Kat sounds like you have a good mix of prevents. When you say that O2 did not work for you, are you sure that you were using enough lpm and also with the right kind of mask? We have great info here and lots of people to answer questions.

since hearing you all rave about red bull i have some in the fridge and it works most times.  I was on 10 - 15 ml per min of o2 and I am in Idaho.

Kat, how long has your latest bout lasted?  If its just a few weeks, its too early to say you've gone chronic.  My bouts last between 2 and 8 weeks, often with a few intense days of real screamers interspersed with quiet periods where, as you described, I have a minor but fairly permanent headache.  Then they come back (as is happening now).

As my cluster comes to an end, the headaches lose their pain, but not the sensation of my nerves in my head doing the fandango. I get little tugs and shudders and twitches that I can feel deep in my head, but they are not too bad - there can be a quick, sharp pain or two that lasts a few seconds, but nothing horrible.

  Eventually, however, they go completely and peace, tranquility and bonhomie return. Birds sing and butterflies flutter and fornicate joyfully, squirrels gather nuts and Angels do choir practice and all becomes well in my little world. Hopefully this will happen for you too

That's good news Kat It sounds like you've found something that works.  The next step is to see which of the meds you can do without...

I am no longer seeing the pain management dr whom I told for three years my head was hurting, lol, so I am off of the methadone which never really helped me anyway; but try telling that to a dr who thinks he knows it all, again i have to laugh at that!  I hear what you are saying Buzz, and I am hoping to be able to give up something; where I wasnt sleeping at all before, now I am sleeping way too much, lol.  The pharmacist says it takes quite some time to get used to the lithium especially.  Again, it is so nice to have an entire week pf!! Im celebrating and hoping you all have a week pf!!

Does your O2 mask have a bag on it? Are there any open holes on the side?

Do you hyperventalate the O2? Do you get on the O2 at the first hint of pain?

These are all important to O2 use for CH.

Don

Thank you all for your great input. I have been addicted to water for a very long time and drink large amounts, lol. I have a fiber supplement that I am taking for the very reason you gave Joe!  My o2 mask is a full face (think they call it non rebreathable mask) it does have holes in it for exhaling. The o2 was prescribed at 10 to 15 along with verapamil for 2 weeks with no success.  The lithium and topamax has helped a lot until today when I ventured out and the the bright sun and heat really bothered me as it always has.  That being said it is time for my next dose and I believe some ice is in order. Thank you all so much for listening to me.  I dont know much; only what I hear from you, and I do read your posts and appreciate them very much, and what I experience each day in my own life. God bless you all and I wish you all the best and hope you all have as many pf days as possible.

Sorry Don, I didnt give full details, the mask has a bag and holes for exahaled air to go out. when i inhale it comes from the bag where the oxygen is stored and exhaled thru the holes. Is this the correct mask to have?

Joe, I know you also have chronic ch from reading your posts.  Do your eyes drip, nose stuffy and drip constantly and does your ear drain?  Mine do all the time. 

i have so many quesrions and i hope you donr mind ....  does brigt lights, especially sun light and hea trigger your ch because they sure do mine ... and i get chilled one minute and am burning up the next.

Kat wrote on Jun 11^th, 2010 at 12:08am:


Kat, Joe is actually episodic - just having a long cycle this time. Nose runs and eye turns red and is droopy but does not water. These symptons only present during CH attacks or heavy shadows. He has no ear problems.

I'm his wife, he's just heading out the door so I showed him your post and that's what he said to tell you.

Christy

Thank you all again, I was beginning to get the idea that ppl are affected in different ways and have different triggers.  My neurologist has said to stay away from alcohol and so i do; never was a big fan anyway; my addiction is water, lol, and it sounds like that is a great addiction to have.