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(Message started by: assaultme on Aug 23rd, 2007, 11:42pm)

Title: ok, you may not like this
Post by assaultme on Aug 23rd, 2007, 11:42pm
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.
 

Title: Re: ok, you may not like this
Post by assaultme on Aug 23rd, 2007, 11:43pm
  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
[smiley=laugh.gif]
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  [smiley=laugh.gif]
 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

Title: Re: ok, you may not like this
Post by Charlotte on Aug 23rd, 2007, 11:57pm
we carry on because life is a gift.

Charlotte

Title: Re: ok, you may not like this
Post by HeadhurtinMama on Aug 23rd, 2007, 11:57pm
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

Title: Re: ok, you may not like this
Post by assaultme on Aug 24th, 2007, 12:37am

on 08/23/07 at 23:57:30, 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


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

Title: Re: ok, you may not like this
Post by LeLimey on Aug 24th, 2007, 1:47am
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

Title: Re: ok, you may not like this
Post by assaultme on Aug 24th, 2007, 3:32am
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  [smiley=laugh.gif]
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 :)

Title: Re: ok, you may not like this
Post by Wayne on Aug 24th, 2007, 3:35am
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.

Title: Re: ok, you may not like this
Post by soulroach on Aug 24th, 2007, 6:58am
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?

Title: Re: ok, you may not like this
Post by MvT on Aug 24th, 2007, 9:10am
3 tips for being of 'high value & hard to replace

http://blogs.msdn.com/stevecla01/archive/2007/08/24/3-tips-for-being-of-high-value-hard-to-replace.aspx


Title: Re: ok, you may not like this
Post by medicjeff505 on Aug 24th, 2007, 11:41am
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

Title: Re: ok, you may not like this
Post by seasonalboomer on Aug 24th, 2007, 12:50pm
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

Title: Re: ok, you may not like this
Post by assaultme on Aug 24th, 2007, 3:29pm
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

Title: Re: ok, you may not like this
Post by Charlotte on Aug 24th, 2007, 3:45pm
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

Title: Re: ok, you may not like this
Post by seasonalboomer on Aug 24th, 2007, 4:25pm
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

Title: Re: ok, you may not like this
Post by BlueMeanie on Aug 24th, 2007, 5:24pm
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.

Title: Re: ok, you may not like this
Post by assaultme on Aug 24th, 2007, 5:39pm
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"  [smiley=laugh.gif]
Cheers, Dave

Title: Re: ok, you may not like this
Post by assaultme on Aug 24th, 2007, 6:12pm

on 08/24/07 at 15:45:44, 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?  

Charlotte


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

Title: Re: ok, you may not like this
Post by Kevin_M on Aug 24th, 2007, 6:22pm
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.   ;)



Title: Re: ok, you may not like this
Post by assaultme on Aug 24th, 2007, 7:10pm

on 08/24/07 at 18:22:34, 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.   ;)


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"  [smiley=laugh.gif]

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"

Title: Re: ok, you may not like this
Post by Jonny on Aug 24th, 2007, 7:21pm

on 08/24/07 at 15:29:19, 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.


LMAO! ;;D.......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 ;;D





Title: Re: ok, you may not like this
Post by Linda_Howell on Aug 24th, 2007, 8:36pm

  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.  


  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.  

Title: Re: ok, you may not like this
Post by MR_FLOOR on Aug 24th, 2007, 9:00pm

on 08/24/07 at 19:21:07, 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 ;;D

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

Title: Re: ok, you may not like this
Post by Ray on Aug 24th, 2007, 10:59pm
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

Title: Re: ok, you may not like this
Post by Batch on Aug 24th, 2007, 11:55pm
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

Title: Re: ok, you may not like this
Post by Linda_Howell on Aug 25th, 2007, 12:13am


 So,  
Quote:
assaultme


  Have you had time to digest all of this by people who have gone before you and KNOW.  ???

  I would so like to hear your response.   Really.

Title: Re: ok, you may not like this
Post by Brewcrew on Aug 25th, 2007, 8:53am
Pain is inevitable.

Joy is optional.

I opt for joy when I can find it.

It's really that simple.

Title: Re: ok, you may not like this
Post by assaultme on Aug 25th, 2007, 9:17am

on 08/25/07 at 00:13:03, Linda_Howell wrote:
 So,  

  Have you had time to digest all of this by people who have gone before you and KNOW.  ???

