After a great deal of red tape, confusion between healthcare professionals and an out of pocket cost that was sick.... I got the O2 and I can refill it with welding O2 now that I'm set up with the right to buy oxygen related medical supplies like non rebreather masks and regulators in bc.
I've used it for 3 of my ch's now and they peaked around 3 or 4 on the kips scale and only took about 4min to get rid of. Down from the last week's ch's mostly over 40min and all 9'. The happy meter is bubbling over.

Jaymie wrote on Feb 8^th, 2014 at 12:46pm:


Wonderful news that you've now got oxygen. It is a real life changing step.

Now here is to hoping that you can get a good preventive sorted out that works for you with the result that your oxygen kits gathers dust.

I misunderstood your original post and thought you had a script for o2.
   Welding o2 rocks.

               Potter

Jaymie that's great news, oxygen was a real game changer for me too. Several members, myself included, find that drinking an energy drink WHILE aborting with the 02 both speeds the abort and helps push off the come backer attacks. And good for you, being your own best advocate and pushing until you got what you needed!

Joe

Hi everyone,
1st post so please be gentle !
My story is very similar to many others on the site.I am from Perth Western Australia and I have wandered around in the wilderness for many years having no idea what was going on. Headaches that come at the same every day and the same time every year ! must be going crazy.
My low point or (hall of fame moment) came a couple of years ago as I knelt before my wife begging her to help to stop the pain. She was at the time dealing with the horrendous side effects of aggressive chemotherapy and her own nightmare journey for breast cancer. It was not a high point in my life and shows how much this condition can strip your self respect, any semblance of logic and leaves your ego decimated.
But believe or not I decided to post because I am one of those rare good luck stories (don't worry I'm not getting cocky as this is an ongoing journey)
i am the other side of 50 and have suffered from tension headaches, migraines and so now I've found out cluster headaches for most of my life. It was only January this year I put all the pieces together (with the help of my wife) and was subsequently diagnosed with episodic clusters. The reason it took so long to pick it up was the cycles were quite irregular in timing and length. My last cycle was 2 years ago and was mostly night time visits and late afternoon, highest was kip 7-8. This year however they were, at the beginning late afternoon and evening with no wake ups - go figure. As soon as I got used to the routine they went haywire in frequency and intensity kip 9 were frequent and I'm sure there was a 10 in there somewhere.
Being a typical male I toughed it out until my adorable wife and rock googled different headache types and bingo cluster headaches become a frequently used word. If it wasn't for her I would still be suffering so now I owe her two lifetimes. Clusters ticked every box in what was happening but unfortunately I was not hopeful of treatment as I had read many threads about the difficulty of diagnosis by well meaning but ignorant medical professionals. I made the appointment with the GP purely with the view of getting a referral to neurologist. 10 minutes before my appointment I got a kip 6 which turned out to be the best thing that ever happened. My GP (who also incidentally saved my wife's life) diagnosed with 30 seconds and had me on oxygen (bye bye beast). He then put me on a Prednisone taper starting at 75mg/day along with indomethican. He was an older doctor who had fortunately worked for a neurologist and had seen clusters first hand. The attacks stopped immediately except for the 4th day. I was late taking the meds and got hit at 7 in the morning out of nowhere with kip 5. It also happened to be my beautiful wives 50th birthday and she was having her 6 monthly ct scan at 8.30. This beast can be inconvenient at times. She drove, I sat in the drivers side with icepacks and fortunately it was gone by the time we arrived (all went well).
That was my last attack ( 3 weeks ago) I came off the prednisone and indo and went on verapamil (180mg/day) I thought was low but so far so good. A bit of a rough tapering and waiting for the verapamil to kick in but all good now. Suffered from some very heavy shadowing and about 10 icepicks a day but no attacks and these have diminished where as I am in that limbo time of "is it the drugs or is my cycle finished ?" Time will tell.
I like many can't thank the community of cluster heads enough. I was one of those people you helped without you even knowing. I was able to go to the Docs armed with all the information he needed and actually understood him due to the high quality of information here. I have read so many horror stories and consider myself to be extremely lucky as I would say I am a mild sufferer (bad enough !) but I have a doctor on the same side who actually understands, an awesome wife who had the strength not to break down when she saw me in pain, a boss and workplace who don't really understand whats going on but are willing to take me on face value and of course this message boards which can just about answer any question you have.
I know my journey is not over but I feel confident going forward that I will face the beast again and spit in his eye knowing I'm surrounded by caring and understanding people.
I hope this wasn't too long winded but this is probably the only place I could tell this story and be understood. Although I'm probably going out of cycle I want to be an active participant in discussions and also help to raise awareness without scaring people away. I'll start with a T shirt and see what happens.
Thank you to everyone here (I feel as if I know a lot of you already) and hope to speak to you soon
Alan

Welcome Alan,   
Sorry it was necessary for you to find us, but now you have you can be sure you have a whole host of new friends. We all understand what you are going through and we are all here to help and share in any way we can. Feel free to come back with any ideas, questions, or just to rant if you feel like it. We're always here.
Maz.

