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Posted in Untitled on 21 Dec, 2010 - 1:46 pm

Not user if this was the one - but try Youtube and found the below

Posted in Untitled on 10 Dec, 2010 - 8:12 am

Hi Katrina,

Peter has pretty much summed it up, it took me alot of Docs and Nero's to find one that knew what I was going though.....WOW the Orgasm headaches I also have not heard of them are not having a good run.

How long do they last you say? varies from person to person.

Katrina I know it is easy said than done but girl hang in there....

As Peter sad ask questions and we will do all we can to help....also vent way on this site if you need too.



Posted in Untitled on 09 Dec, 2010 - 9:22 am

Hi Midnite1970,

Sounds to me by your post that yes it is CH but I am no expert so best to see what the MRI shows next week for you and what the Nero has to say.

In the meantime read all you can on this site especially the posts on O2 and Melatonin which has helped me this time round.

Also after the Beast hits you and gives you that dull ache which we call the shadow take a red bull or strong coffee as this seems to help alot of us get ride of it.

Infomation and knowledge is the key here with the Beast and print out any info you think will help you when seeing the Nero to help you in getting what is needed to cope.

Certainly understand what you are going though with the pain and the bullet thing....however hang in there and keep us updated on how you go.

This site have alot of good people here that are here help if you need it or just want to vent.

Cheers Mat

Posted in Untitled on 08 Dec, 2010 - 9:41 am

Hi Shell,

Yes only been taking 4 to 6mg before bed and waking up a few times with hits but the 02 has help get ride of them.

Will be taking 10mg tonight to see how that goes - the only thing is there is only 2mg in each tablet - which means 5 tablets per night and there only 21 tablet in a pack - I do have 2 more repeats.

I might need to see my Nero instead of my GP to get a compond chemist to mix me up a batch of 10mg per tablet.

Will keep you posted.



Posted in Untitled on 06 Dec, 2010 - 9:04 am

Hi Martine and Tom,

GREAT news to see Tom is getting pain free nights with Melatonin. I too am in my second week of my CH cycle after 2 year remission….

During this cycle I have been using the Melatonin of the shelf however was doing nothing so on Fri I saw my local GP and asked for a prescription – she did say it was the first time she has prescribed this and had to look it up in her medical book but I had no problems getting it from her after telling her I suffer from CH.

That night I took 2 x 2mg (you are only meet to take 1) before bed and had my first night without a hit – Sat, Sun and last night I did the same – however I did wake up after an hour with the first signs of the beast coming so I went straight on to my O2 tank sitting on my back deck (E tank) for 10min and it killed the hit. I went straight back to sleep after that and did not wake up until the morning.

So far so good with O2 and Melatonin this cycle……..however early days - Also not shadows during the day.

Posted in Untitled on 21 Oct, 2010 - 12:52 pm

I'm with you Roger - trying to distraction a person let alone a kid is the worst thing, it is the last thing you want - all you are doing is putting all your focus and energy in dealing with the pain (the beast) - that why we rock and pace to try an deal with it.

Martine I feel for you and Tom.....poor little man ....

Posted in Untitled on 08 Sep, 2010 - 10:05 am

Hi Shell,

Yes I use the Melatonin from the Chemist Warehouse - the make is Bioglan.

I have been using this of and on for the past 2 years ever since my last cycle stop. I am still pain free touch wood.

I mainly use melatonin when I can not get to sleep at night if I am restless or can not get to sleep within 45min I get up and take 3 or 4 and within 30min sleepy sleepy.

In the morning I do feel abit groggy in the head but nothing a good cup of coffee can not fix.

When my next cycle comes into effect I will be going to Docs to get the presciption ones.
Lets hope that does not happen any time soon.

Cheers for posting this as i do feel it has help me with CH.



Posted in Time for an upgrade on 03 Aug, 2010 - 12:05 pm

Hi Roger,

Nice work i like the new format - makes it easier.

Good stuff



Posted in grumble grumble on 02 Jun, 2010 - 2:39 pm

Hi Heather‚

I get my from the Chemist Warehouse - the make is Bioglan.

Stay safe and beat the Beast. All the best - Chers Mat

Posted in Untitled on 02 Jun, 2010 - 2:31 pm

Hi Luke‚

An all to familiar post when it comes to suffers of CH - I also was a bit relieved to have found this site and what this was.

Keep us posted and let us know what your GP says when you go back to see him.



Posted in grumble grumble on 28 May, 2010 - 10:38 am

Hi Heather‚

Really sorry to hear this - you mention in your post ""it is the sleep pattern"" - I find that if my sleep pattern is out of whack the same thing happens to me - have you tried Melatonin?? - When I go to bed and sometimes when I can not get to sleep I take this - it seens to help me relax and fall off to sleep.

some links below for you.

