Hi guys/gals,
its 7.40pm in Sydney Australia and im actually really scared.

Just needed to say that.....

6th night into this crap again and about 1.5hrs sleep in the last 48hrs. Last episode was May-July 2008.

Jeff, the quote on the Forum entry page describes me to a tee - so accurate it is scary actually.

Im fine now, but finding myself drinking in anticipation of what is to come (yes i know that is bad, please don't 'mother me').

How can i drink? Well had my Imigran 1ml 20mg squirt as a preventative a couple hours ago + other stuff - yes i know, it's not what you should do, but i did. I dont touch the slightest bit of analgesic normally, headaches are very rare and i usually can cop any pain on the chin without a flinch.

But, i find myself with all the meds lined up, bottles of water, moved all the furniture out of the way for later...... i am preparing..... but i know it wont make any difference later on..... how silly is that?!?!?!?

Anyway, it feels nice to express to an e-someone who can fathom what im about to go through again.

Sorry for the rant. Preying for an easy night.....

Steve

Welcome to the board Steve, we've got several people from your side of the world on the board. Doesn't sound like you have much ammunition to fight this thing. Some suggsetions:

First off get oxygen. Instead of having to sweat how you're going to cope with a 90 minute attack, imagine breathing oxygen for 10 minutes and being pain free. 32 years of CH and it's still my first line abortive. Read the oxygen info tab on the left and ask questions! It must be used correctly or it's worthless.

Talk to your doc about some preventative meds. A med you take daily to reduce attacks. I use Lithium at 1200 mg a day it blocks 60-70% of my hits. Verapamil is a common first line prevent, Topomax also has a big following.

If you're getting a lot of wake up hits, go to your local vitamin/health food store and get some melatonin. Start with 9 mg 30 minutes before you go to bed. Many can avoid the night time hits that way. May have to increase/decrease that dosing, takes a little trial and error.

Energy Drinks. Red Bull, Monster, any containing the combo of caffiene and taurine. Chug it down at the first sign of an attck. Many can abort or at least really reduce an attack that way.

Let's get you a little more ammo to kick the beast out with!


Joe

Effective treatment of CH requires a clear structure of meds and when/how to use them. Hit-and-miss just won't cut it.

See the PDF article, below, and print out the full article which follows:




Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
====

If you have the option, find a headache specialist rather than your GP or general neurologist. This is a complex area of medicine and it requires some experience/sophistication to get good results.

Joe is on target about Verap. as a preventive. Taken at an effective dose, it will markedly reduce the intensity and frequency of attacks, for most folks. Imigran is being wasted as you are using it. And I won't "mother" you beyond saying: alcohol is self-sabotage when you are in the midst of a CH cycle.

---

Choppo wrote on Sep 25^th, 2010 at 5:48am:

Im fine now, but finding myself drinking in anticipation of what is to come...

It's not Carlton Draught, is it? That stuff would do it to a spotted dog!

Otherwise I know just what you mean and g'day from the far north. You'll find plenty of mates here and all the good gen like Joe and Bob have already passed on.

So welcome to our little club and let's all fight the good fight together.

What's with you Aussies and yer BOOZE??!!!  :D

Gee willikers.

Well Choppo, your first responder - Giuseppi/Joe - is a fella who really knows what he's talking about, so you can just about consider his words as gospel.

Stick around, check out the oxygen info link, cop some other tips and tricks, and you could find yourself getting a lot more relief and experiencing much less of the all too familiar CH terror.

WOW! It is so good to find someone to communicate with and thanks so much for your interest in helping! It means alot.
Bit of background;
39y.o., smoker, drinker. Married and 2 kids. 6'3 and 95kg and 'reasonably good health'. Small business owner (Architect/Builder)
Diagnosed finally in 2008, but i have a long history of what i used to call - "massive headaches on one side of my head (RHS) that wake me up and also get during the day when they get bad. Happens each May/June for a couple months" - yeah its a mouthful and people just look at you stunned i.e. you weirdo! and pass it off. A real party stopper! Its even harder when you mention the word C.H. and try to explain.... infact ive given up and keep it to myself. Which is why stumbling over this site is a goldmine as far as im concerned. I can express my pain with people who know more than i do!!!

In the 2 days ive been on this site, ive read and learnt so much already and i though i was an expert lol.