  I would so like to hear your response.   Really.


Not yet Linda. Probably no where near...but as I said...that is why I came here and started asking questions. I figured after last night, this would be all I needed to solve the problem. There is actually a whole lot more to this to learn than I ever imagined. But I can read. Really tho, I don't think it will be a big deal. That is to say, originally I was thinking there was no solution. As I posted earlier, I read a few sites on the subject and it led me to believe it was a condition in which you had zero relief and NO chance to work around it. I.E. you would end up disgraced at work and let down all the people who count on you. That is something I don't think I would handle very well. But it is absolutely NOTHING like I was thinking. But, yeah....I will do my homework as I have been told to do.
Regards, Dave

Title: Re: ok, you may not like this
Post by rolo65 on Aug 25th, 2007, 10:20am
Mr. assaultme,

You may want to try being a little less judgmental and defensive. The help you desire comes more easily and readily with honey than vinegar. Try to tone it down a tad and understand that we already know what this condition can and will do to our lives.

Consider the fact that you are in morning and denial about your new found condition. This is normal and will continue until you have accepted that there is no silver bullet for the situation you are in.

Now once you calm down, get the phone book and find a neurologist at a headache clinic. Then start learning and printing out what you find pertinent to bring with you as a reference for you next appointment.

Haggling over your personal feelings here on the board will only get you much more discouraged than you already are. I didn’t start posting on this board for about a year until I had read all the info available here.

You said that you’re a metal worker so you probably have an O2 tank at your disposal. Get a cluster mask (non rebreather type) and a high flow regulator (12-15 LPM) and give it a try, you may be very surprised if you use it properly.

BW on getting PF,

Rolo……..

Title: Re: ok, man I am humbled by y'all
Post by assaultme on Aug 25th, 2007, 10:39am
Yes, another one of my 2 part long winded posts. Well, I get up this morning planning to wax my truck, play my drums etc. and I give the board one last look. Turns out I have several P.M.'s
I take a look and there is all these helpful people taking their time out to give me the correct direction. I thinking, I have been on many forums and generally people help because they want to look like big man on campus...you know....I'm the local expert, kneel before me :)
But I find these humble people who are actually genuine. They didn't take their precious time out for anything selfish. They actually were trying to help others with no benefit to themselves or attempt to ingratiate themselves.
  Now I'm feeling humbled and thankful and almost embarrassed cause who the hell am I to receive such help???  Some told me they didn't understand or I didn't make clear what my purpose or intentions were. Is it "woe is me" or what? I guess I wont submit my new talk show pilot to television called "Indecisive subjects with Dave"  
That is why my posts are long. I try to explain myself as best as I can. I know some of a few different languages and English seems to be about the most descriptive next to some Slavic languages like Ukrainian & Russian. Yet, it is not always guaranteed you will make the reader completely understand exactly what it is you are trying to convey. However, after some P.M. and further posts, I think we are on the same page. It is all about meeting my responsibilities. Some told me that they understand the pain or how difficult it is. Though that is very nice of them to say. I really am not all that concerned with the pain. I mean, some might get some relief is knowing there are other people who "understand" If that helps them, I am happy for them. In my little piece of the world, it is about performing my responsibilities and being productive. The big bad world don't owe me a thing and noone out there gives a tinkers damn if you have shingles, west nile or a goiter :) So, my exact purpose here was (and perhaps still is) to find out what can I do to make it possible for me to serve my purpose as a normal highly efficient fabricator. Well, I am convinced I have found several VERY possible solutions. So much so that I don't even think about this subject with worry at all. Though it is impossible for me to "clock out" and wait an hour, I don't believe that will even be a consideration at this point in time. As I said earlier, my nerve pain must be much less than others here. When it hits, I can fake it well enough to function...albeit not well.
 But from what I have been told by y'all, there are several ways to stop it. As far as I am concerned, it is no longer a worry or big issue for me. I also understand that it may take considerable more research and trial & error before I get to where I need to be. Big flippin deal...I'm up for a challenge. Challenge ain't squat. Try puttin up with my mother in law. Every time I see her, she wants me to repair the flux capacitor on her witches broom.

