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The first time I had O2 was in a hospital with a crap mask and who knows what flow rate. The mask let in room air on the sides and they had it strapped to my face. When I told them that my cluster was getting worse they moved the mask from my face and put it over my ear, I guess so I could get more room air? Well I broke the mask off and that was the end of my O2 until I found this site. I read all about the ways others here use it and now have the correct setup and mask. I found it was harder for me to get a oxygen company to deliver it to my house then it was for a doctor to give me a script for it. After a bunch of weeks calling and driving to O2 distributors and yelling and fighting with them I finally have a company that will deliver tanks to me house the next day. I do not use insurance for it because it would end up being about twice the price so I just pay for it out of pocket. Getting off the triptans was a long hard painful weekend but it was well worth it. I went from taking 3-4 shots and or pills to maybe one a month if I am getting hit bad for several days. I just know in the back of my mind that I am better off without them in the long run. I am not saying never take a triptan for a abortive because I have been crushed for 3 hours with a kip 10 before and know how that feels, I am just saying the O2 has aborted just as fast as a injectable and faster then the many pills I have taken.

Hey Javan, I've sent you a message on the anti-inflammatory regimen CH preventative treatment protocol with at least 10,000 IU/day vitamin D3 plus the cofactors... Please let me know if you received it. Take care, V/R, Batch

If I can get my cycle to quit, I'll do whatever out-of-episode prophylaxis is available - I've burned through almost everything else. Over the past 20 years, I've been on Topamax, Depakote, Keppra, Verapamil, Lithium, Lamotrigine, Lacosamide, and Oxcarbazepine. I've done 1 g Depacon Infusions with Solumedrol. I did Botox every 3 months for 1.5 years. I've done occipital and temporal nerve blocks. The beast always returned. I recently has about a 2 year break - on zero drugs - after a MM bust and having a little left over for every 2 month boost x 4 rounds. Which brings us to now - I have excellent insurance, and the Aimovig Ally program will keep my costs down for at least a year - so if I don't see any adverse events from doing the monthly shots, I'll keep doing them until the HAs return, then re-evaluate. If my episode doesn't break from the dex, I'll be busting again. As to the mechanism of action of the CGRP inhibitor - it is supposed to reduce number of hits and intensity. CGRP is a "messenger" type neural chemical, whose message is typically "pain". It's one of three secondary chemicals that intensify migraine pain, after the activation of the serotonergic receptors at the outset of the headache. It's entirely possible that this mechanism will have more relevance to chronic cluster than episodic, but we'll see. As to the cost - nobody should be paying $7000/year for this or any drug. If you have any sort of commercial insurance, there is co-pay assistance through Amgen. If you don't have insurance, you should apply for full-on patient assistance programs. Paying full cash price for branded drugs can be avoided most of the time. Start with pparx.org if you need help. Lenny

I guess I should confess the personal source of my frustration, beyond what we have heard from scores of people here and at the FB group. My daughter didn't get good advice about her CH when she was just about Javan's age. Her supposedly top-notch big-city neurologist finally prescribed O2 after years of feeding my daughter crap drugs, having first misdiagnosed her CH for years as trigeminal neuralgia. But that neurologist prescribed a concentrator and cannula, which of course had no effect. And we hadn't yet discovered the great people at this forum. So I sat with my daughter on nights as she suffered through multi-hour attacks with nothing to treat them, believing that oxygen didn't work for her. After I found ClusterBusters, I tried to get welding O2 for her and failed miserably and foolishly. I finally contacted her medical O2 supplier and demanded cylinders and a mask. It was hard to convince them that that was what she needed, but finally I did. My daughter didn't believe it would help her, and was very resistant to the things I was doing to make all this happen -- even angry at me for insisting. And I will never forget the moment when she did try it and the pain melted away. Jon' has talked about tears of happiness; for my daughter it was giggles; it was me who was crying from happiness. To be honest, oxygen mostly still works very well for her but sometimes it doesn't, but God only knows where she (or I) would have been without it.

^^^^^^what he said...…..

Javan, how many people have to tell you that if you have CH, oxygen will save your life? I have no idea what you're talking about, and it's really frustrating me. You inhale O2 at the first sign of an attack and something like 10-15 minutes later, most of the time, you can go on with your day. Triptans will f you up in the long run. Steroids will double f you up in the long run. Caffeine is not going to be effective in the long run, and you can't live a lifestyle of drinking caffeine all day. It will f you up (and, no matter what you think, it doesn't help, if it is CH that you have). ONLY oxygen will abort your attacks without eventually fing you up in some way. You're not "hooked up to an oxygen tank all day" -- you use it when you have an attack. You can make a nice portable backpack and take some with you pretty much anywhere. If you have psychological issues about using O2, I'd recommend seeing a shrink. You don't even have to use a mask if that bothers you; you can breathe through a tube so your face isn't covered. You CANNOT get by without O2 in the long run without a huge amount of completely unnecessary suffering. They aren't called suicide headaches for nothing. You can't smoke while using O2. Your dog hair and other messes and smoking pot aren't going to have any effect on your O2. And, to repeat what I said yesterday, Zomig, the triptan, is an abortive, as is Imitrex, which is the injectable triptan. They're not preventives. They are very powerful stuff that you would only subject your body to because you want to end an attack. You can't take them all day, or take them as though they were preventives, because you'd be killing yourself, and you'd also be making each subsequent headache worse and each cycle longer. There is a reason things are done as they are. I admire your truthfulness and your inquisitive spirit and your complete determination to remain as "normal" as possible. CH sucks, big time. Improperly treated, it has destroyed many, many lives. Your passions for life will see you through, and there are very promising treatments on the horizon, so that you almost certainly won't have to go through what people before you have endured. The founder of this site started taking psychedelics because for him, it was try that completely untested idea or commit suicide. Most people here who take MM or other psychedelics hate the experience. But they do it because it's the best thing they've found, with the fewest side effects -- for prevention. But they all, or virtually all, have O2 for abortion. I'm not recommending that you take psychedelics; I'm trying to help you see what CH can become if you don't deal with it sensibly. Now the D3 regimen is working pretty big wonders for hundreds of people and, as I say, it's possible that a very effective preventive, Aimovig, might be very helpful. Don't just read about the D3 regimen, do it. The guy who created it is an amazing person who will help you in any way he can, and he's there for you pretty much 24/7. And get the damn O2.