Joe/Bob - printed article and reading as soon as i finish typing. I REALLY appreciate it information – I really do!
Actually 6-8yrs ago i tried O2... didn't work..... BUT i just found out i wasn't doing it even close to correctly (used the little nose tubes). Tried getting medical O2 yesterday arvo (Sat) but need Prescription from GP, so it is first thing on my agenda tomorrow morning (Mon) - im really hoping for a positive experience to get away from drugs.
In 2008 i finally went to Neurologist specialising in CH (had been to a million GP's, specialists etc etc), but alas was at the end of my cycle and i just dropped the next appointments. Now a week ago the Beast returns, tried calling for an appointment and best i can do is 13/10/10 with a ‘colleague’  :( So ive been feeling rather stranded with my poor old GP who has no idea what im going through and can’t get expert advice for a few more weeks.... until now! Thanks again guys.
Current Medication
This week ive been on Prednisone 75mg x 2days, 50mg x 2days, 25mg x 2days.... im on the 6th day. So finish today... Ive got IMIGRAN 1ml nasal spray ….. copious amounts of Ibuprofen + Codeine tabs and paracetamol. On day three, I just could handle any more pain and went to GP and demanded something more hardcore – Oxycodone 5ml
My impressions of each’ this time round’.
Prednisone – I just had my first ‘daytime’ attack… 4pm-ish… a couple hours ago now. Im worried the reduction in Prednisone will bring on day-time attacks???
Ibuprofen + Codeine tabs – I take heaps and heaps but I think it actually does nothing during an attack except give me hope that it will work. I think It is actually the CH going itself, not the Codeine
IMIGRAM spray – see above… I don’t think It is actually doing anything, but im using it in hope anyway….
Oxycodone 5ml – only using after 15min of CH at night as a ‘last resort’(1 tab) – I think it works, not 100% sure as the CH lasts approx 55min – not sure if it is in my system and ‘working’ in say 30mins.
So as you can see im pretty limited in options at the moment and until I found this site, I was actually getting desperate!
Well im going armed with my new research to the GP tomorrow! (thanks to you guys) – ill let you know how I get on.
P.S. you will laugh at this, I actually gave up caffeine (Coffee) in 2008 as I thought it might be a ‘trigger’. Right now, im off to buy multiple cans of RudBull or what-ever I can get my hands on AND i have a coffee cup lined up ready to go with 10 teaspoons of instant coffee in it! 

P.S.S. Brian, im onto the XXXX these days - believe me that's different for a Sydney-sider  ;D

Geez i have so much more to say.. BUT... i though i would let all the responders know what a difference you have made to my life today.

Ive been getting increasingly depressed over the week due to the despair of what im facing for the next few months. I am a long term Aropax user (20years of well controlled depression) so the last week was NOT really welcome in my world. Plus my Dad died 2 weeks ago.... shall i go on? lol

Anyway, even though i have just been through my first day-time attack this time round and i know what faces me tonight, i have a little spring in my step that there may be options out there for me.

This hope will mean a million to me during tonight's ordeal - i really appreciate you guys!

Just another quick note - the Imigram nasal spray i actually used this afternoon when i could feel it looming - still didn't shorten the episode (i dont think).. still approx 1hr...

My usual C.H's are 80% = 1hr, 20% = 1.5hr

If Imigram WAS going to work via nasal spray, how long should it take to relieve pain if taken upon onset??

Hi Steve,

Glad that you've found this place - it will change your life  :) 

Like the others have said - oxygen is the best way I have found to abort a hit.  After many, many years of rithing in pain with this thing I now find I can sit quietly and just breath through it. 

I had a hit on Thursday night (just begun another cycle) - didn't have any 02 but you can bet I do now  ;) - used a nasal spray and a hot water bottle and eventually passed out after about half an hour. 

Now that the 02 is in the house, no fear, no avoiding bed time and I Know that 'this too shall pass'.

I'm sorry to hear about your dad  [smiley=hug.gif]

Good luck tomorrow with the GP, really do press him/her for an 02 script (with at least 15lpm).  I get mine from BOC gases and they're pretty good.  Bought myself a regulator on ebay recently and a non-rebreather mask.. so set to go.

Let us know how you get on.

Wishin you the best,

Kate in Vic

If the Imigran isn't working yet, ask for the injection form. The spray is less effective for CH and a bit slow compared to  injection.

STOP the pain meds! They only compound the problems! Need a headache doc to help you. For most folks, the Imigran injection, given EARLY in the attack, will abort the attack in 10-minutes or so. A good preventive med is the second line of defense--to reduce the intensity & frequency of attacks.

I CANNOT BELIEVE THIS!!!!
I am sitting here @ 1.17am... i fell asleep browsing the Forum and and watching the F1. Not sure what time i nodded off. Too scared to go to bed. Now get this.... are you ready???

Only and ONLY on the TRUST i have in you guys.... i 'woke up' 1am in 8/10 pain, progressed to 8+ ish. I stumbled over to the cupboard and grabbed another Endone and Imigrin spray... i didn't take it. I didn't take 8 or 10 Neuorfen+ either, i just held it all in my hand.... trusting you guys......

I grabbed a Mother 'small shot' AND a big can of Mother and chugged that stuff down - as fast as i could.... (felt like an idiot asking, but i asked Wifie to buy heaps of Mother this evening after your suggestions)

All those pills in one hand, the pain, it was soooo hard to resist..... 1.15am BINGO!!!! Going.... going ... GONE!!!! I am so happy and proud i went and woke the wife up! (she is NOT that happy believe me  ;D) BUT I didn't take any pills!!!!

You hear that? - NO pills!!!! I cannot believe it!!! A grown 39y.o. man that excited about such a 'small step' in pain relief. Im almost crying....

