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        Supporter's Corner >> Supporter's Corner >> Ask your sufferer how to help...make a written pln
        
(Message started by: kevinG on Mar 13th, 2004, 12:50pm)
Title: Ask your sufferer how to help...make a written pln
Post by kevinG on Mar 13th, 2004, 12:50pm
I hope this is not out of place or inappropriate, but my wife wants to help me and she does not know how...so I put together a list of "What to do when I have an attack" and I thought it might be helpful to post.

I think it would obviously have to be personalized for each sufferer...but it offers a start.

HOW TO BE HELPFUL TO A PERSON WITH A CLUSTER HEADACHE

1) Stay with the person

2) Make it as dark and quiet as possible.  Touching the person can even cause painful sensations.  Sounds as small as turning the pages in a magazine can be painful.  Whatever you can do to make the environment quiet and dark is best.  Because it is hard to answer, it is best to do this without asking about each form of stimulation…just do what you can to make this possible.

3) Get the oxygen and or imitrex medications.  Look at the expiration dates and make the medicine available to the sufferer.

4) Note the time the medicine is taken.  Every 5 minutes let the person know the total amount of time that has passed since the meds were taken.  

5) Random quick “pinches” somewhere on the body such as the hand or foot help to distract the mind from the pain.

6) Every 5 minutes ask the person their level of pain on a scale of 1 to 10.  This will help you judge the severity of the attack and if you need to take the person to the emergency room.  If the medication does not work after about 20 minutes and the pain is still towards the level of 10, then consider that the person needs to be in the emergency room.  You may have to make this decision, as the sufferer may not be able to use good judgment.

7)  Tell the emergency room staff that you have a person with an acute cluster headache (they will probably have to go look it up).  Morphine (including multiple shots) has not worked in the past…but a demerol shot has been successful.
Title: Re: Ask your sufferer how to help...make a written
Post by Margi on Mar 13th, 2004, 6:51pm
You're SO right, Kevin, in making a plan ahead of time for your supporter - good for you!!  We often struggle and feel extremely helpless - every one of you out there should sit down with your supporter and discuss this!!

Isn't it funny how everyone's so different, though?  The first thing my hubby wants is to be left alone.  Tough lesson to learn when a supporter's first instinct is to try to be there to help.
Light and sound don't make a difference to him.  Touching him is a no-no, unless he asks for a hug or a shoulder rub.  He gets his O2 mask on and we keep the trex and the ice bags ready at all times.

The only thing I can add to the list is for supporters to take the damn wrapping off the pain reliever bottles.  Mike often will take Advil Migraine just to take the edge off (not that it does much once the attack gets underway but if he can get to the O2 quick enough, sometimes he can avoid the imitrex).  Trying to struggle with a new bottle of pills with all their child safety and tamper proof wrap, however is the LAST thing a clusterhead under attack wants to do, though!!  It's just habit for me now, when I bring home a new bottle of pills.  Break the seal, take off the foil cover, and remove that stupid cotton!  

Thanks so much, Kevin!!  Sufferers take note and help your supporter help you!!
Title: Re: Ask your sufferer how to help...make a written
Post by Jackie on Mar 13th, 2004, 7:14pm
Communication between sufferer and supporter is very important.  It's nice to see that you and your wife have worked out a plan that helps you.

As you mentioned each plan needs to be personalized.  What each clusterheads needs is as individual as the attacks themselves....no two are alike.  Close sometimes but never exactly the same.  Meeting the wants and needs of the sufferer is different.

Having a plan in place is a very good idea.

Jacks 8)
Title: Re: Ask your sufferer how to help...make a written
Post by Woobie on Mar 17th, 2004, 2:54am
http://www.marlo.com/an/gen/acartoon/ab-lolli.gif

bump  ;;D
Title: Re: Ask your sufferer how to help...make a written
Post by bucky0w on Mar 17th, 2004, 4:12am
I've never gone to an emergency room; was actually turned away the other night. But as far as adding to your list goes I'd say this:

  'watch me.' It's too often overlooked how we hurt ourselves in this pain.
Title: Re: Ask your sufferer how to help...make a written
Post by t_h_b on Mar 17th, 2004, 6:10am

on 03/13/04 at 12:50:56, kevinG wrote:
I hope this is not out of place or inappropriate, but my wife wants to help me and she does not know how...so I put together a list of "What to do when I have an attack" and I thought it might be helpful to post.

I think it would obviously have to be personalized for each sufferer...but it offers a start.

HOW TO BE HELPFUL TO A PERSON WITH A CLUSTER HEADACHE

1) Stay with the person

2) Make it as dark and quiet as possible.  Touching the person can even cause painful sensations.  Sounds as small as turning the pages in a magazine can be painful.  Whatever you can do to make the environment quiet and dark is best.  Because it is hard to answer, it is best to do this without asking about each form of stimulation…just do what you can to make this possible.

3) Get the oxygen and or imitrex medications.  Look at the expiration dates and make the medicine available to the sufferer.

4) Note the time the medicine is taken.  Every 5 minutes let the person know the total amount of time that has passed since the meds were taken.  

5) Random quick “pinches” somewhere on the body such as the hand or foot help to distract the mind from the pain.

6) Every 5 minutes ask the person their level of pain on a scale of 1 to 10.  This will help you judge the severity of the attack and if you need to take the person to the emergency room.  If the medication does not work after about 20 minutes and the pain is still towards the level of 10, then consider that the person needs to be in the emergency room.  You may have to make this decision, as the sufferer may not be able to use good judgment.

7)  Tell the emergency room staff that you have a person with an acute cluster headache (they will probably have to go look it up).  Morphine (including multiple shots) has not worked in the past…but a demerol shot has been successful.


Wow.  If somebody hovered around me pinching me randomly and asking me to rate my pain every five minutes during an attack I might get violent with them.

Here's my list:

1.  Draw up my Imitrex while I'm squirting the lidocaine.

2.  Get my ice pack while I'm injecting the Imitrex.

3.  Scram, or let me scram.

4.  Leave me the hell alone and don't f*ck with me while I'm having one of these damned things.  I don't need to know about the tornado in the back yard or that my mother is on the phone.  You already know there's nothing you can do and it's not your fault.  I'll be okay when it's over.

5.  Once it's over you can be sympathetic and helpful all you want.
Title: Re: Ask your sufferer how to help...make a written
Post by Superpain on Mar 24th, 2004, 3:57pm
Hehehe...
I'm with THB on this one.
I don't have imitrex or any other meds except for O2, so I have a pretty short list.

I'd have to reduce it to

3.  Scram, or let me scram.

4.  Leave me the hell alone and don't f*ck with me while I'm having one of these damned things.  I don't need to know about the tornado in the back yard or that my mother is on the phone.  You already know there's nothing you can do and it's not your fault.  I'll be okay when it's over.

5.  Once it's over you can be sympathetic and helpful all you want.


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