Hi,
my name is Amanda and my brother (36yrs old) has recently been diagnosed with cluster headaches. We live in Australia. Are there any suggestions you can make regarding supporting him through this?
Thanks

Amanda

Hi

I wa diagnosed at exactly the same age and the advice I would give is that they seem to be very individual I have had them for years but because they were not typical people said no you don't have cluster. Tell him only he knows if the medication is working for him so if he gives it a reasonable amount of time to work with no result go back and ask for something else that will work. Tell him he's not mad they are real and there are others like him and to be nice to himself when he can
For you his family it can be tough I know I really appreciate my family they have a great approach of disappearing when it's really bad and reappearing without a word tea in hand a little while later!

It will improve I hope

A couple of pieces of advice:

Get him to a headache specialist neurologist. General practitioners and even garden variety neuros just don't have the knowledge base to effectively treat CH,

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Read this link and embrace oxygen! I abort my attacks in about 6-8 minutes just by huffing pure oxygen. Danged near magic.

Get your brother on this board! ;) Knowledge is your best ally in dealing with the beast. The more you know, the less you hurt. And thank you for starting the legwork for my CH brother. We have a special place in our hearts for our CH supporters.

Joe

Because Cluster is described as an "orphan" disorder (there being such a low % of the population with it) and finding a skilled doctor is often so difficult, it's very important that he become knowledgeable and even skilled in caring for himself.

Encourage him to get involved here so that we can give support, feed him useful medical information, and give him a broad base of folks who have learned how to cope with a disorder for which there is no cure.

Hi Amanda

First off you've made a great move in looking here for support. Everyone here either had CH or supports someone with CH, so together there is an incredible amount of knowledge about everything you could possibly imagine around CH. You'll be able to tap into this experience built up from years of experience, thousands of visits to neurologists and more to make a difference to your brother.

As others have said, because CH is pretty rare, it's vital to get your brother seen by someone who will have the appropriate skills and experience, i.e. a headache specialist. There are several people on the forums from Australia, so by letting us know the area in which he lives will help them to suggest someone local to you.

That should enable him to get the right treatment that works for him to prevent as many of the CH as possible from happening and to be able to kill off those that do get off rapidly.

Helping him get the right treatment is just the first step. Start reading other posts here and you'll soon learn a lot about CH. Ask questions and people will try to answer them.

And suggest to your brother that he looks in here too.

Hi Amanda & Welcome

I'm in Karratha West Oz.

Let us know where you live; state/city/town & what the Doc has given your brother as advice, Meds etc & we can point you in the right direction.

Thanks for supporting your brother, we all need someone special at a time like this.

Cheers
Barry

Guiseppi wrote on Feb 5^th, 2012 at 9:08am:

We have a special place in our hearts for our CH supporters.

Wow! Guiseppi's been known to tell the biggest ever porkies but he's being fair dinkum for once. You must be special.

Welcome, Amanda, and while this may be the biggest nut-hut outside of Canberra you're in the right place to help your brother. Knowledge is our greatest weapon in this war and this is where you'll find it. Our good friend Barry from Karatha is a bottler when it comes to organising Oxygen and can give you all the good gen and we've even some girlies around if you need a shoulder to cry on.

Importantly, you need to how to behave when he's getting hit. For instance, many of us can't stand to have anyone around and don't even think of reaching out and touching! Others are completely different so see if you can talk to him sometime he's pain-free to see how you can best help. It may be as simple as making coffee, getting an ice pack or just running interference.

You'll learn here also that alcohol can be a major trigger, so if there's beer tempting him in the fridge you might be better off sending it to me for safe keeping.

Other things that can help are a can of Red Bull guzzled straight down at the first twinge, Batch's famous vitamin therapy (see medications board "123 days pain free"), melatonin you can get over the counter and can help at night, or just selling him off for medical experiments and having a holiday on the money.

Either way, save some time for yourself, full speed ahead and damn the torpedoes.

Cheers and beers,

Brian up north.