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07 Jan, 2009 - 1:46 pm

oh my god i had only just found your site until now i had no idea of what i was suffering .
The severe pain behinf my eye and sid of my temple - when it comes on i just want to die - cant lie down as it makes it worse so when its at night i end up walking round the house with an ice pack or trying to relax sitting upright shallow breathing sometimes helps as to energy drinks as some others have said on here - pain killers dont touch it - and every one just thinks you are putting it on or thinks its just a migrain - had those when i was younger and it nothing like that - they tend yo last a few hours die back a bit and hit me again a couple of times before they disapear for a while.
I have not looked in to any treatments as the doctor i went to along time back just said it was migrains take a couple of pills and lie in a dark room - great help that was.
If any one can suggest what i can try i would be really greatful as i had an attack yesterday evening / night and i can feel it coming back

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07 Jan, 2009 - 2:08 pm

Hey Mas!

I'm new to this site too (my husband has had CH for 2 years). You really need to find a doc who knows about clusters and get a diagnosis because there are meds that help and sometimes even prevent you getting any more (e.g. prednisone‚ verapamil). You also need to get checked out properly to make sure you don't have anything dangerous. A lot of people find they need to doctor shop‚ since CH is quite rare. You can print out info from this site too‚ but I think it's not worth sticking with a really ignorant doctor.

Where do you live‚ someone on here might be able to recommend a neurologist or GP nearby?

Meanwhile it's great that you've found ice and energy drinks already‚ make sure you skull the whole can straight away when you feel it coming on‚ and keep it really cold. We are using v black several times a day rather than redbull as it's got taurine + caffeine with less additives (leaving you slightly less hyper).

Other than that if it's an emergency you could print out the oxygen info from here and go to emergency dept or fire dept‚ as high flow oxygen seems to work really well for most people. It can be good feeling to know you have some option for if you really can't cope‚ even if you don't go there! I guess if you hit on a good doc at the hospital this might also fasttrack you towards getting a diagnosis.

When you talk to docs you have to TELL them how bad it is‚ that it's by far the worst pain you ever had‚ that you can't go on like this (even if you're really tough and you kind of can). Hopefully then they sit up and listen and refer you to a specialist.

Hugs‚ keep reading and use these support networks for all they're worth‚ you're not alone any more!

Lisa

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08 Jan, 2009 - 1:52 am

Hello and welcome to the forum

You're in Murrumba Downs too

My partner gets CH but is currently in remission. He went to the doctor at Castle Hill medical centre for an injured elbow a while back‚ and told the dr he gets CH‚ and the Dr said when he gets them again just come in and they'll give him O2. So that would be just up the road for you‚ if you wanna try O2.

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08 Jan, 2009 - 7:10 am

thanks for your replies - lil fuzzy i noticed your posts after i posted this and aw that about the doc at castlehill - will have to see if i can make an apointment dont suppose you can remember who you saw at all - the only problem with O2 is that they normally come on or i get the warnings when at work so not sure how easy it would be to get to them on time to try but its always worth giving it a go - to be honest i would try anything
cheers

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