Leaderboard

Thanks! I felt very prepared to go to the appointment with all the knowledge I've learned from these forums! Neurologist was knowledgeable and helpful. Happy to write a prescription for high-flow 02 and asked the staff to start looking into supply and insurance. She also gave me Rx for 2% viscous lidocaine - and she pulled up the ClusterBusters website to show me where to find instructions how to use it intranasally! And gave me samples and Rx for Sumatriptan injection. And she will increase Verapamil if needed. Since I've never had an MRI, she suggested I could do that with a focus on the pituitary gland. Since I'll need blood work done before the MRI, I asked to get a reading of my vitamin D3 levels to see if that's low. Lmk if you have any advice about this course of action.

Huge fast breathing worked for me yesterday! I've been in a cycle of attacks for 12 days, taking Verapamil, and asked to get prescription of O2 but doctor said they don't prescribe that. (Going to see neurologist today to see if they do.) I started getting a daytime attack yesterday morning, and started "hyperventilating" if that's the right word - taking huge deep breaths, sucking air in and pushing it out rapidly, to try to mimic what I've seen people post about using O2 for attacks. Attack aborted in about 5-10 minutes. Started coming back half hour later, so I did the breathing again, and aborted in 10-15 minutes and no extreme pain. Thanks for sharing about the Wim Hof technique - seems similar to what I did, I want to look into that... I know I have a problem with shallow breathing when I'm stressed or when I'm too much in my mind - not sure how that is related to CH or the regular headaches I get when not in a cycle, but definitely seems like oxygen and breathing is a factor.

https://news.wisc.edu/uw-madison-pioneers-masters-program-in-therapeutic-use-of-psychoactive-drugs/ It’s interesting they are establishing a degree path for a subject that still has a way to go in terms of legal availability. It might be fun to do but its 31 credits at 1500.00 a credit. That’s a lot to cash for a basically useless degree.

Thanks, I definitely want to get the O2! Here's the page she pulled up on lidocaine nasal: https://clusterbusters.org/resource/home-instructions-for-intranasal-lidocaine-sphenopalatine-ganglion-block/

Great!!! Consider splitting the injection if it's 6mg (and if you use it): https://clusterbusters.org/forums/topic/2446-extending-imitrex/. This knowledgeable doctor might be willing to prescribe sumatriptan in vials with syringes. You should probably try the triptan nasal spray, too. I suppose you could start looking on your own for O2 suppliers. Depending on your area, Lincare and Airgas are typical big suppliers. Just google medical oxygen. I don't know that many people are using lidocaine to help with aborting attacks, but maybe I've just missed that. What I've read about it is typically a 4% solution, but again, I have very limited knowledge. The MRI is a good idea. As I say, sounds like a good doc! Hooray!!!

https://apnews.com/article/ann-arbor-plants-featured-ca-state-wire-mi-state-wire-b0ce69ca0961c150e0f900e8ea4cf432

I don’t think the vaccine itself will worsen a cycle. I do believe other states of inflammation will mitigate how bad a cycle can be. The injections do incite an immune response which is variable between individuals. The second shot seems to bring on more symptoms in people who have reactions. It’s even worse in folks who had the virus and chose to get the vaccine. I do think its worth considering the vaccine because COVID itself releases such an aggressive immune/inflammatory response it’s bound to exacerbate a cycle or make a chronic more miserable.

I finally got the Zok after Facebook kept advertising it to me. I wish I would have gotten it sooner. I think I busted my ear drum, but the pressure is noticeably reduced. I use the NEGATIVE PRESSURE mode.

Sorry to report that we have lost yet another clusterhead sister who opted for suicide as a solution to escape the pain!! Marie is from France and leaves behind two young children and her husband! We have lost soooo many to this hideous affliction in the past few months!! DD

Hi. Name's pronounced 'Rori'. I battled unremittant chronic CH with upwards of a dozen distinct hits per day from mid 2011 through fall of 2017, and can happily say that I have had nothing but light shadows since my old hippy mother found the Busting method here and my somewhat sketchy connection came through for me. At the time of the attacks I had worked to convince myself that what I was experiencing was a mild form of the disease -- only after they faded from my life did I understand what I had simply grown accustomed to. No, wanting to trepan ones self to stop the pain is not a mild symptom. Loss of motor control and blackouts due to pain are not mild. The title says it all. For six years I was functionally disabled (though the medical establishment says otherwise), socially isolated, and completely controlled by the raft of CH triggers I experienced, which seemed to range everywhere from sleep to caffeine to spicy foods and dust and... just... I think that the whole world would be best described as one big trigger. I wasn't able to drive a vehicle or operate power tools safely, couldn't ride a bike or walk quickly, couldn't get around florescent lights or anything that produced a frequency, and my doctors... Propranolol gave me the blood pressure of a corpse. Amitriptyline made me forget my name and address. Imitrex and Topomax made it worse, if at all possible. After I refused to take the Topomax my Neurologist refused to see me. MRIs and CAT scans came back 'perfectly normal'. Then finally the stars aligned . . . I went to a liberal arts college (the CH started right after graduation) and friends had given me magic mushrooms in the past. I had been hoarding my single remaining baggy trying to make microdosing work. Nope. Not effective. And then I met a girl who drank too much, and needed a miracle of her own. Where my personal thoughts to myself were to Gut Up and Deal (see above re: mild case? I'm from a Navy Family...), I found that where I lacked the audacity to reach out to friends for my own sake, when I fell in love with a girl who drowned herself in minimum half a liter of vodka daily and knew she wanted out, I found that strength, at the moment when my network had a solid connection. Its amazing what you can do for others when your own strength is failing (again: Navy family). Several ounces of psychedelic and two years later, I am still cluster free, able to see, drive, hold down a job, and THINK, while the girl who is now my wife hasn't touched liquor in two years. Yeah. Y'all saved my life. Thank you. Keep fighting.