BoscoPiko

Sorry to hear that @Rod H. Hope you kick the beast soon!

Aww... your poor mom most likely is offering up all she knows to try and be helpful. I'm sure it's hard on her to know you suffer! My husband tries to help but get's so frustrated with his inability to make anything better that at times I feel bad for him! I've learned to just stay (try and stay) out of ear shot or visual sight from him when being pummeled. Here's to hoping you stay in the clear my friend!

Yesterday and stay on it when out of cycle as well. None of the regimen will hurt him and will only up his amune system.

LOL nah.. You know me, gotta give everything awful a cute name

Thanks for the warning! I tried but had some leakage

Hi XLRSD, Glad you found us! I believe some of the planned conferences were virtual due to the rona outbreak Here is a copy and paste of the most recent conference info: Registration for the first annual Clusterbusters U.K./European Patient Conference is open! Join us in Glasgow for what promises to be a memorable inaugural event. Register today. https://cbglasgow2023.planningpod.com/

Lol no @Shaun brearleythats me planning the route to your place.. If I gotta fly in that thing your coming with me!!

I get it! Distractions are welcomed in the CH world but I'm a sissy when it comes to molten lava coffee (the kind that leaves your taste buds dead anyway)

15 LPM's can be insufficient for some but generally decent if you are not outrunning the bag on your non rebreather. Hyperventilating is just one method amongst many so don't get caught up on one method. Try many.. deep and hold, short, quick and hold, etc. I also experience better success at lower thresholds of pain/intensity. That's not to say that you can't abort a thunder striker. Caffeine is a helpful tool however at a scorching temp you are setting yourself back in the abort process with the inability to get the caffeine into your system quick . Try making strong coffee and placing in the fridge so that it's cool enough to down and get back to the 02. The trifecta experience you have with left, rt and center is rare but not impossible. As far as what hyperventilating is ...think of the kid with the brown paper bag breathing as fast and hard as he can until on the verge of passing out or puking. (Not suggesting that you do this but trying to paint a pick). Sorry you are battling the cluster bunny but hopeful you can slay him..

This is uplifting! I can't help but to become so tired of the "we don't know, how or why" often mentioned in so many research studies. I suppose this recent development/research study is not much different in that way as of yet but the specific dedication to CH is a positive and makes me feel hopeful.

Us guys have all the pain.. Hearing Rod Stewart this lovely morning

Lol Jeeb I'm only living bi-carisouly through Kat! I do have a renewed sense of hope due to her success though!

Thank you Spiny! Now that I know your southern I will only be concerned if you say "Bless your Heart"

LOL there he is.. Nice and quippy

No worries Jeeb. Truthfully.. I think I'm just getting tired.. Yep this is the part wearing me down.. I've got my faith so thank goodness for that (i know your not religious) but you sure are a good friend! Uff.. I've looked for sanctuary many a time here and am delighted to say I've always found it. Everyone here has been so amazing! I do miss @Shaun brearley and his smart quips. Lots of cool folks on here for sure.

My last attack (a while back thank God) started directly after a piercing ear ringing in my CH sided ear. I thought it was happenstance but did a quick search on here and it seems I am not the only one? I've been doing fairly good during these past 8 weeks of high stress and broken sleep due to my injured Abby girl. She has decided that 3am is poop "O" clock which has been most unwelcomed especially in this ark building weather we are experiencing in CA We are so close to removing the cast and seeing if her tendon will engage but boy have we had some set backs.. Infections of the urinary track, infections of skin in high pressure areas under the cast blah blah.. We are so close! 2 weeks to go and I am praying on a daily! I have not been as good as I should have been about taking care of my brain so I am soaking some seeds to dose with tonight, anyhow, I suppose I am more so venting than much else. Possibly in this post I am giving an example of high stress and the body's innate ability to function under it. I was particularly happy to read of Kat's success in flying this Monday as it really gave me renewed hope (Doesn't get much better for a Monday morning read). IDK I may just be in need of finger exercise although it would be nice to learn what folks do immediately after a ringing in a effort to prevent an attack?

This success surely makes me optimistic about traveling to places you can't drive! @kat_92 just curious if you took and or needed to take Xanax? If you did need it how do you think it helped you? Also how long was your flight? My husband and I really want to go to the Isle of Skye in Scotland but I'm so afraid of the lengthy flight. We are in CA so the flight is 13ish hours..

This is awesome news! So happy for you!

Just cause this guy is cool...

Thanks for breaking this down to me. Jeesh...this stuff is further above my head than I initially thought

Thanks for posting this. I am always interested in new developments. Truthfully I was not aware that psilocin converted to psilocybin after breaching the blood brain- barrier. I do indeed need to research and learn much more! I suppose it was sad to read the focus of the study being partially geared toward children with severe anxiety... Since when did children suffer from anything other than how the next mud pie would turn out or if that rock you snuck into the middle of your snowball would inflict a proper sting on your brother's noggin effectively to worry about? I was happy to read the part about the sub-hallucinogenic levels in this study but at the same time conflicted with what I have researched on this site to be effective. Either way I appreciate you posting this. Cheers!

Hi Johnny, The triptans are highly suspected to increase attacks and durations of cycles. I don't touch them unless on my death bed as they have extend my cycles and blessed me with many more attacks per day. Sometimes the effectiveness of prior aborts and prevents just simply become immune to the cluster bunny.. I do have to tell you that the topomax/Toprimax most likely wont help much unless your looking to fog out whilst being banged up. Verapamil can help a bit, but the D3 that you started is what I would consider to be much more effective. I am always so mystified by remission times of the duration you speak of and can't help but ask what you were doing during that time? Maybe your just one of folks that get the longer time off of which I am happy for you. Sure seems like it would be harder coming back to the pain after such a long remission so for that I am sorry. If you haven't already, do have some lab work done to see where your D levels are at along with your calcium (you may need to load a bit longer). The D3 reg takes a bit to kick in so stick with it and do your best to avoid the triptans. Lastly do read the blue banner (new users read here) for additional methods of treatment. I am sure at some point the more knowledgeable will come along and try and help you!

Guess I should have read Jon's post all the way through as he basically said the same thing

Could she possibly just be around something that she is unknowingly allergic to when the attacks come on?