Its actually 1.40am now and i feel like i have just taken 2kg of Cocaine (LOL) i.e. im not used to this caffeine. I don't care, no pain within 15-20min... i cant believe it  :)

You guys are life savers!

I have multiple rounds of Mother in the fridge and for the first time in a week, im almost confident to go to bed. Not that i can now because of the caffeine...... and the heartburn that stuff brings on  ;D

I am so happy for a change

Yay for your energy drink success!!!  :) (I'm assuming "mother" is an energy drink - I haven't seen that brand in the US).

Joe will be ecstatic - I bet he owns stock in energy drinks.  ;D

I'll echo what Bob said about imitrex - if you're going to use it, injectible is definitely the most effective. here's a critical tip for how to extend imitrex injection doses: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

And since I don't believe anyone has mentioned it yet in this thread, there's a natural preventative that some CH folks are finding to be more effective than any drug. I remember we even had one guy on here who went and picked some rght on his own property. :o

It is psilocybin, and this is not a joke - Harvard medical et al are recognizing it's potential and launching trials, there has been plenty of major news coverage, but most importantly, we've seen folks with really severe cases that weren't responding to any med find some impressive relief with it. That said, I don't know that it is the solution for everyone, but here's a video talk on the subject by one of our fellow CH'ers: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Very glad to see that you're already turning the corner in dealing with this beast Choppo!  [smiley=clap2.gif]

Not to winge (well maybe a little), but 4.05am here and just awoke to the torture cycle again. A 9/10 on my scale.

I am amazed how quickly i 'forget' about the extreme pain that only subsided 10mins ago.... i know it was extreme, but i must have some coping mechanism that locks the extreme memory away somewhat ... does that make sense?


BUT the good news which is keeping me going ATM - once again i resisted the drugs (somehow) AND hooked into the 'Mother' energy drink again. This is now my diversion/ challenge during each C.H. - to BEAT IT, to WIN against the pain.

I WON! I am so proud. Exhausted, but proud. That is now twice in what, 5hrs or so that i beat it. Whilst i know eventually i will succumb to some medication today (until i can get some O2 and/or better meds) just to get some precious sleep, i have reached a milestone thanks to you guys.

No idea how long that went for but probably around 20mins??? Man that was draining! Had thoughts of going to Hospital that time.

Just to make sure im not overdosing on energy drink, the following is what i took each time.

1 x 150ml concentrated small 'Mother' can = 48mg of caffeine/ 1200mg of Taurine
1 x large 500ml large can of 'Mother' = 160mg caffeine/ 2000mg Taurine

So total of 208mg Caffeine and 3200mg Taurine within say 2 mins.

To be honest, i now feel quite nausious, but that is welcome vs. the Beast.

Is the above too much of each????

EDIT: Just vomited the Energy drink  :-[ I think ive had a bit too much

Choppo wrote on Sep 26^th, 2010 at 2:31pm:

EDIT: Just vomited the Energy drink  :-[ I think ive had a bit too much

It was more likely the XXXX what done it but great to hear that you reckon you're on a winner. It's now just a matter of practice and O2 so let us know how you're getting on.

Note also that the only good things ever to come out of Victoria are Vic Bitter and the Hume highway.

Choppo, I'm not exactly an expert, but that sounds like about twice as much energy drink than most here will imbibe in.

Can't blame ya for tryin' though - clearly that's a bit of a desperate situation you're in at the moment.  :(

G'Day Chop
Welcome to the nut hut.
Looks like your learning real quick & glad the energy drinks are doing the trick.
As others have said go hither for the oxygen, for many it works a real treat with no side effects & is comparitvly cheap.

Cheers
Barry up north

Hi there Choppo.  Couple things I thought might be helpful as I read your story, if you're still looking for some advice from your cluster friends:

Eventually the nighttime caffeine will kick your butt.  Sounds like it already is.  Caffeine is not a great tool for you nighttimers, save it for the day.

Try the melatonin regime suggested earlier.  Also, "Kilowatts" mixture of kudzu etc is somewhere on this site and may be something to try too.  These herbs have been successful for many nighttimers and should be better for the rest of your body.  Worth a serious try.

I think Bob summed up my thoughts on alcohol during a CH cycle.  Drink if you want to endure the extra pain later.  No mothering, just a one-for-one trade.  If most of us drink during the cycle we will pay the price later, bigger attacks.  If you have that reaction then it is simply a choice you make.

Oxycotin, ibuprophen, etc don't work for most of us.  If they are not working for you stop taking them before you get addicted or your stomch tears apart.  Another choice to make, but success on those drugs is rare from what I have read and tried.

Now on to what I would do (if you are still reading my non-motherly cluster advice column): 

Caffeine during the day at the slightest twinge of attack, as people have described already.

Melatonin at night and look into Kilowatts herb mix.

Get your oxygen immediately and hook it up exactly as described on this site.

Look at Clusterbusters.com for alternative treatments that are not prescription, will act as a preventative and work really good for many of us.  2 attacks in the last 2 years for me when I would normally have had about 120.  Watch the "vimeo" described above for more details.

