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Anita, What "store" would he/you be going to? He can't really ask about regulators and particularly about masks at a welding supply store, and I don't think there are actual medical oxygen stores. Maybe there are--I've been wrong before. I guess we've led him to the water, and the rest is up to him, but he's making a huge mistake not to take our word for it. Many people with CH do resist trying new things, or trying things in new ways, because they have been disappointed so many times in the past and it's very crushing to feel that disappointment; but he really should be listening on this one.

The vitamin D regimen has helped lots and lots of people: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Many people find that they have to go to pretty high levels with the verapamil before it really helps: 960 mg/day, or in some cases even more. The sumatriptan injections can be split: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ This site was founded by people who had been through scores of prescribed meds (and there are scores of things that can be, and often are, thrown at CH) and found that using psychedelic substances, often at levels where there are no psychedelic effects at all, was the most effective way to end cycles and even prevent them. This approach is called "busting." You can learn about that, if you are interested, in the numbered files in the ClusterBuster Files section of the board. Let us know how the O2 goes. That can be a huge change, getting it right. If you have the wrong things, that is probably the fault of your oxygen provider. So if you have a prescription, that's probably who you should take it up with (unless the prescription was written wrong). As you might have read, to go beyond the basics to a higher-flow regulator and a top-quality mask, you'll probably have to buy those things on your own. Here's where you'd get the mask: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit His neurologist sounds like at least s/he knows the CH pharma basics (verap, O2, and triptans). That is surprisingly unusual. If s/he is also caring, that's another big plus.

AnitaJ, You're a ROCK STAR!!!! Don't let anyone say different. I think sometimes the supporters of us with CH have it worse. You have to stand by and watch, something you really can't do anything about. Just my opinion, but anything you can do for him before or after an attack, I'm POSITIVE he appreciates. As for during the attack; There really isn't anything you can do, but let him know you're there. Just knowing someone is sticking around is HUGE and I commend you to the sky for it! We go through ups and downs and don't know where to turn often. J

I don't have MS but I have done some research on it for a couple friends of mine. (I'll also note that in all my experiences with CH and CH sufferers over the years, I can't remember meeting anyone that had both MS and Clusters. Obviously it happens, but to me it does not seem like a very common occurrence.) Much of my research with Clusters has centered around an inflammatory substance called Tumor Necrosis Factor (TNF). This is one of many substances produced by the immune system. When you need it, it's great--it eats away tumors. When you don't need it, it can cause a huge inflammation problem and has been implicated in all sorts of disorders. High TNF levels have never been proven in Cluster Headache but I can't find one study that has explored the idea. I suspect that cluster sufferers have high amounts. The reason that I bring this up is that the psychedelic therapy is very good at lowering TNF levels, to the point that all hallucinogens that hit the 5ht2a receptor (the receptor that LSD and Psilocybin hit) are considered "super potent inhibitors" of TNF. I think even if it is just one part of the equation this reduction in inflammation helps tame down the clusters. With MS, high levels of TNF have also been found. The problem is, that when TNF has been lowered in these people sometimes MS seemed to get worse. There are some cases (mostly with rheumatoid arthritis) where people went on TNF lowering drugs and somehow ended up triggering an onset of MS that was not there before. Admittedly, the way the hallucinogens work to lower TNF levels is a very different way then the way prescription TNF inhibitors work, but whether or not it could produce the same symptoms is anybody's guess until we do more research. Searching the internet you don't find a lot of reports of people with MS taking psychedelics. When I looked (not super hard or for a long time) I found 2 cases. One was about a woman in the 1960's who had received legal LSD to treat her MS. Supposedly it did not work, but there was no mention of her actually getting worse. The other report was from a guy claiming his girlfriend with MS had taken 1 gram of mushrooms and thought that it had made her MS flare up. On the other hand, here is a person talking about clinics in Mexico that treat MS with Ibogaine, another hallucinogen somewhat related to the ones we use for busting. http://www.thisisms.com/forum/natural-approach-f27/topic24133.html I wish I could tell you that the psychedelics are good or bad for MS, but unfortunately I don't think anybody knows that for sure at this point. I do know that stimulating certain muscarinic receptors have been shown to be helpful for MS and some of the substances that I have found helpful for clusters as well. These are substances that you need to be pretty careful with, like Mandrake and Datura. Let me know if you are interested and I will share whatever info I have on it. Good luck, Ricardo