Leaderboard

Please ask questions here. I will try to answer them in a more timely manner than last year. I'll have help this year as well. You can also message me on Facebook (eileenbunny) or email at conference@clusterbusters.org. We are so excited for DENVER!!! - Eileen

I second CHFather's O2 statements. To the first question...yes.....someone can go from episodic to chronic....and back again. I know first hand because it happened to me. Now...I want you to take the following as just another piece of information from someone's experience, not as full on truth. Keeping that in mind I'd like to address Verapamil. Verapamil if often one of the first drugs a doctor will prescribe for CH. I know it sure helped me.....at first. I was on it for several years. At first when the cycle ended I could taper off and be drug free until the next cycle. After a time that changed.....the cycle would appear to be gone but if I tried to taper off, the CH would return. Enter the "controlled chronic" stage...and then the "not so controlled chronic" stage. After having quite enough of my head hurting I decided to make changes....tapered off verapamil during a low cycle while trying every known alternative...repeatedly. It took a while....a good while....but my head is now clear enough to just use D3 to stay PF. I know the CH is there.....just below the surface. Those "funny feelings" come every once in a while causing me to up the D3 for a while. I'm not cured. CH changes, adapts and never really is far away. I know that tomorrow I could wake up running for the O2 tank, but for now....head wise life is good. I'm not a doctor. Just someone with CH that believes continued Verapamil use turned me chronic for a while. As stated before...this was my experience. Everyone else in the world could be different.

'mandy, I'm sorry for your husband's situation, and I know it's very rough on you, too. Let's start with O2. I take it he's not using it at all right now, because he can't get tanks affordably. Not sure exactly what that means, but many people find that welding oxygen is easy to obtain and less expensive over the long run than medical O2. Can tell you more about that if you want. You say he has the correct mask: Do you mean the "Optimask" or "ClusterO2 Kit" that is made specifically for CH, or do you mean he has a standard non-rebreather mask? I'm going to say that 90-plus percent of people who use oxygen in the most effective way get excellent aborts -- flow rate of at least 25lpm; special mask; tanks (not a concentrator); effective breathing technique; and quickly drinking an energy shot at the start of the attack. If he wasn't doing it all that way, he should try again. We can walk you through it. (I'm going to guess that it might be hard to get him to try O2 again -- It's a perfectly reasonable but sometimes frustrating thing about people with CH: they just don't want to get their hopes up again and then be disappointed.) I can't comment on that effect of the Trex injection, but do you/he know that the injections can be split so each one is a smaller dose? Most autoinjectors deliver 6mg; but virtually no one needs more than 2mg, or 3mg max, to stop an attack. A lot less expensive, too. Here's a file. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Note also that many people are getting sumatriptan in vials with syringes so they can administer their own doses. His doctor was almost certainly wrong about his D level being too high. Strongly urge you to directly contact Batch (who developed the D3 regimen, and who will be happy to help you -- do not hesitate to reach out to him). Send him a message from here: https://clusterbusters.org/forums/profile/17422-batch/ Shrooms have to be taken every five days, usually at least three times and generally more for people with chronic CH. Triptans block the effectiveness of shrooms, so he can't use the Trex while busting with MM.

Heyyyyy.... Is there really no thread here? I may be able to share my room...

As long as the situation allows, I will be there! Looking forward to seeing you again!

Greetings... Personally I've never had altitude trigger an attack but I know that some have. Where I live is about 1000 ft....where I snow ski is an hour and 45 minute drive and the elevation is roughly that of Denver so I'm not worried. If flying is a trigger for you Denver could still be ok as cabin pressure is roughly equivalent to 8000 ft. Denver is roughly a 5400 average.

just found out about cluster buster im soo happy to know im not the only one and you guys understand what this pain is . the emergency rooms told me i dont need oxygen they had no idea what cluster headache was im looking forward to denver conference in september 2018