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Posted in Unusual changes with CH. on 06 Apr, 2021 - 11:35 pm

no advice, but i think you are 100% doing the right thing
by arranging GP and Neuro appointments.

best to leave diagnosis to the experts.


Posted in Why is there so few people on this forum on 16 May, 2019 - 12:38 pm

yes doctors do now recognize cluster headache,
and there are now a number of treatment options.

my suggestion is to see a neurologist to get a definitive diagnosis
and discuss treatment options.


Posted in when to come OFF topiramate. on 09 Apr, 2019 - 12:34 am

i have just come out of a 6 month bout.

after all other preventatives failed, i was put on topiramate.

had to go to 150mg a day before they stopped.
my neuro said that is the dose all his patients had to go to
before the cluster headache stopped.

i gradually reduced the dose, if it came back i went up again.

while the topiramate worked it is a terrible drug, the side effects
where very unpleasant. SOME of them, memory loss, confused thinking,
constant ringing in the ears, constipation, diarrhea, inability to find words.
the list goes on.

on the plus side the nero now tells me the worst of the side effects
can be avoided by changing what time of the day you take it.

and as you all know anything is better than the pain.

regards kim

Posted in Why is there so few people on this forum on 09 Apr, 2019 - 12:05 am

i think so few people are active because cluster headache is so rare
and people tend to be active only when they are in a bout.

as to management , you need a definitive diagnosis and treatment
by a neurologist.

regards kim

Posted in New and need your help please ! on 08 Apr, 2019 - 11:57 pm

i am not a doctor, but your symptoms don't seems to fit
classical cluster headache.

all i can suggest is to inform yourself as much as possible
about cluster headache and discuss with your doctor.

a definitive diagnosis is essential for the correct treatment of your condition.

regards kim.

Posted in Greater Occipital Nerve Block on 31 Aug, 2018 - 4:52 am

Hi all,

said i would let you know how the GON block turned out..

it has been seven days and there has been no improvement at all.

the research said there was a 61% chance of it stopping the pain for
three months, so it was worth a shot.


Posted in COST OF OXYGEN on 27 Aug, 2018 - 3:01 am

Hi all,

first up i have no financial interest in Supagas.

i and others have posted about how helpful Kay Temby has been
in helping to get access to oxygen..

i would like to praise my local Supagas branch (Weslhpool, in Perth)..

i noticed my invoice was much less than i expected.. apparently, i
had mentioned i was on a pension and they discounted the cost without me even asking.

when this bout started, i rang Peter at my local branch,, they offer a next day delivery.
Peter is cluster headache aware, and he personally delivered the oxygen to me
within two hours.

he asked if i got a government subsidy on the cost of the oxygen,
i don't. then immediately reduce the cost even further.

honestly i can't say enough good things about how helpful they
have been.


Posted in Greater Occipital Nerve Block on 27 Aug, 2018 - 2:17 am

Hi all,

i had a greater occipital nerve block quite a few years back, didn't help in any way.

after a very welcome three year brake , the beast is back.

am trying the GON block again. had it done on 24 august., no change that day.
25 and 26 of august - dramatic increase in the number of night time attacks , from usual
one or two up to six or more., every time i fell asleep, the beast woke me..

the neuro said it should start to work in three days with maximum benefit achieved
after seven days. we will see.

i know quite a few people are interested in this procedure,
so i will keep you posted on the outcome.


Posted in Help please on 07 Mar, 2018 - 11:37 pm

Hi Scoot,

i looked into this awhile back.

oxygen concentraters are not really an option .

first they are very expensive to buy.

secondly and more importantly they can not produce oxygen
in the volume required to treat CH.

check out oxygen treatment on this site.


Posted in Has anyone had experience trying Lyrica (Pregabalin) on 07 Mar, 2018 - 11:26 pm

Hi Scoot,

on the back pain, i was on 75mg lyrics twice a day, didn't do much.

my doctor increased it to 150mg twice a day and it worked a treat.


Posted in HELP! on 28 Feb, 2018 - 1:34 pm

Hi Anita,

i suggest you contact Kay Tebby directly, she is from a company called Supergas.
her contacts are : mobile 0404 626 455 email

i live in western australia and contacted her (even though she is based in the eastern states)
and found her to be very helpful in arranging oxygen.

you will need a letter from a doctor before you can access oxygen.

hope this is helpful .


Posted in 8 Years Old and Feel like we are in a vortex! on 06 Sep, 2017 - 5:06 pm

Hi Amanda,

first up i am not a doctor.
i have had episodic CH for more than 30 years.

the first thing to do is get a definite diagnosis.
from a neurologist.
there are some headache conditions that have similar symptoms
to CH. some of which respond extremely well to treatment.

i just had a look at the diagnostic criteria for cluster headache
and based on that (again i am not a doctor) it seems unlikely that
your son has CH.

i am not sure exactly where, but i am fairly sure that on this site
there is a list of CH aware doctors.

my best advice is to educate yourself on CH and other
headache conditions. and to ask the treating doctors
lots of questions.


Posted in Calcium Chanell Gene Recepptor Antgonists ---CGRP Antagonists on 06 Jul, 2017 - 12:48 am

Hi JackyV,

i found your post from 5 july very interesting.
my first CH happened exactly as you described,
lying down (reading) with arm / hand supporting my head.
until now i had not heard of anyone else having the same experience.

the indomethacin puzzles me.
i tried it with no success.

i have read that indomethacin is used as a diagnostic tool
to rule out CH. that is if it stops the headache then it is not CH.

Indomethacin is spectacular in stopping paroxysmal hemi crania .

i am not saying you or your doctor are wrong, just suggesting
it might be worth further investigation to determine exactly
what sort of headache you have.
therefore leading to the most effective treatment for you.

regards kim

Posted in THE WHOLE SUICDE QUESTION on 25 Jun, 2017 - 2:48 am

i am not advocating suicide in any way.

as someone who has dealt with the beast
for about 35 years, i get how suicide can seem like
an option.

for years i postponed that as an option because
of the effect it would have on my elderly parents.

in that last few year they have both died.

i try to hide from pretty much everyone
(especially my children) when i am going through
a bout.

unfortunately, when i have been hospitalized, my children have been
called and seen how much pain i was in.

they have said "dad, we don't know how you can get through
this pain every year, if you choose to end your life, it is your choice"

now for the good / bad news,

one of my grandson's has been diagnosed with a devastating chronic
(non fatal) disease . he has already made one suicide attempt.

i now see it as my responsibility, to stay alive to show him
that no matter what your life is important to those that love you.

when i first experienced CH there was no effective treatments.
you just had to deal with the pain.
but now we have options, and there are many options to try
any many more options becoming available.

bottom line is hang in there.


Posted in Medicinal maruana on 12 Feb, 2017 - 4:19 am

first get a definitive diagnosis. i have never heard of anyone with CH who can sit during a CH.

as to smoking pot being better than smoking cigs, i wrote (a well researched) paper many years ago, which clearly showed smoking pot increased the risk of lung cancer by almost 700% compared
to smoking cigs.

as to pot being a central nervous system depressant, CNS depressants (like alcohol) make you
unconscious, , which leads to less restful sleep.


