My neuro that I am just starting to see has already said he is going to write me up a ticket for O2 tomorrow so I can start trying that (yay!". Meanwhile - he saw me with a coke in my hand and mentioned that I need to stop the caffeine though, as it's a "double edged sword".

Okay I'm glad I'm getting the O2 from him. I had yet to get any doctor to prescribe that so I could have it at the onset of an attack. He is also willing to try Lidocaine, Imitrex, etc. More than I normally get.

However - the comment on Caffeine makes me doubt he really knows what he is talking about with Clusters. He said he has had patients with them before, and that's why he already told me the above treatment options. And for a change at least they are closer to what I expect for treatments on a cluster than anyone else has bothered to try. But still - no caffeine? That seems like a death sentence.... Normally that is the ONLY thing I have ever had abort one for me.


Thoughts?

Perhaps the doctor meant to quit using caffeine except when using for ha???

You build up a tolerence for caffeine when you use it all the the time. Thus reducing its effectivenes when you really need it. But prepare for caffeine withdrawl ha's if you try that.

erk wrote on Apr 30^th, 2013 at 5:56am:



EXCELLENT erk...exactly my experience. Caffeine at the "wrong" time...or too much....actually increases my hits...and decreases it's effectiveness when I most need it. I believe...save the hammer for the highest nail...it ....really...works!

Best

Jon

My doctor told me the same thing about quitting caffeine.   I did. My CH got better/ quit, BUT I started topomax at same time.   


One thing for sure....    I did Sleep A LOT better.   If it were me,  I'd try quitting just for the sheer shock to your system.   I did not go thru withdrawal symptoms.   You'll  find a few people on here that support the no caffeine......  We are greatly outnumbered by the caffeine lovers.    I'd quit the caffeine to "change" your routine.....
throw the beast off......



That has been several years ago, and I did quit caffeine.    I currently
try to limit my intake, and have been known to slam a NOS if I get a big hit.....


Bottom line,   not gonna kill you to quit in the beginning.  And I really was amazed at the quality of sleep I was getting.    Almost enough motivation to get off the crap completely again !!!!!

Like anything else, there is no one size fits all.  For me, caffeine is my favorite "drug of choice" and does not affect me in terms of sleep.  Maybe because I am a little hyper, it helps me calm down!  The only headaches I get are the clusters, so I do use the energy drinks and O2 for hits when they break through. 

My headache specialist has not advised me to stop the caffeine although she did ask me about its effect on me.  If I were to stop, it would not be when in cycle, though, since I would not want to deal with withdrawal headaches on top of cluster hits!  Just sayin!

JasonD wrote on May 8^th, 2013 at 11:46pm:


I wasn't here ten years ago so I can't comment on that portion, but for the above...remember, O2 is an abortive, not a preventative. When used properly, and many times we hear of its "failure" it is not, I find it to be 100% effective in reducing both pain and time of a hit. Do I need other interventions? You bet. Cuz as they say, the hits just keep on comin'. We need a whole range of stuff (abortives, intermediates, and preventatives) at hand. Does O2 work all the time for everyone? I don't think we know because it isn't used the same way every time by every one. blessings. lance