Title: Re: ok, you may not like this
Post by assaultme on Aug 25th, 2007, 10:39am
 I see one post telling me that my research here is not done and I cant just come & go in a day and have all the ammo I need. Well guess what? That is just what I'll do then !!!  Seriously, I don't see this as a big deal now. There are treatments that work and will make it possible for me to achieve my objective. Not like I originally thought...no treatment with no chance of controlling it.
I'll continue to research as I have been told to do.
I admit it, I was completely mis-informed and worried about naught. Of course I never said I knew what I was talking about. Ok, I've taken my beating for being ignorant. Now, lemme tell y'all something. Don't be so quick to jump someones ass who is ill-informed. Ya think I'm the only guy who ever got bad information? It wasn't done with  malicious intent. It was simply cause I was given a problem to solve and told I had no tools to use to repair it.
Lemme tell y'all a boring short story pertaining to this subject. Had a guy bring in a motorcycle that hadn't run in a while. Spark plugs were out of it and looked like it sat outside for a year. After I inspected it, I realized it was locked up. Call him up and tell him. In the meanwhile, he goes over to a rival shop to inquire why his bike that ran 2 years ago is now hopelessly locked up. They tell him that I likely left it outside and water got in it and rusted. So now he is mis-informed by them and is mad at me thinking I did him wrong. Comes over and proceeds to tell me about his revelation and how I need to come clean. Well, of course it sat inside for a week and that week it probably didn't even rain. After I got him calmed down and explained the technical end of it, he realized he had bad info. That is to say the inside of the entire engine was solid rust and that is not possible in such a short time. Left outside for a year with the plugs out was the correct reason. He turns red and apologizes a hundred times. Now, I could have done all kinda nasty stuff to him. But people ain't perfect and if their intent is good educate them. He turned out to be a pretty loyal customer for a long time. Being humbled is not shameful. It only means you recognize that you don't know it all. That is my boring pontification for which I will not reiterate....yes I know...thank God :)

Above all I would like to thank y'all for the time you have spent with me to educate me on this subject. I would say you're about the kindest bunch of people I have met on a forum....but don't let that "go to your head" bad pun :)
Cheers, Dave  


Title: Re: ok, you may not like this
Post by assaultme on Aug 25th, 2007, 10:53am

on 08/25/07 at 10:20:41, rolo65 wrote:
Mr. assaultme,

You may want to try being a little less judgmental and defensive. The help you desire comes more easily and readily with honey than vinegar. Try to tone it down a tad and understand that we already know what this condition can and will do to our lives.

Consider the fact that you are in morning and denial about your new found condition. This is normal and will continue until you have accepted that there is no silver bullet for the situation you are in.

Now once you calm down, get the phone book and find a neurologist at a headache clinic. Then start learning and printing out what you find pertinent to bring with you as a reference for you next appointment.

Haggling over your personal feelings here on the board will only get you much more discouraged than you already are. I didn’t start posting on this board for about a year until I hade read all the info available here.

You said that you’re a metal worker so you probably have an O2 tank at your disposal. Get a cluster mask (non rebreather type) and a high flow regulator (12-15 LPM) and give it a try, you may be very surprised if you use it properly.

BW on getting PF,

Rolo……..


Rolo, no I am not in morning or denial. I don't deny a problem and after I got the correct help here I no longer think this is a big deal. Last time I was ever in morning was when cable TV took away my NHRA drag racing and replacd it with the Spanish channen. I can speak Spanish some, but they don't have drag racing :(I did however inquire about the oxygen gas at work. The Doc told me that was a bad idea because it was not medical grade. Apparently the industrial grade stuff at work may have some attributes that make it not fit for human consumption. But thanks for taking the time to help.
Cheers, Dave

Title: Re: ok, you may not like this
Post by rolo65 on Aug 25th, 2007, 11:05am

on 08/25/07 at 10:53:31, assaultme wrote:
The Doc told me that was a bad idea because it was not medical grade.  


If the tank has never had anything noxious (gases like Co2, and nitrogen would be fine) in it, than it would be ok.

They put the same oxygen in all the tanks.

PS; WTF does the NHRA have to do with HA's! You watch too much TV.

This guy is too hard headed and obtuse for me to waste my time on. He goes on my troll list!

Title: Re: ok, you may not like this
Post by assaultme on Aug 25th, 2007, 12:25pm

on 08/25/07 at 11:05:39, rolo65 wrote:
If the tank has never had anything noxious (gases like Co2, and nitrogen would be fine) in it, than it would be ok.

They put the same oxygen in all the tanks.

PS; WTF does the NHRA have to do with HA's! You watch too much TV.

