preparing for the storm and living to win during a non-cycle

[Jimmy Martinez]

Hi Friends, I'm 53, my CH began at 37. I get them about every 12-18 months for about 4-8 weeks. Maxalt, Verapamil, and Oxygen are my top 3 "helpers". I will though explore busting and anything else that can help prevent, reduce, or extinguish the pain.

I'm thinking about the stretch of time between the attack. I'm basically healthy. No smoking, drinking, fairly decent diet. I'm thinking about what I can do to gear my body (and mind) up so that if a cycle comes, I'm ready for it and maybe I'm so "fit" that the severity and length of the cycle gets reduced.

Should I take vitamin D regimen throughout the year?

Bust every 6 months just to keep the brain peaceful?

Lift weight like a madman?

Breathe from an oxygen tank or get into deep breathing exercises?

what can I do to prevent the cycle or if I I can't prevent it, what can I do to stockpile and prepare when the battle comes?

Is sounds like people who bust do it every few months as a lifestyle thing that also either prevents the CH cycle or it makes it so that when the cycle comes, it's weakened dramatically?

My primary doctor (not headache doctor) told me that the faster you get to the oxygen when a cycle starts, the better chance you have of destroying the cycle. Maybe just pound oxygen for a few days straight and perhaps that can kill the cycle before it can "take off"?

we are all different but I'd love to hear more from the people who have either found a way to cure themselves or make it 1000% easier and better to deal with.

is anyone in LA and would anyone be open to phone call about all of this?

my thinking is that if I throw enough things at CH and try as many combinations or remedies as possible, someone will break loose and big time progress can be made.

has anyone put together an entire list of EVERY SINGLE remedy or option we have to throw at this condition?

I'd love to see that list and hear what other people think about it.

also, if we use drugs like lexapro or Vyvanse or any type of drug for ADHD, depression, etc, could that help with the CH?

how about cold plunge therapy. it seems cold helps with CH.

or the caveman diet?

there has to be a combination of things that can make a big difference.

who is the most successful person to ever combat CH? I'd like to read their book.

thank you all and I truly believe  by sharing information and persevering, we can help each other end this ailment FOREVER.

 

 

 

 

[jon019]

...a few thoughts....

 

18 hours ago, Jimmy Martinez said:

Hi Friends, I'm 53, my CH began at 37. I get them about every 12-18 months for about 4-8 weeks. Maxalt, Verapamil, and Oxygen are my top 3 "helpers". I will though explore busting and anything else that can help prevent, reduce, or extinguish the pain.

...those work, the alternatives like busting an DMT even better...

I'm thinking about the stretch of time between the attack. I'm basically healthy. No smoking, drinking, fairly decent diet. I'm thinking about what I can do to gear my body (and mind) up so that if a cycle comes, I'm ready for it and maybe I'm so "fit" that the severity and length of the cycle gets reduced.

...mind just as important as body, whatever makes you more mentally fit can only help, if that's physical fitness great. it surely can't hurt. whether for CH  i dunno.  live between the hits and prepare for battle. 

Should I take vitamin D regimen throughout the year?

...yup, many do (at least a form of) as a prevent and for general health...most folks are D deficient...

Bust every 6 months just to keep the brain peaceful?

...only you can answer that. but as a CH strategy figure your cycles or warnings of a cycle and try to bust proactively....waiting til full in cycle makes the job much harder....

Lift weight like a madman?

...exercise during a hit can sometimes abort...others find it a trigger..

Breathe from an oxygen tank or get into deep breathing exercises?

BOTH...there are several breathing techniques....my best success was combining deep SLOW breathing/meditative mind while on O2. i found daily 20 min meditation extremely important to my mental health with a stressful job and frigging CH...

what can I do to prevent the cycle or if I I can't prevent it, what can I do to stockpile and prepare when the battle comes?

...bust proactively after determining your cycles or learning the warning signs of a cycle. stockpile ALL your tools, keep your scripts active (especially O2), maintain active connection with the physician you trust....

Is sounds like people who bust do it every few months as a lifestyle thing that also either prevents the CH cycle or it makes it so that when the cycle comes, it's weakened dramatically?

...probably...many report so. if you are comfortable busting and have the time...go for it!

My primary doctor (not headache doctor) told me that the faster you get to the oxygen when a cycle starts, the better chance you have of destroying the cycle. Maybe just pound oxygen for a few days straight and perhaps that can kill the cycle before it can "take off"?

...oh dear...NO! O2 is NOT a prevent...abort only. maybe what the doc means with a little confusion is that it is CRITICAL to hit the O2 at FIRST sign of a hit, small delays equal  LOTS more pain. a 2 oz energy drink greatly increased efficacy of O2 for me, sometimes all by itself...

we are all different but I'd love to hear more from the people who have either found a way to cure themselves or make it 1000% easier and better to deal with.

...there aint no cure...stockpile your tools and techniques (one example of that, i avoided caffeine during cycle except for a hit abort...otherwise it became a trigger (not out of cycle)). i repeat...live between the hits. depression is just around the corner  for us w/o our tools, knowledge, family here, family your own and a dtermination not to let the bastard beast beat you...

my thinking is that if I throw enough things at CH and try as many combinations or remedies as possible, someone will break loose and big time progress can be made.

...its what we do to find the "it". just be careful you don't throw so much shit against the wall that you don't know WHICH one worked...or which combo. then you have to do all that all over again every time. lots of self testing must be going on...we got no choice...

has anyone put together an entire list of EVERY SINGLE remedy or option we have to throw at this condition?

...no, but there are several surveys out there that sorta do with some tools. one is at clusterheadaces dot com...cluster survey...

also, if we use drugs like lexapro or Vyvanse or any type of drug for ADHD, depression, etc, could that help with the CH?

...dunno, i tried amitriptyline once...most awful side effects next to topiramate...did squat for CH...

how about cold plunge therapy. it seems cold helps with CH.

...yuppers, works for some...and also the other extreme...hottest shower or tub/foot bath...

or the caveman diet?

...keto diet works for some. i am a carb junkie and could never do it. if you can its certainly worth a try...

there has to be a combination of things that can make a big difference.

...ABSOLUTELY...your mission, mr phelps, is to find it (thanks to DD for the MI reminder) 

who is the most successful person to ever combat CH? I'd like to read their book.

...we are a bit biased...that would be Mr Bob Wold...but there are too many other hero cluster warriors to name here)

thank you all and I truly believe  by sharing information and persevering, we can help each other end this ailment FOREVER.

..we are our best and sometimes only advocates..

 

 

best,

 

jon

 

Edited 22 hours ago by jon019