“Be afraid. Be Very afraid.” That phrase pops into my head at the very first sign of a cluster.  I was diagnosed officially last week.  The headaches started as an intense pain behind my right eye that lasted for 15-20 minutes.  Last nite I had the worst ever lasting about 4 hours with no break then about ½ hour break and it started up again.  I didn’t think it was possible for the pain to go on that long.  The doctor gave me Cafergot pills, but I am either taking them too late or they don’t work.  He also gave me some pain meds.  I didn’t think it was possible to have a pain that nothing gets rid of.   The best description now of the pain is one I read where it feels like long talons of a bird, dipped in poison grabbing hold of the right side of my head.  I don’t know how people who have had this for years can stand it.  Last night as I was pacing the floor, I kept saying to myself – “Just wait it out, it will go away, just wait it out”, because in the past it was a 15-20 minute thing.  Do you guys find yourselves chanting?   I also promised God about everything you can imagine and it appears if I get through this, I will be one great human being. 
I am sorry you guys have this too.  I had never heard of clusters until I started getting them.  I guess partly because they occur at nite and other than looking very tired you would never guess from looking at me, what I actually went through last nite and no one would understand anyway.  That is probably how most people are.   I hope we all get better and don’t have to go through this anymore. 

Victim is as victim does.

Start fighting back. Or be a victim.

Hi Tammy,

I have been where you are.  I think everyone here has. You're not alone.   

Now that you have been  Dx'ed you need to push your Dr for a script for 02.  Until you get it, try drinking an energy drink ,like Red Bull, at the first sign of an attack. Drink it as fast as you can. It helps lessen the severity and duration of my hits.

Read all you can here.  There is much to learn and many who will move mountains to help you.

Jeannie

My first reaction was that your doc is not very sophisticated in the ways of Cluster! Suggest you locate a headache specialist and not any neurologist.
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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.
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These are the types of meds which you should be hearing about from a headache doc.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Here is a introduction to cluster published by family practice docs:


Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ;
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Read and learn much: get back with specifici questions as they arise.

Best wishes,

Agree that pain meds just don't work- they just make me dizzy and nauseous which is not very helpful. O2 works the best. also an ice pack on the side of the pain. Not much else seems to work for me so good luck.