I just want to introduce myself.  My name is Matt and I have suffered from episodic CH's for over 20 years now.  I wasn't properly diagnosed until the third cluster or so.  And it wasn't until the last couple clusters that I was finally able to find some relief with the Imitrex injections.  They work great for me and can kill a CH in 5-10 min..  I am a little over three weeks into my current cluster.  This one sprang out of nowhere after over 4 years, which was the longest remission period I have experienced with them.

Here is my current dilemma.  I have been taking a lot of injections lately.  I know they say no more than two a day or twice a week.  I have been well over that.  However, I can't tell if what I'm experiencing are rebound headaches or if I'm just reaching the peak of my cluster.  The headaches generally don't come within 12 hours of each other, which lead me to believe I may be at the peak of the CH's, but I still wonder.  I haven't been able to get in to see my neurologist yet, so unfortunately I am dealing with my family doctor.  I have read a lot of positive things about the oxygen therapy and have never tried it.  My doctor is in the process of setting it up, but said it would take a few days.  I know very little about the oxygen therapy, so here are my questions:  What will the prescription entail besides the tank?  Will have to get my own mask?  What kind of mask is recommended?

Thanks for bearing with me.  I look forward to sharing my stories and helping others along the way.

Welcome to the board Matt. First and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

Do you have a decent prevent med?  A med you 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.

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.

You asked about oxygen. Oxygen should be your 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 as it must be used correctly or it will not work

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Your set up will consist of a tank...hopefully several, a regulator which easily screws onto the top of the tank and regulates the air flow, and a mask to put against your face. Make sure the doctor understands the following:

For oxygen to work, you have to get 100% oxygen to the lungs, at a rate to support hyper ventilation. This is most easily accomplished using a Non Re Breather Mask, and a regulator that goes to at least 15 LPM, preferably 25 LPM or higher. Re breather masks and low flow rates guarantee failure.

Imitrex nasal spray and injectables are very effective abortives. Like you, I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. Many have posted of rebounds from over use of imitrex. I never used it enough to have an issue.

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 you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Hi Matt and welcome

Imitrex injections work pretty well to kill CHs, however when used frequently you are likely to get rebounds. And when using them as your only CH abortive you are likely to use them too much.

Oxygen is great in that you can use it as often as you like without rebounds, with the imitrex in reserve for times when you can't be near your oxygen.

There is a load of info about using oxygen at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Exactly what the setup you'll get will vary from country to country and between oxygen providers, but normally people get or need to source a regulator and mask. For the regulator go for as high a flow rate as possible, with 15lpm the minimum and 25lpm or higher being much better. You need a non-rebreather mask as the nose canulas or rebreather masks are just not effective.

What is well worth getting is the one from the CH store. I've a couple of the earlier version and they work just great.

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Keep reading and ask anything you can think of.

Are you using a preventive med, such as Verapamil? If so, what dose?

Only using an abortive is to play with half the needed tools.

See the PDF file, below. Give a copy to your doc.

The issue of rebound with Imitrex hasn't been settled. I assume an individual variation operating. There is no test except to stop using Imitrex and see how you respond. But then, how to tell the difference between a "legit" attack and a rebound?

If you are not having more than 1-2 attacks a day, consider asking your doc to try an experiment. Stop the Imitrex and use the following. Because it's an entirely different class of meds, a reduction in frequency would at leas suggest a rebound with Imitrex is operating.

In any case, an effective preventive med is essential.
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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

--------------------------------------------------------------------------------

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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Last, hope you are trying to tie up with a headache specialist. Our collective expereince is that even neurologists have meager training/experience with complex headache disorders. W

Whoever your see, don't assume. Question gently, but closely, their experinece treating Cluster.
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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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Thanks all for your responses.  Yes, I did a 7-10 day cycle of Predisone and have also taken Depakote as a preventative.  I heard Verapamil seems to work better, so maybe I will try that next time around.  I think O2 is my best bet now.  Thanks for the links!

Verapamil is preferred over Depakote. Most start around 240mg/day, but we tend to need much higher doses. I take 640mg/day for maintenance. Also, please pay strict attention to the O2 advice on both equipment and technique. Too often we hear "it didn't work for me" only to discover it was delivered at less than optimal flow with a nasal canula. Good luck and God bless. lance