I knew I would forget some vital bits of info.
I'm sure they are clusters as some of my hits have been up to 3 hrs long  (they were fun!) with the shortest being about 20 min. The ice picks I mentioned tended to be with the shadows and although irritating, were manageable and only resulted in me pulling a face if I was talking to someone.
I too thought the dose for verapamil was low but from reading here the idea was to start at the lowest dose and work your way up which was what I was expecting. i have an appointment this week which I gather was to discuss changes but because it appears to be working, I'll maintain it. I suspect it was the Prednisone that did the job rather than the indo but from my extensive reading of the message boards you don't discount anything and some very strange things seem to be very effective for some people
The doc seems to be very knowledgable on meds as he discussed sumatriptan etc as an abortive and decided on Maxalt which I am yet to put to the test (hoping my luck holds out)
I did want to ask more about the shadows. When I started with Prednisone and then the verapamil, I got very strong shadows which almost seemed like all the symptoms of an attack without the searing pain. Some days they would be continuous and other days they would appear around the same time I would normally get a hit. It initially made me nervous as I was waiting to "dance with the devil" but they never developed past a kip 1. For a little while it seemed like I was continually walking a tight rope.
As I said I am one of the very lucky ones where everything I've done seems to have worked but I will never drop my guard  EVER ! because clusters seem to have a degree a schizophrenia about them and can through you a curve ball at any time.
It's funny how things work out sometimes. Clusters have helped me rationalize the other pains I get. I used to think my tension headaches and migraines were bad (and some were) but now having had some kip 9"s,I tend to handle these other headaches much better now, not a walk in the park but relatively speaking easier to handle.
I did read the fascinating letter from (i think Bob Johnston, sorry if mis quoted) about Cognitive therapy and the difference between pain and suffering. It gives me the strength to not be a victim but more of an adversary when dealing with the beast. i also understand that clusters are generally not life threatening and I have just to look back on what my wife went through and it helps me keep things in perspective.
I think because my cycle appears to be finishing (fingers crossed) most of what I'm learning now is so I'm prepared as well as I can for next time so I can start treatment straight away. I think I was well into my cycle this time before treatment started  :but every day I'm getting more educated thanks to you guys
Thank you for your replies as I was not sure if my post came across as gloating as it was not my intention. I just wanted to let other sufferers know that just sometimes things can go right and with the right support around you, the sun can shine again.
Thanks again everyone

Hi!
I was diagnosed 2 years ago & have just been 'upgraded' to  chronic. I am struggling to find a doctor who really understands CH, although my own GP is brilliant i am fast losing hope of ever being pain free.
Oxygen doesn't work for me & pain killers seem pointless.

As much as this condition just plain sucks, I'm grateful to have found people who may understand just how bad the pain is & how it affectes every aspect of your life! Ive felt so alone, like no one is ever going to 'get it'...

Hi and welcome Jen

Have you got a preventive, something like verapamil, lithium or topomax, that will cut down how many CHs you get? This can make a massive difference to the impact on CH on you.

Also have a look at the vitamin D3 option that many of us use. I've got well over 2 years CH pain free using D3.

Keep reading and you'll learn lots. Ask all the questions you can think of.

And I also wanted to add the medications that they prescribed me at first and everything I took in order.

Butal-Acet- Caff * Stopped that after the first few days because it made me feel nuts

Naproxen- Took that for three days and made me feel fine but gave me tremors ( probably prescribed because I said I had anxiety)- Stopped that

Clonzapan- Took that for one day and F that. It made me feel like a zombie the first day and the next day I was feeling like euphoric.

Indomethacin- Have never taken it yet

Imitrex (generic version, Sumatriptan? -took that once and it seemed to make me trip out, no pun intended

Stopped all medications for five days and all I have now is a dull pain on the side of my head with moments of really sharp pain. Along with right eye twitching and anxiety.

Should I be grateful that all I have is eye twitching and confusion now? The first couple of days while on pain meds were nuts but I'm glad it has passed. Do some people only experience really bad cluster headaches for a couple days at a time? And then some type of after-effects? Anyways I'll check back tomorrow and I hope yall are doing good. 

Just a note to say I tapered of the Verapamil completely as of a week ago... nice to be off.