as i scroll thru the posts i can see so many others are just as lost with this condition as i am , some even more.i started having CA around the age of 21 and im 26 now. my first cycle scared me to the point i thought i was dying. luckily my personal doc works at the hospital and he was there the next morning after being admitted because the oxycodone/verapamil combo wasnt helping along with every other treatment he tried. they decided to keep me for 6 days and put me on iv dilaudid,6mg per 3 hrs for all 6 days in hopes of breaking the cycle.i left 6 days later doing not much better so my doctor decided to try methadone along with dilaudid. i eventually got to 60mgs of methadone and 6mgs of dilaudid as needed. the only difference made was by the methadone.i didnt have to take it but twice a day and it helped,for a while. now ive been thru propranylol,tegretol,depakote,verapamil,topomax,imitrex,
ergotamine,the list goes on. the only thing that has aborted a cluster temporarily is iv dilaudid but that wouldnt break the cycle,next best thing is methadone. when im in pain and rocking back and forth in tears i ussually get the "what the hell is your problem go lay down" kinda remark. at first the clusters were spaced out, now its chronic. i get somtimes 4 attacks a day, at least 15-25 days a month. im completely lost in this. i hate the methadone but it helps some. i still have a hard time telling myself to keep going. having people understand as they do on this website helps as well. i just wanted to share a bit of my story and say thanks to all of the people that contribute to this website,your work doesnt go unnoticed.

With such a complex, difficult experience I hope that you are seeing a headache specialist. So many docs, even neurologists, lack training and experience in treating complex headache syndromes.
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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. 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.

6. 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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Suggest you print out the following and give to your doc. As it says, many serious disorders are Cluster-mimics--appearing to be Cluster but something quite different. Here is where skilled diagnostic work is reuired.


Link to: cluster-LIKE headache.


Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

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Understand that with such complexity that your picture presents we are totally beyond our knowledge/skills to offer you anything by way of treatment. Personally, with such a history I'd regard it as unethical to offer any treatment ideas which would encourage you to not put your full attention into working with your docs.

yes i definately understand that opiates are a no-no when it comes to CH.my doc has even stated this but this treatment is the smallest bit of relief i can obtain at this point since i have no insurance and am currently unemployed bc of the clusters.ive tried oxygen, over and over and over and ive never had results. this was using the mask at a pretty high rate of flow. there was a point where i forced myself off of methadone. i figured id give it a fresh start and after 6 months of tapering down and 1 month of being seriously ill i was off of opiates completely. i guess the impatient part of me took over and i went back to the methadone bc the other treatments were not helping. the scariest part of this is my blood pressure in the middle of an attack, up to 190/130. thanks for all of the comments and links especially im going to try to find a specialist and just hope i can afford to get started.i owe my doctor over 3 grand right now and cant make big payments so its nice to have his support. its even better for him to admit that he doesnt have the experience to treat me as well as specialists could. thanks again for the comments it means alot.

Brew's right. We're not trying to minimize your experience, but we lack confidence in a doc who prescribes long term methods that are demonstrably less effective. I would say the same thing about the "traditional" meds you list, like verapamil and imitrex. For example, was that an imitrex tab or injection? Pills take too long to work for us. How high was the verapamil? We are so off label when it comes to dose levels. Normally verapamil is prescribed up to 240mg. I take 640mg/day. Some over 900mg/day. See what I mean? There may yet be hope in the classic treatments for you. Tell us more. God bless. lance

One more vote for oxygen. Most of us will not believe it doesn't work for you till we have actually administered it correctly ourselves and seen it not work. That is how often people get it wrong... and how passionate we are about how well it works when done correctly. Oxygen not only has the highest success rate of all aborts out there, but also has no side effects, works almost instantly, and referred to by most of us as a major game changer... as for me, it saved my life. Read up and try again, sounds like you really need this particular type of control right now.