Take care‚ just though this might help you also.



Posted in Why we had to remove quiz! on 05 May, 2010 - 3:28 pm

What a Joke this we are meant to be all on the same side here fighting against the BEAST.

Posted in Pain Patch on 12 Feb, 2010 - 1:08 pm

Any one watch 7 news last night in Melbourne? - If not link below.

Have a listen to Kevin describe his me it sounds like he was descriding a chronic CH suffer.

Could TPM Oxycodone - Pain Relief Patch be the answer to keep the Beast away? who know's - lets hope so.....

Melbourne scientists have made a major breakthrough in the treatment of chronic pain.

Biotech company Phosphagenics has developed a patch that can deliver the drug Oxycodone‚ similar to morphine‚ which has only been available in tablet form.

Taking dozens of tablets a day will become a thing of the past‚ according to Anaesthetist‚ Professor Guy Ludbrood.

"What we believe is that if this drug fulfils its promise‚ and we are confident it will‚ you can take this once a day‚" he said.

With daily replacements it will keep pain at bay‚ day and night‚ for up to 10 days.

Early clinical trials of the patch have returned extremely positive results and so far there have been no side-effects.

Dr Esra Ogru from Phosphagenics said scientists have spent five years working on the patch.

"It's a world first‚" Dr Ogru said.

"People have tried to deliver Oxycodone before but failed."

The patch will undergo further trials before becoming available by prescription in around three years.

Read more about the company at

Posted in Untitled on 20 Jan, 2010 - 2:41 pm

Hi Lauren‚

I also am a newbie and also from Victoria and could not help but read your last post asking the question
“Any natural treatments out there that seem to work?”

The below might help answer that question for you – it might be worth a try.

On the home page Click on “Medications‚ Treatments‚ Therapies”

Then scroll down and find the heading “KILOWATT3” and have a read.

Basically the below is what they are talking about – a natural treatment for CH that has worked for some on this US based site.

Kudzu - 1000 mg‚ 2x per day (morning & night)
Magnesium - 250 mg‚ 2x per day (morning & night)
St. John's Wort - 300 mg‚ 2x per day (morning & night)
Skullcap - 425 mg at bedtime
Melatonin - 10 mg at bedtime

Now let me say that I have not tried this yet but am looking too when the beast comes back to pay his visits – I have been a Episodic for 20 years but misdiagnosed for 16 out of those 20 years‚ a common story with most of us. I am 36 in March – I have been PF for the last 2 years‚ last cycle back in 2007 that lasted 6-8 weeks but I know the beast will be back someday usually around this time of year too. So for me this is why I am going to arm myself now with the above and also O2 – which I have set up an account with BOC – ph: 1800 050 999 – you need a letter from your Nero to get this done.

Next Question you might be asking is where do I get this stuff here in Victoria?

Well you can get Magnesium‚ St. John Wort and Melatonin from The Chemist Warehouse. With Kudzu and Skullcap at the moment I am having troubles finding this in Health stores here – so I have referred to the net and found you can get these from – they do ship to Australia – however I have put off ordering these as I am seeing if my Naturopath can get this stuff‚ I will find out in the next few days. Also I have found you can get the Kudzu off eBay.

Off the lucky vitamin web site if my Naturopath can not get here are the below brand names for this recipe:


Anyway a bit of a long post sorry about that but I tough you might like to know this – also this recipe is to be taken no longer than 1 to 2 weeks.

Wishing you PF days

Cheers Mat

Posted in CH to Vague on 12 Jan, 2010 - 12:52 pm

Hi Beau‚

Mate I am in the same boat - mention headache and people thing what the big deal is as a headache is a headache - the medical profession need to come up with a new term for it - not sure what but something other than Cluster "Headache".



Posted in Untitled on 07 Dec, 2009 - 11:42 am

Hi Sarah‚

Welcome - sorry you had to find us but it is nice to come to a place where people understand what we go though.

From SA I see - nice spot that - I say that because I am also from there (Highbury) however now live in Melbourne...the heat wave a few weeks back would not of help your CH.

Anyway Welcome and hoping for PF days for you.



Posted in Untitled on 01 Dec, 2009 - 12:42 pm

Hi Al‚

Quote: can anyone tell me how long your cycles last for - im in my third week ..

It all depends - my usaully last 4-6 weeks sometimes 6-8 weeks....and they get worse before they get better.

Also with massages Al be careful...when i usually get a message it usually starts the beast coming on.



Posted in Untitled on 30 Nov, 2009 - 9:51 am

QUOTE: I want it stopped.............

