For many years I have used Zomig for my nightly hits when various preventatives have failed.  One nasal shot works well, only drawback being cost (ouch) and the 20 minute or so lag time until it kicks in.  But once in effect I am done for the night, no more hits, 7 hours of sleep, with only a slight "hangover" in the am.  Price is high, but worth it.

Lately I have tried using O2 to ease the pain during the transition waiting for the Zomig to take effect.  Works fine, the O2 takes just 5 minutes to knock back the pain, but it seems somehow to limit the ongoing effect of the Zomig -- I get small/medium hits later in the night after using the combination.  Anyone else ever experienced this?

I have used O2 alone to good effect, but it only aborts the hit I have at the moment, not future ones.  The great value of Zomig for me is that it clears the decks for the rest of the night, unless I mix in the O2.  Thoughts?  Thanks.

I'd be interesed to know about the preventives & dosing you have used. Wold be useful to try and figure our why they don't work for you. Please send infro: name, dosng.

Look over the PDF file, below and see if any ideas there.

Are you seeing a headache specialist or a doc with a good history of experience with headache? Failure to have a skilled doc is a major source of our problems.

---

Thanks Bob.

I am on my second doctor.  The first was adequate, but not terribly creative.  I've recently moved, and  the new doctor is experienced, compassionate and open-minded.  Has me lined up for a sleep study in two weeks; thinks the link between CH and Sleep Apnea is worth pursuing since my hits are 99% at night.

I had 3 good years of results with Verapamil at steadily increasing doses up to 900mg then it stopped working.  I have now gone chronic.  We tried Depakote with no effect, and I am now two weeks into the run-up of Topamax dosage, so the verdict is out on that.

I've tried the D3 regimen several times and that doesn't work for me either, though I still take it cuz it can't hurt.

For me the beauty of Zomig is the reliability.  7 headaches per week, each 90 mins after I go to bed, hit 'em with a Zomig spray, 20 mins of pain, then done.  Not fun, and expensive as hell, but I don't have to walk around drugged up like a zombie all day.  If we can find a preventative that will work I am all for it, but until then, I am left with the nightly spritz.

Your odds are much improved if you are working with a headache specialist for all other docs have meager training around headach. You live in a city where it won't be hard to find someone.
==
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.
=====================================================================
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.
==========
When the standard Cluster meds don't work, it raises the possibility that you are not dealilng with Clusster. See,

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
=======
But if you don't want explore the preceding and the doc thinks you have gone Chroinic, discuss with you doc:


Headache. 2015 Mar 31.

Clomiphene Citrate as a Preventive Treatment for Intractable Chronic Cluster Headache: A Second Reported Case With Long-Term Follow-Up.

Rosen, T.D.
Author information1Geisinger Health System, Department of Neurology, Geisinger Headache Clinic, Wilkes-Barre, PA, USA.
Abstract
OBJECTIVE: To describe a second case of treatment refractory chronic cluster headache responsive to clomiphene citrate and with long-term follow-up.
METHODS: Case report with 7-year evaluation.
CASE: A 63-year-old man with a 17-year history of chronic cluster headache preceded to have significant adverse events or was nonresponsive to multiple cluster headache preventive medications including verapamil, lithium, valproic acid, topiramate, baclofen as well as greater occipital nerve blocks and inpatient hospitalization. The patient experienced 3-5 headaches per day. On clomiphene citrate 100?mg/day he became 100% pain-free and remained so for 3.5 years with only mild fatigue as a side effect. He then had cluster headache recurrence and did well on gabapentin for another 3 years with repeat headache recurrence. Clomiphene was restarted, and he became pain-free once again.
DISCUSSION: This is the second reported case of the effective use of clomiphene citrate for the preventive treatment of medicinal refractory chronic cluster headache. This is the first case to report long-term follow-up of this neurohormonal treatment. Clomiphene citrate appears to be safe for extended use in chronic cluster headache even in an elderly sufferer and has a minimal side effect profile. The mechanism of action of how clomiphene prevents cluster headache may involve both its ability to enhance testosterone production and its ability to bind to hypothalamic estrogen receptors. Clomiphene citrate should join the list of alternative cluster headache prophylactic treatments to be considered by headache specialists when conventional cluster headache preventives are ineffective.
© 2014 American Headache Society.