Posted in Medicinal maruana on 12 Dec, 2016 - 1:46 am


i have not tried marijuana myself, but know a few people who have.

all of them said it made there CH worse.


Posted in New member on 04 Nov, 2016 - 2:30 am

hi dunno81,

under about cluster headache, then under treatment,
then under practitioners, you will find a state by state
list of cluster headache aware doctors.

if you are looking for a new doctor, i think this would be
a good place to start.


Posted in Young new suffer from Scotland traveling in Australia on 31 Oct, 2016 - 3:34 am

Hi Kea,

the immigran nasal spray is very effective if used correctly.
read the instructions very carefully, to get the best results from using it.
be aware that you should only use it twice in a 24 hour period.

as simple as it sounds, inhalation of 100% oxygen is one of the most
effective ways to abort an attack again it must be done the right way.
check out the oxygen topic on this site.

there are other options available to you, please get your gp to refer
you to a neurologist.

i understand, dealing with this far from home must be difficult.

i have been caught out with attacks.. overseas in non english
speaking countries with no free health care..

we are lucky here in that public health care is free.

hope you get fast effective treatment.


Posted in Recent diagnosis on 21 Oct, 2016 - 3:43 am

Hi Mark,

we are not doctors, i don't doubt your pain but your symptoms
don't seem to fit a diagnosis of CH.
there are many headache conditions, some of which are similar
to CH. a definitive diagnosis is essential. the best way to get one is from a neurologist.

this site has a great deal of information, i suggest you make use of the information
to inform yourself, knowledge is power..


Posted in First cluster attack? on 17 Oct, 2016 - 4:51 am

Hi Sal,

we are not doctors, but as a group we have a lot of knowledge.

my fist bit of advice is, yes you should see a neurologist .
a definitive diagnosis is essential , there other conditions that have
similar systems, that can be easily treated..

as to the ongoing headache between episodes, that is not uncommon,
depending on the severity, as a general rule some of us have what
is referred to as shadows, this is a persistent dull headache that can
happen between the serve pain of a CH..

please check out the "medications and treatment" section on this site..

sometimes it takes awhile for us to "warm" to a a new member.
but trust me on this, the people on this site are good people and will
do everything they can to help.


Posted in on 28 Jun, 2016 - 2:32 am


every country in the world, except Australia, to the best of my knowledge,
supplies oxygen ( under their medicare system ) to those that require it for medical reasons weather they smoke or not.

according to the charter of human rights, in force in most developed countries,
it is discriminatory and a violation of of the charter of rights. to not supply oxygen to
those that have a medical reason for it., weather they smoke or not.

under the Australian Charter of Health Care Rights , i have the Rights to
access services to address my healthcare needs,

yet i can not get access to oxygen,(through medicare) if i continue to smoke.

comments welcome, but please know i am the son of a fireman, and i am
fully aware of all fire risks associated with oxygen use.


Posted in The old girl returns! on 14 Jun, 2016 - 1:48 am

hi Dusker,

glad to see you are still around, sorry things are not going well.

i am in awe of yourself and others on this site who have it so much
worse than myself, yet manage to have such a positive attitude.

topamax is a bugger of a drug, side effects are terrible.

you probably know / have tried these things already,

melatonin - needs to be about 10mg a day..

oxygen - used correctly can be effective.

greater occipital nerve block (for some) can give up to 3 months
relive from the beast.


Posted in Indomethacin in replacement of sumatriptan on 22 Nov, 2015 - 4:37 am

Hi Loagz,

i am NOT a doctor so check what i am saying with a doctor.

first indomethacin has been shown NOT to work for cluster headache except in extremely rare cases.
it is however extremely effective in a cousin of cluster headache paroxamal hemi crania..

verapamil is usually very effective in the 360 to 480 mg daily range.

sumatriptan in injection and nasal spray are usuall;y effective.
injection max 12 mg in 24 hours
nasal spray max 40 mg in 24 hours
from what i have read the tablets are far less effective,

oxygen is highly effective when used correctly for about 90 percent of people with
cluster headache..
usually at 15 litres a minute using a non rebreather,
when you get the mask you MUST CUT THE STRAP that is used to hold it on your face.
and hold the mask yourself,
if the mask is held on by the strap and you fall asleep and the oxygen runs out
you will suffocate.


Posted in VERAPAMIL on 10 Aug, 2015 - 1:00 am

Hi Adam,

i started this topic in sept 2014 for the same reason.

chemist told me verapamil was no longer being manufactured.

it turned out that only the 40mg tablets had stopped being manufactured.
and all the other doses where still available.

there are several different brands that manufacture verapamil, so it should
not be a problem getting some..

your doctor or chemist should be able to put you on the right track.


Posted in oxygen concentrator on 30 Jun, 2015 - 2:47 am

Hi daddysgirl,

from what i have read, you are right. the oxygen concentrators only provide 4 to 8 liters per minuet.

as to the expense of oxygen bottles : it is my understanding, as long as you are not a smoker,

if you get a letter from your gp, stating you have cluster headache, silver chain will supply the oxygen bottles and non re breather mask free of charge.

not sure if this applies to where you live, but is definately the case here in perth wa.

also i have looked into the cost of oxygen concentrators, cost is about $4000.00.

hope this is helpful.


Posted in GREATER OCCIPITAL NERVE BLOCK on 16 Jun, 2015 - 11:50 pm

Hi all,

i had the greater occipital nerve block, it did not work for me.

however the research shows it works in CH between 75 to 85 percent of the time.
giving complete releaf lasting from weeks up to four months.

liocane alone doses not work, the injection must include a steriod.
it is important that the RIGHT steriod is used.

i did not find this out until after i had my injection.

the above link covers the subject very well.

i just got a referal from my gp to a radiologist.

the injection its self was no big deal, i was in and out in about 10 minuets.

i am happy that after 22 weeks this bout has come to a natural end.


Posted in Growing out of Cluster Headaches on 28 May, 2015 - 1:06 pm

sorry Bruce the news is not good..

mine started in late 20's, now 61,

initially got them for 4 to 6 weeks every 18 months to 2 years.

over the years the bouts have become more frequent (yearly) and lasted longer
current bout into week 18, and believe it or not the pain gets worse.

the general consensus amongst the neuro's is its is a life long condition that gets worse
with age.

there is some hope, i have spoken to a couple of neuro's who have said in some cases
the beast seems to burn its self out as people get older.

although this all sounds very bleak, i am reasonably optimistic, there are more and more
new treatment options available and in the pipeline.


Posted in I have had enough on 23 Apr, 2015 - 9:51 pm


if it is understanding you want, you are in the right place,
only those of us who deal with the beast have ANY idea of the pain involved.
for those of your that are chronic. i take my hat off to you, i don't know how you cope.

in week 14 of current cycle. starting to ease of. thank goodness.
ALL previous meds not working this time, know the feeling of thinking only way out
is to top myself.. but the thought of what that would do to my loved ones stoped me.
and the cycle is ending.

you mention topramax. i believe it can be very effective if you get the dodage right,
the best advise i can give you is educate yourself on ch and find a good neuro.

there are a lot of drugs and treatments out there that a lot of the neuros are not aware of.
i recently spent 9 days in hospital with ch and the neuros where asking me about the latest

so again the best thing you can do is educate youself about ch

and know you are not alone, the people on this site trully know what you are going through


Posted in VERAPAMIL on 30 Mar, 2015 - 10:30 pm

Hi Bruce,

thanks for your reply, much appreciated.

i think we all benifit from sharining our experinces with different treatments.

