Hi,

My husband has been suffering with CH for most of his life. His been on almost every kind of medication with mixed results. I have read some studies recently about success with an SPG block using the Sphenocath device. Has anyone had an SPG block using this new method? I know that the old methods were not very effective. My husband's neurologist (whom we just 'fired' for being totally useless) scoffed when we asked him about it because he was offended that my husband actually wanted to be proactive in finding a solution for his intense, daily pain. The doc just wanted to continue pushing botox which has been ineffective for my husband. Today my husband saw his primary care doc, and he was hesitant about an SPG block because he wasn't familiar with it. If you can share your experiences with an SPG block, good or bad, we would appreciate it! Thanks!

vintagesmith,

Welcome to CH.com.  You've come to the right place.  We know what your husband and you are going through and the good news is it doesn't need to be that way.

Sphenopalatine ganglion (SPG) blocks are typically effective for short periods of time up to a week then fade in their preventative effect.  Subsequent SPG blocks tend to be less effective.  Given the performance of the topical anesthetic and steroids typically used in an SPG block, I don't think the Sphenocath method of application is going to make much difference.

Does your husband have oxygen therapy available? 

Check your PM inbox by clicking on the words "you have 1 new message" in the upper left corner of this page.  I've left you a message and additional information.

Take care and hang in there

V/R, Batch

Your situation is a compelling argument for locating a headache specialist--NOT a general neurologist!
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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.

Hello, Batch,

My husband has not yet tried the oxygen therapy. As a matter of fact, we didn't know it was an option until we read posts here!  :) We will look into getting that option for him.

Hi, Bob,

I completely agree with you about the importance of seeing a headache specialist. My husband first saw a headache specialist in Nashville, TN who helped but wanted to load him up with drugs. Not cool. When we moved to NC in 2002 we finally found one (we used one of the web sites you have listed) that was 3 hours away. He was awesome and is actually the one that diagnosed him specifically with CH. He retired about several years ago, though.  :-[   I had researched the sites you listed again a week ago when I found this site. So far, we've only found one headache specialist that is within 2 hours of us and of course, she doesn't take our insurance. So, now we are debating whether or not to bite the bullet and pay out of network for this doctor or drive 4 hrs. to the next-closest headache specialist.

Thank you for sharing the links!

Blessings to you both!
Crystal

Update-

Just got the call from my husband's PCP about the 25(OH)D lab results. Not surprisingly, his came back at 17.6!!!  We are starting him on the vitamin D3 regimen tonight!!! I'll post an update in a week.

Blessings,
Crystal

I have had two SphenoCath blocks, before the ch diagnosis, but for Trigeminal Neuralgia and migraines. Relief for the TN was limited, but I went 6 months without ANY KIND of headache! They believe I've most likely had CH for years, just no diagnosis. The procedure is quick, comfortable, and easy. Just make sure it's done under fluoroscopic guidance, that way they can confirm the placement of the device and trajectory of the medication.

There are great videos of the procedure on YouTube