I am new here, but not new to pain. I have had chronic migraines for the last 14 years and then this year after I turned 36 everything changed. The pain came differently in my eye and didn't go away with any treatment. That lasted 5 weeks. Now I am on cycle 2 and it has been 3 months. It's been on my right side the entire time, stabbing my eye out and horrid pain. My neuro diagnosed them as cluster, but I'm still not sure. They are in the eye and come at the same time every day and some of the time my right eye waters, but other than that, I wouldn't say I have the other classic symptoms. I feel helpless and alone. It's been three months of pain every single day, multiple times a day, with no end in sight. I have three little kids and don't live anywhere close to family. I just don't think I can take the pain anymore and am not sure which way to turn. I have an appt with a specialist at Cleveland clinic in Nov, but I just don't know if I can make it that long. My current neuro is dragging his feet on getting me oxygen and I just don't get it.

Hey Nannette,

By now you may have read the post by ajh92 titled "Just got diagnosed, very down" on the Getting to Know You board.  If you haven't read it, please do.  She was diagnosed with cluster headache but it was a misdiagnosis, she actually had a dangerous fungal infection that was missed with a CT Scan but caught with an MRI. Have you had an MRI as part of your cluster headache diagnosis?  How many patients has your neurologist diagnosed with cluster headache?  If you don't know, ask when you next see him.

Regarding obtaining an oxygen therapy Rx.  I've spent the last 10 years studying different methods of oxygen therapy at flow rates that support hyperventilation (25-40 liters/minute).  I've also conducted a study with seven CH'ers using oxygen regulators capable of delivering 100% oxygen at flow rates of 0-60 liters/minute and with oxygen demand valves with flow rates up to 120 liters/minute (average flow rate of 40 liters/minute) to abort their CH...

For starters, any CH'er having difficulty obtaining an Rx for oxygen therapy from their neurologist needs to print out the following link and this post then take it to their neurologist.

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This is the Guideline recommended treatments for Cluster Headache and other Trigemino-autonomic Cephalgias developed by a task force from the European Federation of Neurological Societies (EFNS). 

This task force was comprised of some of the brightest minds in the field of neurology and recognized internationally as experts in the treatment of cluster headache and other trigemino-autonomic cephalgias.  This task force included some very familiar names if you've read any cluster headache studies...  It includes Evers S, Afra J, Frese A, Goadsby PJ, Linde M, May A, and Sandor PS.

I had the opportunity to meet with Dr. Arne May and spent two days with him at his facilities at the University of Hamburg.  I've also met with Dr. Peter Sandor at the 2009 International Headache Society Annual meeting in Philadelphia, PA, and I've met with Dr. Peter Goadsby at two OUCH conferences where he was our guest speaker.

Closer to home, I've spent the last 8 years working with Dr. Todd Rozen on more effective methods of oxygen therapy as an abortive for CH.  This work started initially at the Michigan Headache & Neurological Institute (MHNI), AnnArbor, MI, and more recently at the Geisinger Health System’s Neuroscience Institute, Headache Center in Wilkes Bare, PA.

All of of these experts prescribe oxygen therapy as the first abortive of choice and this is reflected in the EFNS recommended treatments in the link above and illustrated in the following chart from that link.

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The following chart comes from the 2008 study I conducted using oxygen therapy at flow rates that support hyperventilation illustrates the benefits of hyperventilation during oxygen therapy as a rapid and reliable CH abortive.

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During this study the seven participants, six chronic and one episodic, six men, one woman, collected data on every abort with high flow oxygen therapy for 8 weeks each.  This resulted in abort time and pain level data on 366 aborts. 

The overall efficacy was 99% in affecting a complete abort to a pain free state within 20 minutes, and an average abort time of 7 minutes across pain levels 3 through 9.

As you can see, oxygen therapy at flow rates that support hyperventilation results in abort times four times faster than at a flow rate of 15 liters/minute.

This study also revealed for the first time that the higher the cluster headache pain at the start of oxygen therapy, the longer it took to abort that cluster headache.   This should be reason enough to start oxygen therapy at the first sign of an approaching CH...  Waiting is only going to prolong the time to abort.

You can improve the above average abort time or eliminate the need for oxygen therapy completely by starting the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus the vitamin D3 cofactors and Omega-3 fish oil.  See the following link for details:

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Hope this helps.

Take care,

V/R, Batch

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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You cannot WISELY start treatment for Cluster until you have an accurate diagnosis.

First, suggest you print the following and give to your neuro.
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Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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Many neuros have limited education/trainin in treating complex headache disorders. While i's awkward to consider a change in docs now, if your present doc flounders around with findin an effecive treatment it wold be worth considering finding 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. 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.

4. 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.

5. 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.
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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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The last paragraph is why you need a well trained doc when dealing with the potential of having Cluster.

Thanks Batch for all of the amazing info!!!! I actually found your D3 regime online and have been doing it for a week....crossing my fingers. I will print all of your info and get to my neuro. I read the post you suggested---scary stuff---my gut feels like they are missing something, but I've had all the MRI ' s, a spinal, blood work, etc. I have Hashimotos,  Endometriosis, and POTS. I started my migraine treatment at Cleveland Clinic 14 years ago and now will go back to a new headache specialist that works only with Cluster/chronic migraine/intractable migraine patients. I guess I just née to be patient until Nov. Thank you for all the wonderful info.

Thanks Bob! I will go and edit my profile. I live in the US, Indianapolis, IN.

Hi and welcome

Sometimes with CH when it first starts it can take a while to settle down into the classical CH symptoms. This can take weeks, months or sometimes longer. This is another reason why it isn't easy to get a diagnosis, especially from GPs or neurologists, who normally don't have the skills or experience to diagnose and treat complex headache types.

If you're one of the "lucky" ones to get both migraines and CH (there are a few of us here), then it can make the diagnosis and treatment a bit more complicated. Many of the medications used are the same, but sometimes what is perfect for migraine isn't for CH, so it can be a case of getting something that works for both. Again another reason to work with a headache specialist.

You're no longer helpless and alone. We all either have CH or support someone with it. We've all been through the process of having horrible headaches, getting a diagnosis and then getting the right treatment. So we know just what you're going through. With people all over the world here, there is normally someone around anytime of the day or night.

Whilst you are waiting for the November appointment, you can try calling to see if they have a cancellation. Whilst it might not be easy to get there at short notice, doing so will get you on the right path to a diagnosis and treatment sooner.

Keep reading and ask all the questions you can think of.

Thanks for your help Mike! I may be one of those lucky few as up until now my migraines have all been hormonal and located in a different area of my head. I took your advice and got on the cancellation list a CCF! Thanks again.