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For support/partners of CH survivors


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Hi there,

I'm the girlfriend of someone suffering from cluster headache and chronic SUNCT syndrome.  I wanted to check in with the people in the sufferer's life to see how you're getting on, how you provide support to both your partner and yourself? 


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Hi Grrl!

We have several members who are 'supporters'. It is hard. You want to help so much, but you usually can't help at all. And watching your loved one suffer is awful. I am glad that you realize that you need some support to.

Just so you know, we love our supporters and the supporters who show up here for their loved one.:wub: 

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Supporter here.  What spiny said.  Best support I can give is to keep up here so I know what's most important, and any tricks that just might help.  So you read about people who put their feet in a very hot bathtub of water to help abort attacks.  A guy who used lime juice, baking soda, and water during attacks and thought it helped . . . Sleeping more upright . . .  Lots of little things to try.  Splitting Imitrex doses was a big one.  D3 is a very big one. Benadryl.  Ginger tea for shadows.  Demand valve/high-flow oxygen.  Energy shots.  Melatonin.  BUSTING.  More verapamil than doctors usually prescribe. . . .

I have seen, and read plenty about, how people with CH can get pretty despairing after they have tried things (usually pharmaceutical things) that they hoped would work, but didn't.  Supporters can sometimes make a big difference by taking things into their own hands and having them available, because you never know what might be a major difference-maker.  I had to fight the person I support in order to get oxygen for her, and I had to figure out how to get it when her idiot doctor wouldn't prescribe it (welding O2).  But having it has made a huge difference.

I have no real advice about taking care of yourself. Again, I find that learning here helps me feel like I can be useful.  I have definitely learned to stay completely out of the way during an attack, unless I am asked for something.  Hiding attacks is a common pattern among people with CH -- often they don't want to be seen in that state.  So I go away and "suffer" my own sadness, knowing that what I am suffering is nothing at all by comparison.

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Just the presence of a supporter does help a lot! To me, small things a support could do are so much appreciated, valuable.

Grrl77 you could help by knowing the techniques used by your partner/this site as there are plenty and procedures well documented and quite extensive. Just to be sure no important information gets lost. Busting for example has a very specific procedure where timing is essential. Sometimes it is hard for a cluster head to follow the instructions point after point (slapback headache, ch becoming even more severe but less frequent may force somebody to resist...)

To me nothing is more sad than sitting on a chair in the shower using hot/cold water fighting the beast, knowing nobody but really nobody is there, just me alone...
Just the presence is important. I know and my ex wife knows she can't help on the pain so I never ever did but weight on here shoulder. But a warm hug, cup of tea, whatever after an attack is so much appreciated and can't be paid with money.

But please, as supporter do not make the mistake going into suffering yourself! I know this is difficult but important, very important supporters controlling the impact to themselves as hard as possible.   

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