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?

1.)   Tell the good doctor you have quit all caffeine..

2.)   Thank him sincerely for his kindly advice.

3.)   Get that O2 ticket in your hot little hand!!!

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.

Did you ask him what was meant by the caveat? You can do that in a purely intellectual fashion that would not threaten him or his ego. I think that's the only way to know. blessings. lance

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

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.

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

After visiting with him more that is basically what he said. He also commented how Restless Leg Syndrome seems very common in Cluster Sufferers, and the caffeine certainly contributes to that. But he really just wanted me to use the other abortives (O2) instead of the caffeine. He was more understand of why it worked on further talks with him though.

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 !!!!!

Caffeine is a very common migraine trigger and most doctors will automatically assume what is a trigger for one headache type will be for another.

For me, caffeine was not a trigger for CH and a caffeine rich drink, especially with taurine, was great for dealing with CHs / shadows. However for me it is a migraine trigger, however I've also sometimes used it to kill off a migraine that just won't go away.

It takes a while to get used to being virtually caffeine free and you really miss it when you are needing to work extra late and want to be a bit more alert, but you learn to adapt.

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!

Well part of the reason he also suggested lowering caffeine during non-bouts is that it is a contributer to RLS. He said he has seen it be fairly common for people with CHS to also have RLS. They also tend to be very methodical people.

Curiously enough I did a search for RLS and Clusters - and came to an old thread from this board where a guy was run through the ringer for suggesting the relationship without more proof.

Quite honestly people here were pretty rude to this guy, but it was also like 10 years ago. He appeared to be on to something, since my neurologist also said there is a strong link. It's obviously not a 1:1 ratio, but then again nothing about CH's are 100%. If they were, then O2 would just work 100% of the time and we would need nothing else right?

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

but then again nothing about CH's are 100%. If they were, then O2 would just work 100% of the time and we would need nothing else right?

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

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

He said he has seen it be fairly common for people with CHS to also have RLS.

I would ask him where he heard this...

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