And while you are getting rid of the suicidal alcohol during your cycle, drink more water and eat to foster overall health during this time of painful attacks.  Some people claim benefits from those things. 

Sorry to be logwinded Choppo, but I think you can beat this thing back to a dull roar.  I am hoping you don't come out of it with other problems due to ineffective medications. :(

Good luck and we are here if you need us. ;)

--Shaggy :)

ps, 26 year sufferer, no pharmaceuticals so I can't help on the presciption advice.  I go without, works good.  Get some sleep.

Quick update for every one. Yesterday i was just completely demolished, exhausted and a dribbling mess. Let alone the depression  :-[ Got about 1 hr sleep between 5.30am - 6.30am... but, tried to turned the day into a positive which is very important for me.

Got the O2 prescription from my very helpful GP!!  :) It was late yesterday, so i couldn't get the actual bottle until today which i am really looking forward to. He was actaully very weary and advised it could be very dangerous, but at this point i know more about this stuff (thanks to you guys  ;)) and sort of said 'give it to me' lol

I have an Ambo friend, who dropped over several masks/non rebreather items. One is like the green one shown in the O2 thread (with the green 'football' under) so i will play with all that when the O2 gets here.

As an aside, BOC Oxycare only supply kits for hire with the nasal cannula. This is what i had 4 or so years ago and didn't work (i now know i wasn't doing it right!). If this works, i will be forever grateful for the O2 thread  :).

Spent hours on the phone/internet trying to find a specialist to see. I have a referral for Alessandro Zagami who seems to be a gun, with headaches at least.... he will be better than the general neurologist i have an appointment with in 3 weeks anyway.

Now for the best news, i had 8hrs sleep! Maybe the Beast just felt so sorry for me  ;D. I dared to go to bed at 7pm and slept till 3am!! Yaaaaay!! Feeling heaps better.

Not sure if this was co-incidence, but i purchased and took;
- Magnesium tabs
- Calcium tabs
- Melatonin - i notice this is a Magnesium compound too

And for all those who suggested it, i DIDN'T TAKE;
- Alcohol  :D :D
- codine/ibuprofin etc etc
- Endone

I think the Magnesium/ Melatonin might be good in the future for my 'restless leg' i get periodically too. So i might keep these as permanent suppliments.

One thing that became a stark reality yesterday. There is NO immediate help in Sydney for C.H. sufferers. None, nil, ziltch..... thankgod i found this website and you all are nice enough to help me through!!!!
Thankyou, thankyou!!!!!

final edit - to all that have posted - i am reading every one of your posts, multiple times actually and each new post gives me hope. If i dont directly respond to your post, please dont think i have disregarded your comments/advice. They have been extremely helpful and again, i read every post multiple times. Im long winded enough  :) so i thought i would try to keep my posts to combined responses reather tahn individual replies  ;)

I think there’s something to this caffeine thing. I just started another cycle last week so they are short attacks right now but as you all know they are going to intensify as the weeks and months go by. Near the end of my last cycle which was 6 years ago I would take a heaping table spoon of instant coffee and mix it with a half a cup of warm water and drink it black, the pain went away sooner, as I said this was near the end of my last cycle so I don’t know how effective it will be in the long run, but will try it again this time if need be. I don’t care if it keeps me awake because as you know you can’t sleep with the pain anyway. Lots of good reading on this site which I just found today, so I will have lot’s to read on those nights anyway. I am 55 and have had CH’s for 45 of those years. My longest remission was 6 years June 2004 until now, I thought I was over the horror but I was wrong. There are a lot of good ideas here and if someone said eating dog dirt would stop the pain I would get a dog and life would be good ha ha!! Right now I’m trying the water, water, water method as suggested by Margi, it seemed to hold off an attack I was having this morning. I have not tried the oxygen yet as a treatment, can’t get in to see my doctor until 19 Oct, but it worked last time I went to the emergency for some relief. Usually I just put up with the pain and wait it out but at the end of a cycle for me it is unbearable and they don’t relent for hours even with the coffee hit, so I end up going to the hospital and from what I can remember they are usually over shortly after that.
Bud

Bud wrote on Sep 27^th, 2010 at 4:44pm:

I think there’s something to this caffeine thing......... I have not tried the oxygen yet as a treatment, can’t get in to see my doctor until 19 Oct, but it worked last time I went to the emergency for some relief. Bud

G'day Bud,
welcome to the site - ive only been a member for a week or so, but WHAT A WEEK!

2 things i knew nothing about before getting here was;

1: The Caffeine/ Taurine - RedBull energy drinks etc. Ive tried it 4 times now and worked a charm!!!!
2: O2 - i tried this with the nasal canular thingy years and years ago... no good.... BUT i was doing it wrong!!  ::)

For you and the others who have been helping me out, great news. I got the O2 set up, got a CH around 7pm, slammed an energy drink, got stuck into the O2 for the first time properly (BUD - Pleeeeaaasseee read the yellow tab over to the left 'oxygen info' - its the best thing you will ever do!) and guess what - i zapped that mother outta the park within 20min  :D :D Gone, completely dead and no residual headache either... probably because i wasn't prodding, poking, rubbing etc etc for so long.

