hi.
my name is jim and typing is not something i do alot so please exuse the mistakes i make.i've had clusters for 20 years and have suffered much.I am 46 .this round has put me in a dark room for over a month now and i am so tired of being in that room.i've had to go with out any kind of meds this time and triing to hide the pain from the kids has been impossible.They have heard the screaming and wall banging and it's scared them.The burden i have put on the family ways heavy on my heart.Begging god to make theses things go away is not working.
i have them all day long with 2hr breaks if i get lucky.just looking at the puter screen right now tickles the little monster in my head.Been triing to read some of the ways you folks are dealing with this.i have been giving most of the meds ya'll talk about  here,never the oxygen though.during my last bout it was the depicote and relpax.the mushrooms i havent heard of but am tempted to go out and picks some poisines or not and fix the problem one way or the other.
well just wanted to intro myself and thnks for letting me in,
              jim

If you are not working with a headache specialist, finding one would be an essential step. NOT any neurologist: too many of them lack experience and traning in headache!
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Jim,

Welcome aboard, we are glad you found us.  Read read and read the board.  You are not at all alone.  Many of us have felt like a burden on our families, like we scare our friends/family, and we are alone.  There are people here who can help you see that none of the above are true.

Make sure you print out the O2 information.

Listen to Bob Johnson, he is like the encyclopedia CHica.

For me dark rooms make it worse but you need to find a good abortive, a good preventative, and some things you can do if the others fail.  For example my prevent is lithium, abort is O2/energy drinks with taurine, and last resort is Zyprexa.  Also find comfort things.  For me it is frozen peas placed correctly, a message done in a way once described here (my wife does it for me), and hot/cold showers.  These dont get rid of headaches, but they make me feel as good as I can.

Keep posting, asking and reading.

May your days be pain free and plentiful!

Bob's advice is spot on, treat it like gospel. You suffer from a rare condition. That makes it your job to educate yourself, by reading EVERYTHING on this board, then work WITH your doc to form a treatment plan.

I'll share my treatment plan just as an example. What workes for one won't necassarily work for another, but it gives you an idea of the 2 pronged approach you need to take.

1: A good prevenatative medication, something you take daily, while on cycle, to reduce the number and intensity of your hits. I use lithium at 1200 mg a day. Blocks 70-80% of my attacks. Other popular prevents are verapamil, at doses upwards of 960mg a day, and topomax. Prednisone is an effective prevent but is harsh on your body. It is typically used as a short term prevent while you wait for your lithium, verapamil etc. to kick in.

2: A good abortive. You feel a headache starting, now what? Your first line abortive should be oxygen. I can abort an attack in 6-8 minutes, that's completely pain free, using 02. I still have imitrex injectables, which work FAST, but I hate how they make my body feel after so I try and stick with 02.  There is also imitrex nasal sprays that work for many.

That's my regimen in a nut shell. You need a good prevent and a good abortive. There are many meds that work for others, to read about on the med board and discuss with your doc. It takes a little patience at first but finding the right combo can give you your life back.

You're not alone any more, welcome home.

Joe