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29 Aug, 2010 - 1:35 pm

hi all , finally i have found a site full of useful information ! Im a 43 year old male who has had ch for the last 20years or so . Im lucky in that my episodes are about 18 months to 2 years apart , though smack bang in the middle of one now ( 3 weeks in and counting ) i certainly dont feel like i have won lotto . Im doing the 'waking up on the hour every hour ' thing at the moment and i fear sleep like you wouldnt believe (well , most of you would believe it ). Aspirin , who would have believed it ! 600mg gives me short term relief until the imigran fast release tabs work their magic . Even then , relief is fleeting . Why at night ? This i would like to know . I also use the nasal spray , but i was using too many and was told by my doctor to be prepared for a stroke . Nice . Anyway , its nice to find a site with other people cursed with this nasty thing . I am not alone . Thanks .

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30 Aug, 2010 - 5:47 pm

Hi Sean,
Welcome to the club no one ever wants to join! That being said, I saw on your other post that you have a Drs appointment coming up soon, you need to talk to your doc about a 2 pronged attack on these attacks. A good prevent and a good abortive. Verapamil and Lithium are popular prevents.( A med you take daily, while in cycle, to lessen the number and intensity of your attacks). Prednisone, a steroid, is often used as a transitional therapy whilst the preventatives kick in. For abortive's, please read the oxygen info link on the menu. Turns a 90 minute attacks into 6-8 minute attacks but it must be used at the correct flow rates to be successful. At least 15 litres per minute (25 is preferable) through a non-rebreather face mask, A real life changer for most who use it. We se a LOT of Chers being prescribed pill form of imigran even though it is generally ineffective. The injectable form on the other hand kicks in strong and quick. Imigran injectables are a life saver they abort most attacks within 3-5 minutes, they can be split into 2 or even 3 from one 6mg ampule, it's a trial and error process but it will save on the cost and also allow you to treat more attacks. Energy drinks such as Red Bull with the combination of caffine and taurine chugged at the first sign of an attack many can abort a full attack or at least reduce the intensity for you, another great emergency abort.

Some CH'ers have been reporting that "busting" has shut down entire cycles for them cold. It's an approach that is making quite a splash - here's a video talk by one of our fellow CH'ers on the subject:

http://vimeo.com/10918637

or for alternative therapies check out:

www.clusterbusters.com

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002) :

http://www.plainboard.com/ch/chtherapy.pdf

Here is one for high flow oxygen for the Dr also:

http://www.mhni.com/faqs_high_oxygen.aspx

ALL NEW!! HEADACHE 2008-2009, The new 72 page Headache 2008-2009:

http://www.headachedrugs.com/

The people here, their information, experience and support are truly awesome! May your journey through life be a little easier now that you have found this wonder. Please read all you can, information is power. Goodluck with it all and if you ever need to chat just drop us a line. Hope this is helpful!

Regards Shell

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31 Aug, 2010 - 9:11 am

G'day Sean. Like Shell said- welcome to the club we'd all gladly not be in. How's Vic Park these days? I used to live down the road in St. James, many moons ago.
One of the treatments you're not allowed to know about is the Dihydrogen Monoxide ( water) treatment. Basically you just drink a glass of water every time you go past a tap. It seems to reduce intensity and frequency in many sufferers, me included. You're not allowed to know about it because the character that owns Cluster Headaches in the U.S. wants to make money from having it on his site. Just make sure you keep up your vitamin and mineral levels as they get leached by so much water.
As for other stuff, I also use the Imigran tablets, as no jabs are available here in Russia. They work fine for me. I've done Verapamil and Lithium and won't touch them again- just didn't agree with me. And Prednisone- I'd rather eat someone elses nostril hair than touch Prednisone Really nasty.
Good luck to you, i hope you find something that works.
cheers peter.

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31 Aug, 2010 - 9:13 am

Hi Shell. What's "busting"? I've got no way of watching (or hearing) that.
cheers peter.

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31 Aug, 2010 - 2:20 pm

Hi Peter,
Busting refers to ending the cluster headache cycle, some people have not had a cycle for over ten years since they first busted! Harvard Medical have been running studies with some fantastic results and the folks over at cluster in conjunction with leading neurologists are applying for FDA approval in America so these treatments can be legalized for use with cluster headaches. There are some legality issues but for us here in Aus it is legal to buy, sell and possess just not consume, so to actually get into any trouble you would have to be caught ingesting the treatments. Also there is very little risk of the treatments showing up on Blood tests. There is heaps of info on it at clusterbuster.com, the main ways this is achieved is through Psyclobin= mushrooms, LSD and LSA from Seeds such as Hawaiian Baby Woodrose Seeds and Rivera Corymbosa Seeds. They have been used for centuries by Sharmans in tribal rituals and for medical treatments. Hope this is helpful.
Regards Shell