Man im happy - even though im facing more CH tonight, i have a weapon (or two) i can say actually work! Im not scared anymore  ;)

All this in 1 week (or thereabouts)... all from this site and it's Members. Ive been to hell and back over the years without direction nor medical assitance, as we all have, but i now have a direction and weapon to fight the Beast with.

To be honest, i didn't believe the energy drink thing, nor really the O2, but don't stuff around another day longer - go get em both ASAP and just give it a go - it works for me (i hope it keeps working) and im the biggest skeptic around

Excellent news !!!    [smiley=shore.gif]

As you know i like to have a chat, so ill let you know my first time O2 experience.

Initially tried the basic non-rebreather mask as per the O2 thread. 2 problems for me;
1. the 'bag' doesn't fill quick enough (i only have a 15ltr/min reg)
2. i must have a large lung capacity, as even when the bag fills, i can inhale the entire amount with easy and constantly looking for more. I found by taking slower breaths i could fill my lungs, but i want to get that stuff into me quick! I need a demand valve set up  8-)
3. the one way valve for exhalation isn't real good - i could tell i was contributing 'dirty air' back into the bag. I ended up taking a breath, then taking off mask (whislt it refills the bag), exhaling away from the mask, trying to put the mask back on and seal correctly for the next breath - not ideal, but i got the hang of it and as a starter effort, i got it to work pretty damn good.

I have since rigged up a different unit (like the one with the green bag in the O2 thread) and made it completely and 100% efficient. I pride myself as A+++ handyman  ;) so ive got this sucker worked out. Nothing but 100% O2 coming my way next time, and i can keep the mask on my face. The mask has a great seal on it too.....

OK, a quick highlight. Damn you guys for not telling me this. I got snot all over the place  ;D It was dribbling out everywhere and once the pain subsided, i realised i had a great pool of it inside the mask  ;D ;D Hazards of O2 therapy i suppose  :)

Anyway, off to reseach for a higher flow reg and demand valve mouth piece set up....

P.S. im going to get a smaller O2 set up for the car AND carry a couple cans of Mother energy drink in the glove box so when i return to work im all set (another tip i got from this site). Not looking forward to the warm energy drink from the glove box when the time comes though  ;D

Kate in Oz wrote on Sep 26^th, 2010 at 9:10am:

Hi Steve, Glad that you've found this place - it will change your life  :)  Like the others have said - oxygen is the best way I have found to abort a hit.  After many, many years of rithing in pain with this thing I now find I can sit quietly and just breath through it.  I had a hit on Thursday night (just begun another cycle) - didn't have any 02 but you can bet I do now  ;) - used a nasal spray and a hot water bottle and eventually passed out after about half an hour.  Now that the 02 is in the house, no fear, no avoiding bed time and I Know that 'this too shall pass'. Wishin you the best, Kate in Vic

Hi Kate - believe it or not these ^^^^^ words have been embedded in my mind - that my fear might go away one day. Im cautiously say it HAS. The CH have not gone, nor will it ever i suppose, but the fear of sleeping and the hopeless-ness have gone.

Thankyou. Thankyou all

BTW Kate - do you have the Ebay link of what you purchased???

Barry_T_Coles wrote on Sep 27^th, 2010 at 2:08am:

G'Day Chop Welcome to the nut hut. Looks like your learning real quick & glad the energy drinks are doing the trick. As others have said go hither for the oxygen, for many it works a real treat with no side effects & is comparitvly cheap. Cheers Barry up north

G'day Baz,
good to hear from another Aussie! Funny you abbreviated my nic to Chop... all my mates call me that lol!

Im onto that O2 mate, going hard at it! Good to hear from you.

tks
Steve (i mean Chop  :D)

P.S. im dying for a stubbie  8-)

Quote:

P.S. im going to get a smaller O2 set up for the car AND carry a couple cans of Mother energy drink in the glove box so when i return to work im all set (another tip i got from this site). Not looking forward to the warm energy drink from the glove box when the time comes though

Hey, Choppo. Now you're talkin'! Doesn't it feel great to have an arsenal against the Beast? It's time for you to kick it's butt for a change. And while you're at it, don't forget to look into the preventatives we use around here. They can go a long way to helping you kill a cycle sooner. Great news. Blessings! lance

wimsey1 wrote on Sep 28^th, 2010 at 8:13am:

Quote: P.S. im going to get a smaller O2 set up for the car AND carry a couple cans of Mother energy drink in the glove box so when i return to work im all set (another tip i got from this site). Not looking forward to the warm energy drink from the glove box when the time comes though Hey, Choppo. Now you're talkin'! Doesn't it feel great to have an arsenal against the Beast? It's time for you to kick it's butt for a change. And while you're at it, don't forget to look into the preventatives we use around here. They can go a long way to helping you kill a cycle sooner. Great news. Blessings! lance

G'day Lance,

thanks for taking the time to post  :)

RE: Preventitives, ATM im trying to go off all Meds. Sticking with the Magnesium/ Melatonin (weak stuff).... i found the Sumatriptan was scrambling my brain a bit and if i can get away without any of the 'serious' preventitives, ill be happy as Larry.

