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 with which to come to grips. No one likes to be defeated and we all go through the ‘Super-Supporter’ complex trying to wage war against this disorder.  We have to face reality and make adjustments in our lives to compensate for our own inability to mitigate the pain.

Whether you think you are helping or not, your loved one notices that you are trying and that means the world to him or her.. So many cluster headache sufferers go through this alone.  Knowing that just one person understands really DOES help them.

This point cannot be stressed often enough:   TALK to your loved one when they are NOT having a headache and create an ‘attack plan’ together. DO NOT ASK THEM THESE QUESTIONS WHEN THEY ARE GETTING ATTACKED.  (That’s a real quick way to get your feeling hurt!)  ASK them what they want you to do when they next get attacked. Here are some suggestions of what to ask:

• Do they want you to sit with them? 
• Do you want a glass of water/icepack/hot coffee/energy drink?
• Do they want you to get the Oxygen ready for them?
• Do you want the kids (if applicable) to be quiet?
• Would s/he like you to rub his/her shoulders, just to try to help him/her to stay calm? 
• Does s/he prefer to be alone when s/he’s getting attacked? (Don’t be insulted if this answer is ‘yes’.)
• Do you need to keep the house quiet, dimly lit, fresh air flowing?
• Would s/he be more comfortable in a room with a lower air temperature? 
• Will  s/he become angry with you if you refuse to give them MORE pills because you know s/he has already exceeded the dosage? What should you do, when they ask you this?
• 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, get online and talk to a friend or other supporter.  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. 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.  Aunt Susie’s not mad at you,  – she’s mad at the pain. No, it’s no one’s fault. Reassure your kids, and have the sufferer reassure them when they are NOT under attack.  Your children can grow into empathetic, caring individuals by being exposed to, no matter how little, the sufferer's pain.  They don't have to be immersed in it, but being aware of it  can make them feel more empowered to help.

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  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 links on the family services page 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.  

We are here to help in any way we can, even if it's just to listen.