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01 Sep, 2010 - 4:04 am

Ah. I've read about LSD and mushies doing wonders, I just didn't know it was called busting. I've dropped acid a few times, but that was back in the 80's and i didn't have CH then- but from what i've read the "recreational" dosage is way more than the "therapeutic" dose anyway. I did have it in mind to slip over to Holland in the middle of a cycle to test the mushies theory, but they're now banned there as too many tourists ended up in the gutter or doing ridiculous things to themselves or property. All of the Ergot group are precursors for compounds of the LSD type- also notorious throughout history. It's reckoned many of the peasants "possessed by the devil" in the middle ages were actually suffering ergot poisoning from spoiled grain used in bread. I suppose it would have been a far out experience if old Ma Hubbard started tripping but didn't know what was causing it...
Thanks for that Shell.
cheers peter.

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01 Sep, 2010 - 12:18 pm

thanks shelly , great info that is very useful indeed . I have had a bad 3 days , with ' on the hour every hour ' the norm . As usual , nights are worse as by the time i wake up ... , well , you know the rest . The injector pens are ordered and will be here today , i read with interest about modifying them , nice ill be having a go at that . Have had some joy with an imigran tab and two aspirin every two hours or so . Sadly , i have gone deaf in my left ear but can hear the ocean in both ears . Doc thinks too much imigran ? Probably right . Will keep on seeking the truth

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01 Sep, 2010 - 12:35 pm

hi pete , i actually live is st james but no one knows where it is , so i say vic park ! Sunny russia , nice ! Im going to try the injections soon , why dont they have them in russia ? They are expensive here , but wtf , its only money and im keen on the speed factor ! The tabs work ok for me too , especially if i get in early , though i know im taking too much . Prednisone ? My doc said thats the next thing to try . What didnt you like ? Did it work at all ? Side effects ? By the way , my grammar is usually pretty good but im typing this on my phone . Take care . Sean

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02 Sep, 2010 - 4:23 am

G'day Sean. Wow, small world. I used to live in Leichardt (sp?) St, before one fateful day we tried to clean the pool and it popped out of the ground and split in two. The owner was not well pleased We didn't get our bond back...
I've no idea why no jabs available here, but then i can't get medical oxygen either. My regime consists of Sumatriptan, Zolmatriptan if the Sumatriptan isn't working for that cycle; Topomax 100mg morning and night and Ketorolac tablets for pain killers. ALL over the counter here, so no having to beg from the GP. My Neuro's are actually pretty good (one's a real babe ) , i can drop in and chat with them any time.
Prednisone, and it's bastard brother Dexamethasone. I was on it for a one month regime, repeated for a second month. Yes, they do break a cycle, but in my case they really just shifted the cycle so that I just didn't know when an attack was going to occur. I stacked on weight- going from 95 to 118kg in two weeks, I bruised if I so much as crossed my legs, I felt as if my hands and feet weren't connected to me, I was lethargic, bedroom performance(ahem) could not be relied on. Like I said, NOTHING could induce me to go another round of Prednisone. It took me two years to get back to my normal weight after that little episode, and that was with not drinking for a year. Mind you, YMMV.
cheers peter

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02 Sep, 2010 - 10:56 am

Hi Sean
No you are definitey NOT on yout own! Take heart my friend--and we are just the few that have drifted to the top; think of how many other sufferers there are out there who are bumbling along not knowing first of all that there is such a thing called a "cluster headache", that they might be a sufferer and that there is a support line for them. Shell is our researcher supremo and wil always come up with all the good links and news for us which is great. Just re read your posting. Yep--sorry mate, you have not won the lotto. I am guessing that you must have some relationship with a doctor to be using imigran. I use oral imigran (found the nasal spray bit restrictive for me as I was having 6 attacks a day--bit hard to stretch 2 sprays to meet my needs) and find the oral meets my needs just fine so do not use the injectable ones. I note that you are not on any prophylactic program. Maybe this is something you could be discussing with your doc. My suggestion is that you now start to look at keeping a diary of your headaches ie timing ie when, how long, pain level, how long takes for imigran to kick in, anything that adds to information for the doc to assess what could help for preventation means. There are a lot of good drugs around now that can help prevent the attacks. Worth discussing. As me mate saintpeter would say get to know your beast! Good luck
Heather
ps I am so up close and personal with mine I could strangle the bugger

