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Topic: Are you making your clusters worst? (Read 885 times) |
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Elaine
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Are you making your clusters worst?
« on: Oct 2nd, 2003, 11:28am » |
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At the convention I learned if you had a migraine you should lay down. The doctors say that if you don't lie down they will get worst.
We all know with a cluster lieing down is impossiable. But I see more and more people who have clusters and shadows on their computer and doing things that cause them to have to think and use their minds and in doing so they are sitting.
When I have a cluster or a shadow, thinking is the last thing I want to do. I am lucky to think enough to get to my meds. I got to keep moving rocking or walking. Even with a hard shadow I start moving and walking it off.
I have been where I was in a position where I had to think durning one and that seem to make it worst!
Could it be by trying to devert your mind you are actually causeing more problems?
Just a thought!
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ckelly181
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Re: Are you making your clusters worst?
« Reply #1 on: Oct 2nd, 2003, 11:33am » |
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Holy cows - this was like a "duh!" to me.
Just a bit ago, I got hit at work here. I was able to get another teacher to take my class while I huffed on O2 in my office. I sat at my computer screen reading some posts and the pain kept getting worse. I stopped reading, closed my eyes and it started to dissipate...I'll just bet you that's what was happening!!
Argh. Can't lie down, can't stop moving, can't engage the brain...HATE this stuff....
But, thanks for the insight!
Chris
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don
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Re: Are you making your clusters worst?
« Reply #2 on: Oct 2nd, 2003, 11:38am » |
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I agree Elaine.
When I'm getting hit I have to put 100% focus on dealing with the pain.
If I dont then the duration of the attack is increased.
How the hell (Or why for that matter) could anyone under attack want to work at the computer anyhoot?
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Hirvimaki
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Re: Are you making your clusters worst?
« Reply #3 on: Oct 2nd, 2003, 12:28pm » |
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I work in front of a computer 9 hours a day (I'm a graphic designer and that's what I do) and then go home to sit in front of the computer for several more hours to catch-up on other stuff. It's not a "want" when I am suffering an attack. I don't even "want" to be alive when it is a bad one, but I don't like to let the beast rule my life, either. When I get attacked it is a whole day affair... Often I wake up at two or three in the morning and cannot sleep. The attacks will continue for a day or two days, with very little respite in between HA's. If it were a matter of these things letting go after just an hour or two, maybe I would not punish myself so much, but I've got a life to live (I'm curently at work with a cluster that started at 3 this morning...) and I'm gonna live it.
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Ree
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Re: Are you making your clusters worst?
« Reply #4 on: Oct 2nd, 2003, 12:30pm » |
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yes............treat those shadows... it'll give you more pain free time......... no sitting when you got the Beast on ya back................ree
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Margi
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Re: Are you making your clusters worst?
« Reply #5 on: Oct 2nd, 2003, 1:21pm » |
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on Oct 2nd, 2003, 12:28pm, Hirvimaki wrote:| When I get attacked it is a whole day affair... Often I wake up at two or three in the morning and cannot sleep. The attacks will continue for a day or two days, with very little respite in between HA's. ...(I'm curently at work with a cluster that started at 3 this morning...) |
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 I'll probably get beat up for this, but, here goes.....
I realize you say that you get little respite between attacks, but is it basically one long headache for two or three days, that just ebbs and spikes in pain levels? Are you being treated with meds for cluster headaches? What you're describing here really isn't typical for what most sufferers go through. Sitting at a computer and posting during an attack is impossible for most clusterheads that I know.
I'm not trying to be sarcastic or trying to ostracize you from this group, but it's very dangerous to use cluster meds if you've been misdiagnosed. Have you taken the cluster quiz and read the cluster traits button to the left?
OK, fire away. But I had to ask.
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| « Last Edit: Oct 2nd, 2003, 1:22pm by Margi » |
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BarbaraD
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Re: Are you making your clusters worst?
« Reply #6 on: Oct 2nd, 2003, 1:31pm » |
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Ok, here goes back -- when I get hit - I HAVE to find a focus on something other than my head... I turn on the TV and try to focus.... I hit the O2 and coffee while trying to focus on the TV (I really hate TV,but any old port in a storm)....
