ask around...albeit almost in panic mode 
Today I got home and much to my surprise, I read posts that informed me that I am worrying about it wayyyy too much. I even had a few P.M.'s of members giving help. Wow, that kicks !!!
I panicked because an expert (my neurologist) gave me these pills and told me to go get an MRI. We should be able to clear this up no sweat. So...off I goes half-informed. Problem persists, Doc goes out of town and I can't speak to him. So, I start to research as best I can. Get to sites that tell me it is an incapacitating condition in which there is no viable control or treatment for.
I even thought of it as a death sentence. You can laugh at me for that. But what the heck, I only know what I had seen up to that point.
Now ol Dad's crappin bricks. Not because I have this self-important or entitlement attitude. Hell, I ain't gonna live forever, did most everything I want to do anyways. I start thinking about my personal responsibilities. These are with my work and above all my son. He is 19 years old and I am a single parent. It is my duty to get his life going in the right direction and afford him every opportunity to succeed. So please don't think I come here to go: I, me, my"
Anyways, I described my job duties in detail so others could maybe give me some insight into what they do for a solution. I must say that when I came home today I was both grateful and relieved like you can't imagine. Wasn't even aware of shots, inhalers or much else. Jeff's talkin about 6 minutes !!! I was floored. Pretty soon I'm thinking the other sites were either incomplete and somehow misleading. I think you might ask me this: why & the heck didn't you discuss this in greater detail with your Doc!?!?!?
Well, not knowing anything about medical stuff or CH, I thought I asked the correct questions. I got the impression that by simply following his directions and taking the medicine, the problem was finished. This is what I understood him to be telling me. There was no dialog about re-occurrences. Nothing about the fact that it is not a medical condition that all experts are in agreement as to it's cause(s) Ok, I'm ignorant to medical stuff....all I can do at that point is to follow his instructions.
That is how I got to this point. However, I am formulating a plan to solve the work issue. After reading these helpful posts, I am convinced that it is entirely possible for me (the medically ignorant guy) to fix this before it damages my job. So, woo hoo...think I'll go take out my new sport truck and blast .9 G's around a few corners tonight. Then tomorrow I'm gonna go to work & tell my crew (in a Burgess Meredith voice) "Get ta work ya lazy bums"
Cheers, Dave
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PARABELLUM
I do look like my avatar...But I swear to God I am not a bag of aqua colored french fries
Calling an illegal alien an 'undocumented immigrant' is like calling a drug dealer an "unlicensed pharmacist"
The Second Amendment is in place in case the politicians ignore the others!!
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Groov
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Re: ok, you may not like this
« Reply #17 on: Aug 24th, 2007, 6:12pm » |
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on Aug 24th, 2007, 3:45pm, Charlotte wrote:When were you diagnosed? When did you try lyrica, imitrex, etc? Were they part of an elimination process in your diagnosis? How did you find out you have ch?
If this is your first cycle, how long has it been since it started?
What is the plan that your doc or neuro has outlined to help you?
What are you looking for here?
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Hi Charlotte. My last post to Scott kinda outlines what I was looking for..and found here. BlueMeanie (ah, a Beatles fan !!!) told me I was lucky to have found this site. I agree 100% !!! If I had found anymore like the last 2, I would have been even more mis-informed & panicked. Now I have enough good info. to go back and really make my Doc explain and offer me options that I can understand. At present, he had only given me Imitrex pills, prednizone and Lyrica. I am thinking he held off going into the particulars of treatment options for CH because he wanted to wait for the MRI to come back........but I am simply speculating...I am not sure. I had the first cycle about 3-1/2 weeks ago. Waited a week, seen my family Doc. He sent me to a neurologist about a week later. Took my pills, didn't get any better. Figured out myself I had CH's. We had talked about CH and he indicated it was what I was having, but wanted an MRI and to see me in 3 weeks. Now that I have the correct questions for him and understand what I had to go find here on my own.....no sweat.
So, thats about it.
Regards, Dave
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PARABELLUM
I do look like my avatar...But I swear to God I am not a bag of aqua colored french fries
Calling an illegal alien an 'undocumented immigrant' is like calling a drug dealer an "unlicensed pharmacist"
The Second Amendment is in place in case the politicians ignore the others!!
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Kevin_M
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withered branches grow green again.
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Re: ok, you may not like this
« Reply #18 on: Aug 24th, 2007, 6:22pm » |
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Well hey Dave, cheers to you too. A coping attitude toward this can come from others in your shoes that are but just a step ahead. Helping you get this taken care of the way that has worked for others, and will for you too. Ch is something that needs attention, proper attention.
A doc familiar with CH is a good start, we will always continue to be here for you as long as you need and whenever for the unthought of reasons that may occur, you'll see. We'll try to get you straight on this and you sound like a go-getter learner. The road may be winding and bumpy but we can be your map.
Soon you'll see yourself commenting to another finding us in the state of mind you felt arriving, and you'll be a beacon in the storm because you will understand.
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Groov
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Re: ok, you may not like this
« Reply #19 on: Aug 24th, 2007, 7:10pm » |
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on Aug 24th, 2007, 6:22pm, Kevin_M wrote:Well hey Dave, cheers to you too. A coping attitude toward this can come from others in your shoes that are but just a step ahead. Helping you get this taken care of the way that has worked for others, and will for you too. Ch is something that needs attention, proper attention.
A doc familiar with CH is a good start, we will always continue to be here for you as long as you need and whenever for the unthought of reasons that may occur, you'll see. We'll try to get you straight on this and you sound like a go-getter learner. The road may be winding and bumpy but we can be your map.