This guy is too hard headed and obtuse for me to waste my time on. He goes on my troll list!


NHRA is fun , fast & exciting to participate in as well as watch Rolo. Just tryin to add some fun to todays chit chat.  I watch little TV, but drag racing is something I like. It does say "getting to know you" I like drag racing, now you know what I like.  Since I have my questions answered, why not talk about something that directly pertains to the boards topic "getting to know you"
Everyone here seems quite friendly and interested to know one another. I race motorcycles, cars, snowmobiles, anything I can get my hands on.  I am very much involved in music. I play drums and am like a self-proclaimed semi-expert on rock music. Not truly an expert, but I know quite a bit about bands and music in general. You can add me your troll list if you want, but you can also tell me about yourself if you would like.
As far as the industrial grade oxygen goes. I too thought it should be the same as my Doc would give me, but I will have to follow her orders. I would be interested in hearing what others here think about ignoring her orders and going it on my own. I will have to remain hard headed at this time because she has a degree in medicine, my degree is in beating metal into various shapes, motorcycle mechanics and why I think acoustic drums are still better than electronic drums.
That is my attempt to lighten your day Rolo. It is a dry type of humour called "inversion"
Right now I will have to wait until Tuesday so I can consult with my Doc. Now that I have the proper questions for him, I suspect I will be getting a lot done...thanks to those on this very board.
Have a nice Saturday.
Dave

Title: Re: ok, you may not like this
Post by Jonny on Aug 25th, 2007, 1:51pm

on 08/25/07 at 12:25:27, assaultme wrote:
As far as the industrial grade oxygen goes. I too thought it should be the same as my Doc would give me, but I will have to follow her orders. I would be interested in hearing what others here think about ignoring her orders and going it on my own.


Welding 02 tanks are filled from the same main tank as medical tanks. the only difference is the tank inspection process.

Ive been sucking welding 02 for many years, I have also converted 28 medical regulators to fit welding tanks and shipped them out to folks that couldnt get 02 from their doc.

If your doc will give you a script for 02 thats great, if not, start sucking that welding 02..........it stopped 80% of my HA's and I learned about 02 here at this site.

Title: Re: ok, you may not like this
Post by assaultme on Aug 25th, 2007, 2:39pm
I go to see him Tuesday Jonny. I was planning on having him give me an oxygen tank & mask thing. Would there be any reason he would not give me the tank? I see you have done "conversions" of these tanks for people who cannot get one from the Doc. Why won't Doctors give out tanks to people who need them? Docs seem to confuse me sometimes. One says yeah, do this...the next says oh don't do that or you'll throw your carburettor out of adjustment. I mean, is there a possibility that I will have to start doing my own medical procedures so to speak? Everything I read here tells me that it is a good thing to try. It is definitely something I want to do. I'll do it on my own if he won't help me out I guess. But I am concerned that going against his orders might somehow compromise his treatment. How would I go about insisting on it?
For instance,  I tell him I went to a website and it has helped others and even though he isn't going to give me a tank I will do it on my own. Sometimes Doctors can get kinda hacked off at you if you try to do the job yourself.
Do I : dump him and find a new one who understands oxygen treatment better? Don't tell him about it? or what?
Of course I haven't seen him to even ask yet, so I may be wasting your time even asking. But I figured if I knew how I should approach him with this, I would get the best results possible.
Thanks, Dave

Title: Re: ok, you may not like this
Post by HeadhurtinMama on Aug 25th, 2007, 2:50pm
Dave, Can I ask who the neuro is?  The one I saw in Decatur was Dr Mahmood and he didn't even diagnose me correctly.  If this guy won't help you, get yourself in to see Dr. Catt at Carle in Bloomington.  She is the best around, IMHO.  My first visit with her started me on verapamil, trex injections and O2.  She is very up to date on CH treatment.  Mind you, she was the 5th or 6th Neuro in central IL I had seen.

Bridget

Title: Re: ok, you may not like this
Post by Jonny on Aug 25th, 2007, 2:55pm
Print this out and take it with you.

http://www.headaches.org/consumer/topicsheets/oxygen.html

Tell him that if he dont know what they knew 50 years ago you will be finding a new doctor!