Then (when I do take the meds) after something starts to work and the pain lessens and I settle down a little I still have to focus on something so I hit the computer (going back to bed is NOT an option at this point.) As long as I keep busy doing something that requires "thought" of some kind I can get through it, but if I don't concentrate on something, they seem to hit back to back....
Of course I've always been a little strange (imagine that with Clusters!!!) But again, it makes me so angry to give in to something I can't control that maybe I "overcompensate".
When I can't think enough to "work" on the computer, I play solitare. Don't win a lot when I can't see the cards, but it gives me a focus. That's usually after I finish beating my head and am too exhausted to do much else.
I think everyone has their own way of dealing with the beast.....
Hugs BD
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ksmiggy
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Re: Are you making your clusters worst?
« Reply #7 on: Oct 2nd, 2003, 2:20pm » |
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on Oct 2nd, 2003, 1:21pm, Margi wrote:
What you're describing here really isn't typical for what most sufferers go through. Sitting at a computer and posting during an attack is impossible for most clusterheads that I know.
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I do not know how you can use the word "typical" when refering to cluster headaches, reading the post on here, people have so many differences with attacks, there are only a few traits common to us all, i like to sit in front of a fan, cooling me down, others like to apply heat, ( I still cringe at the thought) , towards the end of an attack, i find a cigarette helps, but not till the time is right, we all deal with the headaches in different way's, what some can handle , others can't, I am sure what is annoying to us all, is people asking if it really is cluster headaches, i am sure no-one comes here out of boredom, people are here for support, not to be dismissed as not suffering, enough of that goes on in the real world, a lot of people on here are too willing to dismiss peoples suffering as something else, just because it is not exactly the same as their's, enough now, starting to preach.
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Hirvimaki
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Re: Are you making your clusters worst?
« Reply #8 on: Oct 2nd, 2003, 2:27pm » |
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BD, AMEN... I have to focus. If I don't, I would go farking crazy.
"...it makes me so angry to give in to something I can't control that maybe I "overcompensate."
I could not have said it better (and I certainly did not) myself.
And to answer Margi, no, I won't beat you up over it. But yes, I do have CH. Of that I am certain. It took me years to find that out, and finally a great doctor. And no, it is not one long big headache. I appreciate your concern, I know that's where the comments were directed. 
I have come to realise in reading posts on this site, that there is no such thing as "typical".
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Hirvimaki
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Re: Are you making your clusters worst?
« Reply #9 on: Oct 2nd, 2003, 2:28pm » |
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Ksmiggy,
Thank you.
Hirvimaki
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cathy
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Re: Are you making your clusters worst?
« Reply #10 on: Oct 2nd, 2003, 2:31pm » |
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Actually Ksmiggy not taking sides here but I think what Margi is saying is that IF Hirvimaki has been misdiagnosed then he should be made aware...usually Ch doesn't last for 2 to 3 days at a stretch...without a break....
Cathy
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| « Last Edit: Oct 2nd, 2003, 2:31pm by cathy » |
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Margi
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Re: Are you making your clusters worst?
« Reply #11 on: Oct 2nd, 2003, 2:34pm » |
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Yep, I knew there'd be flak over my post....
My POINT in questioning "abnormalities" from the definition as we know it is this (as I said in my original post):
"I'm not trying to be sarcastic or trying to ostracize you from this group, but it's very dangerous to use cluster meds if you've been misdiagnosed. Have you taken the cluster quiz and read the cluster traits button to the left?"
Cluster headaches IS a very rare disease and we've had this argument here (ad nauseum) about how the traits ARE specific and common. We've seen a lot of people come here who have been diagnosed by doctors who may be using clusters as a catch-all for otherwise unidentifiable head pain. As a group, we've urged those who don't fit inside that box to get a second opinion and have been told a few times that there WAS another underlying medical condition going on that needed urgent attention.
I'm not trying to be a smart-ass, or a "clique" member...NOR am I trying to "dismiss anyone's pain"!!My concern for the misdiagnosed IS very genuine.
p.s. Hirvimaki, you and I were posting at the same time. I'm glad you took my original post the right way.
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| « Last Edit: Oct 2nd, 2003, 2:40pm by Margi » |
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Leesa
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Re: Are you making your clusters worst?
