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....well, it's a given Shaun is quite batty, but as for myself...i am perfectly normal since the transplant...

Welcom to the CH club, we are all a bit mad in here, but we have lots of knowledge, so ask questions, tell us your experiences

Poke around, read up and ask questions. You will be amazed at how many people are willing to help and share experiences. Key in on Oxygen and Vitamin D, they are the most recommended treatments to get started with.

Sod off @jon019your mad as a hatter

Welcome, sorry you had to find us but glad you found CB. I had a chuckle at Shaun’s comment but I would agree we are a lovely but mad bunch. I am sure you’ll get the support you need here. I’d be another of the replies to encourage you to investigate the vitamin D3 anti-inflammatory regimen; has worked beautifully for me with eCH.

Very late to the festivities here, but THE SHOULDER KITTY HAS CURRENTLY GONE MISSING FROM THE ACTUAL AVATAR, and needs to be restored there ASAP, right @BoscoPiko??!!

Of course! I think we can all agree that any and all help is appreciated! If there's anything I can do or say to help even one person with clusters, I'll certainly do what I can!

Hey everyone. Been awhile since i’ve been on here. I hope everyone is well and in good health. The last time i was on here, I made some pretty anxious and depression-ridden topics about how i thought my life was over.. boy was i wrong. I’m posting this to further support the tools and methods that have been written about on these forums.. and to possibly give hope to those that feel lost, as I once did. The last 4 years have been some of the most eye-opening years of my life. I’ve made drastic health conscious decisions that aided in my relatively pain-free years. I’ve tried “busting” and diet changes. Both with great success. I listened to my body and found that a combination of Vitamin D3, magnesium glycinate and omega 3 supplements help keep my headaches at low pain levels or at bay. An (almost) gluten free, no msg or additive, low histamine, anti-inflammatory diet helps maintain that low inflammation in my body. Sleeping with my head slightly elevated and neck supported also helps me keep the blood pressure from building. I also found that getting sick with a cold/flu will immediately bring a cycle on. I assume because of the sudden onset of inflammation in the body. Especially in the face/sinuses. Taking valuable information given by Pete Batcheller, (don’t know his @ at the moment, sorry!) the cycles have been very minimal in times where they should have been grave and unforgiving. I’ve learned to accept the fact that I may have clusters for the rest of my life. I’m 24 years old, and for the first time in the 16 years i’ve had clusters, I’m finally OK with it. Where there’s a will, there’s a way. But it’s important to keep in mind that pain free responses will not happen over night. Not every piece of information helped me. Some worked, some didn’t. Having a strong support system of people helped immensely. I can partially attribute my positive attitude to one of the “busting” methods that we know about. These headaches made me appreciate the little things in life, which in turn, makes life much more beautiful. Music sounds heavenly, sights are awe inspiring, love for those around me increase. I can live my life knowing I have the tools and resources to stop a cycle, should it come back. I also learned that hardships and trying times await each and every one of us, but will never make life not worth living to the absolute best of our abilities. The human spirit is truly indomitable. I extend my love and thoughts to everyone here! I’ll be sure to keep everyone updated as I grow older

...ok, speaking for myself, not the "good father", but...1) cost, they lease it to you at ridiculous price, and its an ongoing scam 2) it aint pure O2, something like maybe 85-90+%, we desperately need PURE O2 3) warm up time!? golly that's a killer...every minute you delay oxygen reduces the effectiveness hugely...if it even works at all after any delay. 3) flow rate!?...if it aint enough to keep the bag filled for next breath it's nearly useless...to get more than 10 lpm ya need TWO of them linked....sheesh, try paying/travelling with THAT! 4) speaking of travel, i went EVERYWHERE with e tanks, including a job for 30+ yrs...ya gonna have severe limits with a concentrator. m60 for home, e for travel and backup. 5) they run hot...over heating is a CH symptom, why add it to your room? 6) can ya tell how i feel? it saddens me that some clusterheads have no option thru insurance or an ignorant/greedyO2 shop. if its all ya can get...God bless, and i hope it works for you...it does for some. the likely failure sadly also convinces some WRONGLY to claim the WORST comment a clusterhead can make w/o ABSOLUTE certainty..."oxygen doesn't work for me!" saved my sanity, perhaps life...starting in 1985... ...as for verapamil...i used successfully for 7 yrs...only stopping when i dialed in the oxygen and energy drink and a form of the vit D regimen. nothing less than480 mg/dy of immediate release was effective...over the yrs it seems to be the reported sweet spot for many clusterheads. in high cycle i went to 1000+. as chF said...80 is pointless... j

40mg/day is a very very very low dose. So is 80. As you say, you never know, but the likelihood of this helping you seems to me to be very close to zero.

...if ya want a direct tube to breathe through, any mask will do by just pulling tube connector off mask...cutting off if ya hafto. i couldn't do because it was uncomfortable and the pressure of the mask, CRAMMED into my face, actually helped. just be sure to plug/squeeze nose so you are getting pure O2 only...which is critical.... ...btw...if you got a typical nonrebreather be sure to tape shut those dang holes on the side...a slight lift off the chin to exhale worked best for me... j

as is said here -- welcome, and we're sorry you have to be here. you might want to start here for a general overview of some treatment things: Basic non-busting information - ClusterBuster Files - ClusterBusters The great people here will help you any way they can.

Aww big sigh of instant relief! Fabio's cool but Fabio with sholder kitty.. 2 cool for school.

Just as an aside to my post above, I have been using AI lately for complicated work projects with amazing results. If you haven't messed with AI yet, I'd suggest just going to ChatGPT.com and using the free version. I had pasted an image below, but it doesn't seem to show up. I asked ChatCPT to take a photo of me that I supplied and dress it up for my avatar, which you can see, This is completely trivial but an example of fun you can have. A more complex example, I asked it to give me a list of all Chicago Public Library branches located within a state legislative district (state house or state senate) where the legislator has a Hispanic surname. There are about 80 branch libraries and about that number of total state representatives, so you might imagine how long it could take to do this the old-fashioned way. With one more query, I had an answer in less than three minutes (about 90% correct). Or, if you ask about the best ways to treat CH, or the pluses and minuses of using psychedelics to treat CH, you'll get a perfectly good answer in a few seconds.

....re disability, vet or not, it is critical to list any comorbidities...the award decisions can be so arbitrary that one seemingly insignificant one may be the key to success. i got disability for a serious but non fatal illness partly because my doctor listed the potential mental health issues caused by the disease that we had discussed. the SS approval letter specifically noted these potential effects as having significant weight in determining qualification. i will be forever grateful that my PCP had documented EVERYTHING...and was willing to sign off on the need for disability. find an advocate doc....its JUST like we need for CH.....

The info about the VA and how you got coverage is super helpful for vets who might be dealing with the same thing. I didn’t know head injuries could be linked, but your story makes a lot of sense. Appreciate you taking the time to post this.