I have had CHs now for 16 years and each time a cluster hits I'm at a loss as to how to proceed. Prednisone works but only until I wean off. Every year is different though and one year it kicked it when the dose pack was started half way through my season. One year verapamil worked and other years it didn't. I have depacort in my pantry but I wont take it and I almost always use o2 but NEVER find relief I just think if I keep trying one day it might work. I have a nonrebeather mask and use the o2 exactly as explained on this site. Imitrex is a lifesaver but i only use it in emergencies because I find it prolongs my cluster and becomes less effective in future headaches and even leaves me with rebounds sometimes. Ice and caffeine are great saviors and have been great at helping to relieve pain but not completely and not preventative. What do I do this year. Today was my first CH and I'm scared...maybe someone can help???

jm - this is my first time on the site and my first post.
I have suffered CH's for about 12 years, and had to tolerate trial & error and guesswork from doctors. None of them know enough about CH's to deal with them properly.
All I would say is keep persevering with the oxygen - I use it as soon as I feel the first twinge and, although you have to put up with pain, it seems to subside quicker than just doing nothing.
I am in the middle of a cluster that started about 2 weeks ago, and I am praying that they will finish soon.

G'day to both of you and welcome.  Quite a few people have been having a bit of luck by slugging down a Red Bull energy drink at the first twinge of an attack. Might be worth a try.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Not for everyone but....the pain will dictate. Perhaps an 02ptimask to replace the non-rebreather. Caffeine will help the 02 kick demon a$$ as well.
wished I could help more.
the bb

pf vibes and hopes going out to you! at least you are here among friends and many with great knowledge. I will second bb's post if you find you need to go that way. i know i do.

Welcome, JM. Your experience with prednisone is pretty much the same as ours: it works until the taper hits a certain point. It's main function is to stabilize things a bit while a longer term preventative gets going. You mentioned verapamil. At what dose? I also had no luck with depakote, but there are others. We have found we need much higher doses than is usually prescribed for lable use, and that can make a big difference. I am taking 640mg/day of  verapamil, and while I am chronic, it does seem to keep the beast under some control. Let us know a bit more about what you've tried and in what doses. Blessings. lance

Welcome to the board JM. One of the more frustrating aspects of CH is how different it manisfests itself in each individual. Verapamil works for one, not for another. Lithium keeps me pain free, is worthless for someone else. Only a couple pieces of advice I can give you:

Keep reading everything on the board. You've tried Verapamil and depakote, some have had success combining lithium and verapamil, we used to call it the "Chronic Cocktail" it's worked for some when either med alone wasn't helping. With the lack of interest in CH amongst the research minded, most of our success is achieved thru trial and error...painful as that is. The more options you have at your disposal, the better chance of finding that magic combo.

Go the medications page and check out the post, "123 pain free days and I think I know why" It's a daily anti inflammatory regimen, all over the counter stuff, healthy for you even if you don't have CH, it's providing a lot of people relief from CH pain. Cheap, safe, worth a shot.

And do consider a visit to clusterbusters.com    I have some close friends on this board, mid level executive management types who you'd never DREAM would consider something outside of mainstream medicine, who have found complete relief from the beast going this route.

Hang in there.

Joe

What Joe said!...ditto.all the advice given is very good and relevant. Study study..the more you know the better you fight. Keep us up on the poop headbanger!
all the best
the bb

JM, welcome to CH.com, sorry you had to find us. This is the place to find more CH info than most Doctors will ever know. CH is a very rare illness so most Doctors have only heard of it, and have little training about any headaches.

It's in our own best interest to know as much as we can about CH. We have to teach our Doctors many times. Take charge of our treatments for CH.

On the Oxygen, does your NON-rebreather mask have a bag on it? Is it sealed so no outside air gets in from the holes on the side? Do you get on the O2 (oxygen) as soon as you feel pain? These are important points. Do you have at least a 15 LPM regulator?

Please read thru the link below, it's from the links on the left and is about O2.  Forgive me if I seem a little forward, I just want to help.

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Don