PMID:25828543[PubMed]
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My personal relief came from this med and, note, it prevents Cluster in a few cases. Nice thing about this one is that it's cheap and you will know if it works with 2-3 uses.

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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Bob

Brevity is the soul of wit, but in this case it did not serve me well. 

My first neuro was well-versed in headaches, but not a member of the American Headache Society. My new neuro is an AHS Member and I located her via the headaches.org website.  She and another specialist in the practice work as a team and have 11 CH patients under care, so they have a good bit of active experience.  They seem very knowledgeable and open.  "Oxygen" was the first word out of her mouth in our initial consultation. Where my last doc dismissed "electronic" options, and nerve blocks, they hold these out as possible options when others fail.   Their view is that there are dozens of potential remedies yet to be tried and that with time and patience we will find something that works.  We've got about three more weeks to see if the Topamax takes hold.  If not, then onto something else.

Zomig is our fallback while we work through alternatives.  I will be sure to show her the citations you have included, and I am grateful for your efforts in posting them.

There can be little doubt about the diagnosis, of this I am 100% confident.  Every symptom fits the bill. I've had two brain MRI's in the past 4 years and a full cardio work-up including nuclear stress test for an unrelated surgery.  My original diagnosis came from an ENT, a GP, and a Neurologist.

Hey Traveller,

Oxygen therapy can be very effective as a CH abortive, but it falls on its face as a preventative...  Once you understand that fact... oxygen therapy works as advertised...

I've used oxygen therapy as my only means of controlling my CH from the time I was diagnosed as a chronic CH'er in 2005 through 2010 when I developed the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and the vitamin D3 cofactors.. 

I've learned a lot about oxygen therapy in all that time.  For starters, higher oxygen flow rates of 25 to 40 liters/minute support hyperventilation so are even more effective with very short abort times... on average 7 minutes across pain levels 3 through 9 with increased efficacy.  Above pain level 9 on the 10-point headache pain scale, you're in for some heavy sledding as nothing works very well at that point.

In 2007 we modified the method of oxygen therapy I developed in 2005 that supports hyperventilation to work with an oxygen demand valve...  A far more expensive way to go but very convenient and very effective.

In January of 2008, we started a pilot study of oxygen therapy at flow rates that support hyperventilation with seven participants... All of them checked with their PCP or neurologist prior to participating and all received a green light.  Six were chronic and one episodic, six were men and one was a woman. 

Four of them used an oxygen demand valve and three used a 0-60 liter/minute oxygen regulator from Flotec along with a ClusterO2 kit non-rebreathing oxygen mask with 3 liter reservoir bag. Participants using the Flotec regulator usually selected an oxygen flow rate of 40 liters/minute for their aborts. 

There are no flow rate settings on an oxygen demand valve so you control the flow rate with the respiration rate.  An oxygen demand valve works just like a SCUBA diver's regulator.  It delivers oxygen on demand as soon as you start to inhale.  The harder you inhale, the higher the flow rate

The seven pilot study participants collected abort times and pain levels at the start of therapy on ever abort for eight weeks.  In all, they collected data on 366 aborts with these two methods of oxygen therapy. 

The primary endpoint was a pain free response in 20 minutes or less. The overall efficacy was 99%.  Two aborts took longer than 20 minutes and in both cases, the study participant got trapped away from his oxygen system until the pain had reached 10 on the 10-point headache pain scale.

The average time to abort was 7 minutes... The following chart illustrates the average response to this method of oxygen therapy as a CH abortive...  One of the participants collected abort data for a week using a standard oxygen regulator at a flow rate of 15 liters/minute with a non-rebreathing oxygen mask as an active comparator.

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Other than the exceptionally short abort times, the most significant finding from this pilot study was the direct relationship between CH pain level at start of therapy and abort time...  As you can see, the higher the pain level at start of oxygen therapy, the longer that CH took to abort. 

This finding had not been reported in other studies of oxygen therapy as an abortive for CH.  The take away from this finding is simple... Start oxygen therapy at the first sign of an approaching attack...  The longer you wait... the longer it's going to take to abort the CH.  That also goes for shadows...

Using a demand valve is no guarantee you'll get a rapid abort unless you stick with the proper procedures that require respiration rates that support hyperventilation. 

One pilot study participant started using this method of oxygen therapy with excellent results for the first five days.  At that point he got lazy and started breathing normally and not hyperventilating... You can see the rise in his abort times in the following chart.

