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alison

(Member)
From: Melbourne
9 total posts
Not currently suffering :D
Hi , my name is Allison and I was diagnosed when I was 24 with ch but my mum remembers talking me to the hospital when I was 17. Fast forward 10yrs later the horrible thing returns every year , I'm writing this as I don't want to go to sleep . Have tried preventative medicine flyin cafergot to prednisone and something with trip , immigran and now on nurofen zavance which works a little to dull the pain till I pass out . Had the worst iimaginable one last night ... Help , does red bull work ? In scared to have 02 in the house as I have little kids . Pls can someone share good news . I'm having acupuncture trying to cope , wanting to cry ... Falling asleep now
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Never Give Up

(Member)
From:
3 total posts
Not currently suffering :D
http://www.clusterheadaches.com.au/forum_posts.php?id=2985&start=15
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saintpeter

(Member)
From:
606 total posts
Not currently suffering :D
Hi Alison,
Wow. If you're sure you have Cluster Headache (CH), then only you can help you. We'll do what we can too, but
There's no instant cure. You've got to help yourself.
What there is, is heaps of info- down the left there - which YOU have to read. Don't keep yourself miserable. But why no oxygen around your kids?? You can't secure meds?
If you have young children and need help coping, then say something to your doctor. Immediately. please. Best wishes to you Alison,
cheers peter
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alison

(Member)
From: Melbourne
9 total posts
Not currently suffering :D
Thankyou for your comments Peter , it's week 5 and just holding onto that its nearly gone ... I vividly remember when my GP in cairns said that you have cluster headaches after all the tests , ct scans and tried everything , food diary ... My husband didn't know what to do the other night other than to try and help comfort me at 1 , then 4am then 6 .. I know it's up to me have read so much every year just hoping there was some miraculous cure and so had I found this sight again. Does anyone else get triggered by hot sudden weather change ... Asked new GP in melbourne for 02 and no can't have it unless I do lots of tests .. He had never heard of this before for cluster , he said I knew more . Thoughts anyone thinking now about prevent meds again .
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blacklab

(Member)
From:
25 total posts
Not currently suffering :D
Alison, by the sounds of things your in Melbourne, me too
I too had the same problem with a doctor that new nothing of 02, and wouldn't give me a prescription.
its just a case of getting the right one.
there are plenty of preventative options Allison, plus 02
I use red bull at the first sign of a cluster and it can kill it in time for an imigran pill to kick in or time enough to suck that oxygen.
there is a company here in Melbourne who supply the bottle, mask etc, one of there rep's is fully schooled up about our needs.
plus, the vit d regime which a guy called batch in America has developed, 80% of users go pain free of heavily reduced symptoms....
alison, i'll pm you my contact, I can give you the name of a doctor that will prescribe 02 if needed.. you did say that you were properly diagnosed with ch ????
colin
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Tania

(Member)
From: Glen Iris
3 total posts
Currently suffering :(
Hi Alison, I too am in Melbourne and feel your pain. I have 3 small children and my attacks are also yearly lasting up to 12 weeks. I have a good GP in western suburbs who is good with CH treatments, he didn't prescribe me 02 (a neuro did) but has been great with other drug options. However, I have responded to your post because I have found a non medicated treatment for CH through a physio at Watson Headache Clinic. Last year when I was pregnant with no. 3 I was not able to take any meds and was getting up to 4 headaches per day. Long story short I was told about this guy who was claiming 80 per cent success in treating CH and I was desperate. With 6 weeks treatment my headaches were completely gone. A month ago they returned and were coming daily. I went to see him again and after 2 weeks already seeing results. After having 1 or more daily for 4 weeks in the last 5 days I have had 3 CH free days already. Google this clinic, honestly it will not be a waste of your time. All the very best, I hope you get relief soon.
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alison

(Member)
From: Melbourne
9 total posts
Not currently suffering :D
Hi Tania and Colin , can't Thankyou enough for posting , feel sad that you have this horrid thing we call cluster headaches but empowered that I am not alone and not imagining it and there is help ... Off to bed have to work tomorrow but feeling anxious and avoiding sleep so here i am, had 5 weeks acupuncture and taking too many relief painkillers at night to relieve it when it hits ... Hoping this is my last week , my husband is worried this years it's even mite chronic twice a night 1am 4 am . .. This year I have decided to share and educate all my friends and people that I see as I normally just put a face on and be my happy enthusiastic self , it's hurting this year .. Needing to go back to my new GP ... Thankyou again . Question pls / are yours always winter /spring or change in weather ? I'm trying to figure it out , we lived in cairns got it oct-dec when it got super hot , now in melbourne may / July ...
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Pashmina

(Member)
From: Bayview
2 total posts
Currently suffering :(
Hi there....I'm now living in Darwin but am ex Melbourne. Dr Hilary Hunt a neurologist at Epworth Hospital first diagnosed me 20 years ago. She is a great believer in oxygen and I can't see any reason why you can't have it at home with children. All you need is a letter to BOC Gases saying you require high flow oxygen for cluster headaches....it's not a prescription as such. If you GP doesn't know much about CH or about oxygen, then find a GP who does.
Yes I have found a change in weather can trigger mine - every year in October they would start - a trip to Bali, a trip to Jakarta (warm weather compared to Melb)......now I live in Darwin and I'm trying to work out if they come on with the change from dry to wet season, but so far can't work it out.
I tried acupuncture for the first time ever on Monday, pretty strong session and I was cluster free on Monday night....but I got one last night but kicked it in 30 minutes with an Imigran nasal spray and immediately onto the oxygen tank!
Wishing you all the best.....
Debbie
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saintpeter

(Member)
From:
606 total posts
Not currently suffering :D
Hi Debbie, welcome to the forum. Alison, ask your doctor to recommend someone competent... not every doc will know what you're talking about.
you are in familiar territory- we're all trying to work out what makes these things happen, and how to stop them.
These days I'm favouring a less meds more fresh life ,which so far hasn't made things worse. Change of season can be a bear though.
Best wishes to all
cheeers peter.
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Ex-member

(deleted-member)
From: unknown
6 total posts
Not currently suffering :D
Hi all...I live in Brisbane and I suffered CH about two and a half years ago and the pain was excruciating as many of you will understand. Like many of you I saw every specialist that there is to see. Luckily for me, I have a very high threshold for pain and did not take any form of medication or drugs for it. But nonetheless, the pain did stop me at my tracks when they hit. Watery eyes, eye pain, jaw pain, sinus pain, side of my whole head (only ever right side for me), it would hit me in no less than a minute at peak and would last approximately an hour to hour and a half. Then one day, it disappeared out of the blues. I was so thankful and glad and life went back to normal for 2 years. Then 3 weeks ago (end of Aug 2013) it came back. same old stuff. Then I did more research hoping that there is some new "cure" for this terrible condition. I stumbled upon a clinic specialising in the treatment of headaches. They are called "Brisbane Headache Centre". See link here: http://brisbaneheadache.com.au/ Chris Fawcett is the physio running the show and have an excellent understanding of what we are going through. They follow the Watson Headache Protocol™ method and it is simply an amazing way to tackle CH and other similar headaches. No drugs, no hard or rough manipulations, just simple logic and easy to follow exercises that worked (for me!) I highly recommend that you give Chris a call if you are in Brisbane or contact him for referral to other practitioners in your area. This is a very new approach and I can really give Chris the highest recommendation because it worked and worked immediately. Wishing you all the best of luck!
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