Welcome to the board Suzie. So glad to hear he's continuing with the diagnostic work ups. The fact the 02 works as well as it does, as well as the symptoms you've described, sure sounds like CH to me. But obviously, any sudden onset head pain necesitates a complete neuro work up. AWESOME the GP knew about 02, that's just unvelieveable good fortune. The fact is, there are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis.

I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? As he;s already discovered, oxygen is the closest thing to a miracle drug there is. It should be his first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link when you get a chance as tweaking HOW he uses it will likely speed up his abort times:

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


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these. I drink one WITH my oxygen as it seems to speed up the abort time, AND it pushes back the re-attacks for me.

Great to hear he's already on the "Batch Regimen", the D-3. It's helping way too many people to just be coincidence.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if he is a CH’er, knowledge is his best ally. We’ll help you all we can. Bless your heart for being such an awesome supporter. I'd be dead without my wife!

Joe

It's understandable that your attention has been directed at relief of pain BUT, it appears that you still don't have a firm diagnosis. It's possible to knock out pain but still not be treating the "right" disorder.

This is a special concern with people who start a new Cluster-like experience in middle-age. There are a number of disorders which mimic Cluster but which are not primary headache disorders. Some of these mimic disorders can be rather serious, i.e., need for a more extensive diagnostic work-up to exclude important alternative sources of the sypmtoms.

See:  Link to: cluster-LIKE headache.
Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

If possible, we suggest working with a headache specialist for most docs have rather limited training and experience with complex headache disorders. Finding a good Dx and treatment has, for many, taken years and multiple docs. Noting beats an accurate Dx!
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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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I've checked all the links searching for a local head-ache expert -haven't found any so far. We have Medical Univ of SC locally and I can attest to their greatness in many areas- Pediatric Cardiology for one - have a grandchild born w/ severe heart defect who received the BEST care right here in our sometimes backward state. Guess they don't do headaches! Hopefully, between Rheum Doc and GP,  if a neurologist is needed we'll be referred to a good one!
By the way, I've spent hours reading here and I really like you guys!

Blood work that sent us to Rheum Doc wasn't there! Doc sent for it and when she saw it was surprised - was not alarming and not indicative of Temporal Arteritis -still apparently sudden onset of HA @ his age(61) is cause enough for biopsy of artery (only way to get Dx) which they are scheduling for tomorrow!
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In the meantime, still pursuing Batch's Vit/Supplement regimen in search of a cure! His Vit D level was 30 last week in spite of being on starting regimen for past 2 -3 weeks. Posting this and more on that thread (Painfree 123 days or whatever it is!) I'm looking for a consult w/ Batch and still not sure how this board works exactly - but I have read a LOT!!!! Thanks so much to All!!!
from Sue in South Carolina