Al‚ mate I hear ya....everyone with this beast wants this stopped...check out the below link

I have not tried this nor do I condon it however something to think about as it not everyone cup of tea so to speak...however I do aggee with Barry O2 is the best if used to speak with your Nero (Doc) on this first...if they are good and know about CH they will give you a letter for O2.

Also another thing that might help with the nightime hits is Melatonin - you can pick this up at your healthcare store...1 hour before you go to sleep take 3-4 tablets...some nights it works for me and other it does not...sometimes i have to up the qty to 4-5...however if i can get at least 6-7 hours sleep before the beast comes back at least I can cope with him a bit better without sleep.

Quote: Has anyone tried any allergy tablets?
Al yes have tried but they do nothing.......

Hang in there man....

Cheers Mat

Posted in Untitled on 25 Nov, 2009 - 8:29 am

Hi Al‚

Mate I am also from Melbourne...the weather here has been a mess....bloody hot one week and cold the changes and season changes are also a trigger for me but so far touch wood no CH for me this season......have you asked your Doc about O2?....this can help quite a few of us Clusterheads...check out the below web site alot of good info on O2....suggest a 15 lpm regulator to start of with...if you need any help on getting O2 let me know I get mine from...BOC – ph: 1800 050 999 - You need your Doc to fax a letter to them to get one.

Stay stuff Al - don't let the beast get you...easy said then done I know.



Posted in LSD health benefits on 12 Nov, 2009 - 6:45 pm

Hi Kirkulles‚

I have been following this...

Check it out...just air in the states



Posted in Untitled on 04 Nov, 2009 - 2:51 pm

Hi Missy‚

Glad you have found this site however sad you are in cycle with CH - have you tried pure O2 - here is another web site that is quite helpfull if you have not found it already.

Wishing you all the best hang in there and wish you PF days ahead.



Posted in Left or right sided on 15 Oct, 2009 - 12:55 pm

Lefty (CH)
Righty (hand)
Lefty (kick)

Posted in Untitled on 23 Sep, 2009 - 3:28 pm

Hi There‚

Check out the below link - might help answer your question.

I would say I am a recreation user of Cannabis - only on the weekends Fri and Sat nights (1 joint per night) - seeing I do not drink Alcohol that offen I see this pretty fair (everything in moderation I say) - however when I am in a CH cycle i stay away from the stuff - just does not help especailly during a Kip 7‚8‚9 or 10 attack.

I have also been reading about shrooms - check out the below links if not already:



Posted in Untitled on 09 Sep, 2009 - 4:09 pm

Hi Kirkulles‚

Yes I find stress tiggers my CH however it not the only reason - I found it started with my sleep patterns and cycles - the more stress I get the less sleep I get and therefore more chance my CH comes back.

I have been looking on the web as of late and come across Melatonin

Check out the below link - interesting reading.

Next time I my CH starts I will be talking to my Nero about this - see what they have to say - Melatonin is ment to help one sleep - it used for jet lag.

Stay save and hang in there.




Posted in LSD or Mushrooms as a treatmeant? on 02 Sep, 2009 - 11:17 am

Hi Benny‚

Cheers mate.

Butch....thanks for the heads up - I might still give it a go as my last option if O2 does not work and med do nothing.



Posted in LSD or Mushrooms as a treatmeant? on 25 Aug, 2009 - 3:01 pm

Hi Benny‚

Thanks for the reply - yes the info on this is very hard to ingore - if it can knock out a cycle it got to have some +++.

If you get a chance send me the link from youtube would like to see it.

Also not sure if you are on facebook but I am - I just join up on a CH group from around the world on there call "Cluster Headaches" - good to be part of a group‚ like this site that can discuss this pain in the head when it comes around...damm Beast!! - let me know if you are on it.

Also as you do been reading on the web the below link about testosterone level blood test - have you try this at all?



Posted in LSD or Mushrooms as a treatmeant? on 18 Aug, 2009 - 2:21 pm

Hi People‚

I am new to this site and have been suffering CH for 20 years now - started back when I was 15 I am now 35.
Most my cycles last anywhere between 4-12 weeks - my last attack was back in 2007 (when I was on holidays with my family in the Gold Coast around March) I usually find the cycle comes back when the season changes....I have been pain free and still am however I know the BEAST will return one day and would like to be prepared when he/she does comes back.

02 is my first choice for my next attack - I have not tried this yet however all the post i have read suggest this is the way to go which is great...

However I have started doing quite abit of Google searching lately and found a few US site suggesting LSD or Mushrooms as a treatmeant to either abort the attacks when they come on or shorten the length of the cycle.

Now here's were I need your info/advise - has any of anyone here tried this?? If so would like to here you...Has it help?

Cheers and thanks for reading.