Soon you'll see yourself commenting to another finding us in the state of mind you felt arriving, and you'll be a beacon in the storm because you will understand.
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Man !!! Y'all are awesome !!! I got enough stuff here to sink a battleship. Went from being totally mis-informed and thinking I was going to totally fail my responsibilities to thinking I have very possible solutions !!!
Well, impure thoughts all gone.....I think I'll get back to the health club Monday. But first I am being ordered to do my homework on CH.
Hey, 2 cannibals were eating a clown....one turns to the other & says: "This taste funny to you"
A penguin goes to get an oil leak fixed on his car. Mechanic tells him it'll take an hour. Penguin goes to the convenience store across the street gets a vanilla ice cream cone....gets it all over his beak.
Comes back to pick his car up. Mechanic says: "well, it looks like you blew a seal" Penguin says: "nah, thats just ice cream"
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PARABELLUM
I do look like my avatar...But I swear to God I am not a bag of aqua colored french fries
Calling an illegal alien an 'undocumented immigrant' is like calling a drug dealer an "unlicensed pharmacist"
The Second Amendment is in place in case the politicians ignore the others!!
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Jonny
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Give me a shovel Ill dig my own grave!
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Re: ok, you may not like this
« Reply #20 on: Aug 24th, 2007, 7:21pm » |
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on Aug 24th, 2007, 3:29pm, assaultme wrote:| Judging by your 5 stars, you live here. My plan was to come, ask a few questions and research as quickly as possible, then get a plan together...done. |
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LMAO!  .......I guess nobody explained to you that you could have this till you die.
This site is to inform, but even more it is a family. I have been here for eight years and post everyday, I have met(in person) most everyone here more than once. Why you might ask?, because I have had this thing in my head for 33 years (31 chronic) and these people here that taught me how to cope better are my family now!.
Sure, you can come and read and even ask questions, but what then......who are you going to talk to that understands what you go through?
Heres how you deal with work......You punch out when you get hit and punch back in when its over, big deal if you have to work an extra hour.......your boss will love the work ethic! (its the price you pay for something you never asked for, but you manage!)
Im not trying to tell you what to do, who the fuck am I to do that....LOL
BTW: I own a non-ferrious metal custom welding company, but the key here is .....I always worked metal until I owned this company!
If I can do it for this long im sure a bright dude like you can also!!!
Now suck it up!!!....LOL
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Linda_Howell
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Hearing is one thing. Listening is another.
 
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Re: ok, you may not like this
« Reply #21 on: Aug 24th, 2007, 8:36pm » |
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Sorry, but I picked up on this also.
Quote:My plan was to come, ask a few questions and research as quickly as possible, then get a plan together...done.
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Wrong. This condition is NOT...repeat NOT like cleaning out the cat box. Figure out which litter is best, which scoop is best and then just do it and get it done.
We all have responsibilites to jobs, family and people that count on us.
If there is one thing that you get from here and from us, I hope it is this:
You cope. Just like the rest of us do. Read some more of our stories. This can't be done in one sitting.  then start printing some medication pages from here and give it to your Dr.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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MR_FLOOR
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Go Cubbies / even though they suck
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Re: ok, you may not like this
« Reply #22 on: Aug 24th, 2007, 9:00pm » |
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on Aug 24th, 2007, 7:21pm, Jonny wrote:
Heres how you deal with work......You punch out when you get hit and punch back in when its over, big deal if you have to work an extra hour.......your boss will love the work ethic! (its the price you pay for something you never asked for, but you manage!)
Now suck it up!!!....LOL
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I could not have put it any better.We deal with it cause we have to.It's not a death sentence.It's just something we have to battle for the rest of our lives,key word battle and with the right medical help it's bearable.Keep your attitude positive and you will survive.
Dave
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Ray
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Ray and Shade
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Re: ok, you may not like this
« Reply #23 on: Aug 24th, 2007, 10:59pm » |
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Hello assaultme:
My opinion is that you have to learn as much as you can about what you are up against (Know thy enemy).
Learn as much about the tools that work to turn back the enemy (meds, Oxygen, Redbull, what have you)
Learn how to minimize the impact of this condition upon your life. Take it moment by moment, but maximize the moments by KNOWING your enemy, your tools, and COPE with the bad times as efficiently and quickly as possible. Live life, never let the CH win.
That's my 2 cents, and you got em for free,
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
http://www.myspace.com/rayplace
http://www.shadesgarden.com
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Batch
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FOX 2 - Check 6
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Re: ok, you may not like this
« Reply #24 on: Aug 24th, 2007, 11:55pm » |
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Hey CH Newbie and fellow tin bender/welder,
I'm late in welcoming you aboard but it looks like the old experienced hands have given you their very best advice.
I'm the local O2 pusher. There's a lot to read about using O2 as a CH abortive and you need to start by seeing your doc or neuro for a check up... 'think you already got one, and an Rx for O2 at 7-15 liters/min, a nonrebreather mask and enough O2 cylinders to last you for a week. You might want to ask for a 0-25 LPM regulator as we have a number of us using "High Flow Rate O2 Therapy" > 15 LPM successfully and with no lasting side effects.
We've developed an O2 User's guide and you can find it on the OUCH site at the left or go directly to the following URL:
http://www.ouch-us.org/medications/oxygen/o2info.shtml
then drill down on O2 Information. The Supplemental User's Guide is a pdf file you can down load. Suggest you do so.
Take care and hang in there... You are among friends, supporters, and fellow cluster headache sufferers.
Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, not any before nor after, that’s as lovely as a great airplane. Man has one virginity to lose in fighters, and if it is a lovely airplane he loses it to, there is where his heart will forever be.
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