VERAPAMIL DOSAGE : when i was admitted to RPH the neuros where horrified that
i was on 720mg of verapamil, yet it was one of there own neuros who told me to go
to that dose, he had even suggested going as high as 900mg a day

just goes to show we all need to be aware of the risks and benifits of any treatments
we try.


Posted in VERAPAMIL on 26 Mar, 2015 - 9:48 am

Hi all,

currenley in week 10 of cycle, last 9 days in hospital.

no prevenatives working, all usually rescue medications have failed,
even oxygen which has always been my life saver.. have had some
relife with morphine. but can't use often because of risk of rebound
hospital said octreotide would most likely work, but would not give
it to me because it is too expensive (go figure)

they don't call it sucicide headache for nothing, don't get me wrong i am
not sucicidal, but after more than 30 years of this shit, every year it gets
harder not to see suicide as a reasonable option.


verapamil can be extremeley effective, it worked like magic for me
for a few years. i got up to 720mg a day before having to cut back.
my heart rate was so low doctors said that there was a high risk my
heart would stop when i went to sleep at night.

previously i have only taken verapamil when in cycle.
one neuro has suggested i take it all the time, in the hope that it
will prevent future bouts (assuming this one ends) occuring.

so the question is - has anyone tried this and did it work or not ?


Posted in Site will be down for a short while on 23 Nov, 2014 - 4:51 am

Thanks Roger,

i and i am sure many others appreciate all the work you put in to keep this site up and running.


Posted in Getting Oxygen Treatment on 19 Oct, 2014 - 1:49 am

see 02 suppliers on this site.

Posted in Where do you buy Non-Rebreather O2 masks in Australia? on 13 Oct, 2014 - 2:26 am

Hi Tanya,

i got mine from supagas. ring kay tebby 0404626455.

she understands CH and i found her very helpfull.


Posted in Channel nine story on Cluster Headaches. on 10 Oct, 2014 - 10:21 pm

Hi Holly,

i have only heard of two people having neurostimulation of the sphenopalatine ganglion. one reported a slight improvement the other said it made the CH MUCH worse


Posted in VERAPAMIL on 12 Sep, 2014 - 9:32 pm

Hi all,

like many others i take verapamil (isoptin) when in cycle.

i went to fill a script and the chemist told me that there was none available and that the
manufacturer had stopped making it.

i was able to get some from another chemist but it is no longer on the PBS.
so instead of around $6.00 for one hundred it was about $28.00.

it is bad enough that it is no longer on the PBS but it is a real concern that it is no longer
being manufactured.

has anybody else been told the same as me ?


Posted in Attention Australian Residents on 05 Apr, 2014 - 12:39 am

there are plenty of youtube videos showing people having CH attacts.

i personaly find them distressing. too close to home.


Posted in GREATER OCCIPITAL NERVE BLOCK on 05 Dec, 2013 - 1:14 am

G'day Peter,

i have done some research on this.

it is a simple procedure, a needle (with steroids and anesthetic) just below
the base of the skull (on effected side).

there are very few side effects, all minor.

takes one to three days to kick in, is effective for about 75% CH patients.

if it works , should give about three weeks of pain free days,
enought time for preventatives to start working.

i am going to give it a shot.

while my decision to go ahead with this is based on clinical trials,
i posted, hoping to get some feed back from "real people" (this site)
who had had it done and what there outcome was.

so far, it seems that no one from this site has tried this procedure.

when i get it done, will update everyone on how succesful (or not) it was for me.

regards kim.

Posted in GREATER OCCIPITAL NERVE BLOCK on 23 Nov, 2013 - 11:26 pm

Hi all,

have been pain free more than 18 months, which is great but past experience
tells me the beast is not far away.

neuro has suggested a greater occipital nerve block when next bout starts.

it looks good in theroy.

would appreciate any feed back from anyone who has actually had this procedure
done and what results they had, good or bad.

thanks kim

Posted in a little off beat humor on 13 Oct, 2013 - 3:04 am

been a bit quiet , so a joke.

The phone rings and the lady answers,


'Mrs. Sanders, please.'


'Mrs. Sanders, this is Doctor James at Saint Agnes Laboratory.

When your husband's doctor sent his biopsy to the lab last week, a biopsy from another Mr. Sanders arrived as well.

We are not certain which one belongs to your husband. Frankly, either way the results are not too good.'

'What do you mean?' Mrs. Sanders asks nervously.

'Well, one of the specimens tested positive for Alzheimer's and the other
one tested positive for HIV. We can't tell which is which.'

'That's dreadful! Can you do the test again?' questioned Mrs. Sanders.

'Normally we can, but Medicare will only pay for these expensive tests once and once only.'

'Well, what am I supposed to do now?'

'The folks at Medicare recommend that you drop your husband off somewhere in the middle of town.

If he finds his way home, don't sleep with him.'

Posted in Sufferer for 10 years on 22 Sep, 2013 - 12:12 am


as someone who has had ch for more than 32 years, i have tried many different treatments, both conventional and alternitive.

SOME i have tryed are dental surgeon, acupunture, psyio, chrio, eye specialist, ent specialist, facial pain specialist, massage therapy etc etc.

they ALL claimed they could cure my ch, they all failed.

to the best of my knowledge (and i am open to correction if i am wrong here)
there have been no clinical studies that show the watson method is effictive in the treament of ch.

please check out the forum - medication and treatments - topic - the watson approach - zero validity in treating cluster headache.

yes we are a cynical bunch here, because over the years there have been many who claim that they can cure ch, every one of these claims have proved to be false.

frankly your idendtical multiple posts reek of advertising, we have seen all of this before.


Posted in Sufferer for 10 years on 20 Sep, 2013 - 1:14 am

my thoughts exactley Peter.


Posted in Another Newbie to your site on 17 Jul, 2013 - 2:25 am

hi Merl1n, (is it Merlin ?)

i don't normally do meet and greet, others are much better at it than me.

since nobody else has responded to your post, i will give it a shot.

first of all we are not doctors.

having said that , there are many very knowlegable people on this site.

on the left of screen there is a list of , cluster headache aware doctors (practitioners)

your symtoms do seem to have some CH bits. (again we are not doctors)

the first thing i suggest you do is get a definative diagnosis, a neuro is the best place to start.

knowledge is power, once you know what you are dealing with, you are in a position to take action.


Posted in Hi another uk newbie to this site on 29 Jun, 2013 - 1:07 am

G'day Peter.
you are spot on about carrying a doctor' lettter, i have done a little international travel,
always carry a doctor's letter with me, listing all medicaltion i am carrying with me and why.

been to a few muslim countries, (perhaps i have been lucky), but have never had a problem.

one time in indonesia, i whent into a cycle, totally unexpected, (had no meds with me), but had doctor's letter, fortuneatley, the hotel had an english speaking doctor, who was happy to prescripe the drugs on my doctor's letter, and have them delivered to my room.

i know quants gets a bad wrap sometimes (no i don't have shares).

one time traveling from perth to NZ (an eight hour flight, with quantas) mid flight i got hit hard,
took all the meds i had with me, they did not work, a flight attentant noticed my distress.

she was a former nurse, reconised CH and gave me 100% oxegen, to this day i regret not writting to quants to express my gratitude to this woman.


