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Welcome Michelle! You story has a lot a similarity to mine. I also agree with you that pain is relative and no has a right to compare to others. The human experience is truly unique. As far the 02 goes hope they got a good set up for you, it took me few tries to get a truly effective one. Sometimes doctors like to start out to low and not the best equipment. Also you should try the D3 regimen. It has been effective for many, even us episodics.

When I first began having clusters, I was in my 20's. I had no idea what was going on. They were very painful, but not the worst pain I'd ever experienced. I did run into the ER on multiple occasions, thinking I was having a stroke or an aneurysm... only to be given multiple diagnosis like sinus infections, TMJ, ear infections, etc. Usually, by the time I got to the ER and waited for my turn, my episode was almost near the end & I'd feel silly for being there. Finally, my doctor sent me to a neuro who ran tests and dx'd them as clusters and over the next years, I was a guinea pig for several different med's that were ineffective. As the years passed, the pain increased considerably from the episodes. Fortunately, I only get them in the fall and winter. I cannot even fathom how someone could stay alive as a chronic CH sufferer. My worst bout ever was 4.5 months straight of 1 per night, every night. I was darn near suicidal, myself. So, all of that to say... that regarding pain, the more years I experienced them... the worse the pain has become. I, too, would LOVE to pass out during an episode. I am too busy pacing and trying to run away from it to do so. I am now pushing 50 this year. My doctor just presribed me 02 for the first time in 25 years, after I made the request. I was set up with 2 tanks and instructions this afternoon & will see how that works. I also have read several posts on the board from people who have bad reactions to Prednisone. I don't like taking it, but it is the only thing that I have found that can actually end a cycle. Works especially well if I catch it very early on. 60 mg x 3 days, 40 mg x 3 days, 20 mg x 3 days & "usually" they are gone... cycle over. I have been pretty fortunate the past few years,, but have found that I cannot mess with the Prednisone and "under-dose" or the right dosage will not work & I get stuck in a cycle. That is where I am at now. So, pain is relative. We all have different pain tolerances, but if you have met the criteria... don't get hung up on the pain level! The day may come that you wish you could go back to your current levels. I know I sure do! In 25 years, I went from "This is awful, but tolerable" to "I'd rather have all 10 of my fingers sliced off, one at a time, than go through this every night!" BTW... Hi everyone! I am new to the board! Michelle

Hi Andrew, I just want to wish you all the strength you need to go on. Try to find a positive spirit to go on. Rogier

Try all these wonderful suggestions. Some things work for others and some things don't work for others-Its seems to be that every body/brain finds different solutions. My Husband was able to break his 20 year cycle of very bad clusters with Seroquel- an antidepressant. If you try everything and they don't work please try a RX of seroquel (if Doctor approved for you) ..for a few weeks to see if you get a result. All the very best! Hugs!

Welcome Andrew! With respect to oxygen, some folks in the UK experience problems sourcing O2 thru ya'lls NHS....however, unless there are underlying conditions that contraindicate its use, it is recognized as a viable treatment in the UK....if you have any problems of that nature, contact OUCH UK and they will provide assistance with the HOOF form. Where are you located in the UK? I know several clusterheads in England and Scotland....a friend in Scotland hosts a couple meet n greet events every year.....nothing like meeting someone who "gets it" and understands exactly what you deal with! Dallas Denny

Hi Andrew As Ch father states busting or d3 may help but first a correct diagnosis is essential ,as you are in the Uk like myself can i ask a few questions that may help us help you 1.has a headache specialist /neurologist diagnosed you? 2.have you tried oxygen ? (its quite possible you now live in an area where the demand valve system is available on prescription ) 3.if no to the two above has your GP referred you to a headache specialist neurologist ? pm or answer here if you wish zany

Andrew, you are right to seriously consider busting, and THMH has given you what you need to know: read the numbered files in the Files section and follow the process he has described. If you have not done the "Vitamin D3" regimen you should start it. It has made a very big difference for many, many people. You can also read about that in the Files section. (I realize that people in your situation are inclined to eventually give up on treatments, and surely you might wonder how some vitamins will help you when powerful medicines have not helped. But many people in that very situation have achieved very good results with the D3 regimen. You have to follow it to the letter. We find often that when people say they have "tried everything," they have missed some core elements, most particularly oxygen. Have you used oxygen? If so, how was it delivered? Because often people who did not get relief from oxygen were using ineffective delivery systems -- the regulator did not provide a high-enough flow rate; the mask was shoddy or used wrong; the O2 came from a concentrator, not from a tank/cylinder/cannister. No matter what success you have with busting and D3, effective oxygen can be a life-changer. If you have actually used everything pharmaceutical that typically helps with CH (I would include sumatriptan/Imigran, corticosteroids, and verapamil at the top of that list) and none of it helps you, and not even ketamine helps you, I have to say that I would also test a different diagnosis, such as paroxysmal hemicrania or hemicrania continua. Those things look a lot like cluster headaches -- but they are effectively treated with a single medication, indomethacin. So if indomethacin is not on the list of things you have tried, it would be worth a shot.

Andrew, mm (and truffles), LSD and LSA definitely help. They've been the only thing that's given many of us our lives back. I was chronic and have been taking regular doses for over 7 years now. I've been pain free a significant amount of that time. I believe truffles are available where you live. Please read the files section on this message board. There's a specific process you need to follow. 1) detox from all triptamine type drugs (Imitrex, maxalt etc. etc). 2) Wait 5 days from he start of detox for your first dose. Take enough for a "threshold" dose. Meaning you get some trip out of it. Most of us find that the stronger the trip the better the medicine works on our CH. 3) You'll likely get what's called "slap backs" after your first dose. Don't worry, the attacks will go down after the 2nd and 3rd doses. Take each dose 5 days apart (not 4, not 6). For some reason 5 days is the sweet spot for something in our brain to reset. After the 2nd dose you should notice the attacks being milder and slightly further apart. After the 3rd dose most people are pain free, but a lot of people also need another dose. It all just depends on your body chemistry, and the strength of the mm. post questions. (but please read the busting files section). :) J

I think you should just send your wife instead. I have some stories I'd like to tell her ;-) Bob