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MJ
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Opinion: What to do during an attack.
« on: Mar 19th, 2006, 2:16pm »
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Dear Supporter.
 
I am a cluster headache sufferer.
 
Often times the question comes up from the newly afflicted, as to what can I  do when someone is hit by a CH attack.
 
The following is what helps me when hit hard with a CH.
Any input would be appreciated I think by all.
 
Remember the pain is quite possibly the most intense pain known. But it is the pain we must suffer alone.
 
It is fully understood that you suffer as well.
 
No. 1# It will pass in due time. It will repeat.
 
It is important to control the situation around you a bit.
 
Light.
For me I do not wish to be in the dark, I do not wish to be in the light. If an attack begins in the dark however I need to stay in the dark. The same for the light.
 
It seems that a change in lighting during an attack has a tendency to cause a change in the pain. Like flipping on a light switch to check on me. ouch.  
 
Flashing or intense lighting are the worst.
 
The best is allways a softly lit room for me.
 
Sound.
Higher pitched sounds are allmost deadly and can for some actually set off a CH and this is one of the few things that cause me to lash out at those around me.
 
Sound levels are like the light issue above, it for me is a change in the level of sound. If music is on dont turn it off but keep at a respectable level. Same with a television.
 
I do not seek silence just normal sounds are often soothing. Do not change your life for me. Continue your conversations, If kids around do not holler to be quiet, ask them just to tone it down.
 
Solitude,
A sufferer will generally seek solitude while being hit, let it be. Remember we are fighting an epic battle in our heads with all the pain a demon can inflict and just as real.. Any interruption in our solitude can bring the pain to new and higher intensities.
The only thing to do at this point is to run interference to be sure that solitude is not compromised.
 
Agitation.
Many will pace, rock, run, scream, cuss, convulse on the floor etc.. It is how we battle or enter a trance to fight, dont worry. Keep the path open and unobstructed as we are in a deep meditative state.
 
Aides.
Those who use oxygen, medications, ice, heat, etc.. would appreciate an assist with the readiness, then leave me alone.
 
Checking.
If you suspect the attack is allmost over its ok to ask is it over or is it easing up. At no time ask me how do I feel.  
When its over I will either pass out or re-enter the world around me.  
I may even want to talk about it a bit. Its ok to listen and comment all you want at that time as we have just been victorious in a great battle. Expect great exhaustion, and sometimes great satisfaction in our conquests.  
Remember that another attack is imminent. Not knowing when and where has the potential to be overwhelming.
 
Drugs.
Though I personally dont use prescribed meds, know also the effects of medications and how they can create differences in some personalities. As a supporter you have a unique perspective, when being hit we only seek relief and sometimes miss the side effects.
 
Mindset in a cycle.
The CH you must remember will be all consuming in our thoughts.
If you can do not put life on hold in fact attempt to keep the norm as much as possible and allways know that individual attacks only last a few hours at most.  
Though exhaustion will be big try to bring us out in the world, socialize, dine out, walk in the sun, but avoid shopping due to odors in stores that affect many of us.
 
Once a sufferer understands that you have the best of  knowledge then a greater support will never be found.
A gentle touch and a knowing thought go a long, long way.
 
Understand that plans need be delayed and changed at times, that the hits will go away.  
For me I exist on less than a couple hours sleep sometimes for months on end and realize the effect this has on a persons productivity and sanity.
 
We are all different and we are very much the same.
 
Without you we would suffer more.
 
MJ
 
 
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MJ
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Re: Opinion: What to do during an attack.
« Reply #1 on: Mar 19th, 2006, 2:27pm »
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The above may be a selfish perspective.
 
We as sufferers have a tendency to overlook your needs and also need to know what it is that a supporter needs to help them get through our self centered world during times of our own pains.
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Re: Opinion: What to do during an attack.
« Reply #2 on: Mar 19th, 2006, 7:50pm »
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That was wonderful MJ.
 
The only thing I would add is this.
 
   When I ask you to please shoot me/stab me/ hit me with a hammer etc....don't.
 
 
 
Linda
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Re: Opinion: What to do during an attack.
« Reply #3 on: Mar 19th, 2006, 8:29pm »
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Thank you, MJ & Linda!
 
 
 
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Re: Opinion: What to do during an attack.
« Reply #4 on: Apr 5th, 2006, 1:36am »
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I would just add that one of the great things a supporter can do is help out with the meds ( imitrex etc) and helping with insurance, perscriptions, pharmacies etc.
I am a sufferer and always worry about how much I have for potential relief etc, especially with the cost and meager normal dosages insurance doles out for imitrex. Knowing that I have are am getting as much as I can ( stockpiling when possible) adds a little peace of mind ( no pun intended) for CH sufferers , at least in my opinion and expereince.
 
Lastly, if you really care about someone who is a CH sufferer, never downplay the pain involved or minimize what a person endures during an attack(s). My wife, for several years told me how I had such a low tolerance for pain and it was devastating-- see  'A Story from Mr. Cluster' topic in this / Supporters section to see how I describe it..
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Re: Opinion: What to do during an attack.
« Reply #5 on: Apr 5th, 2006, 12:12pm »
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WOW! This is great!  
Thank you, MJ, Linda,  and Ray!
Everything you have listed for supporters is awesome. I never know what to do for Jim as he never asks. He will answer my questions, but they are "yes" and "no".  Now, next time he has an attack, I will be more sensiitve to his situation, as you all have described.  I have done everything you say not to do!... other than Linda"s request:   Shocked
" When I ask you to please shoot me/stab me/ hit me with a hammer etc....don't"
 
Thank you so Much!!
Pain free prayers for you all!
Lizah
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Re: Opinion: What to do during an attack.
« Reply #6 on: Apr 6th, 2006, 1:48pm »
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Dear Lizha,
 
You are most welcome. I forgot to mnetion that if the energy drink- "Red Bull' works for your husband ( as for some , incl. me ,it can provide temporary relief or head off and attack) , then try to  have a supply on hand- It is a little pricey but you can get a case of it at most COSTCO stores and save some money.
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Re: Opinion: What to do during an attack.
« Reply #7 on: Apr 14th, 2006, 4:04am »
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To ALL supporters - thank you for supporting your local CH, and thank you for putting up with us!
 
Although we look / act totally incapacitated, we usually aren't, as MJ described it so well.  The only thing I'd bring to the table is...don't ask too many questions about how to help while your CH is in an attack.  They will probably be able to ask for this or that.  The reason we don't offer more is because we usually don't know exactly what to do ourselves and have this biting pain in the head that is consuming a lot (but not all) of our attention.  The other thing is, try to remember what your CH wanted the last time / few times he/she was in an episode.  My wife is very supportive, and usually carries extra meds in case I forget.
 
The one question I don't ever get annoyed of is, "Do you have a migraine?"  My answer to that lets my supporters know if my current attitude / demeanor is a CH episode or something else.  I realize my supporters don't always know.  I answer truthfully because I'm not looking for sympathy, just some understanding while I try to manage the attack.
 
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