None of my above intentions are stopping my reseach though on EVERYTHING - i need to build that arsenal up... hell im at war with this Beast!!!

GREAT to see Choppo that you're showing the beast whose turn it is now for some punishing counter assaults.   8-)

Sounds like you are very much on the right track.  :)

bejeeber wrote on Sep 28^th, 2010 at 2:28pm:

GREAT to see Choppo that you're showing the beast whose turn it is now for some punishing counter assaults.   8-) Sounds like you are very much on the right track.  :)

Hi Beej, yep im angry at 'it' now. Im going to beat the Beast into submission!
BTW - as an update, my new O2 set-up with 'modified mask' works a treat! Get this - terminated an attack in a record 12mins at 1am  [smiley=biggrin.gif] The more pure O2 you can get, the bigger the breath the better result im finding so far. The notes on MUST having 100% O2 each and every breath are suddenly becoming crystal clear. If i mess up a few breaths, i can feel it....

Choppo wrote on Sep 28^th, 2010 at 7:46am:

P.S. im going to get a smaller O2 set up for the car AND carry a couple cans of Mother energy drink in the glove box so when i return to work im all set (another tip i got from this site). Not looking forward to the warm energy drink from the glove box when the time comes though  ;D

Given the choice of a warm energy drink or going without, the warm one wins any time. And if you chug it fast enough you can't really taste it anyway.

It's great to see the difference in your posts from the first to your latest ones. It's great to be back in charge and not have the beast controlling you.

Choppo wrote on Sep 28^th, 2010 at 3:43pm:

...my new O2 set-up with 'modified mask' works a treat! Get this - terminated an attack in a record 12mins at 1am...

SWEET!  :)

Just another quick one - to give newbees like me some hope if they are looking at this thread in desperation. The O2 is working.... 7.30am here, just got another attack. Got to the O2 fairly quickly i.e. just before the piercing eye pain started (i need to get to it earlier!!!) and truely 10mins i reckon till 100% gone.

Mike NZ, yep im a changed man and no longer desperately depressed - all from this wonderful site!!!!

Choppo wrote on Sep 28^th, 2010 at 7:46am:

P.S. im going to get a smaller O2 set up for the car AND carry a couple cans of Mother energy drink in the glove box so when i return to work im all set (another tip i got from this site). Not looking forward to the warm energy drink from the glove box when the time comes though  ;D

Hi Chop
That's a good move; I have the same a C size fitted into a plastic tool box & a D size for home, although I haven't needed them for over 2 years now there's no way I'm gonna return the bottles to BOC, the annual rental I pay is good insurance that I have the weapons I need if I take off into a high cycle any time.
As for the energy drink you could try using one of those cheap foam eskies & a couple of freezer bricks to keep them cold, I carry mine in a 8 litre Engel fitted to my 4x4 that is part of my remote workers fit-out ( I work an area from Onslow to Wyndham that's about the size of the state of Queensland) so I need something a little more permanent.

Both of my regs go way over the 15L/Min so I can go up or down as needed & having a beard I cant use the mask so I breath straight from the bag.

Cheers for now
Barry

Quote:

Not looking forward to the warm energy drink from the glove box when the time comes though

YO Chop

I use red bull my self cos it's sparkling , not fizzy , so I can get it down me even when it's warm out of my van .

call me weird but I actually prefer the taste when it's warm.

Glad to here your getting some relief from the beast , this is a good place to be isn't it.

God bless

Nigel

Here is the link... START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

paid $126 and it only goes up to 15lpm but it suits me fine and in the end cheaper than monthly rentals - I don't suppose my CH is about to up and leave any time soon (been over 20 yrs so far).

Great to hear you've been giving the beast a hard time!!

Kate

Hey Chop,

     Glad to see you are armed and ready to fight. I also am new here and just stating another cycle, not to bad yet but as you know, that is going to change. I have the prescription in for lithium; O2 is on the way, still looking for a back up abort but energy drink sounds good. My arc of fire is 360 degrees and I’m ready to send that demand straight back to where he came from.

Good Luck
Bud

do the cycles go along with spring,summer, fall, and winter?  when do you know a cycle is over? hope that doesnt seem like a stupid question  i really miss my after work beer but im worried the beast will take my head off

roughneckjdb wrote on Sep 30^th, 2010 at 5:59am:

do the cycles go along with spring,summer, fall, and winter?  when do you know a cycle is over? hope that doesnt seem like a stupid question  i really miss my after work beer but im worried the beast will take my head off

No stupid questions here, Bud. We've all asked ourselves and others this. Unfortunately, the answer is: you know the cycle is over when it's over--no more pain, no more hits. Yes, they do seem sensitive to seasonal changes. And many of us become familiar with the cycle winding down patterns. Some fade gradually, some build to a crescendo and then quit. You'll get to know yours. And unless you want the hits, I'd stay away from any alcohol until you're sure. lance

