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Supporter Survival Tips
OK, by now, you know there is very little you can do to stop the pain of
cluster headaches for your loved one. That, in itself, is a very difficult
thing to come to grips with. No one likes to be defeated and we all go
through the ‘Super-Person’ complex trying to wage war against these
things. But, sometimes we have to face reality and make adjustments in our
lives to compensate for our own inability to fix this.
First of all, know this: whether you think you are helping or not, your
loved one notices that you are trying and that means the world to them. So
many cluster headache sufferers go through this alone and misunderstood,
that knowing that just one person understands really DOES help them.
Most important: TALK to your loved one when they are not having a headache
and make an ‘attack plan’. DO NOT ASK THEM QUESTIONS WHEN THEY ARE
GETTING ATTACKED!!! (That’s a real quick way to get your feeling hurt!) ASK them what they want you to be doing when they next get attacked.
Here are some suggestions of what to ask:
Ø Do they want you to sit with them?
Ø Does s/he want you to bring her a glass of ice water or an ice bag?
Ø Would s/he like you to rub his/her shoulders, just to try to help him/her to stay
calm?
Ø Does s/he prefer to be alone when s/he’s getting attacked? (Don’t be
insulted if this answer is ‘yes’.)
Ø Do you need to keep the house quiet, dimly lit, fresh air flowing?
Ø Would s/he be more comfortable in a room with a lower air temperature?
Ø Will they become angry with you if you refuse to give them MORE pills
because you know they’ve already exceeded the dosage? What should you
do, when they ask you this?
Ø Will they approve of you taking them to the hospital if you feel it’s
the only way to help? (Don’t be surprised if the answer to this one is
‘no’. Sometimes, by the time someone can be seen in an ER, the attack
will be gone and most cluster sufferers don’t like to be seen in
‘public’ when they are getting hit.)
So, what does a supporter DO while an attack is in progress? Here’s a
few tips.
First of all, don’t panic! Stay as calm as you can. Stay within earshot
if he/she wants to be alone. Do NOT be insulted if they ask you to leave.
Do NOT follow them, if they leave the room! If you start getting upset,
your loved one is going to be overwhelmed with guilt that they are scaring
you. If you are losing it and can’t deal with your emotions, remember
this: ALL ATTACKS END. S/He’s NOT going to die because of cluster
headaches. You WILL both survive this. BE STRONG. There really are no
rules as to how a cluster sufferer copes with their pain. If it helps them
to rock, pace, bang their heads, respect that. Just remember that NOTHING
they do is directed at you….you have NOT caused their pain and they
sometimes don’t realize their words or actions while under attack.
Sad to say, but this does happen: Your cluster sufferer may reach the end
of their rope and feel completely hopeless. They may threaten or attempt
suicide. This is a very real emergency, and please know that YOU can also
call your local suicide prevention center on their behalf. Cluster
headaches are sometimes referred to as ‘suicide headaches’ and some
folks do reach that point. There is also some excellent information on
this subject here:
http://www.ouch-us.org/crisis.htm Do the countdown: The average cluster attacks lasts no longer than 1.5
hours (sometimes less, sometimes more). Watch the clock. Time the attacks
so that you know what your sufferer’s average is. A cluster attack
quickly builds from a 0 – 7 on the Kip Scale, it may stay there for
awhile, but it can still go up to a 10 after a while. Like the old saying,
‘when you think it can’t get any worse, it usually will.’ Then you
will see it gradually decrease backwards down the scale until it drops off
to nothing. So, pay attention to these crescendos and ebbs, and watch the
clock. Tell yourself, ‘ok, s/he’s gone 15 minutes now, only 45 more to
go. Only 20 more minutes. 10 more minutes and it’s over.’ Your
sufferer may even benefit from you counting it down and telling them too
– ASK them ahead of time!!!
Stress Release is so important: Living with cluster headaches can be very
taxing, we all know that. But what do you do with all the emotions you
have to bury? They have to surface at some point. Physical exercise is one
of the best ways to blow off steam. Go for a workout. Go for a walk. Do sit-ups. Or, if you're not so inclined…go to a movie, go hang out at a
mall, go for coffee. But it’s VERY important that you make time for
yourself. Best time to do that is right after an attack. Your loved one is
probably going to be exhausted anyway, and hopefully, they can find some
precious sleep. So, take an hour off. Give yourself time to de-stress and
re-center yourself. If YOU fall apart, you won’t be any help!
How do you support your kids? One of the worst pains I’ve felt is
watching my daughter get so scared seeing the pain my husband has gone
through. Younger children see things very ‘black and white’. In their
eyes, someone that goes through THAT much pain, must surely be going to
die. And lots of cluster sufferers get angry during an attack. Children
don’t understand that the anger isn’t directed at them, or at YOU.
They also don’t understand the mood swings that result from the sleep
deprivation, and the fear that clusters bring the sufferer. It’s very
important to explain this to kids. Daddy’s not going to die. Mama’s
going to be ok. No, Auntie Susie’s not mad at you, Billy – she’s mad
at the pain. No, it’s no one’s fault. Reassure your kids, gang. Be
there for them too.
Do we need a Flak Jacket? Sure, there will be things said in anger and
frustration while in a cluster cycle. Yes, mood swings are common. No,
it’s NOT your fault. No, YOU can’t trigger an attack for her/him. Yes,
you WILL get your husband/ wife back once the attack is over. Yes, we all feel
lonely and very isolated that our husband/wife has been taken away from us.
Yes, we get pissed off at the Beast!!! Yes, we know of clusterheads out
there who have substance abuse problems. Yes, we cry too.
Educate yourself!! An excellent resource for information on treating and
living with cluster headaches is www.clusterheadaches.com. Read everything you can, take the time to go
through ALL the buttons on the left and follow the links there. Read
through the message boards as well. There are hundreds of years of
personal experience in the pages of the message boards.
Finally, but MOST importantly! TALK about your problems. That’s what
we’re here for. We are NOT professional counselors, but we are fellow
warriors and we completely understand what you’re going through. Nothing
you say will shock us, and no one is going to judge you for feeling fear,
anger, resentment, guilt, frustration, unworthiness, whatever. We’ve all
been there. So, when the walls start closing in on you, go to the
Supporters' Board at http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi
and tell your story. You can contact an OUCH Family Services Team
member via e-mail at familyservices@ouch-us.org
or by using the Question/Feedback link in the left menu. You can also use
the e-mail or Question link to set up a time to meet in the FST Chatroom if you
want to talk someone in real time. We are here to help in any way
we can, even if it's just to listen.
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