Let me know if you ever need to set up your own rig!  ;)

Title: Re: ok, you may not like this
Post by assaultme on Aug 25th, 2007, 3:06pm

on 08/25/07 at 14:50:24, HeadhurtinMama wrote:
Dave, Can I ask who the neuro is?  The one I saw in Decatur was Dr Mahmood and he didn't even diagnose me correctly.  If this guy won't help you, get yourself in to see Dr. Catt at Carle in Bloomington.  She is the best around, IMHO.  My first visit with her started me on verapamil, trex injections and O2.  She is very up to date on CH treatment.  Mind you, she was the 5th or 6th Neuro in central IL I had seen.

Bridget

Hey Bridget wassup?
Sure, his name is Zaheer Ahmed.  Here is something interesting that goes with what I told Jonny: His associate Dr. Schlagel asked me what he had me taking. I told her: prednizone, Lyrica and Imitrex pills. She goes: "HMMMM, I have never heard of taking Lyrica for that!!!" Now I'm going: "What the heck is going on here!?!?!?" Have I just stepped into a 3 stooges movie or am I doing something wrong? Now, don't get me wrong. I am not criticizing these Docs. Maybe I am doing something wrong myself. As I have made abundantly clear I'm pretty ignorant when it comes to medical stuff. Never really been sick in my life before. Broke a few bones riding bulls, but taped them up myself and went back to work the next day. Busted my head open on cement once when I was 6 years old. It cracked my skull and I had to take Dilantin for a while. Oh, I forgot something that may help. I had minor headaches for about 4 years as a boy. I didn't go see a Doctor until my Parents forced me to. Dilantin solved the headaches and I have been fine for over 35 years. I appreciate y'all having patience with me on this. If it were a motor, I'd hook you up. If it's medical advise....I'd probably cause you  to overdose or something  [smiley=laugh.gif]
Can I come back here Tuesday night and tell what I got accomplished?
Regards, Dave

Title: Re: ok, you may not like this
Post by assaultme on Aug 25th, 2007, 3:07pm

on 08/25/07 at 14:55:47, Jonny wrote:
Print this out and take it with you.

http://www.headaches.org/consumer/topicsheets/oxygen.html

Tell him that if he dont know what they knew 50 years ago you will be finding a new doctor!

Let me know if you ever need to set up your own rig!  ;)



Yer an awesome dude Jonny. I like the 50 year old technology dig. I'll use it if I have to :)

Title: Re: ok, you may not like this
Post by Jonny on Aug 25th, 2007, 3:12pm

on 08/25/07 at 15:07:37, assaultme wrote:
Yer an awesome dude Jonny.


Nah bro, im just a dude giving back. (We call it rowing the boat)

Good luck, man!

Title: Re: ok, you may not like this
Post by assaultme on Aug 25th, 2007, 3:12pm
Oh geez, I just screwed up again. I completely forgot to tell y'all that on 1-18-07 some clown pulled out in front of me and destroyed my new Ford truck. I began getting headaches that day and continued to have them fairly often for a few months. They tapered off a lot, then the CH developed by the 8th month (this month) The accident related headaches were not at all CH as I understand it. They were simple/general mild frontal headaches just like a headache any normal person gets from time to time. Sorry I didn't include this information earlier. It just didn't cross my mind.

Title: Re: ok, you may not like this
Post by Redd on Aug 25th, 2007, 8:44pm
Hey Dave,

You sound so much like me when I first found this place.  LOL.

When I finally got correctly DX, I was at wits end.  My attending PHy. would not allow me to return to work for quite some time untill there was some semblance of control over these damn things.  

I was dating a man at the time I arrived here, that thought there was an easy answer, find the right pill, or the correct lifestyle cahnge and I'd "cure" myself of this.  It was tollerable for him when the attacks would be once a day, wake me from sleep, and I'd (not knowing what it was at the time) took the sudafed and some tylenol PM's and then on an hour or so thought they "finally" kicked in.  Boy I had myself convinced they were simply extreem allergy attacks.  We won't mention the many nights I was trying to pry out my molars to stop the pain during that hour or so.

However, when these attacks started to come during the day, in addition to the night attacks, he sent me off to the Doctor, and even though I had no insurance, I went, and then the truth was known.  Cluster headaches all these 20+ years.   Not TMJ, not allergies, not "massive migrains".  