Hi guys,
just a quick update. The Beast is in full swing now. Last couple days has been;
Midnight, 2am, 4am, 8am, 3pm, 7pm, 9.30pm midnight, rinse and repeat. So thats 7-8 per day! Trying to get a sleep before the 9.30pm and between 9.30pm, midnight, 2am... then just stay awake till 8.30pm again. Bloody tired  :-[

On the Seasonal thing, i remember mine have usually been as the seasons change to Winter.... this time around we are going into summer. I won't attempt to work out the logic of that  ;D

O2 - i am desperate for a Demand Valve System. I am currently renting the same as what Kate has. It just doesn't flow enough and is quite frustrating having to wait between breaths for the bag to refil. I can feel a bit of progress in pain, then it fades off again unless i ge the timing 100% correct which is very difficult. the demand valve i will really be able to hook into that O2 properly.

Energy Drinks - going through min 1Ltr a day at the moment  :o

So, ive jsut purchased 2 x demand valve set ups from you Yanks  :D Wired teh money yesterday and it's still going to be a week min before it get here - i can't wait!!!! I can (and did) buy 2 x real quality ones from the US for the same price as 1 x average one here in Aust.

Used up my first bottle of O2 in what 3 days. 'D' size 4100Ltr. Very un-easy feeling when you run low during the night....

But im sticking in there  ;)

Hi Chop,

Sounds like you’re getting the beast whipped but watch out, there could be a lot of O2 situation around, don’t want to here you went out in a flame of glory, take care.

Hi Lance, I think your reply is for roughneckjdb or do you call your friends Bud like Chop calls his friends Mate.

Bud

Damn that spell checker it has no idea what I wanted to say, that was saturation….

Just a double check on this..... (and yes i am a smoker  :(), after O2 therapy, i walk around 'padding' my clothing to rid the O2 saturation. When i do smoke, it is outside on the verahdah, no where near the O2 'therapy centre' i.e. Laundry  :)
Anything else i should do? (besides give up the smokes you smartie pants  ;D!!)

Hey, Chopster. regarding buying gear from Yankland, it's likely the fittings will be different (and probably on the wrong side).

Otherwise, bloody good luck and you can phone me anytime on 0406 068 295.

Cheers from the north.

Hi Chop,

     Yes, I used to work for a company called Air Liquide, Industrial gasses and welding supplies, they also fill medical oxygen cylinders, so I know a thing or 2 about the subject. O2 is an inert gas that means its non flammable. The danger is any flammable substance saturated with O2 will become highly flammable. I myself, once I get the O2, plan to have a robe to ware in the room where the O2 is. I to go out and have a smoke now and then so I will take off the robe and put something else on and wait outside a while to ensure there is no residual O2 on any other clothing. Use caution if you have gas appliances with a pilot light or open flame, don’t pile clothing that may be saturated with O2 in the laundry room near a gas hot water heater for example. Use common sense and extreme caution.

Be Safe
Remember…….Flammable substance + O2 + open flame or ignition source spells DANGER
Bud

Hi Chop.  1 liter of energy drinks??  zoinks, that's a lot.  Any luck with the melatonin or other herbs?  They can be more a preventative and then use oxygen as the abortive.

Also, any thoughts on the cluster busters stuff?  Works as a nice prevent also.

Good luck! :)

--Shaggy

Bud wrote on Sep 30^th, 2010 at 6:24pm:

Hi Chop, Sounds like you’re getting the beast whipped but watch out, there could be a lot of O2 situation around, don’t want to here you went out in a flame of glory, take care. Hi Lance, I think your reply is for roughneckjdb or do you call your friends Bud like Chop calls his friends Mate.Bud

Ooops. Sorry about that. :-?

[/quote]
Hi Beej, yep im angry at 'it' now. Im going to beat the Beast into submission!
BTW - as an update, my new O2 set-up with 'modified mask' works a treat! Get this - terminated an attack in a record 12mins at 1am  [smiley=biggrin.gif] The more pure O2 you can get, the bigger the breath the better result im finding so far. The notes on MUST having 100% O2 each and every breath are suddenly becoming crystal clear. If i mess up a few breaths, i can feel it....[/quote]

Now that is some real good news!!

Peace & Blessings
LadyLuv

hi guys,
bit of an update.... getting smashed at night ATM. Bed 9pm, 1hr sleep then BANG... stay awake for a couple hours.... sleep 1 hr then BANG... awake for a couple hours etc... Im getting max 4hrs sleep a night interrupted by the awake periods. Interesting it is within minutes of 1hr everytime that i sleep before the next wake-up. Once it gets to 3am, i just stay awake and play internets. The Beast doesn't like it when im awake at this time of morning as he seems powerless with my enegy drink  8-).

Still getting the odd day time hit too, but more random and yesterday i didn't get a day timer but day before got 2.