« Reply #12 on: Oct 2nd, 2003, 2:49pm » |
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As for Dave when he gets hit the puter is a BIG NO NO or anything eles for that matter. Thinking is the last thing he wants to do. Even the shadows are hard for him to deal with, but he does due to work. If he doesnt work bills dont get paid and stuff gets cut off. But when the beast comes full force forget it all. His boss is great, anytime hes been hit while at work they tell him go get the trex, ice packs, and get on the O2. It helps that we live right here where he works too. Dave has migraines too! His migraines 9 chances outta 10 go in to a CH. But we deal with the whole ball o' wax!
Leesa that hates the beast with a purple passion
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ClusterChuck
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Re: Are you making your clusters worst?
« Reply #13 on: Oct 2nd, 2003, 2:50pm » |
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Quote:| i am sure no-one comes here out of boredom, people are here for support, not to be dismissed as not suffering, enough of that goes on in the real world, a lot of people on here are too willing to dismiss peoples suffering as something else, just because it is not exactly the same as their's, enough now, |
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Ksmiggy, I read Margi's post totally different than you did. I saw real concern from a person that only wanted the best for Hirvimaki. The comment about it lasting for 2 to 3 days is NOT normal for CH. She was just trying to get that comment clarified, and if it is a steady 3 day headache, then there may have been some other problem there. I did not read it that she was trying to dismiss his pain or his problem. I don't think Margi would do that.
Hirvimaki, I am glad that you have been properly diagnosed, but sorry it is CH that they came up with.
I am like many of you, I MUST do something to divert my attenetion from the beast. I cannot read or post or any of that, but while I am pacing and head banging, I am trying to direct my thoughts to something, ANYTHING, other than the god awful pain in my head.
Chuck
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Melissa
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Re: Are you making your clusters worst?
« Reply #14 on: Oct 2nd, 2003, 3:03pm » |
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When I am getting hit, the pain is in control of me until my trex kicks in. Whether I am rocking, pacing, hitting my head with my fist, or writhing on the floor, I have only enough focus to use a nasal spray or take an injection. The pain does a real good job taking away any more focus I may have.
mel
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Elaine
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Re: Are you making your clusters worst?
« Reply #15 on: Oct 2nd, 2003, 3:23pm » |
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The whole thought behind my post wasn't weather you had clusters or not! (But I do agree with Margi)!
The thought is are you making them wost by doing these things? I for one if you know me know you have to go on with life. My idea of going on with life is in less pain, and less attacks. If I make my attacks worst by being on a computer (witch I couldn't do to start with) I would not do it! The computer and things like that means you have to THINK! The main reason I don't want people around me when I get hit, is I don't want to think about anything. If someone is there, they are going to touch me, they are going to ask questions ect...and I have to think how to answer them, how not to be mean to them when they are just wanting to help.
People are different in how they react to pain yes. Clusters are not different! I refuse to let clusters run my life. If I am doing something that makes them worst, then I am letting the cluster run my life.
Its like ice and heat...I use to think heat helped and fought people who told me to use ice. I finally use ice. Then I compared the two. I was making things worst by using the heat. I would fight to the deaths someone trying to apply heat now.
My question is are people making it worst, not weather you have clusters or not!
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Margi
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Re: Are you making your clusters worst?
« Reply #16 on: Oct 2nd, 2003, 3:37pm » |
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Sorry I got this thread sidetracked, E....you're absolutely right though. And the ice/heat thing is a perfect example.
I think we've all done things that, at the time, seemed like a good idea. Later we found out that THAT tactic was actually making the clusters worse.
Like the time I got Mike to shove mustard powder up his nose  ......well? In the late 80's, we thought it was sinusitis and I had read somewhere that it would help with that.
But...back to your point - if it makes you hurt MORE, stop doing it!!
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Bob P
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Re: Are you making your clusters worst?
« Reply #17 on: Oct 2nd, 2003, 3:45pm » |
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Aw hell! If you don't have the same symptoms as me, you don't have clusters.
Watch Margi, she's just a meegrainer looking for recruits! (I know because everyone knows women don't get clsuters).