Posted in prednisone on 05 Jun, 2013 - 11:45 pm

Hi all,

i did not want to use prednisolone due to the side effects, but as you all know, when it gets bad you will try anything.

i tryed high dose's, it did not help at all.

from what i have read, it is very effective for most people.

the big problem (s) i see with prednisolone (aside from the side effects) for those it works for
are, you can only be on high does's for a short time, then when you reduce the dose, the beast returns, unless a prevenitive medication has had time to kick in.


Posted in My alternative treatment on 31 May, 2013 - 3:11 am

castor oil, all over again.

just another add for a homeopath

Posted in Sphenoplatine Ganglion or SPG block just got easier on 11 May, 2013 - 12:06 am

thanks Ben,

knew about SPG block, but had dismissed it due to problems with implemetation.
excelent research, another bow in our collective quivers.


Posted in Suffering alone in a Western Australian mining camp on 04 Apr, 2013 - 1:41 am

hey Ben,

yes sometimes you do come across as narky (i see no need to appoligise for that)
your posts are always well researched, and you usually (if not always) provide links to support what you are posting.

i to get narky (and i am not alone in this) when people post "curers" that have no basis in science, such as drinking you own urine or using castor oil.

i worry about newbies, who read some of the crap that is out there and waste there time and money on unproven and sometimes dangerous "cures".

as to having a winge i have long said "if you can't have a bitch to your friends , who can you have a bitch to"

keep calling a spade a f***ing shovel


Posted in Verapamil hydrochloride on 27 Mar, 2013 - 9:12 pm

hi Kba78,

heed Ben's advice, he knows what he is talking about.

i found verapamil very effective, after the first few days of taking it i was able to stop all pain killers.

unfortuneately after a few years use, it ceased to be effective.

this seems to be the way of CH, a drug will work for awhile then it will stop working.


Posted in I think I have the answer! on 04 Mar, 2013 - 6:46 am

come on people, lets stop the crap.

have had 1) dentist say i can fix your CH, it is your TMJ - WRONG
2) eye specialist say i can fix your CH - WRONG
3) chrio say i can fix your CH - WRONG
4) natropath say i can fix your CH - WRONG
5) massage therapist say i can fix you CH - WRONG
ect, ect.

as you may have noticed, i am pissed off with all these so called cures.

please can we deal only with scientificalty proven evidence.

after more than 30 years of CH, i am an old hand and aware of many so called cures.
what bothers me is, some of our new members will get false hope and waste their time and money on usless treatments.

end of rant.


Posted in "Breaking the Pain Chain" - Professor Paul Rolan explains how radical new approaches to chronic pain management could finally pave the way to safe, sustained relief. on 27 Feb, 2013 - 11:55 pm

Hi Ben,

i down loaded the video, was not given an option to save it.
it was down loaded into real player, but not saved.
when i tried to play it i got a message that i needed quick time to play it.
i clicked on the link to down load quick time (i noticed it was an apple site)
then tried again to play it, got the same message, repeated the process a couple of times then gave up.

i am using windows xp and internet explorer with google as my search engine.
any advice would appreciated, keen to see this video.

regards kim

Posted in JUST HAVING A BITCH on 06 Dec, 2012 - 2:12 am

Soooo tired of neuros and doctors, who no nothing about CH.

they are happy to prescribe drugs, that will trash my imune ststem, destroy my throid, liver and kidneys etc.
yet they ignore drugs (meletonin) that are more effective. than lithium etc.

if my elderly parents where not still alive, i would have pulled the pin years ago.

after 30 years of this shit , i am so over it.


Posted in LITHIUM on 05 Dec, 2012 - 1:08 am

hi all,

next bout , neuro wants me to try combination of steroids and lithium.

not keen on either given side effect profiles.
but frontline preventatives no longer work.

tried steroids before with no effect.

would appreciate any info from anyone who has used lithim,
as in, did it help or not, what if any side effects where experienced.
was it monitored properly etc. (any info).


Posted in oxygen availability on 03 Dec, 2012 - 9:33 pm

hi all,

i did post on this somewhere.

i had a mid flight CH attack while on a quants international flight.

took all the usual drugs but they didn't help.

luckily for me one of the flight attendants was a former nurse.
she suggested oxygen, i aggreed, within minuets i was on pure oxygen.
was only normal mask so didn't abort attack but did help. and it did stop.

if i had had a non rebreather mask with me am sure it would have aborted attack.

moral of the story, when flying carry a non rebreather mask with you.


Posted in a little off beat humor on 03 Dec, 2012 - 1:26 am

Statistically, 6 out of 7 dwarves are not Happy.

The Grim Reaper came for me last night, and I beat him off with a vacuum cleaner. Talk about Dyson with death.

A mate of mine recently admitted to being addicted to brake fluid. When I quizzed him on it he reckoned he could stop any time....

I went to the cemetery yesterday to lay some flowers on a grave. As I was standing there I noticed 4 grave diggers walking about with a coffin, 3 hours later and they're still walking about with it. I thought to myself, they've lost the plot!!

My daughter asked me for a pet spider for her birthday, so I went to our

local pet shop and they were $70!!! Blow this, I thought, I can get

one cheaper off the web.

I was at an ATM yesterday when a little old lady asked if I could check her balance, so I pushed her over.

I start a new job in Seoul next week. I thought it was a good Korea move.

I was driving this morning when I saw a parked RAC van. The driver was sobbing uncontrollably and looked very miserable. I thought to myself that guy's heading for a breakdown.

My neighbour knocked on my door at 2:30am this morning, can you believe that, 2:30am?! Luckily for him I was still up playing my Bagpipes.

Paddy says "Mick, I'm thinking of buying a Labrador."Bugger that"

says Mick "have you seen how many of their owners go blind?"

A wife says to her husband you're always pushing me around and talking behind my back. He says what do you expect? You're in a wheelchair.

The wife has been missing a week now. Police said to prepare for the worst. So I have been to the charity shop to get all her clothes back.

Two Muslims have crashed a speedboat into the Thames barrier in London.

Police think it might be the start of Ram-a-dam.

The wife was counting all the 5c's and 10c's out on the kitchen table when she suddenly got very angry and started shouting and crying for no reason. I thought to myself, "She's going through the change."

Bought some 'rocket salad' yesterday but it went off before I could eat it!

A teddy bear is working on a building site. He goes for a tea break and when he returns he notices his pick has been stolen. The bear is angry and reports the theft to the foreman. The foreman grins at the bear and says "Oh, I forgot to tell you, today's the day the teddy bears have their pick nicked."

Murphy says to Paddy, "What ya talkin to an envelope for?" Paddy replies,"I'm sending a voicemail ya thick sod!"

19 paddies go to the cinema, the ticket lady asks "Why so many of you?"

Mick replies, "The film said 18 or over."

