I totally forgot to put in here.... About 3 months ago I had such a bad episode, my whole side of my face swelled up and I couldn't even open my eyes. I went to the hospital and got an MRI and they diagnosed it as a cluster headache. Gave my IV Imitrex and it helped a little but just took the searing pain away... the lrge amount of pain was still there. They just sent me on my way witrh a script for Fiorocet and let me go even though I was still in pain. So I'm lost at what to do now.

You are in a part of the country where it should not be too hard to find a good headache specialist.

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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See the PDF article, below. It may be a bit of a technical stretch but it gives an overview of what is Cluster, treatments, etc. Get what you can out of it and it will help guide your discussions with the doc.

neuropath wrote on Apr 6^th, 2010 at 11:17am:


I'll agree about the diagnosis part, but if you are diagnosed with CH, you'll likely have to play a big part in figuring out the best treatment. That shouldn't be too big a problem though because you can find a bunch of good info and advice on that right here.

For CH, a headache specialist should prescribe non rebreather hi flow O2, but probably won't (at least not without being asked), and there are other treatments many of us find effective that an MD won't be prescribing you.

This aspect that you've been experiencing more recently certainly sounds like classic CH to me: "It feels like my eye is on fire and someone is pushing super hard on it from the inside. My nose gets clogged on that side of my head and my eye will swell and shut from all the tearing..."

They gave ya the imitrex a bit late at the ER - if an imitrex injection is used at the onset of an attack, it is practically guaranteed to abort it, although a rebound could happen in 3 hours or so.

CH folk find O2 therapy a la the oxygen info link to the left of this page to be relatively affordable, and then there is the cluster buster approach that some find very effective and affordable - if they know the right people. This is a very good article on that subject:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

HANG IN THERE HEATHER, there are lots of people here who have been at their wits end, only to find effective ways to manage, and to have gotten their lives back. You'll join the ranks soon. 

Hi Heather,

I'm Dorothy from Whitburn in North East England.  I'm 62 and have had CH since I was 19.  Sorry you are suffering.  Whatever the diagnosis is, I just wanted to say there is a lot of practical advice to be had on here and on OUCH.  You'll need a diagnosis before you get to use oxygen and meds but the other weapons you can use are the things I would never have known about had it not been for these websites.  Red Bull is one of them - I have read about people making pots of strong coffee to have on hand but Red Bull is about 3 times stronger apparently and has been known to abort some attacks.  I have only just started to buy it but already it nipped a couple of attacks in the bud.  The other thing is you mentioned a cool soft washcloth helps - be a bit more aggressive than that Heather!  Nothing short of ice cold is any good for me, a bag of peas or crushed ice is best.  If you trawl through these sites you will pick up lots of gems of wisdom from the ones who know!  You can learn a hell of a lot from the chronic sufferers as they've tried everything and are more clued up than the doctors.  Good luck.

Love Dorothy

Hay Heather
Just wanted to say all of the above, I have had some success with red bull and always keep a can handy . If you can't stand the taste other energy drinks work just as well as long as they have caffeine and taurin in them.

Hope you find help soon.

Nigel

Where in Jersey are you?

If close to Philly go to Jefferson Headache!
If closer to NY take the schlep to Stamford CT and get your tushie to NECH to see Dr. Sheftell.

good luck