Hello everyone , I am a long time sufferer ( I am 50 and have been getting clusters since I was a young kid . My normal cycle was every two years in the spring . In the early days go on a low dose.( 30mg)short prednisone taper and it would go away . Then I used Sansert ( which worked great ) but then that stopped being available. Then I went to verapamil short release (480mg) and then worked great up until 2 years ago. I have also used 02
I have battling for the last 2 years and unfortunately this coincided with my insurance company no longer be offered and I had to change and leave my long term neurologist. I have been in hell every since!! I am in a plan that has the worst doctors and policies (healthnet ) I was seen in ER 8/24 and prescribed O2, predinsone & imitrex injection. I still have yet to get the 02 & imitrex! Only primary can authorize and imitrex is considered a " preauthrozed med" ! I'm battling to get it and O2!
The neuro I have is a complete idiot who knows very little about clusters and told me he needed to refer my to a specialist, three weeks later I'm still waiting on the referral! Here is my dilemma right now. I have been on verapamil 960mg since July that was working I added prednisone but had to go up to 80 mg to work I have now tapered down to 10 mg and tried to taper down the verapamil to 600mg (I am diabetic and the prednisone was killing my blood sugars ) between the prednisone and high verapamil I was struggling to make it through the day! Also neuro quack added indomethacin 50 mg
Well trying to taper down and I got hit yesterday during the day red bull abort , and then last night again red bull aborted.
I know I can't get in to see this neuro and probably not the primary , should I up the verapamil back to 960 and start a up the prednisone and start a new taper? I want to try adding lithium if I can find a dr. to help me. Any suggestions are welcomed. Also I tried the D3 regimen and it didn't seem to help.

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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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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It's frustrating but no unusual for old medicine programs to stop working, forcing us to start over again to find a treatment program which works.

Good time to seek a specialist!

Print the PDF file, below, and use it as a discussion tool with any doc you see.
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The med which became by savior is worth a try. Any doc can give you a sample and with 2-4 uses you'll know whether it works for you.
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Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Hi and welcome

A few comments based on what you said in your post.

Prednisione is only meant to be used short term for 7-10 (or so) days and not medium to long term as it can cause significant issues, especially to your joints. We normally use it as a short term preventive to allow time for a longer duration use preventive, like verapamil, to build up to an effective dose. It is not normally used as a top up on top of another preventive like it is being used for you.

At 960mg a day of verapamil you're on a pretty high dose, which is close to the top end dose that people can tolerate. Have you been having ECGs done every few months? Verapamil can impact the PR interval on an ECG, so this needs to be monitored. Are you taking all the verapamil at once? Or is it spread out over the day, e.g. morning / night? This way the dose can be targeted so that it is at it's maximum levels when you're more likely to get a CH.

I would not change your verapamil dose without working with a doctor as what is good for you now will depend on your medical history, which needs a doctor to evaluate.

Indomethacin does not normally work with CH, so I'm unsure why the neuro put you on it, unless he thinks you have / also have Hemicrania Continua. This medication can be brutal on your stomach, so you normally also take some medication to protect the stomach lining when using it.

For oxygen, read up about how we use it very effectively - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Make sure you get a high flow rate, 15lpm or higher, and a non-rebreather mask.

With the lack of referral, I'd chase this up as you need to be working with a headache specialist to be able to get the right treatment that will work for you. When you get one, don't just wait for the appointment, ring up and ask about cancellations so you can get seen as soon as possible.

The D3 options works quite well for a lot of people (I've gone over 3.5 years CH pain free with it). I'd give Batch a PM as he is the guru on getting this working with people.

Where are you in the world? I'm guessing the US, but if you post your location (state / country) then someone might be able to suggest a good doctor or two.