Posted in Is there a Preventive Medication left that I have not tried? on 20 Nov, 2012 - 3:00 am

g'day Ben,

currently green, in recent years the prophylactics have not been working.

for awhile verapamil worked really well but not any more.
the beast seems to adapt. might be worth trying something that worked in the past that you have not used for some time.

have tried steroids in the past, they didn't work at all.

neuro has suggested next time try combination of steroids and lithium.

not keen on idea given side effects.

as you are aware, results of studies vary tremendouly,

have read recent studies that say lithium is either very effective or no better than placebo.

same for melatonin.

some research claims that melatonin (at about 10mg per day) will bring about remmission in 3 to 5 days in 50% of cases.

i recently lassed out and paid for access to a medifocus web site called CH guide book.

i have no interest in and am not promoting this (last thing we need is people trying to profit off our pain) just saying i found it usefull, was last updated 24 may 2012.

i know you have tried oxygen without success, have read accounts where very high flow rates (25 lpm) have worked where the "normal" flow rates have not worked.

all the best, kim

Posted in oxygen availability on 14 Nov, 2012 - 11:26 pm

thank you BlueDevil and Barry for your advice,should be very usefull.

my son has recentley taken up scuba diving so this opens up another option for me.

there is a great deal of confusion out there, the medical branch of boc said it can't be done.

yet my daughter rang boc canningvale and they said yep no problems and even gave her prices on bottles regulators etc.


Posted in oxygen availability on 14 Nov, 2012 - 3:13 pm

hi all,
really confused about oxygen availability here in perth.

a couple of years ago my gp (now retired) rang boc medical (while i was in his office)
to try and arrange home oxygen for me. after 20 minutes on the phone they told him there is no way home oxygen could be supplied.

have seen on here and have been told by others that you can get home oxygen.

neurologist tells me, might be able to arrange oxygen at 4lpm. up to 8lpm with a concentrator.

as you all know it needs to be 15lpm.

today i rang boc medical, initially, they told me 10lpm was the maximum flow rate and that if you require more than that you should be in hospital.
when i pressed them, they checked and said they could provide 15lpm but with there largest cylinder it would only last for 8 minutes.

prevenatives have not worked for last few cycles, so have been using lots of abortives,
clearly oxygen would be less damaging to my body.

would appreciate any current and accurate info / advice on oxygen availability in perth.


Posted in LIGHT RELIVE on 09 Nov, 2012 - 3:49 am

How old is Grandma---?????

Stay with this -- the answer is at the end.

One evening a grandson was talking to his grandmother about current events.

The grandson asked his grandmother what she thought about the shootings at schools, the computer age, and just things in general.

The Grandmother replied, "Well, let me think a minute, I was born before:

television, penicillin, polio shots, frozen foods, Xerox, contact lenses, Frisbees and the pill.

There were no: credit cards, laser beams or ball-point pens.

Man had not yet invented: pantyhose, air conditioners, dishwashers, clothes dryers, and the clothes were hung out to dry in the fresh air and man hadn't yet walked on the moon.

Every family had a father and a mother.

Until I was 25, I called every man older than me, "Sir."

And after I turned 25, I still called policemen and every man with a title, "Sir."

We were before gay-rights, computer-dating, dual careers, daycare centers, and group therapy.

Our lives were governed by the Ten Commandments, good judgment, and common sense.

We were taught to know the difference between right and wrong and to stand up and take responsibility for our actions.

Serving your country was a privilege; living in this country was a bigger privilege.

We thought fast food was what people ate during Lent.

Having a meaningful relationship meant getting along with your cousins.

Draft dodgers were those who closed front doors as the evening breeze started.

Time-sharing meant time the family spent together in the evenings and weekends -not purchasing holiday accommodation.

We never heard of FM radios, tape decks, CD's, electric typewriters, yogurt, or guys wearing earrings.

We listened to Big Bands, Jack Davey, and the government speeches on our radios.

And I don't ever remember any kid blowing his brains out listening to Tommy Dorsey.

If you saw anything with 'Made in Japan ' on it, it was junk.

The term 'making out' referred to how you did on your school exam.

Pizza Hut, McDonald's, and instant coffee were unheard of.

We had 5 &10-cent stores where you could actually buy things for 5 and 10 cents.

Ice-cream cones, phone calls, rides on a tram, and a Pepsi were all 5c.

And if you didn't want to splurge, you could spend your money on enough stamps to mail 1 letter and 2 postcards.

You could buy a new Ford for $600, but who could afford one?

Too bad, because petrol was 11 cents a gallon.

In my day:

"grass" was mowed,

"coke" was a cold drink,

"pot" was something your mother cooked in and

"rock music" was your grandmother's lullaby.

"Aids" were helpers in the Head's office,

"chip" meant a piece of wood

"hardware" was found in a hardware store and.

"software" wasn't even a word.

And we were the last generation to actually believe that a lady needed a husband to have a baby. No wonder people call us "old and confused" and say there is a generation gap.

How old do you think I am?

I bet you have this old lady in mind!

You are in for a shock!

Read on to see -- pretty scary if you think about it and pretty sad at the same time.

Are you ready?????

This woman would be only 59 years old, born in 1953!!!!!




Posted in Smell triggers? on 09 Sep, 2012 - 1:21 am

related ?

How Headache
Tree Causes Cluster Headache and MigrainePosted on 07. Nov, 2011 by Admin in
medicine, biology

Researchers have now identified the mechanism by which the
plant California laurel, also known as headache tree, causes headache and

They discovered that headache is caused when a bioactive compound
released from the leaves of this plant triggers a cascade of chemical events in
trigeminal nerves around head arteries.

California laurel (Umbellularia
californica, U. californica), a shrub indigenous to Northern California, is
known by a host of common names, such as pepperwood, spice tree and cinnamon
bush, because of its strong aromatic properties and its alleged
headache-inducing properties.

Vapor from the aromatic leaves causes sinus
irritation, sneezing and headache.Umbellularia californica, the headache

Two years ago, Dr. Geppetti and coworkers, at the University of Florence in
Italy, described the case of a gardener who suffered cluster headache for 20

Ten years after his last cluster headache attack, in three different
occasions while pruning a California laurel he had a new cluster headache-like

It was hypothesized that one or more molecules from the plant targeting
the trigeminovascular system may cause migraine or cluster headache attacks.

leaves of U. californica contain, as a major volatile constituent, monoterpene
ketone umbellulone, a compound that, when administered to laboratory animals,
produces irritating effects.

Recently, the laboratory of Dr. Geppetti found that
umbellulone specifically targets the transient receptor potential ankyrin 1
(TRPA1), an ion channel activated by mustard oil, cinnamon, wasabi and a series
of endogenous reactive molecules, and expressed in a subset of trigeminal
neurons which also express proinflammatory and vasodilatory neuropeptides.

Umbellulone, by targeting TRPA1 on trigeminal neurons, causes neurogenic and
CGRP-dependent vasodilatation.

Image provided to by Dr
Geppetti. In particular, one of these neuropeptides, the calcitonin gene-related
peptide (CGRP), released from trigeminal terminals around intra and extracranial
arteries, produces profound ‘neurogenic’ dilatation of these vessels.

receptor blockade has been reported to ameliorate migraine attacks, probably by
blocking the arterial vasodilatation produced by CGRP, and CGRP antagonists are
considered novel medicines for migraine and cluster headache patients.

observation that umbellulone, by targeting TRPA1 on trigeminal neurons, causes
neurogenic and CGRP-dependent vasodilatation, suggests this pathway as the
underlying mechanism of the headache caused by U. californica.

