My name is mark ,ive just started a cycle about a month ago, was lucky I skiped last year ,but was on meds for 8 months .ive had these for 25 yeasr,and thought I was never goin to live a normal life again about 5 years ago I tried prednisone and finally found some relief ,if you havnt tried this yet I would recomend it ,its the only thing ive found to work,there is some side effects but for me I didnt care ,it was that or considering suiside.i read some of your post and tears fall from my face cause I know the pain you are going through. I hope I am doing tbis right,if not please help me . I wish everyone the best,im afraid to lay down and sleep cause I know it will come,so im just venting ,ty for listoning .ty mark


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Hello Mark,

I'm glad you found us. Please, read as much as you can here, especially the medications and treatments board. There is a vast wealth of info. and help at your fingertips.

Hang in there!
Melissa

Hi there, Mark, and welcome. Yes, we know about prednisone. We tend to view it as an intervening drug, helping us to get through the period of time it takes for a longer lasting preventative to take hold. Stuff like verapamil and topomax. For me, and I think for others as well, the prednisone only works well at very high levels and long term use at those levels is problematic. You might want to look into some of the other treatments we recommend. God bless. lance

If you plan  to stick around:

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location.
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If you have the option, we suggest lining up a headache specialist. Most docs simply lack the experience/traiining to work with complex headache disorders.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. 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.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Print the PDF file, below. Introduces you to the range of meds used for Cluster and is a tool to discuss options with any doc you see.

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I'm with Bob, your current treatment plan does not reflect a doctor up to speed with treating CH. There are numerous effective abortive and preventive treatments out there to help you lead a normal life with minimal interruption from the beast. We need to get you referred to a headache specialist neurologist that can get you dialed in. What part of the world do you hail from maybe someone can refer you to a decent neuro near you.

Joe

Hi and welcome

You are not the first person to experience tears on first reading these forums, I and many others have done the same. It's amazing what it is like to find somewhere where people just understand what you're going through and try to make a difference.

As other have said, you need to work with a headache specialist to get the right treatment for CH as there is a lot more than just prednisione to treat CH.

Tell us more about you and your CHs. Plus start reading all you can and you'll learn so much. Ask anything you can think of and someone will likely know the answers.