If you are a CHILD of a parent who suffers from Cluster headaches! ...YOU ARE A SUPPORTER! and YOU ARE NOT ALONE!

There is nothing more REAL and FRIGHTENING than to see your parent in extreme pain, (You've seen them happy, laughing and blissful).  CH sufferers are experiencing an unimaginable type of pain that requires the three C's.  Although it may be a scary experience for you and you may feel helpless,  there are a number of wonderful, imaginative, practical and relaxing things YOU can do for your parent, before, during and after an attack or cycle!  These suggestions can keep you busy, informed and feeling less helpless! Not to mention how appreciative your parent will be!
Be Caring, Creative and Calming!  the three C's (ccc) = LOVE ...Support naturally follows from that!  Here are some basic supportive suggestions & guidelines that will help support your parent/s in the time to come!

BEFORE:
•  Minimalizing Stress:  Help plan and accomplish evening chores, dinner, or other "routines" that your parent might feel "stressed-out" about, (regardless of CH).  (It is OK to take a little bit of the burden away from your parent and it will teach you about responsibility while feeling great about yourself!!)
•  Outings/vacation:  Plan an event with another sibling and your parent!  Take a weekend or two out of the month and plan a day doing something different and special with your parent, (other than the usual soccer practice, band rehearsals ,etc..)  Think of it as a means to get your parent from feeling like they're having to do "the same thing every week-end"!  It's bad enough they call 'the demon' or 'monster' a routine for them, so it's great to be thinking of doing different things FOR THEM.

DURING AN ATTACK:   This is a tricky time, because you may not know what pain level your parent might be at and communication will be difficult!  Be patient and fearless with your parent!
• Ask them what pain level they're at, if possible!  refer to the kip scale: 1-10 (Not only will you know, but it will give them a chance to share with you in a realistic manner and/or let you know what they may need).
• Give them SPACE, but make sure they're SAFE!!
• PROTECTING YOUR PARENT IN PUBLIC:  STAND WITH THEM (surround them if possible).  Guide them 'away' to whatever seems safe and private...  A bathroom or just to the car, for example.  Keep your parent away from loud noises and crowds during an attack.  When in public, remember to remain CALM, CARING and CREATIVE.  Be ready to explain to anyone that: your parent has a rare condition called Cluster-headaches, that they're not under any kind of influence and thank them for their concern.  If they persist, ask them to bring you some water!
• Water, water, water!!   (Not a gallon, though!!)
• Make coffee or just look around the corner..."there's got to be a Starbucks on the next corner".  Coffee is a stimulant that gets the nerves and blood going (If you're NOT old enough, ASK someone for help!)  ...(add a little cinnamon.  Cinnamon is known to awaken the senses and cheer emotional distress!)

AFTER AN ATTACK:  Your parent is exhausted and fatigued.  It relaxation time!
• Learn how to give a basic message.  The Neck (especially at the base of the skull/neck (On both sides of the spine are two great pressure points where  the skull meets the neck), shoulders, temples and, believe it or not, the forehead.
• Scent: Essential Oils 101: The simplest, most relaxing scent, is Lavendar Oil (Lavandula augustifloia) (Organic Augustifolia is best).  Lavendar is not only a relaxing and calming scent, but has 100's of other properties that are beneficial. Lavendar oil comes from a flowering shrub, so...
(CAUTION:  CHECK WITH YOUR PARENT BEFORE USING!! SOME PEOPLE ARE ALLERGIC TO SCENTS, SUCH AS ANYTHING THAT COMES FROM A FLOWER!!)
IF they approve, you can also message a drop of oil on the temples/forehead and is known to relieve "SOME" headaches, stress, anxiety and calms agitation!  (Pure essential oils are highly concentrated and with the exception of some oils, like lavendar, can be diluted! Try diluting with some olive oil or other carrier base oil, if necsessary).
Put 2 drops on their pillow before they go to bed!!  It works! (Dad's included)

• Make some Chamomile TEA just as they are getting ready for bed or especially after all that coffee!!!  Add some honey or lemon if they choose!

MOST IMPORTANT:  YOU ARE A SUPPOTER and YOU ARE NOT ALONE!  Where ever you may be, and with what you are learning, remember the three C's...caring, creative and calming!  With your strength and love, you can be a very postive force for your parent!
Supporter at Large!
- GI JOEY[glb][/glb]

what a great post, will get my kids to read it!!!

well done


mrs mac xxxxx

Linda has one terrific kid!  

Great post Joey.  I hope DJ will sticky this one.

(hint hint)

Pegg

Thanks, Joey, for your post.  

While I really can't endorse talking to your parent while they are having an attack, I'd really rather recommend to supporters that they talk with them when they're NOT getting hit and see what Mom or Dad need them to be doing during an attack.  