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| « Last Edit: Oct 2nd, 2003, 3:46pm by Bob P » |
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Margi
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Re: Are you making your clusters worst?
« Reply #18 on: Oct 2nd, 2003, 3:47pm » |
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Psst....hey, Bob.....c'mere. I think I've got a lil of that mustard powder left.
Nice edit, BTW, you almost forgot to put that in, didn't you!
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Hirvimaki
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Re: Are you making your clusters worst?
« Reply #19 on: Oct 2nd, 2003, 3:54pm » |
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If I contributed to the general off-topic-ness, I apologize.
I agree with you in that if it worsens your condition, stop doing it. The classic: It hurts when I do this. Then don't do that.
My point was (and is) that, in my case, I have to do something. I have always been this way, even as a child. When I was sick with the flu I had to keep busy, regardless of how miserable I was. I have to keep doing something, otherwise I really do, quite literally, go crazy.
And a crazy Hirvimaki is not a fun fellow to be around!
I certainly get hit with HA's that basically makes focusing on any anything, especially somethig as visually unfriendly as a computer monitor, impossible, but those are more the exception than the rule.
To further answer your question, it does not seem, in my personal observation, to make the HA's any worse nor any better to sit at my computer and do my thing.
Now air blowing on my face is another matter. Fortunately my job does not involve this!
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catlind
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Re: Are you making your clusters worst?
« Reply #20 on: Oct 2nd, 2003, 3:55pm » |
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Yes, it is very frustrating when someone suggests that CH is not real for a sufferer. However, we have had folks come in here without a proper diagnosis - meaning they haven't yet been to a neuro etc. - and it would be irresponsible for someone experienced with CH not to ensure that person doesn't stop here and decide that's the cause. We have also had folks here who have been diagnosed by doctors as having CH, and then in the end, have had it not be so...one even had a brain tumor.
As you can see, it is in no way meant to demean, degrade, or lessen anyone's pain. It's out of genuine concern that folks get a proper diagnosis. Once you know what you are dealing with you can ensure your own health by taking measures against that.
Of the many people around this board, Margi is one who will always double check with people when she sees something that does not fit in with the typical CH mold. That does not mean that there are not abberations to that mold.
It's so hard to use black squiggles on a screen to convey the concern and caring behind questioning when you are posting here. Our main concern is that no one goes undiagnosed for any condition. We all know too well what it's like to be un/misdiagnosed for clusters
Cat
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BobG
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Re: Are you making your clusters worst?
« Reply #21 on: Oct 2nd, 2003, 3:55pm » |
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Hey Bob...clsuters?
Is that a woman claiming to have clusters when she means migraines?
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Hirvimaki
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Re: Are you making your clusters worst?
« Reply #22 on: Oct 2nd, 2003, 3:58pm » |
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Just so that it is quite clear, I took no offense to Margi's questions. I appreciate all the concern I, and others, recieve from this family.
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"What makes us discontented with our condition is the absurdly exaggerated idea we have of the happiness of others."
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cootie
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Re: Are you making your clusters worst?
« Reply #23 on: Oct 2nd, 2003, 4:12pm » |
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Um where were we........ahhhhh yes.......you guys.....Brad will NOT git off the couch when he gets hit......I can't really tell him any different and they do get worse for him and he gets rather....'hard ta be around' so I 'make like a banana and split' the area after leavin his meds ect set out near by. Hey it's his call.....I am tired of an arguement over it......and I have learned alot on here and tryin ta get it all "out to him". He freaks and wants the room dark and quiet and 'tunes out'.....I've tried ta tell him ta keep busy maybe and am hopein he gets ta meet more ch'rs soon to discuss suma that so he has a different insight next cycle. Not sure he really got to disuss that with anyone in NY. He's easily influenced. Dam it's hard bein a supporter sumtimes Pam
dam it....I am gettin a ha (not ch) and here I am......sheesh......fatal CH screen attraction maybe ? 
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Bob P
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Re: Are you making your clusters worst?
« Reply #24 on: Oct 2nd, 2003, 4:22pm » |
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I just get so emotional when I type it that my fingers get all fripply. Must be getting too much in touch with my feminine side or my inner child or my therapist.
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| « Last Edit: Oct 2nd, 2003, 4:22pm by Bob P » |
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