This conclusion
is in line with another observation from Dr. Geppetti’s laboratory, which is
that ethanol activates the capsaicin ‘receptor’ (TRPV1) (Trevisani et al. ,
2002). TRPV1, which is co-expressed with TRPA1 within the same trigeminal
neurons, releases CGRP and vasodilatation in meningeal and extracranial vessels
(Nicoletti et al. , 2008).

The mechanism identified in this study may explain why
alcoholic beverages induce migraine and cluster headache attacks. Dr. Geppetti’s
comment on this novel information is: “The mechanism, which eventually results
in the throbbing and severe pain of migraine and cluster headache, still remains
a mystery.

However, we now know that the trigeminovascular system and CGRP
release from trigeminal perivascular terminals and the resulting arterial
vasodilatation play a major role in these conditions.

Our previous and present
findings contribute to the completion of the puzzle regarding the plethora of
stimuli that trigger headache by discovering specific molecular targets that
well-known headache triggers hit to activate neurogenic vasodilatation.

Story Reference: The ‘headache tree’, via umbellulone and TRPA1, activates the
trigeminovascular system. Nassini, R, Materazzi, S, Vriens, J, Prenen, J,
Benemei, S, De Siena, G, la Marca, G, Andrè, E, Preti, D, Avonto, C, Sadofsky,
L, Di Marzo, V, De Petrocellis, L, Dussor, G, Porreca, F, Taglialatela-Scafati,
O, Appendino, G, Nilius, B, Geppetti, P (2011). Brain. Epub ahead of
print.Additional Sources: 1. Benemei, S, Appendino, G, Geppetti, P (2010).
Pleasant natural scent with unpleasant effects: cluster headache-like attacks
triggered by Umbellularia californica. Cephalalgia 30: 744-6.2. Ho, TW, Ferrari,
MD, Dodick, DW, Galet, V, Kost, J, Fan, X, Leibensperger, H, Froman, S, Assaid,
C, Lines, C, Koppen, H, Winner, PK (2008). Efficacy and tolerability of MK-0974
(telcagepant), a new oral antagonist of calcitonin gene-related peptide
receptor, compared with zolmitriptan for acute migraine: a randomised,
placebo-controlled, parallel-treatment trial. Lancet 372: 2115-23.3. Nicoletti,
P, Trevisani, M, Manconi, M, Gatti, R, De Siena, G, Zagli, G, Benemei, S,
Capone, JA, Geppetti, P, Pini, LA (2008). Ethanol causes neurogenic vasodilation
by TRPV1 activation and CGRP release in the trigeminovascular system of the
guinea pig. Cephalalgia 28: 9-17.4. Olesen, J, Diener, HC, Husstedt, IW,
Goadsby, PJ, Hall, D, Meier, U, Pollentier, S, Lesko, LM (2004). Calcitonin
gene-related peptide receptor antagonist BIBN 4096 BS for the acute treatment of
migraine. N Engl J Med 350: 1104-10.5. Trevisani, M, Geppetti, P, Davis, JB,
Bianchi, A, Harrison, S, Randall, AD, Smith, GD, Owen, D, Brough, SJ, Jerman,
JC, Gray, J, Amadesi, S, Campi, B, Barbieri, M, Tognetto, M, Gunthorpe, MJ,
Smart, D (2002). Ethanol elicits and potentiates nociceptor responses via the
vanilloid receptor-1. Nat Neurosci 5: 546-51.

just a thought, kim

Posted in Survey of effectivness of online support groups for headache disorder sufferers. on 23 Jul, 2012 - 7:51 pm

survey completed

Posted in Cluster headache and other trigemino-autonomic cephalgias. on 19 May, 2012 - 1:08 am

Hi Heather,

i am in perth wa. i have been trying to get oxegen for over 5 years. (have had CH for over
30 years)
my gp rang boc while i was in his office and spoke to a woman that used to work for him.
although she did her best the end result was, there is no way a private citizen can get hold of oxegen.
i have posted before on this topic.
a neuo can prescribe oxygen in wa.
so far i have been waiting over 9 months for an appointment with a neuro in the public system to get a script for oxygen.

rocket science is simple (pure maths). getting oxygen is much more complicated.


Posted in Red Bull on 25 Apr, 2012 - 12:54 am

Hi Heidi,

apperantly it is the combination of taurine and caffine in red bull and other energy drinks
that help.
if you go to the forums list and type taurine in the search box you will find more detailed

regards kim

Posted in on 09 Apr, 2012 - 4:52 am

Hi Shell,
you have not let anyone down, if anything we as a group have let you down.
i note there has been many views of your post, yet only barry and peter have replyed.

i suspect like me, the others just don't know what to say.

while like most men, i like to put on the macho thing, i am not ashamed to admit i had tears in my eyes when i read your post..
i was particually moved by your daughters thoughts.

i wish i had more to offer, kim.

Posted in Just diagnosed with Cluster headaches on 07 Apr, 2012 - 12:43 am

Hi Annette,

i have tried indomethacin and it had no effect in reducing the pain of cluster headache.
all the research i have read shows that it is inefective for CH.

having said that, it has been shown to be dramtically effective in other headache conditions, particually in paroximal hemi cranina.

like most of us on this site, i am not a medical practioner, just offering my personal experience and info on what i have read.


Posted in Public Service Notice on 12 Mar, 2012 - 5:35 am

we could all do with a laugh.

Newfie Medical Dictionary

Newfies have the lowest stress rate. Maybe it's because they don't take medical terminology seriously.
Medical Term
Irish Definition
Artery - The study of paintings
Bacteria - Back door to cafeteria
Barium - What doctors do when patients die
Benign - What you be, after you be eight
Caesarean Section - A neighbourhood in Rome
Cat scan - Searching for Kitty
Cauterize - Made eye contact with her
Colic - A sheep dog
Coma - A punctuation mark
Dilate - To live long
Enema - Not a friend
Fester - Quicker than someone else
Fibula - A small lie
Impotent - Distinguished, well known
Labour Pain - Getting hurt at work
Medical Staff - A Doctor's cane
Morbid - A higher offer
Nitrates - Rates of Pay for Working at Night, Normally more money than Days
Node - I knew it
Outpatient - A person who has fainted
Pelvis - Second cousin to Elvis
Post Operative - A letter carrier
Recovery Room - Place to do upholstery
Rectum - Nearly killed him
Secretion - Hiding something
Seizure - Roman Emperor
Tablet - A small table
Terminal Illness - Getting sick at the airport
Tumour - One plus one more
Urine - Opposite of you're out


Posted in Back to Red on 02 Mar, 2012 - 6:45 pm

Hi Sara,

i had a bad one while flying from perth to nz, tried the usual pain killers with no success.

i asked for a hot pack (they gave me a hot towel) i was lucky in that one of the stewardess's was an ex nurse. she actually knew what ch was. she imediatley brought an oxegen bottle and mask. while it was not a non re breather mask it still brought me a great deal of relive.

my point is, apprentley all the air lines carry oxegen. (check the one you will be flying with)

just knowing that the oxegen is available should i need it, is very reassuring.