Also, please be careful introducing any aromatherapy to a clusterhead.  Many of these things can be a trigger for a clusterhead and, I'm sorry - I really hate to pick apart your post here, honest - but night time is the worst time for a clusterhead.  I'm not so sure putting a drop of lavender on a pillow slip is such a great idea.  I know we have to be REALLY careful with my hubby when  he's in cycle - absolutely NO perfume, aromatherapy, nail polish, nail polish remover, pretty much ANYTHING scented....will set him off every time.

Post-attack massage, coffee, space, helping out around the house - all good though, Joey!  

Here's something I wrote for kids a few years back as well on how to help their parents.  

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Again, thanks for the contribution - I've stickied it as suggested.  

Thank you Margi-
My mom mentioned to me to put a CAUTION up about the scent section.  I know that most colognes, perfume, nail polish, etc..have a high synthetic 'chemical' content to them and that it's no wonder why people have an 'allergic reaction' to them.  With CH sufferers, it's even more important to take caution.
Pure essential oils are not synthetic whatsoever, and although they may have their wonderful benefits, should still be cautious!
Thanks again, I appreciate the note!!
-GI JOEY

In 6 years that is one of the best and most beneficial posts I have ever read on this board.

Nice job Bud! Nice job.

wrote on Mar 28^th, 2006 at 2:20am:

• PROTECTING YOUR PARENT IN PUBLIC:  STAND WITH THEM (surround them if possible).  Guide them 'away' to whatever seems safe and private...  A bathroom or just to the car, for example.  Keep your parent away from loud noises and crowds during an attack.  When in public, remember to remain CALM, CARING and CREATIVE.  Be ready to explain to anyone that: your parent has a rare condition called Cluster-headaches, that they're not under any kind of influence and thank them for their concern.  If they persist, ask them to bring you some water!!    (Thanks Mom!)

WOW!  :o

And yet another reminder of how much this damn thing affects our kids. Beautifully done, thanks.

Guiseppi

Excellent post Joey - Don't know how I missed it before this time.

My 15 year old son has found it helpful to point his very close friends to both Artonio's and Clusterchuck's videos of them getting hit.  

Now those very good friends understand what my son lives with and most importantly WHY son's plans might change at the last minute.  They also know what's happening should dad get hit when son's friends are with him.

I have to agree with the aromatherapy caveats mentioned here, as well as adding cinnamon to the coffee.  While therapeutic, it might send my sufferer into another attack.

Great job of getting the kids involved and prepared to battle the beast who invades our lives!

Knowledge gives you power and the ability to meet whatever is thrown at you with confidence.

I'm gonna have my kids read this.  They are 13 & 14 and the hardest thing for them is the don't touch when I'm getting hit.  They both want to hold me to make it go away, and they always try when I'm at level 7-9 when I can't handle it.  I loved the post, it made me think that I need to put up the Kip scale for my kids to see until they get used to it more.....we are still learning after 12+ years this is by far the worst, and the only year where mine were not gone in 3 weeks and life was not back to normal.

Hi Jesbri,

My son wrote that and I'll be so happy if something he said here helps anyone.  He's had a long time to experience watching them and wanting to help somehow is the hardest lesson to get around.  

Maybe if you sat down with your kids and gave them something they COULD do:  ice pack, make a pot of coffee, etc.   They would feel like they're doing something.

Linda

I spoke with my son after my last bad one when all he wanted to do was hug me and massage my back while I was spiking.  He freaked out of me, and the whole time I'm trying to make it through the pain and comfort him.  After I came back to earth we sat and talked more about everything he was doing that was helping.  He made dinner that night and the next, and massaged my back after I was done spiking up from the pain.  It's hard enough that I have to have the attacks, but I'm not a good one in letting others take care of me....I'm the mom that's my job to take care of them..LOL

WOW Excellent Post Joey, wish I had that years ago for my children.

Thank you for this post. Although I have been a CH sufferer for 10 years, I was only properly diagnosed 2 years ago. I have hemiplegic migraine, and the two were not identified as separate issues for quite a while.

I have a wonderful 8 year old son who has grown up knowing that mom gets headaches and seems to just take it in stride. He has never seen me in the middle of a CH until this week. My husband was not home when it hit - in the past, he has be able to shield my son from seeing me go through these. Obviously, it is much different than a migraine and he was understandably frightened. I was wracked with guilt - which really didn't help matters much.

We talked about it and I told him some of the things he can do when this is going on, that although it hurts terribly, I am okay afterwards and that I am sorry he was frightened. True to his nature, he took it in stride.

Since then, he has been witness to 2 more attacks and has been a great help - I still can't bear that he has had to see me go through this.

I am so grateful to have found your post today. I had my son read it and he found it very helpful. Thank you for taking the time to put these ideas together in a way that kids can understand.

Carlyn