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Posted in D3 or prescription meds ? on 21 Dec, 2014 - 9:51 pm

it has been a long time since my last full cluster.

I had a couple of low rate headaches over the last couple of weeks which i brushed off. From friday night they have been ramping up with a broken night of sleep last night to an 8 this morning which I could no longer ignore.

Snorted an old imigran nasal & downed a can of mother this morning. Then ran off to a weekend after hours surgery this morning and got some fresh immigran nasal scripts. Have been sucking back mother all day whenever the twinge came back.

Tomorrow I'm off to BOC for O2 to get me through the public holidays and hopefully can get into my own GP to script up for my neuro's action plan, which i think was high rate prednisone tapered off until the Verapimal & lithium kick in.

Chasing some more info on B3.
Read the thread at
. but I dont get a clear idea of what products and dosages

Its a bad time of year to hold off on my prescription regiment, but I'm hoping to give the B3 a try as the prescription meds, particularly the verapimal and lithium KO my IBS

If any one has used B3 with success, could you provide a guide to Australian shelf brands and I go be a bit clearer on what is involved.


Posted in oxygen therapy - purchasing on 02 Jun, 2012 - 11:48 pm

Hi Daniel,
I own my reg. I was going to look into returning the oxygen bottle(s) when not being used to avoid the monthly rental. You need to confirm the following with your supplier. What I found out a few years ago is with BOC you pay a monthly charge for cylinder holdings , calculated on all your holdings at the end of each month and a supply charge for each bottle taken. With this knowledge you can grab extra supplies at the begining of the month to avoid being short and reduce visits, returning your empties before the end of the month to avoid the holding charge. Remember also, 'gas & welding supply' supplies may also stock 02 so call around for your closest supplier.
Hint: A D size bottle is 3 times larger than a C
As of jun 12, Medical D Size $55.25, Medical C size $40.40.

At the end of a cluster, either gather up your 02 invoices or call your supplier for a history. If your lucky your health fund will give some money back. ( to buy that drink you havent had for weeks or months)

Q. does anyone have a source for non-rebreather masks?

Posted in Hello to all on 15 May, 2012 - 7:58 pm

Hi Paul, Ive suffered for 18years. At the start of this cluster I madly ran to the quack and renewed my immigran nasal and injection scripts, then ran to the chemist and grabbed some nasal and then off to BOC to grab a C bottle. That night I jumped on the forums and read that energy drinks work. 8 weeks in I havent opened the immigran, I'm using oxygen at night for the multiple attacks because predictably I couldnt sleep after an energy drink. For the day time attacks, so far I've used mother and V and the drinks have been suprisingly effective. Historically I always had trouble with day attacks combining nasal immigran and 02 it was still hit and miss. The drinks are cheap and free me up to get out and about a bit more, I still carry the bottle but so far so good. btw the D size and C size 02 bottles fit the same regulator. For home its cost efective to have a D beside the bed if your a heavy user..

Posted in Untitled on 15 Nov, 2008 - 6:35 am

morning all‚
I was in filling my immigran script yesterday and my pharmacist suggested Topamax. He did mentioned the m(migraine) word during the conversation‚ at which point my interest lapsed.

anybody heard of / tried this ?


Posted in Beer anyone? on 14 Nov, 2008 - 8:00 pm

this thread is so cruel. i can almost taste those cold vb's in the fridge. i'll probably have an attack thinking about one. come to think of it‚ 1 or 2 will trigger an attack‚ will you have a full on attack if youve had 1 or 2 too many. i can almost talk myself into it...nah kidding‚ i'm a chicken

Posted in Untitled on 14 Nov, 2008 - 7:43 pm

What size bottles do you use and how long do they last at 15LPM. Also any tricks to save money.

Ramping upto 15LPM this cycle‚ I'm going through 1 to 2 C-size bottles a night. With BOC thats $35.27 each plus the $18.61 container surcharge applicable to end of month holdings ONLY.
You can save a bit on the surcharge by minimising your holdings at the end of the month.

I've thought of going to a D size which will require another regulator.

Appreciate advice from the wise.

Posted in anyone else has had any symptoms like twitching? on 17 Oct, 2008 - 11:47 pm

sorry for your loss. when my son was diagnosed with cancer I had an attack‚ 8mths earlier than due. I suspect another mystery of ch‚ statistically hard to prove.

For your twitching‚ if red bull is loaded with caffiene like v‚ couldnt the twitching be caffiene related‚ or introducing the potential to be caffiene related. it might pay to get magnesium supplements from a health store.

personnally‚ during an attack‚ my left shoulder doesnt seem to stop twitching. Also my left hand‚ but this may be more an unconscience movement.