Posted in Ultimate Price on 11 Feb, 2012 - 3:11 am

Hi Matt,
i notice a number of people have viewed your post yet no one has replyed. my guess is like me, they dont know what to say. this is a shit of a condition to have, and would put a strain on any relationship. i am no longer in a relationship, partly due to CH. although i have had the oppertunity to be in relationships, i choose not to be. this is just my view, i am disdressed enough when i am going through a bout. i deleberatley withdraw from family and friends, as i dont want to cause distress to those i love. i hope your surgery goes well. the fact that you wife is still willing to take you to appointments etc, to me says a lot.
i sincerley hope you and your wife can sort things out.


Posted in Nines ACA on 27 Jan, 2012 - 7:11 pm

i commend Matt for his effort but fear Ben is right.

don't know if it is possible, but if an agreement with ACA or whoever could be reached
where by the final piece that goes to air has to be agreed to, say by Roger, it could be a good thing.

bearing the above in mind, i think the piece should include some actual footage of someone during an attack, plenty of that on the internet.

a medico that actually gets the extreme pain that we all go through.

just my thoughts on the matter.


Posted in Untitled on 10 Jan, 2012 - 3:45 am

Hey Ben,

your are 100% right about the elephant in the room.

the suicide rate of people with CH is 200 (yes 200) times the general population.

if we are not very careful, the meds can destroy our way of life or even kill us.

from my limited research, the attacks do not stop as we get older.

from a cognitive perspective, i really miss my mind during a bout. i dont seem to be able to think clearly and my memory (usually very good) is shot.

from an emotional perspective, like everone else, i fear the attacts.
i personally isolate my self from family and friends. as disstressing as it is for me. i don't want to disstress thoughs i love.

untill recent years, i have always thought "i can deal with this".
the reality is i have decided that at a given point (don't know what that point is)
euthanasia will become the only option.

while it takes (i think ) 5 years of med school plus 7 years to become a neurologist.
they don't have all the answers.

at the risk of sounding like an arrogant prick, i belive that within 3 years i can learn enough to uderstand neurology, and hopefully make a usefull contribution to the understanding to CH.

bottom line here is, while i don't know you or any of the others on this site personally, you all matter to me.

hang in there !


Posted in on 09 Jan, 2012 - 11:58 pm

Hi Ben,

it is only recentley that i have actively started doing reseach on CH.

at the risk of sounding like a big head, i am reaonabley quick on the uptake. (even if i can't spell)

i thought if the medico 's can not solve this i will. (delusions of grandure)
i grossly under estimated the complexity of neurology.

for every clinical trial i read, i find another one that contradicts the findings.

while the conventional wisdom says that CH is an inflamatory condtition, i am not convinced it is, as mri studies show that the pain precedes the vosodilation in CH.

there is some evidence that the pineal gland is involved.

bottom line is the more i learn, the more i realise how little i know.



Posted in on 09 Jan, 2012 - 1:39 am

Hi Sara,

to answer your question (sort of).

some years ago a neurologist told me that as i get older, i can expect the bouts to become more frequent and be more servere. unfortunately this seems to be the case.

however another neurologist told me that as i get older, i can expect the serverity to remain about the same but the frequency of the bouts should reduce.

i would like to belive the second one but frankly, i don't think they know.


Posted in on 08 Jan, 2012 - 3:36 am

after the longest and most server bout i have had in 30 years i am feeling good again.

while i am very relived this bout is over, i am acutely aware that others are still suffering.

this is (excuse the language) a shit of a condition to have.

it is my ernest hope, that in the not to distance future a cause / cure will be found, so that we will all be pain free .


Posted in Inverting the head, a.k.a. The vampire bat treatment on 19 Dec, 2011 - 10:54 am

Hi all,

when i was a young fella i suffered 4 or 5 spinal fractures from a fall of about 9 meteres,
anyway as i got older i had more and more back issues. (have you noticed that no one has problems anymore, they have issues) i bought a gravity inverter and had excelent results in reducing the amount of back pain.

however i have serious reservations about using one for CH.
first, the physics would suggest it would cause vasodilation.
second is, a lot of us are on verapamil, and the use of these inverters is contra indicated
if you have high OR low blood pressure, or heart disease.

just my thoughts , usual caveat, not a health care professional.


Posted in No Brainer... on 16 Dec, 2011 - 10:48 pm

Hi Ben,

i don't know if these are available in australia, but the link below gives info on asprin suppositories.

you might be able to get them through the internet.

worth a try it guess seeing that asprin has helped you before.


Posted in new file names. on 10 Dec, 2011 - 7:04 pm

Hi all,

i to see a lot of unnamed posts and wonder whats in them.

when i am looking for info on a particular topic i go to Forums List, Search All Forums,
enter a word or phrase and hit search. This then finds and highlights all occurences of the word or phrase i am interested in.

hey Peter, luddite ? great word, the last time that was in common use was about two hundred years ago, and i thought i was old icon


Posted in CORNY I KNOW on 06 Dec, 2011 - 1:22 am

Hi all,

i am relatively new to this site.
i am not a particually emotional sort of bloke but would just like to say,
that i am continuely amazed, in a good way, at the compassion and support that is shown on this site, especially to the new members.

it is even more amazing that a lot of that compassion and support is comming from people who are dealing with other difficult issues as well as CH.


Posted in A Cure for Cluster headaches!!! on 02 Dec, 2011 - 12:05 am

Hi all,

been doing more reading on hawiian baby woodrose seeds.
apparently the amount of LSA in them various widely. anything from zero up.
apparently anything less than 1.0 mg is inefective where as somewhere around 2.8 mg will (in a high percentage of cases) abort an attack, abort the entire bout, and when taken before an expected bout prevent the bout from occuring.

so my question is, does anybody out there know of a way to messure the amount of LSA
in hawiian baby woodrose seeds.


Posted in Untitled on 29 Nov, 2011 - 9:28 pm

Hi all,

this is a difficult subject, i am sure that we would all agree that the term headache just dosen't cut it. i have had CH for about 30 years but only my immediate family and a few close friends know i have them. i learnt long ago that if you mention the word headache,
the person you are talking to, or their .relative has migraine and nothing could be worse than what they have.

the advantage of the term Cluster Headache is that more and more medico's are becomming aware of its existance.

the biggest problem is that the word headache is seen by the general public as a minor complaint.

if we are going to go for a name change it should be something already regonised by the medicos. in one research paper i was reading they refered to CH as "Trigemino Autonomic Cephaliga". to me this ticks all the boxes, it removes the word headache,
specifiys the affected nerve, refers to the autonomic factors and refers to the head.

perhaps we could use that term and perhaps add also known CH.

i thing i might start using this term instead of CH.

anyone have an thoughts on this ?

Regards Kim

Posted in SOMETHING IN THE AIR ? on 23 Nov, 2011 - 11:04 am

hi all,

currentley in the longest and most server bout i have ever had, which brings me to my point here.

just did a quick check and found 11 posts over the last few months all saying that they are having their worst bout ever.

would welcome any thoughts on why so many are having the same experience at the same time.


