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Posts
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Posts posted by BoscoPiko
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Glad I'm not the only one noticing absence.. Thanks for the response Jeebs.
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Never meant to scare you but what good are we if we don't share what we know or experience.. BOL Kat!
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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.
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1 hour ago, spiny said:
I'll not give up my morning cup of coffee till I can no longer serve myself I suspect.
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!
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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!
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4 hours ago, devonrex said:
Strong cleaners and such can do the same
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?
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1 hour ago, Chloe Chriselle said:
so keen to understand if there's a commonality here (or perhaps I seem to be only picking up on stories of COVID making CH much worse...)
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.
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11 hours ago, Chloe Chriselle said:
- Did having COVID have an effect on CH?
- Did ECH-ers turn CCH after a bout of COVID? If not, did it affect the frequency / duration of your cycle etc?
- For CCH-ers, was there any effect on you?
- And probably more notably: if you were previously successfully busting, did having COVID affect the efficacy of your usual Vitamin M / L busting methods?
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!
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On 3/26/2023 at 4:09 PM, mikeh2017 said:
Going through an episodic cluster. Currently less strong than in the past but symptoms remain. Oxygen doesn't seem to be working for me but A few nights ago finally tried downing a can of cold monster energy and somehow after 10 minutes it seemed to have an effect- felt at the lower part of my skull /neck where I assume pituitary / hypothalamus is . Symptoms receded and promptly fell asleep. Was impressive. Is there any research into why they may help?
On 3/26/2023 at 4:09 PM, mikeh2017 said:Is there any research into why they may help?
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.
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9 hours ago, mikeh2017 said:
How effective is this for you? How hot does it have to be?
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...
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Sorry to hear that @Rod H. Hope you kick the beast soon!
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2 hours ago, Rod H said:
I'm gonna fwd that to my mom. Now that she is 72 maybe she will stop offering aspirin.
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!
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1 hour ago, Frilling said:
My husband has Episodic Clusters...his cycle starts on or about June 1st . How soon should he start on the Vitamin D regimen?
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.
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4 hours ago, Shaun brearley said:
@BoscoPikos--t did the US have a different virus than the rest of the world ,RONA virus
LOL nah.. You know me, gotta give everything awful a cute name
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Thanks for the warning! I tried but had some leakage
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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.- 1
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5 minutes ago, Shaun brearley said:
@BoscoPikogreat save me driving . Mind you got to be fair only it is only 2 hours 39 mins away from my house
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5 hours ago, Shaun brearley said:
@BoscoPiko checking out her route to Glasgow Airport .
Lol no @Shaun brearleythats me planning the route to your place.. If I gotta fly in that thing your coming with me!!
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11 hours ago, Vajenna said:
Woo not me I take the pain of the hot coffee as a great distraction.
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)
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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..
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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.
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1 hour ago, Dallas Denny said:
Some folks have all the luck
Us guys have all the pain.. Hearing Rod Stewart this lovely morning
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1 hour ago, Bejeeber said:
Ooh. @BoscoPiko and @kat_92 now that you're complete flight-a-holics, it should safe to assume you'll be attending.
Plus @kat_92 should have the deets for us all by now on best deals for cute luggage.
Lol Jeeb I'm only living bi-carisouly through Kat! I do have a renewed sense of hope due to her success though!
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Just wondering
in General Board
Posted
Massive well wishes sent your way @jon019! We need your kind of know it all around here