When I first found this site, I thought I'd find the answers, a way to stop the hell, but what I found is that what the Doc said was true.  There is no cure, no silver bullet.  I learned here how people cope.  The kick in the ass how to live between the hits.  I also found, when I couldn't take the meds I could get on the programs through the hospital, (very bad side effects) I was intoduced to an alternative method of dealing with the beast.  It took another year of research and soul searching, and out of pocket medical costs including some perscriptions, to finally decide that my head and my future had to try something else.  CH lost me one job, had me 1 week away from the downward spiral of  homelessness before I was allowed to return to work.  I have 2 teenage children that I couldn't let this happen to.

Jump to today...

I'm employed by the nations largest media holding company.  I'm in sales and I deal with people on a high level of B2B interaction every day.

I've had some major attacks that they have tollerated very well because I distributed the information from the coulleage letter available.  When I got hit, they let me deal, then let me get back to business at hand.

It's pretty much a crap shoot as to what is and isn't going to help us as far as Meds go, but there is always hope.  We know that what works now may not always work, and we have to try something else.  What worked last cycle may not work the next.  But there are many methods of dealing with the beast.

You sound to me to have a good attitude already that you are not going to give in to this, but battle with every cell in you to overcome it.  This is a very big bonus for you, as positive attitude is key.

One thing I'd like to inform you of, is that if the latest breaking news on this condition is going to be stated, you will hear it here at clusterheacaches.com many years before it gets to your doctors ears.

So don't feel you need to come in, take what is here today, and leave.  The best and newest information available will be shared here first.  Hell we are better educated on this condition than most MD's as it is.  And everything you can contribute is just another step towards the gates of a cure.

Besides, like Jonny, I've met most of the folks here at least once, and they are my family, and I love them dearly.  Manyof them have helped me through some very dark times, and I'll pay that forward anytime I can.  We all row the boat.

Title: Re: ok, you may not like this
Post by assaultme on Aug 25th, 2007, 10:18pm
Redd:
Here we go again. You come here and help me out with information. I don't know what to say !!!!!!!!!
Of course, thank you very much. I am impressed with what you have done about the job thing. That is awesome how you went from almost nothing to holding a position of great responsibility !!!
In the beginning, I was a paranoid panicky blob of worthlessness. Members here like yourself educated me and today my positive attitude I attribute 100% to y'all.
Cause if you read my first post, I thought I was smoked. No chance for any control. My crew and employer would be so disappointed in what I thought (at that time) was inevitable. About the come & go thing. I am seeing that I need to stay and learn because there is so much more to this than I anticipated. I visit several other boards from time to time. Sure, many will educate you with the express  intent to ingratiate themselves. People here just keep slammin' me with great info. and do it for no other reason than their interest to help.
I can't say I have any real "feelings" about CH. I only want my objective to be realized. Members here told me to buck-up and it is possible. Man !!! What a relief. I can't thank y'all enough.
Cheers, Dave

Title: Re: ok, you may not like this
Post by purpleydog on Aug 25th, 2007, 10:29pm
Dave,
Don't be surprised by hearing conflicting treatments from different docs when it comes to CH. Just about everyone here knows WAY more about our condition than most docs, including neurologists. That's another reason to read up here, and print out stuff to take to your doc.

As far as the O2, most docs won't prescribe you 15 lpm, and depending on your insurance, it may be cheaper, and easier to get a welders tank, and fit it with the correct regulator. There is no difference between welders O2, and "medical" O2. Just make sure to get a bubbler (a small container of water the O2 flows through before you breathe it), so you don't dry out your lungs. I have one in my living room.

Slamming caffeine helps, Red Bull, strong coffee, whatever floats yer teeth. The main thing, as has been said, is keeping a positive attitude. I know you've read up some, and have a plan of attack, the key is working with your doc, and making sure you are on the same page.

Also, I see Dr. Richard Lee, in Peoria, and he is up on CH. In fact, I've taught him some things, like splitting imitrex shots, and told him about zyprexa, which he hadn't heard of, but gave me a script for it. He's really pretty cool. However, you must have a referral, and it will take 6 months to get in to see him. The main thing is that he listens... and is willing to learn. I've been seeing him for years.

So.... anyway, welcome to your new home here. I'm sorry you had to find us, but you have found THE most and BEST informed website on CH there is on the web. And, keep asking questions, it's the only way to learn.

By the way, we live in Lincoln, and I go to Decatur a few times a month, usually on an emergency trip for work. I work inside that big electrical plant, for an industrial supply company, of which there is one in Decatur.



And Rolo, this guy is not a troll. Your troll meter is way off. Dave is just being the direct person I suspect he is. Lighten up, wouldja?

