Hello,

My name is Joe and I'm a cluserhead. I am 34 and was officially diagnosed with ch last week. I've been suffering with headaches since I was 15 (listed as a migraine sufferer).

My PCP  recently re-evaluated my symptoms and sent me to a new neurologist where my headaches were reclassified.

As a "migraine" patient, I've been through several preventatives such as Topamax, Effexor, Nortyptoline and others I don't remember. As  for abortives I've taken Imatrix, Relpax, and Maxalt. I'm sure there are more in both categories but can't think of them.

I've got a CPAP I wear nightly because a doctor had prescribed it as a preventative for the headaches (no sleep apnea, possibly a misguided shot at increasing airflow instead of O2)?

To further complicate my case, I've had my upper jaw reattached after a nasty break and had brain surgery to treat an unruptured aneurysm. Luckily, I live in Phoenix and had access to Barrow Neuro for the procedure.

I'm not sure what else to add at this point but plan to become an active member on CH.com and the forums.

Wishing the best to all,

Joe

Joe,

Welcome to CH.com.

One of the worst things about having CH is the fact that few Doctors know how to treat it. We must know.

Your CPAP won't help CH, only Sleep Apnea. Oxygen is good to abort CH attacks but is not good for preventing them, so it won't work to leave it on either.

Learn all you can from here, it is in your own best interest. I took some of my life back by learning here.

Don

The recurring problem: unskilled docs when it comes to treating orphan disorders. Make the investment:

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. 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.

5. 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.

6. 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.

Bob,
Thanks for the info on looking for specialists. I've only met my new neuro once (the PCP actually made the correct diagnosis after years w/other neuros). Coincidentally enough, my PCP said he knew of a doc that specialized in CH and it turns out the one he recomended is certified and listed on the websites you linked.

Don,
I've got to look into O2 therapy more. I've noticed quite a few seem to use it. The neuro that originally set me up with the CPAP said that was to increase overall airflow which was supposedly shown to work as a preventative w/migraines. I used to be a Respiratory Therapist but never heard of that use before. I'm at the point that any possible treatment is worth a try.

I can say I stuck w/the CPAP because I would go months without visits from the beast. I thought the two were related but since visiting this site I have learned the lapses are strictly episodic.

Overall, I'm satisfied w/knowing a correct diagnosis and can start on a true treatment. I have a feeling I will be spending quite a bit of time perusing the info and boards on CH.com now that I know it exists and can seek refuge in numbers...

Cup O Joe wrote on Oct 22^nd, 2012 at 1:32pm:

Overall, I'm satisfied w/knowing a correct diagnosis and can start on a true treatment. I have a feeling I will be spending quite a bit of time perusing the info and boards on CH.com now that I know it exists and can seek refuge in numbers...

This is a pretty powerful pain that makes a person wonder just what the heck was that and what's going on, this certainly is not normal and feels serious.  Going undiagnosed is worrying, getting this identified is a first step for correctly treating it, very true what you said.  I'd imagine in some ways it's a relief in that you can begin to take steps in the right direction now to manage it and not let it have get the opportunity interfere with life, or rankle as little as possible.

As Don has referred to, this site is here for you, it helps, so ask any questions.  The oxygen he mentions is an ace for aborting hits, a good first step. 

I hope what you are using now is helping.  Look around and you'll find what works for others as well as many tips that are off-the-shelf that you can do for yourself.  Our buddy board is clusterbusters, an alternative, which has an excellent record with clusters.  Batch dude has a D3 vitamin preventive regimen that gets results.  There are many other tips like Red Bull and other power drinks that can provide important help for unexpected situations.

Aborting and preventing are the main two applications.  Preventing is not foolproof, so effective abortives are necessary to have.  Check around and just ask.  :)

Glad to have you aboard and welcome.