Am still taking Magnesium, Calcium, MultiVitamin and up to 3 Melatonin 1/2hr before bed. I succumbed to an Endone at 9-ish last night and another at 1am or 2am. Didn;t really do anything, but i was desperate at the time  >:(

To be honest, the BEST abort im finding is the Energy Drink  :o i reckon a 10min abort.... however i am using with O2, so it could be the combination. The Energy Drink just 'feels' like its the one that is working.

1ltrs of Energy drink... YEP  :D. They are 500ml cans and im chugging down at least 1/2 per attack... so pretty easy to clock up 1 ltr of the stuff.

Interesting little side note, the last two attacks in the mornings.... say the 3am one and if i try at 7am for a nap.... the wake-up pain is NOT massive and im generally able to use NOTHING for it to go away within a few mins. Just get up real quick and 'pretend' to be really awake, move around, look at lights etc. Seems to work for some reason???

On the O2, ive got a spare Oxy reg hanging around so hooked that up to the bottle and got rid of that pissy 15L/min reg. I can get 10000L/min if i wanted now  ;D ;D. the great thing is i can regulate very finely the flow rate each 30sec to the damand required. The mask still sucks somewhat, but will be fixed when i get the new one/ demand valve.

Noted comments RE: you backward Yankees with weird threads on gas equipment  ::) ::) Im sure ill get a converter or similar to make it work - will keep you posted.

Hi Chop,

     It’s Saturday morning here in the great white north, I live just north of Toronto, Ontario, Canada, going into winter and the snow is coming, it always does and you can’t stop it. My cycles always start in the fall, I wonder if I go to Australia in October and stay for 6 months I could avoid the attacks. Hmmmmmmm! We are total opposites geographically but we have a lot in common here, What you said, (Re: Just get up real quick and 'pretend' to be really awake, move around, look at lights etc. Seems to work for some reason???) I do the exact same thing.

Poor an energy drink into you favorite (MT) beer bottle and I will do the same
Hold it up and say “Cheers”
Have a G’day Mate
Bud

THE BEAST IS GONEEEE!!!!! Kicked his ass outta here! How, well here is my theory this time round.
Doing heaps and heaps of research on the internet on CH, Tension headaches, migranes etc etc, they all seem to link back to Seritonin in one way shape or form.... now, you will note from earlier in my posts, i am a life-time taker of Aropax (paroxetine) for my depression. 1 tab a day keeps that at bay just fine. But i noticed one of the prevents for CH may be taking anti-depressants.
Out of the blue, i also remembered that the last episode a few years ago happened after i tinkered with my Aropax dose with my shrink....
So anyway, i get this brain storm... why not double my Aropax dose? A normal dose is considered 2 x tabs daily anyway. Hell, give it a go... WOW - CH GONE!!! In 1 day. Even had a couple hundred beers to test the theory :D
I am sooo happy to sleep finally, i spent the whole day in bed today, sleeping, snoozing, napping... so sweet it is  :)

So fingers crossed here! Ill let you know how i go over the next few days

It's great to see a post like this. Just go back and look at your first post in this thread and see the difference.

Serotonin really does seem to be one of the key chemicals involved in so many things that affect the brain and central nervous system, but then that should be no great surprise since it is one of the main neurotransmitter chemicals.

Nortriptyline / amitriptyline are sometimes used as CH preventives and they are also antidepressants, so the Aropax may be working in a similar manner.

I'd let your GP know that you've changed dose as it may have some other impacts, but preventing CHs is a pretty good side effect.

I'd also wait a bit longer than a day to be sure that the Aropax is stopping all the CHs as most preventives don't stop all CHs.

And the beer test isn't perfect. I've found that I can drink beer and single malt whisky without a problem, but the alcohol in a hand sanitizer will trigger a CH.

Thanks Mike! Yeah, hope im not being premature  8-)

Just as good is i dont have any shadows either... very strange.

The additonal tab has helped my overall depression too. Im looking forward to getting a bit fit now for Summer and generally i feel miles better within myself  :) Ill keep you guys updated over the next few days

That’s awesome news Chop,

     Still haven’t seen my Doctor yet but have an appointment this Thursday, going to tell him your story RE: THE BEAST IS GONEEEE!!!!! Among other things. I hope this works for you. Yes, please keep us posted.

Feeling real good for you, and a little jealous….
Bud

Everyone on this board lives for success stories Choppo, that's great news! [smiley=sayyes.gif]

Joe

Hmmmm... i know there were many more experienced than me wondering about my 'wonder cure'  ::).
Seems not all is 100% in Chop land... 2 days complete relief, but today went to work, came home and had 4 beers... now im rating a 5/10 on my scale. Grabbed the old faithfuls, the energy drink and O2.... not too bad comparatively, but the Beast aint gone... yet  >:( Lulled me into a false sense of security  :-[

It's still an improvement but nothing is perfect.

And you've got your old faithfulls to hand (just sent the beast away with them myself).

Keep trying and hopefully you'll find something that works just great for you.

Quote:

came home and had 4 beers

Just a thought, but you might really want to avoid the "beer test" until you're really sure the cycle's done. It all depends on what price you're willing to pay for the cold one. Know what I mean? Blessings. lance