Chris

Title: Re: ok, you may not like this
Post by assaultme on Aug 25th, 2007, 11:04pm
Chris, you're a peach :) Check your P.M.
Dave

Title: Re: ok, you may not like this
Post by MR_FLOOR on Aug 25th, 2007, 11:15pm

on 08/25/07 at 11:05:39, rolo65 wrote:
This guy is too hard headed and obtuse for me to waste my time on. He goes on my troll list!



At first I would have agreed with you Rolland,but I think Dave has done a complete 180 since his first post.At first I think it was the frustration talking.Actually I impressed with Daves new attitude he has really changed his hard nose approach and started taking in all the advise he has been given. Good for you Dave and good luck with your new ammo to take to your doc.



Dave  

Title: Re: ok, you may not like this
Post by assaultme on Aug 25th, 2007, 11:16pm
Chris and those who have told me about the O2 thing. Thanks!! I was at first very hesitant to disobey the Doctors orders. Surely you can understand. It, to me, would be like changing my pill regiment just cause someone on the web told me to. I don't know anything about medical stuff, but that would seem very irresponsible.
However, I am now convinced that it is no big deal. Jonny converts these things and it works. I do not understand how much actual oxygen is supposed to be inhaled. That is to say I wouldn't think it would be 100% and no outside air. But if I can't get the Doc to get me a rig, I'll be asking here how to go about it. ! Viola ! another hurdle I didn't rack myself on :)
Dave

Title: Re: ok, you may not like this
Post by assaultme on Aug 25th, 2007, 11:25pm
Thanks Floor. I just say what I think. Fire back if necessary. Nobody cries, nobodies little red wagon gets broken, noone get their feelings hurt.
It's all good. Have a mis-understanding and make accusations without first meeting ones responsibility of clarifying, I'll take one to task. I too figured out I was not a troll when I realized that you cannot profess  to know how much TV is being watched by others when the only information given was that one TV programme was being watched and without the benefit of frequency. Suggesting another is obtuse with only the criteria available of a single subject as well was an interesting extrapolation. This is tantamount to having a magical ability to know the angle of a hypotenuse side of an "obtuse"  triangle when one only has the adjacent side length and nothing more. I.E. it aint possible. But heck, none of us are perfect...especially me ;)
Cheers, Dave

Title: Re: ok, you may not like this
Post by MR_FLOOR on Aug 25th, 2007, 11:34pm

on 08/25/07 at 23:25:51, assaultme wrote:
Thanks Floor.



No thanks necessary bud.I calls em as I sees em.





Dave

Title: Re: ok, you may not like this
Post by purpleydog on Aug 25th, 2007, 11:37pm

on 08/25/07 at 23:16:03, assaultme wrote:
 I was at first very hesitant to disobey the Doctors orders. Surely you can understand. It, to me, would be like changing my pill regiment just cause someone on the web told me to. I don't know anything about medical stuff, but that would seem very irresponsible.
Dave


Dave, you've hit on a very good point here. We are not doctors here, and we can only impart our experiences to you. But one thing. ALWAYS check with your doc before changing the dosage of your meds, or changing your meds, because you heard online it would work better/ different, or someone told you to. This is very important. Some herbs interact with meds, so let the doc know if you are using anything like melatonin for sleep, or kudzu (see the med board), or even using the energy drinks, due to the taurine.

We want to help you, but we want you safe too.

Title: Re: ok, you may not like this
Post by assaultme on Aug 25th, 2007, 11:39pm
BTW, it may be off topic, but I would really like to help anyone here with any mechanical problems they may have.
Got a car or bike giving you a cluster headache? I have a bunch of info. and connections at my disposal.
It is the least I can do.
Dave

Title: Re: ok, you may not like this
Post by assaultme on Aug 25th, 2007, 11:46pm
You bet Chris. I know it may be frustrating for members to try to help and someone who won't just take it without checking with the Doctor. These things are too technical for a monkey wrench to just start playing with. But don't think it isn't being put on my list of things to do. If I give you bad mechanical advise and you poke a hole in your tyre, you can slap me on the back of the head and make me buy you a new one. If I poke a hole in my head, what little brain I have left will leak out. Brain cells are not available at Firestone
[smiley=laugh.gif]
Dave
BTW, that is my Tama drum kit on my avatar. Hope you like them. They sound like a million bucks. Now, if I could just do the same ;)



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