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Hello! My name is Kim. I am 35. I've suffored with clusters since 1998. Up until a year ago- I had always thought my headaches were sinus. Even though I've been diagnosed with CH, I still believe SOMEHOW my sinus "theory" is still somewhat indirectly related with CH. No one in my family has ever had these, and nobody quite knows the torment these headaches can be. Mine lasts consistently for three weeks when they come on. Those three weeks are hell on earth. The CH I have always affects the whole left side of my head. Never the right. I spend hundreds of dollars on Imitrex nasal when I have them. I know this may sound strange, but I see a chiropractor monthly, and oddly I now only have them 3-4 times a year. My 10 year old son is beginning to worry me, because he has been having the same problem for about 3 years now, but not to the same degree as I. His lasts for a day, but his occurances are much more frequent than mine ( his are about 2-3 time per month) I feel so helpless, angry, confused, and I just want a DAMN cure!!!! Anytime I just get a simple headache, I go into "freakout" mode. I am so glad I stumbled upon this site. I sure could benefit with making some lifelong friend who truely understand CH, and whn I have them for someone to be there for me, as I will be there for you. Please somebody reach out to me so I won't feel so alone with this. Thank You.

Thank you SO VERY MUCH. I would like to know other forms of medication that can be more effective to control this monster

Kim,

The strggle to find understanding from friends and family is something we all share.  Most people just can't understand, and I believe many can't cope with the knowledge that something as hellish as CH is possible.  I'm chromic, as many people here are, and survive 8-20 hits a day, but I can tell you that just as this disease is "in your head" so is the best cure.  Stay positive, and read everything you can about it.

There is a Topic in the forum just for parents of children with CH.

As for medications, I would recommend you do the following:
1) Print out the "therapy" doc that George posted.  Study it, and be prepared to take charge of your treatment with doctors.  Many of them balk at the therapies that work best with CH, so you may need to take a copy of that and be forceful about the next treatment you want to try.
2) Get oxygen.  Read the "oxygen" lnk on the left, because it is by far the best abortive with no real risk of side effects.  If your doc or neuro won't give it to you, fire them and get another.
3) Prednisone is usually used when a cycle starts, for about 10 days, while other preventives are taking effect.  Since your cycles are relatively short, you'll find this a godsend.  In most cases it will kill the headaches, but you can't take it for too long.
4) you need a preventive.  Topmax is the most common and most successful.  Lithium Carbonate seems to be next.
5) Caffeine and Taurine are great vasoconstrictors, so chugging a Red Bull or other energy drink at the first sign of shadows can often kill it.
6) for really bad attacks, you need an abortive.  O2 is best, but triptans like zomig or imitrex are often used.  You need a nasal spray or injection, pills are too slow.  Don't use more than a few a week, as they have been shown to increase the frequency of hits andprolong the cycle.

If your dogs don't get on board with these treatments, find a neuro who is a headache specialist.  Most dogs and neuros don't know how to treat CH properly.

I hope you are working with a talented headache doc. If not, please find one:

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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The first step in obtaining good control is a correct diagnosis of the type of headache you have. Your description is not clear enough to establish CH as your problem. Go the the OUCH site (left buttons) and find the article which compares the major headache types.