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02 Sep, 2010 - 1:54 pm

Hey Guys,
Firstly Pete please be careful using the Ketorolac in conjunction with the Triptan's, It is an NSAID (mostly anti-inflammatory benefits) but also a Vaso-constrictor and the Triptan's work on the same basis by being a vaso-constrictor. My concern stems from Cory having been given the same meds and getting a secondary form of Raynauds Syndrome from medication toxicity from too many vaso-constrictors. He has been suffering extreme pain from this for months now, can not stand any temperature changes at all, cant even leave the house if its cold. His hands and feet change color dramatically to a dark grey, in severe cases Raynauds can lead to Gang Green and amputation of limbs! He had been on the Triptans for 20 years before this occurred but as soon as the Ketorolac was introduced this was the outcome. Please be very Careful!!! I Hope you are Pain free soon.

Sean,
I have found a Legal Supplier of some of the materials required if you do decide to go down the clusterbuster path. I'm so glad your going to try the injection's, please do try to split them, it's a trial and error thing at first to see if 2mg or 3mg is your magic number but they are much more effective than the sprays and the tablets and why would you put extra into your body if its not completely aborting the attacks. Also please push your doc, no demand that he gives you a prescription for Oxygen, It really is a life saver for most if used correctly. The prednisone does have some nasty side effects for some people but if it is used as an abortive at approx 80mg a day for a week and tapered dramatically over the next 7-10 days it can abort a cycle or allow a preventative such as Verapamil to start working. One of the biggest things that we have realised over the years is that what works for one cycle may not work for the next and vise versa. Wishing you PFD!
Regards Shell This post was edited on 02/09/2010 at 1:54 pm

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03 Sep, 2010 - 4:35 am

Wow, thanks Shell. I knew about Keterolac and prednisone, but not about any of the triptans. I rarely take them anyway, as a nurse friend of mine in Perth warned me off them years ago. Back then Tramadol was over the counter here too, but not any more unfortunately
i'd be in a ton of trouble if i couldn't leave the house if it was cold - that'd leave me about two weeks in July

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03 Sep, 2010 - 9:14 pm

hi all , after 4 weeks and 2 days of hell , the light in the tunnel is fairly bright . Its now been a full day with no pain . Shadows and a bit (a lot ) of fear , but this is the pattern of the past .I even slept on the couch today and woke up with a start , " where is it ?" not there . Today was the day i picked up my cheap meds card , hows that for irony ? $1436 in a month and that , my friends is a shed full of imigran . So , although i am happy for myself , it saddens me that so many of you out there are still suffering this vile and mysterious affliction . Oh , saint peter , i have stayed well clear of prednosone this is the most wonderful site in the world . Sean x x x

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05 Sep, 2010 - 9:40 am

Hi Sean
Great to the see the "not currently suffering"--wonderful news. I am stuck back in hospital again; about to undergo a second round of IV lignocaine. I am a chronic sufferer, or is it a chronic pain in the butt. I too will not touch prednisolone with a 40 foot barge pole. Even my neuro is wary of it with me; I go like a blithering idiot on it. I keep reminding myself that our affliction is not life threatening unless we allow ourselves to let it become so; and for myself I will not succumb to it; although I have felt the pull. I have a wonderful family and a barage of friends who keep me on my toes and I am too much of a fighter.
Sean as you come out of a cycle be aware that as a true CH sufferer the next attack will be around the corner at some time or other; be like the great saintpeter and learn more and more about your own particular demon so you can be ready for him. Amazing how we all relate to him as a male. Keep good records and look for any thing that might kick the cycle into play.
Keep smiling, and take each day as it comes, and live in the "now". Heather

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05 Sep, 2010 - 10:08 am

hi all thanks heather , if my cycle goes to plan , i should ( all fingers crossed ) be free of ch 's for up to 2 years , but usually 18 months ) . Before i found this site , i would do nothing in between bouts . I was just happy to be rid of it . Not any more ! Information is power. I now know that i can do something about it the sun is shining , its father 's day and im feeding the magpies on my front verandah . Today , life is sweet . Sean

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06 Sep, 2010 - 4:09 pm

Awesome news Sean! So glad your getting some relief and keep up that great attitude, I know sometimes it's hard to see that light at the end off the tunnel but it certainly makes a difference to life if you have hope. The little things in life become huge when you've had to miss them for a while during a cycle, so enjoy, life is sweet! Wishing you pain free times always!

No probs Pete! It never seems to cease to amaze me the extent of just how toxic some of these medications can be when taken in conjunction with others, seems to be a never ending cycle. You take a medication to help one condition which intern then creates side effects that require more medications, no wonder shares are highly priced for pharmaceutical companies, It's all about the $$$. Hope you are pain free soon.
Regards Shell

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