BoscoPiko

Hello to all you awesome guys and gals, Recently I have been experiencing some stellar shadows, I am unsure as to why but am chalking it up to summer approaching. While my cycles in the past have mostly been during summer months, so much about them has evolved and morphed over the past few years that I use the word “chalking” because I haven’t a definitive reasoning. I am still on the “Full Monty” D3 reg and it has been brilliant for some time. I also do maintenance with RC. The shadows this time around are intense, and I can only assume the cluster bunny is hot on my tail. I’ve recently increased my D to 30,000 IU a day and received a few shadow less days but that was short lived, and they are back. My question is about the time of day I am taking my supplements. I split my intake into AM and PM. Are my AM supplements being less effective because I have an empty stomach? Are they just sitting in my gut and not being dispersed properly by the digestive process that takes place with food? Sorry if this is drawn out and scattered, my brain is being quite unfriendly at the moment. Any thoughts are most appreciated.

Sometimes everything feels so hard. Each day seems to drag the finish line a bit further and further away. The same dinner is served for weeks on end and yet we are expected to eat up with some make believe fervor, we choke it down. We push through... we always have and always do. We go through the motions rehearsed so we'll, mechanical, methodical and knowing. Yet reprereave is a goast? Dominoes waiting for that one flick. Maybe at times even praying for the push to let us lye, rest, rejuvenate, be as strong as everyone on the outside thinks and wants us to be. The truth is that we all get worn, knackered and just undone. None of this means the end. Not yet anyhow. It's yet another challenge, a hard one at that. In the words of someone I appreciate... "cluster heads are no woosies'! Hang in there @jon019! I've come this far because of people like YOU!

Massive well wishes sent your way @jon019! We need your kind of know it all around here

Glad I'm not the only one noticing absence.. Thanks for the response Jeebs.

This may seem silly but I've been thinking of @jon019 because he is such a regular on here and it feels off him not being around much of late? Anyone interacted with him lately? @jon019 you doing good bud??

Never meant to scare you but what good are we if we don't share what we know or experience.. BOL Kat!

Hey Kat, I've also been on it daily for a few years and have debated stopping. I am reluctant because I've read on here that a few people that stopped found that it didn't help any longer after restarting.

Rite there with ya Spiny! Some time back when my husband got COVID he had no craving for coffee so he stopped drinking it. Weeks after getting over it, we couldn't figure out why he was having bad headaches daily until it dawned on us he was having caffeine withdrawals... I tell ya what, that man turns into a manchild when feeling ANY ailment so coffee it was!

Good luck to you! Don't think you need it as much as you think you do but luck sent your way! I've never had success with energy drinks but have had decent success with coffee. Unfortunately both are addictive and both cause withdrawal headaches. Here's to your success!

I'm with ya on the strong vapors emitted from substances.. Bleach is a no go as is pine sol. I don't think what you are experiencing is unheard of. Seems that the tendrils of this kill joy condition reach far and wide. Maybe use a negative pressure 100% outside air intake system?

No I think that COVID has been such a dominant factor in our lives of late that you most likely are seeing it more because everything is being chalked up to COVID even if it's a different respiratory infection. Sort of like getting a new car that you don't see on the road all that much but when you yourself get one all the sudden you see them everywhere.

Hi Chole, I had COVID a long while back and got lucky as it only lasted about 5 days and did not aggravate my ECH. However I had that new strain of flu a few months back and it threw me and my CH for a loop (caused out of cycle random attacks). I think any type of infection/virus that depletes the system can cause this not just COVID. Thankfully I did not turn chronic either. The effect of COVID for me was similar to the now old fashion flu bug and lastly I couldn't answer the busting with M/L as I have not had to try them yet but if it makes any difference it did not interfere with RC busting. Hope you are doing well!

During an attack the blood vessels swell and or go through a flooding of sorts, causing more blood around the brain. The over flow of blood and pressure surrounding the nerves can cause an attack by sending a pain message to the brain. Caffeine restricts the vessels limiting the intake of blood to the brain thereby aiding in the abort and or ceasing of the attack. Hope that makes sense.

I also use the hot water method and need no less than 105-106 to get er done.. This high temp is also effective in bringing you down from unwanted side effects from things like alternative medicine...

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.