Posted in TESTOSTERONE on 20 Nov, 2011 - 5:03 pm

Hi all,

very interesting artical using testosterone replacement for refactory cluster headace.

i wasn't able to post the link but should be able to locate with info below

Stillman 2006
HEADACHE : the journal of head and face pain - wiley online library


Posted in No sleep = no pain??? And what are the jumpy legs? on 15 Nov, 2011 - 2:16 am


seems most of us have an attack about an hour after falling asleep, the Americans call it
"alarm clock headache".

i have had success by taking mersyndol forte or tramadol at bed time along with verapamil.

some find by sleeping sitting / proped up prevents night time attacks.


Posted in How Headache Tree Causes Cluster Headache and Migraine on 14 Nov, 2011 - 7:08 pm


i don't fully understand all the medical lingo, but if i am reading this correctly, it looks like this could be huge in regard to the developement of effective drugs.


Posted in oxygen availability on 13 Nov, 2011 - 1:56 pm


i have been trying for a couple of years to get hold of oxygen.
i have known the GP i was seeing for almost 40 years(before he was a doctor)
before he retired, i sat with him in his office while he rang BOC and spoke to a friend of his to try and arrange oxygen for me. after trying several different ways to arrange it the friend said it just can't be done.

while being treated at RPH for CH i asked if home oxygen could be arranged.
the on call neuro spent about an hour trying to arrange it for me with the same result,
it just can't be done.

the consensus among the doctors seems to be that , only a respiatorary disease specialist can prescribe oxygen and they will not prescribe it for CH.

during surgery hours i can use oxygen at the local doctors, but they don't have a non rebreather mask.

my current bout has been particularly savage and i have been in no condition to pursue it.

fortuneately my daughter (bless her (no i am not religious)) chased it up on my behalf.
after many hours on the phone and being given the run around the end result, confirmed by the deparment of health and silver chain is :
there is a list of specialists who are authourised to prescribe oxygen, neuros are one of them.
if the specialist writes to silver chain, they will deliver the oxygen to your house within 48 hours and leave it there.

i certainly hope this pans out ok as it may litteraly be a life saver.


Posted in A Cure for Cluster headaches!!! on 12 Nov, 2011 - 11:59 pm

thanks Ben much appreciated.


Posted in oxygen availability on 12 Nov, 2011 - 11:45 pm


love the oxygen happy dance.

have referal to neuro to arrange oxygen.

hope to be doing the oxygen happy dance myself in the not too distant future.


Posted in A Cure for Cluster headaches!!! on 12 Nov, 2011 - 4:38 am

Hi all,

been chasing up info on mushies etc, particuarly LSA.
as often the case one case study led me to another and so on.

apperantly the chemical structure of LSA is simlar to two CH drugs,
methsergide and DHEA,

one study i would like to look at is
the non-hallucinogenic 2-bromo-lysergic acid diethyamide as preventative treatment for cluster headache an open, nor-randomized case series.

i believe it was done by Sewell et al,from the university of NSW.
and published in CEPHALAGIA september 1, 2010 30: 140-144

the synopsis looks very encouraging.

here's the rub, it seems you have to subscribe to the site or pay $30.00 for a copy of the full artical.

i am hopping that one of our members has access to or a subscription to CEPHALAGIA,
perhaps one of our medico members.

regards kim

Posted in A Cure for Cluster headaches!!! on 28 Oct, 2011 - 3:04 am

Hi all,

the other day while waiting for emergency treatment, i actually colasped / passed out from the pain.

i have never even smoked a "joint" but am ready to try LSD what ever.

the Hawiian baby woodrose seeds look like they might be a good option.
i am worried about "triping out" as in my younger days some of my friends used drugs and i heard some horror stories about "bad trips".

i would like to try busting, using the smallest effective dose, however i have absolutley no idea as to what that might be.

i would appreciate any advice on the subject.
if it is deemed to "dodgy" to put on this site i would welcome a PM


Posted in Circadian Solstice??? on 20 Oct, 2011 - 4:57 am

Hi all,
i am the worlds worst speller (i miss spell check) so please excuse any spelling errors.

this is indeed an interesting subject. i have read various neuro case studies on line.
one stated it was clear that the futher from the equator you get the higher the instance of CH's.

another suggested that melatoin at 10 - 15mg a day could bring about remission in about 50% of patients in 3 to 5 days.

yet another stated that in early years of CH they appear to be triggered by seasonal change but in latter years attacks happen at any time of the year.

my personal experience (around 30 years) has been the attacks can start at any time of the year with no correlation to any season at all.


Posted in Pain levels on 19 Oct, 2011 - 2:17 am

Hi wrighty,

i sometimes find that a few weeks into a bout, after using imigran nasal spray to abort an attack it comes back a hour or two later much worse.

my GP gave me a drug called relpax (i think its new) apparently it works in the same way as imigran. it takes about 20 minuets to kick in. but for me i don't get a rebound attack and it seems to last a lot longer than the imigran nasal spray.


Posted in What Works For Me on 15 Oct, 2011 - 6:05 am

Hi Peter, thanks for your reply. unfortuneatly the sleeping proped up only worked the once. this is indeed a strange beast, it would seem the inverter thing would increase blood flow to the head thus making it worse. if it was not so bloody painful i would have to admire the way the beast changes to defeat a medication that worked last time.

i wasn't suggesting going back through older post, that would be a huge undertaking.
rather that if there was a forum named "what works for me", people would check it out and add what has worked for them.

regards kim

Posted in What Works For Me on 03 Oct, 2011 - 3:43 am

I would like to suggest a new forum along the lines of what works for me.
The reason for suggesting this is,

For the last couple of years I have been able to (mostly) control the night time attacks with 240mg SR verapamil. However until last night for the last 7 nights With in 30 minuets of lying down I get an attack. These attacks are relatively short and well controlled by current meds. after a couple of hours i go back to bed, but the same thing happens again, lasts all night. eventually around 6 in the morning i fall asleep exhausted.

I came across a post (that i can't find again), it suggested sleeping proped up with pillows. It worked a treat, slept for 8 hours. I am sure there are heaps of other gems burried in other posts.


Posted in Untitled on 28 Sep, 2011 - 4:09 am

Hi all,
At the risk of sounding ill informed, why don't we call it what it is, Trigeminal Neuralgia.
I know it does not cover the eposotic nature, but for some it is cronic and obviously it does not convey the intensity of the pain we all feel.


Posted in Oxygen again on 21 Aug, 2011 - 1:26 am

sorry, i know this is not a new topic, but i could not figure out how to post a question.
i am confused about how to get oxygen treatment. i have seen posts that say if you go to an ER and tell them you have CH you will be treated as a class a emergency and get oxygen immediately. in more than 30 years of going to ER's , not once have i seen a doctor in less than two hours. then i usually get given panadol. last year (not for the first time) i was taken to hospital by ambulance, luckily (in the ambulance) i was given oxygen at 15 lpm through a non rebreathable mask. the effect was dramatic, i went from a wreck to reasonably ok in less than 10 minuets.
my GP rang BOC medical (while i was in his office) to try and arrange an oxygen bottle etc, they told him that it could not be done under any circumstances.
I would really appreciate it if someone could explain how i can get hold of the oxygen and mask. suggestion, mabey we need to lobby to get oxygen available to all CH sufferers.