Posted in Untitled on 17 Oct, 2008 - 11:34 pm

for a while‚ mine were annually around feb/mar

Posted in Untitled on 17 Oct, 2008 - 11:25 pm

I guess the goal posts have moved‚ as I have been unable to abort this attack‚ suffering between 1 and 4 attacks per night over past month.
As bad as it is‚ I‚m thankful they haven't occured during the day which was typical of my history.

Using 12L to 15L of O2 successfully now thanks to this site. Previously I only used 3L which was a bit hit and miss.

Its a weird sensational‚ your heads exploding‚ your wriggling around because you just cant stay still‚ your breathing hard trying to suck in the gas and then... a subconscious thought or feeling‚ its gone. you stop moving‚ control your breathing and do a quick‚ cautious evaluation....nothing. you hang on the gas for a while longer
because you know it could bounce.

Turn off the bottle‚ a quick inventory to make sure the main bottle still has gas.

what was the past 5min‚ like the comment above‚ the memory has faded. Not enough that you dont fear the next. weird.

Posted in Untitled on 17 Oct, 2008 - 11:06 pm

the common dignosis of CH is the same‚ the underlying symtoms and reactions to certain drugs appears to be a personnal thing. re the drug survey on this site. economically and performance wise‚ try o2. The initial setup and availability can be a deterent. Try and loan you GP's set over the weekend to try.

As to nausea‚ at a guess this only occurs during extreme attacks. This is possbly the bodies reaction to prolonged extreme pain. I get the same from CH and had the same when I had gall stones.

i wonder if other ch sufferers have secondary health issues. i dont recall this being explored in other forums.


Posted in Untitled on 25 Sep, 2008 - 2:00 pm

Thanks David‚

I have been taking the above drugs for the past 6 years. To correct my error‚ I only take 400mg Epillium. Lithium is reviewed at 6 monthly blood tests‚ but hasnt changed over the past 6 years once normal levels were established.


Normally I only take 480mg. I function better at this level.

There have been a couple of times over the past 6 years where I have had signature CH head pain. Sometimes i've ignored the initial signs and experienced an attack or 2. At those times I increased the veracaps. 3 tablets has been enough in the past to abort the attack or turn it into a ghost‚ present but not quite there.

This time no warning at all. I admit I had become a bit complacant‚ missing a few doses and maybe abit to much excess.

I went to my gp on tuesday because i went upto 4 tablets. a bit of self medicating. blood pressue remains within normal range.
still no dizziness when i stand which was typical at 2 veracaps 6 years ago‚ i think these were 180mg tablets.

wait now.


too early to comment‚ last 2 days have been without attack.

Sorry to hear that your CH has returned
I am just asking have you been taking 750mg of lithium‚ 600mg of epillium and 720mg of veracaps for this period of 6 yrs or was this just an initial dosage.
If it is initial only have you been taking any preventative medication since the last CH bout ?

Posted in Untitled on 23 Sep, 2008 - 10:18 pm

hello all‚
its feels like a long time since i last typed cluster headache into google.
the american sight was all into shrooms when last i looked.

great to find a local sight

I was diagnosed when i was 18‚ by a neurologist called goadsby in penrith. he then moved overseas. My typical cycle was every feb give or take and every 24 to 36 hrs for 6 to 8wks. 1 chronic attack for 10mths. 6 years ago i was in randwick childrens hospital with a child when my cycle kicked in. I was refered to the loacl neuroligist‚ professor zagami. 750mg of lithium‚ 600mg of epillium and 720mg of veracaps and the cycle was aborted. I have mantained this for 6 years and have only had to reach for the bottle once or twice. The ghosts were there‚ the stiff neck‚ the lazy left arm the slight left sided pain but they were in check.
until last week.
the alarm clock in my head went off at about 2am.
then the 2nd and last night.
no longer in denial‚
21 years after the first‚ it's back and shit i'm scared

Posted in Untitled on 23 Sep, 2008 - 9:53 pm

Professor Zagami at Randwick Hospital. I had 15 years of CH. Lucked onto Professor when an attack started when I was in Sydney with a family member. A mixture of Veracaps(verapimil)‚ Liticarb (lithium) and Epilim (sodium Valproate) worked as an abortive and constant medication had me CH free for the past 6 years.


Posted in Untitled on 23 Sep, 2008 - 9:36 pm

thanks for the info‚ re hyperventillation rates. Always read that large volumes were used‚ but I was managing on about 3L/min (at night) as an effective abortive and couldnt understand the higher rates quoted. 3 attacks into this cycle‚ still at night. I'll give the high volume a try next day atack which typically never responded to O2 at the volume I was using‚ oxygen only reduced the intensity for the duartion of the attack‚ later I found I could use Immigran Nasal and Oxygen as an abortive cocktail..

thanks again

TIP1: Buy your own kit
TIP2: Bottle rental (for BOC) is charged on your end of month holdings‚ bottles used and returned earlier are not charged. Keep this in mind and you can have a couple of spares lying around. 1 at home‚ 1 at work.