Hello everyone,

I am 38 years old and have experienced on and off headaches all my life. Usually around one a month with a migraine around once every 3 months. That was until about 1.5 years ago. In June of 2015 I woke one morning with a headache, seemed normal enough except my normal aspirin I had been trained to use my whole life was ineffective. Because of my migraines in the past I had access to immitrex which would provide temporary relief until it wore off and the headache would return. I started going to doctor's after about 2 weeks. Sine then I have seen dozens of doctors, everything from neurologists to dentists trying to find what is causing these headaches. I have had 2 sinus surgeries and been down to the Jefferson headache center in Philly. Of course I also have had several MRI and CT scans and I do not have a tumor or anything like that at this point. Nobody has been able to even give me any type of answer as to what is causing this. Most doctors don't even seem to want to treat me. Once they discover it is not the normal things they are used to treating on a daily basis they all but push me out the door and refer me to other doctors who do the same. Each doctor has me try pills for preventatives and nothing has worked even a little. Pain meds such as Immitrex or other Triptans along with percoset and tramadol are the only way I have been able to function. I know you guys are reading this right now and thinking "That sucks but this is a cluster headache board and that doesn't sound like a cluster headache". So let me explain. During this year and a half my symptoms have changed repeatedly. For the most part I wake with a minor dull pain in my head or sinus area and it just builds all day. I am doing allergy injections just in case. Several different times throughout this ordeal I had Cluster headaches and didn't know what they were. I just finished an 8 day cycle. I seem to have a cycle of cluster headaches every 3 moths or less along with chronic daily headaches and the weekly migraine. Imagine when your cluster headache cycle finally ends and instead of relief you get chronic daily headaches and migraines taking over. My life is falling a part. I am in pain every single day and have nothing positive on the horizon. My next treatment is Botox in January but I don't have high hopes.

The main reason I am posting here is 2 fold, one is that I am very depressed and feel alone dealing with this. I have nobody that understands what I am dealing with. Second is that I feel the biggest problem for me is finding a doctor who cares enough to want to help me. Like I said earlier every doctor I have encountered has very little interest in taking some extra time and helping me figure this out. They give me the common drugs and send me on my way with no real solution. I actively have to fight to keep my pain med prescriptions active. It's almost as if they don't believe me, or think I am making it up. I don't understand it. I wanted to ask you all if you know any doctors you could recommend that is more than a paycheck collector, someone who actually cares about helping people and not just making money. I need someone to take an interest. I need help. I live in southern Pennsylvania, York to be exact I have access to Philadelphia, Baltimore and Hershey in my immediate area. If any of you are in this area and have found a doctor that has helped you in any way please share with me their info and your story with them. Thank you for taking the time to read this plea and thank you for being here for us who suffer with this horrible affliction. I may become a regular here so I look forward to interacting with you all. Thanks.

Josh

With such a long history of failure, both in getting a Dx and finding effective treatment, it would be unwise to start using any treatment suggestions you receive here--at this stage.

First, a solid diagnosis is essetial. As you have experienced, even neurologists area limied. (They have quite meage training re. headache, contrary to what we would expect.)

First, tell us wheree you ive--important.

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

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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See yourself in the last pra? Why you must find the right doc.  Without the correct diagnosis you can't find the correct treatment.

I agree with Don. Narcotic pain killers can result in not just rebound headaches but they are also highly addictive and result in other issues too.

For a CH, even the strongest narcotic pain killer won't help.