Wilson

I spoke too soon, I had 2 good nights and 3 days and last night before bed time, Boom. All night sleep 30min, wake up , back on O2, sleep 30, staying on the O2 longer did not work for me and it seemed like some of the attacks were almost resistant to the O2. I did come into contact with a huge amount of dust at work and sneezed all the way home, that may have triggered it. Friday night I will try to end the cycle with mushrooms. Hope it works, I will be sumatriptan free for 7 days then.

Thanks for all your suggestions, I cant believe what has happened and I hate to jinx myself but here it is. Friday night I took my last dose of Sumatriptan so I could get a little sleep and prepared to go completely drug free for 5 days relying on O2 and energy drinks alone. It was very bad and the attacks hit every 20 minutes, knocked them back with O2, Saturday I was up to maybe an hour between attacks, I had my wife take me to stock up on extra oxygen (welding type) at Tractor Supply, I brought my regulator along and needed some before we left the parking lot! The pain was particularly intense and I was dreading the next 5 days. I even had extra O2 for at work, thankfully I can do that where I work. I kept track sitting in a chair, (laying down was out of the question), I noticed the attacks were getting further apart. I actually got some things done Sunday, slept all night and used a little O2 for a "ghost" Monday morning and have not used any O2 since then!!! THE CYCLE SEEMED TO BREAK LIKE A MIRACLE! CHfather, I did start the D3 regimen as soon as I read your reply to my post and upped the melatonin to 24mg at night but cut back last night, made me too groggy in the morning. I have been taking 10,000 units D3 Long with 500mg magnesium and the rest of my usual vitamin regimen that I normally take. My normal cycle was 5 weeks or so, this one, if it is really over, was only 3 weeks. Without your encouragement I would not have stopped the sumatriptan and would have gone out and tried to get more. Even though I spent quite a bit on extra o2 tanks I don't even mind. Pain free is so nice! Another case of modern medicine making me sicker??? Everyone is different I guess. I'm glad I stopped the meds. Thanks for that advice! I can tell you I will be consuming my mushrooms on Friday and every 2 weeks or so after that without fail. Thanks everyone!

Thanks for your response! I actually wait until I am having an attack before I take more Sumatriptan because I am down to 7 pills now and I don't want to waste them, after I take one I am CH free for at least 6 hours but they make me feel funny and a little sick. It does stop the attacks so I can work or sleep a little. It takes less than an hour to work. Until then I have to rely on O2. I will check out the mask, I never using the hose straight just seemed like a good idea and it worked. I will also try staying on the O2 for longer, tried that today and it seemed to hold off an attack until the sumatriptan kicked in. I have been including 2000iu of D3 in my daily vitamins for months now so today I kicked it up to10,000 and will keep it there. I have tried the caffeine / Taurine energy drink, not much difference but I'll try the energy shots too. I tried the melatonin at 9mg and then close to 20 and saw no difference but I will keep it up. I think if I do go to the walk in tomorrow I will ask for verapamil, not sure if they will do it but I think the Sumatriptan is a dead end and I should try to tough it out with these new methods. I suffered through many attacks with nothing years ago when I did not know what they were, I think I will dump the sumatriptan tonight, tough it out this weekend and by next weekend I can use the mushrooms again. Thanks for your help!

