My name is Tim and I have been having CH for 3 or 4 years now. Up until recently we just thought they were migranes, but after doing some research on the symptoms, I kept coming back to clusters. I have not been "diagnosed" with them yet, but everything fits perfectly.

I started out on Imitrex pills & Topamax, but when they started coming back every 8 or 9 hours, the doctor thought it was rebounds and dropped the Imitrex and replaced with some others, eventually landing on Maxalt. 

It seemed to work for a cluster, but when the next bout hit, I was needing 6 or 7 a day, and the doc said I was overdosing on the Maxalt and was causing ha's from the o.d.  She then switched me to vicodin and told me to only take a Maxalt if the Vicodin didn't work.

That cluster ended, and here I am again..... 10:30 on last thurs for the first one. 500mg Vicodin helped a little.. 10:30 Friday.. another more Vicodin. Didn't help much.  Before bed on Saturday, I took one trying to stave off an attack, but about 10:45 the beast came back. I took a second Vicodin, and it didn't help. Same thing on Sunday night...

I compared to the Kip scale I found here, and the first couple of days, it was about k7 or k8 and the next few days it grew to k9/10.

Monday I had enough, I was fearing going to sleep and the pain was exhausting.  I called our gp and got in within a couple of hours. After talking to her, she decided the last trick she had was to try Prednisone. She told me that if it didn't work n the first night, to call.  Much to my relief it worked, and I thought I was in the clear... Then I found this site and started reading thru everything here, and I am getting worried again.

I started the pred. on Monday with a tapering dose of 60/3 40/3 20/3 and 10/4. Monday thru Thanksgiving I was pf, but last night I had a k7/8 again, and I am afraid of what tonite will bring..... I read in a post how some had relapses after getting to a lower dose, and I am afraid it is starting here again.

I am worried about the long term effects of Prednisone and other treatments. Can I stay on the pred. for 3/4 weeks without side effects? Do I do this for every cluster?  I didn't start keeping track of my ha's until this round, and I can't remember when the last one was. (Isn't it bad that something this painful can be forgotten!)

I hate taking meds, and to take preventatives year round seems useless. Another worry I have is the whole trial and error phase.. To endure thru the pain to make it to the next try at a treatment, while necessary, seems masochistic.

Do you take preventatives year round, or just during a cluster?  If during a cluster, how long do you take them? 3, 4 weeks and then see if the bout is over? If not, just start again and endure?

How about the first night or two of a cluster? How do you abort until the preventatives kick in?

I'm starting to feel the shadows now, so I'm sure another interesting night is in store, so I will cut this short.  I appreciate the help, as well as all of the information here.  With all of the experience here, it will be hard for a dr to beat the advice and knowledge that you all have!

Tim

Prednisone dose packs have given me three day breaks when at the highest dosage. As you mentioned above  once i begin to taper it seems the beast knows and makes up for lost time and throws your pattern off a bit.  I am thankful for one less CH let alone 3 day breaks. Now when in cycle i ask the doc to call it in when needing that break.  I understand it is meant as a transitional until the long term preventatives build up and have had rounds of pred that only reduced kip levels as well. Like i said before I am thankful for one less headache and one good night of sleep in mid cycle can make a world of difference.  Plus i eat like a horse while on it which is usually needed as well after weeks of battling and the workouts with the beast. Anyone else use prednisone this way? Also how many rounds have ya gone? I average 3 dose per cycle from my doc in about a 8 week cycle. ( I Save #3 for when i feel him leaving to help kick his a$$ out the door if possible) Is my doc giving me too much in too short of a time? I keep reading about harsh side effects but none that i have noticed anything in particlar i should be on the lookout for?
Also agree with Mike-NZ on the heads up with your doc not understanding since of the narcotic perscription is a big red flag of his knowledge of CH and push for a o2 script for now to get ya through until your able to line up a new one.
Thanks and wishing PFDN to all
Brian

Thanks everyone for the replys & info! Been doing a lot of reading here lately, trying to get the scoop & be prepared for the next dr. visit.  The headaches started again this weekend, after tapering the prednisone.

Had an appointment this afternoon with the gp, and she finally agreed it is CH.... She tried telling me that they are treated the same way as migranes, but after reading here, I know better.  They may be treated with some of the same drugs, but it's not that easy.  After telling me that it was CH, and telling me she was going to refer me to the local headache specialist neurologist, she ordered the blood tests that they will want.  The nurse comes in and mentions something about me being hesitant to go to sleep tonite and actually asked me if I had tried Excedrine Migrane.... Are you effing kidding me lady? Two Vicodin couldn't touch the pain and you think an OTC aspirin will?

So, anyway we will get the lab results back tomorrow and hopefully get an appointment with the neuro this week....  I hope a CH sufferer would get a bump up on the waiting list, but we will see.  In the meanwhile, I am dreading going to sleep tonite, as the HA was a k9 last night. I have some red bull and Maxalt for tonite's fireworks....