Leaderboard

The important thing is psychedelics are being reintroduced to society in a rational manner. Responsible researchers are conducting studies in a though and thoughtful way. Hopefully their results will contribute to the rescheduling of these substances so folks have an opportunity to explore their benefits without fear of prosecution. Having psilocybin or LSD available as a pharmaceutical type medication will help answer questions about dosing, frequency and efficacy. The effects and benefits are so strong it will be hard to argue psychedelics have no medical value.

City wide garbage sale today. One of my treasures was a new to me welding O2 tank. $35 with a 2 wheel cart.

Hello Cluster world, I'm new here. Currently eperiencing my first cycle (28yo female), misdiagnosed for 4 weeks as sinus headache, getting into a neurologist before December due to a cancellation. I've had migraines for 15 years but wow... This is a whole new level. I thought I was losing my mind, the pain didn't seem real or the patterns logical... Anyways, I wanted to say thank you all for sharing your stories and insights. I've been digging into the forum and I feel so encouraged by this community. I'm terrified and processing this new reality, but it helps to read about everyone's experiences, and know I'm not alone. Thank you all!

Exi', you might find some of this helpful: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

Cycles seem to end differently for everyone. For some, there's an increase in severity/duration before a cycle ends, for others it's a more gradual tapering. Unfortunately, it is likely that your attacks will return after the pred taper, unless your cycle has actually ended. Sometimes it does seem that the pred will end a cycle, but that seems rare (and there's no way to know in most cases whether it was ending in any event). I would suggest starting on the D3 regimen as soon as possible. There is about an 80% likelihood that your D is too low just by normal medical standards, and a nearly 100% likelihood that it's too low to treat CH. Wonderful that you have such a capable and caring neuro!

@spiny - thank you, really appreciate this info. The more I hear/read, the more faith I have in my neuro (which is so encouraging). On Prednisone and pain is gone, beginning to taper down yesterday and noticed some shadow pain .. hoping the verap will do it's job as I decrease the pred. Question - how do I know if a cycle is ending? Because of the sinus diagnosis, I was on Prednisone twice for a few days at a time, and pain came back with a vengeance after the last dose each time. I'm nervous that the same thing will happen with this round.

While sorry that you have CH, we are very glad that you found us. Read and ask as many questions as you can or care to. By reading the Forum, I think you have some good background info for your Neuro visit. Like Verap is the most often given daily med for CH. It lowers blood pressure. And you want the short acting, NOT extended release formula. It just works better. And you will want to keep an eye on your BP if you increase the dose. EKG's are often done with an increase in dose. Need to keep an eye on cardiac function. Often you will be given a Prednisone Taper Pack to bring relief while the Verapamil gets into your system. While a miracle drug in terms of pain relief for most, it cannot be taken long term due to joint damage. A short burst here and there is about all that your can body handle without risking damaged hips. Most other drugs are considered second tier. Not the best to use and often 'added on' by some neuros. If you are offered Imitrex, you want the injections. Some get by with nasal spray, but it does not work as fast as the injection. Pills are about worthless due to the time it takes for them to work. Take the O2 information with you too! Not all are up to date on how to use it and when to use it. They normally do not tell you how to use it, but for that you have us. CHF is the O2 pro when it comes to covering the subject! And read up on the D3 Regimen. It is awesome for many sufferers. Lowers pain and slows ramp up to allow a better abort if you hit your O2. It is all good for you vitamins. A blood test for a baseline of your D levels and such is stressed when you first begin the regimen. Some start the vitamins and get tested a bit later due to doctors and such. We tend to have low D levels when in cycle or even year round for some. This regimen has really helped a lot of CHers. Some go completely pain free with that alone! ATB!! Your reply to CHF just popped! Sounds like you have your ducks lining up nicely!!!

Thank you @CHFather, oxygen was the first thing my neurologist recommended, and I've got an order in process. Thankfully she seems to be right in line with what I've seen recommended on here - she even mentioned the vitamin D3 regimine once I get my blood test results.

I think Florida (Tampa st pete) would be awesome.. :). Afternoon sail for the first 20 or so. cheers, j

I am with you in any way. I have often myself what I would pay to end my daughter's headaches safely, permanently, and 100% legally, and the answer is . . . a whole lot, whatever the effect might be on my retirement savings. At the same time, I'm not sure that sending this letter individually would matter much . . . aren't there connections in the CH world, even at this small sample of it, to people who might care if they really understood? Gosh, I'm thinking of some people I know who might be able to help. Can this campaign be organized in some way? (Am I jumping the gun? Isn't Entheogen trying to move this forward, with a profit motive? www.entheogencorp.com Are they the right ones to contact with offers to help???) At his blog, the Yale Medical School guy who has done a lot to try to gain attention to the busting tactics supported here, wrote this: >>>My question to my readers is–why aren’t you out picketing? Cluster headache is four times as common as muscular dystrophy, I kid you not. Cluster headache is as common as multiple sclerosis. Yet Jerry’s kids are out there raising $60 million a year for muscular dystrophy research. $100 million a year is poured into MS research. The comparable figure for cluster headache research is… well, close to zero. But if you don’t care about cluster headache research, why should we?<<< Of course, many here, including my daughter, have found relief, thank God. But there's so much more to do. I'm ready, willing, and kind of able. Jerry

I really hate to be the bearer of bad news, but my first CCH struck on Jan. 11, 1970. My last one was at 4am this morning. I experience as few as 1 per day and as many as 8 (aka daisy chain or bone crusher) with 2 being about average. I have never experienced a remission for more than three weeks-and very seldom that long. Some are much worse than others (there is never a good one), but they have been with me for just short of 50 years (I'm 72 yo). I have used most of the tricks memorialized here with various degrees of success as well as endured all of the misdiagnosis, misconceptions, inappropriate medications, horrible side effects, suspicions of malingering/exaggeration, procedures, experiments, studies, heartbreaks, and disappointments which unfortunately are also memorialized on these pages. I have been on the receiving end of unbelievable help and compassion from Drs. Kudrow, Diamond (RIP), Goadsby, Green, Cohen, Butler, and a host of others. I have also been subjected to the most egregious and reprehensible mistreatment imaginable at the hands of the most morally challenged as*holes masquerading as pseudo "medical professionals" that the VHA has to offer. Most importantly though, I am still alive and have had a satisfying life-quite different from what I was planning on Jan. 10, 1970 1LT USMC-but satisfying none the less. Since all of my medical care has been provided by military/VA, I actually have all of those years documented. Imitrex twice daily (approximately $500,000+) since it was approved saved my life, but ultimately caused two MIs on consecutive days. Silver lining: discovered asymptomatic CAD and got stents in time. Now its oxygen at 16 mL and opioids (Don't let anyone tell you that opioids don't have a legitimate place in the treatment CH-used properly they most certainly do!!! Moral of the story: We clusterheads are all different while at the same time we are are the same-special. We have a wealth of knowledge and experience which we are obviously quite willing to share, discuss, and even argue about. Wish you great success.