I need some advice. My last cycle was over 2 years ago. That was when I actually found out what I was having and found a doctor who would at least listen. She prescribed amlodipine and sumatriptan. I also discovered that O2 helped break up a bad CH. It seemed to work enough so I could work and sleep a little during the 6 weeks I had the CH's. During that cycle and all my previous cycles, always in Jan. or Feb. , my CH's were always at night about 30 minutes after I went to sleep. I would have 2 or 3 a night and that's it. I handled it by pacing, screaming, and pounding on my head. I could still cope. Then I started with the meds and O2 and then my cycle got really weird for a couple of days then stopped. after my last cycle I did 2 things, started stocking up on the sumatriptan and amlodipine and I learned how to grow mushrooms. I dosed with mushrooms several times over the next few months and really did not enjoy the feeling much but I kept taking lower doses of a gram at a time every month or two just to ward off a CH cycle. I had no idea how to take them , just that they were reported to work. Then due to work and home life I just stopped taking them for 7 months I also stopped seeing my doctor and felt I had enough meds and I was tired of paying her all the time... ( no appointments, no blood draws = no more prescriptions) I am quite healthy and other than CH's I don't need a doctor. I had almost 3 years cluster free. I thought I would never have another CH. 3 weeks ago, Pow! I am in full blown cluster hell. I cannot pinpoint anything that would have brought it on except that I stopped the mushrooms. On this cycle I get the CH's all the time, day and night. Immediately started taking the sumatriptan (oral 100mg) which does work but now I am running out. I refilled O2 and bought spare tanks, I tried the mushrooms to break the cycle but they don't work either now, then reading on this website I see why they probably are not working. Melatonin did not help either. The sumatriptan is starting to not work as long now, two doses will not take me through 24 hours anymore. The sumatriptan is not good for your body and it is very expensive and I will be lucky to get a walk-in clinic to prescribe it. My question is: Should I try to get more Sumatriptan and try to wait out the cycle? O2 helps but I'm going through tons of it, should I try to make it 5 days without the sumatriptan and try the mushrooms again? I don't know how I will do it. I would use LSD if I thought I could find the real thing but the chance of that is very remote. Without a trusted source I may wind up with some other chemical. I started the D3 today but do not know if that will work mid cycle. Thanks for any advice!

In Florida getting medical O2 is a real pain and if you get it it is very expensive. Buy a cylinder and a regulator from a welding supply and get if refilled whenever you need it. Do not tell them you are going to inhale it, you will only invite problems. Just let them assume you are taking up welding.

Yes , just set the regulator for a comfortable flow so I can fill my lungs completely without too much stress with hose to my lips like a cigar and hold it in a few seconds, thumb on the end of the hose to conserve O2 , exhale and repeat. the relief comes very suddenly and quite completely most of the time and I close the valve and walk away with total relief. At least fo 20 minutes but sometimes for hours. I do not think it stops the CH, it just derails it for a time but it's worth it.

During my last cycle I got hold of a small O2 bottle at work and when I found out how well it worked I wanted my own! I called up and found out I needed a script! Called my doctor who had already prescribed Sumatriptan and Amlodipine and told her that I discovered that O2 worked. I got a big run-around from the O2 supplier, I won't go into it, but Medical O2 is a big racket in Florida. They wanted to do a study to see if I could use a concentrator (no way) and I wound up with a tiny tank that cost a fortune to rent and fill. It lasted a day. I talked to some friends and discovered that welding O2 was the same as medical O2, my doctor had a fit, said it was not. I found out many welders use their O2 when hung over, ect. You won't die from it. I went to a welding shop and got a 4 ft tall tank , filled with O2, for about 250.00 and an O2 regulator for 99.00. They made me a hose to fit the outlet of the regulator. I crack the valve open, turn the knob so I get a nice flow of O2, soft enough so I can stop the flow with my thumb. I empty my lungs and inhale deeply, exhale and do it over and over again. no mask at all. My sinuses are plugged at that point anyway so why bother with a mask? I can go from a cluster that is full blown, me screaming and pounding on my head pleading with god, to complete relief in about 5 minutes or less. I try to catch it before it gets that bad if I can. if it comes back... more O2. It costs about 50.00 for a refill and I am in control of it. I can go through a big tank in a week or less. Or it can sit in my closet for over 2 years like the last cluster free period ready for action when I need it. Medical O2 cannot be had at that volume and would cost a fortune where I live. I have a smaller tank at work now and an even smaller one in the car. I know some won't agree with this but it's a matter of survival for me. I have had no ill effects. I posted this in hope it will help someone else, good luck!