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The preliminary results of this pilot study were so exceptional, the Linde Group in Germany, who had provided the oxygen demand valves, insisted we submit a patent on this method of oxygen therapy.  Three of us spent months drafting the patent application and submitted it to the USPTO in June of 2008.  It was published 18 months later and the patent granted in April of 2012.

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If you're wondering about my background, I have a dated degree in Chemistry.  I was also a career Naval Officer and spent 15 years flying Navy fighters for a total of over 3000 hours flight time.  All of that flight time was spent breathing 100% oxygen from takeoff to landing on every flight.

Navy and Marine Corps jet pilots all receive annual refresher courses in aviation physiology and most of that involves the respiratory physiology of breathing 100% oxygen.  I've another 10 years experience with oxygen therapy as a CH'er.

In 2013, I developed an improved method of oxygen therapy as a CH abortive that involves hyperventilating with air for 30 seconds followed by inhaling a lungful of 100% oxygen and holding it for 30 seconds.  Three to five of these sequences are usually sufficient to abort CH at pain levels 6 and below..

There's one more chart from the pilot study that may be of interest...  We also discovered an interesting phenomenon where the frequency of CH increases after starting oxygen therapy.  As you'll see in the following chart the increased CH frequency starts dropping around the 4th week and drops below the starting frequency by the 8th week.  All seven participants experienced this same phenomenon.

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I bounced this phenomenon off several neurologists and the Aerospace Physiologists at NASA...  The increase in frequency of CH after using oxygen therapy as an abortive indicates a mechanism of action involving induced vasoconstriction of arteries and capillaries in and around the trigeminal nerves due to oxygen, but not a pharmacological intervention that interrupts CH pathogenisys. 

In other words, if the CH triggering mechanism is still active following a successful CH abort with oxygen therapy, as soon as the effects of the oxygen dissipate, the CH returns.

The decrease in CH frequency along with the associated decrease in headache intensity and time to abort appear to be the result of vascular toning. 

In other words, repeated aborts with oxygen therapy strengthen the smooth muscles lining the arteries and capillaries in and around the Trigeminal nerves.  The added strength and muscle toning appears to make them less susceptible to the CH triggering mechanism that forces them to dilate triggering CH pain.

Hope this helps...

Take care and please keep us posted.

V/R, Batch

Thanks Batch.  I read your O2 instructs some time ago before using it.  I manage to get excellent results at 15 LPM - I taped the vents, and I cover the outflow tube with my thumb when exhaling, allowing the bag to fill while I exhale, so no waste.  I have a full hit waiting when ready for the next breath.

My question was aimed more at the interaction between O2 and Zomig.  Somehow O2 seems to limit the effectiveness of Zomig.  Zomig has a systemic half-life of about 12 hours and reaches peak effectiveness about 2 hours after use.  Thus, it will kill off any subsequent headaches for many hours after the initial use.  But for some reason, if I use O2, I lose some of the downstream effectiveness of the Zomig and I can have another headache a few hours later -- which does not happen if I do not use O2.  Simple solution -- don't use O2, just wondered if anyone else had seen this.

Hey Traveller,

Interesting observation.  I've used only sumatriptan succinate (Imitrex) and never noticed this problem.  In fact, when I was taking imitrex, I would abort the first hit of the night with oxygen then take a 25 mg imitrex tablet and usually slept most of the night.

An allergy can and will throw all that into a cocked hat.  The flood of histamine from an allergic reaction will limit the effectiveness of all forms of CH intervention including oxygen and imitrex used as abortives. 

You might want to try Benadryl (Diphenhydramine) but check with your PCP or neurologist first. 

Benadryl is a first-generation antihistamine and passes through the blood brain barrier to block histamine receptors in brain cells. Second- and third generation antihistamines cannot do this so will not work as well with respect to a CH'er suffering from an allergic reaction.

The time to maximum serum concentration from an oral dose is roughly 3 hours and the serum half life for an adult is 10 to 12 hours...  That makes the recommended adult dose one 25 mg Benadryl tablet every 12 hours.

The pollen count is extremely high around here in the heart of Puget Sound so I'm taking a 25 mg tab of Benadryl twice a day plus 25,000 IU/day vitamin D3 to stay pain free...  If I skip a Benadryl tab or take less than 20,000 IU/day vitamin D3... I get hit.

Talk to your PCP or neurologist.

Take care,

V/R, Batch