Hi there, my name is Elaine - my husband, Warren, has had a history of standard migraine headaches for many years.  about 3 weeks ago, he started getting headaches that were unlike anything he's ever experienced before.  They happen every night, usually between 7 and 11 pm (with 9:30 being the most constant time), and can last for 3+ hours. 

He's not the type to go to the emergency room or even take meds (including otc) - but he finally agreed to go after 2 weeks of nightly headaches that are so very not like a migraine.  All of his pain is on one side (the right side) of his head, his nostril blocks during the headache, but is open once the headache stops - the pain comes on quickly and leaves quickly.

The ER did a CAT scan and found nothing that could be causing the pain.  He saw our GP this past Monday who put him on 25mg of Elavil and some Fiorecette (sp?) - The Fiorecette didn't have any effect on the headaches, with the elavil, its too soon to tell. 

I started researching and found cluster headaches - they are describing him to a T.  I let our GP know and told him about Triptans and he said they are very expensive and would need to jump through hoops to get insurance to cover them.  I asked him about oxygen, he said that is also expensive and requires hoop jumping as well. He then referred us to a Neurologist. 

In the mean time, I have a friend who is on oxygen and she let us take home a canister (she has a machine that fills the canisters) and a non-rebreather mask last night.  I have done hospice care and know the precautions and operation of oxygen.

Last night, at 9:30 on the nose, my husband woke up with a headache, already tears in his eyes, already almost screaming in pain.  I immediately gave him the mask and turned on the oxygen - within 5 minutes the headache was gone.  The same thing happened tonight.  He's calling the oxygen a miracle as for the last few weeks he's been afraid to go to sleep, and has been so exhausted during the day from the pain the night before.

Though he hasn't yet had an official diagnosis, I firmly believe this is his first episode of cluster headaches. He took the quiz on this site and scored 100 on it.  We don't know when the neurologist appointment is yet (my gp's office sets it up and will call us), but does anyone have any advice on how to convince them to prescribe him oxygen?  Last night was the first restful sleep he's had in weeks.  Warren is 49, and otherwise very healthy - the last time he was in an ER was in 1997 for appendicitis, he is fit, no breathing problems, doesn't drink, etc.

Thanks for letting me ramble, and for any advice you can give.

Elaine

Hello Elaine & Warren

  And Elaine, thanks for being a supporter.  It was my wife who found this site for me 2/02, after 13 months mis-diagnosis, non-working meds, CTs (normal), MRI (normal).  Was having 6-8 attacks daily, sometimes 3-5 at night, all Kip 5-9, most 20-45 minutes, some 1 1/2 - 2 hr + horrors . . .  was a basket-case, afraid to sleep, afraid to eat, always in fear of the next one (when will it come? How bad will it be? How long will it last?)  This place gave me the info to take to my doc and get a preventive (Verapamil) and script for 02 (though script was for 4lpm with nasal canula (nose thingy).  Knew (from reading the site it was too low & wrong delivery system, but had the script)

  I use a 15 lpm regulator with the O2ptimask which has a 3 litre bag (links on the site) which allows me to hyperventilate and kill the attack in minutes if used early-on.  Many use a 25 lpm regulator to guarantee ability to hyperventilate. . . . the key is 100% 02 which is a vasoconstrictor.  Our pain is caused by the blood vessels dilating and putting pressure on the tri-geminal nerve.  If you get a schematic of the tri-nerve, you can trace his pain.

  Start a headache journal.  Note time, duration of attack, intensity (use "the kip scale" .  .  . link on left), and take your journal (and a copy of the Kip scale) with you, along with other info off this site to his Neuro appt.

  Oxygen is NOT expensive, especially considering how effective it is.  I pay $10 per "E" tank, no deposit, no monthly fee, no limit on tanks (I keep 20 so I don't have to visit the med supply every few days).  Rates vary about the country, so if insurance won't cover, call around the medical oxygen suppliers in your area, tell them insurance won't cover and ask for their cash price.  Welders 02 is another route to go and (after the initial deposit) is MUCH cheaper.

  He will need a preventive (there are many).  Verapamil is popular because it works for most and has few side effects.  It's a "taper" drug that you increase until an effective dose is reached.  I had my first pf day (in over a year) about three weeks after coming here when I reached 240 mg (considered the minimum effective dose), had three attacks that night, but had the 02 to kill them before I had to "dance".  Got as high as 480 mg, then back to a 360 mg maintenance dose.   Many use much higher doses and often in combination with other meds such as lithium.

  Read, read, read . . . ask any questions you may have.  You've found the motherlode of CH info/caring/sharing and we DO understand his pain.

  Be Safe,   PFDANs

     Richard

Hi Elaine,

Kudos to you for getting that O2 for your husband to try. CH obviously is the sort of thing that nobody wants wants to have, but at least the relief he's had from the O2 is very encouraging.

So many of us find that the garden variety neurologist is badly uninformed about CH, but doesn't realize it.  :( There's a MUCH better chance of getting reasonable treatment and a reliable diagnosis from an actual headache specialist, if you can manage getting an appointment with one.

Things are looking up for Warren now, because besides O2 as an abortive, there are also some effective preventatives that can be learned about here. And BTW, in a pinch, O2 can just be rented from a welding supply place, and cheaper.

I'll quickly mention and link to some non prescription preventative therapies that many of us have abandoned the pharmaceuticals for.

High dose vitamin D3, along with other specific supplements: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The clusterbusters approach, which many find to be more effective than any drug. Here's a Newsweek article about clusterbusters: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 

Bless you for being an active supporter, my wife found the old CH streaming board for me many years ago and saved my sanity!

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Read this link and print out the suopporting info for your neuro. 02 is NOT expensive, for some reason it scares doctors. >:( I was with kaiser for many years and they refused to cover 02. WE found regulators on E-Bay for $20. I rented the E-Tanks for $4.25 a month, refills were $11. My TOTAL out of pocket expense for a full tank set up was less then $40. That's up to 6 aborts. That won't cover one half of a single imitrex shot.

Go to your health food/vitamin store and get some melatonin, an over the counter sleep aid, read the labels and look for this formula: n-Acetyl-5-Methoxytryptamine    There are several different versions of melatonin, we've seen the best result with this formula. Start him with 12 mg, about 30 minutes before he goes to sleep. Many can avoid the night time "wake up" attacks this way. Give it a few days to see if it helps.

Bejeeber is right, most garden vaariety neuros are as ignorant of CH as the GP's are. A headache specialist neurologist is your best bet, a doctor who will listen is the next best thing.

You both have much learning to do.....an educated CH'er hurts a lot less. Get hubby on this board, the good news is you're not alone anymore.

Joe

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==========
I suspect your Dx of Cluster is accurate, BUT a new Dx at your husband's age makes a good diagnostic work-up a safer move.

General neurologists are woefully poor in training/experience around headache. So, I'd ask this man you are to see if he has experience/training. Just call the office; don't need to talk to him directly.

Our collective experience says, use a specialist, if at all possible:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. 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.

5. 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.

6. 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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If Cluster is a final Dx, I hope you can get your husband off his masculine butt and get involved. This is too complex and demanding a headache type to be handled with tough passivity. He needs to be here, learning: you can carry him onlly so far without his active engagement in learning/self-care.
====
While lining up an appt, start some basic learning about Cluster.




Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
====

A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
--------
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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Explore the buttons, left, starting with the OUCH site and its many intenal links.
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Print out the PDF file, below. It evaluates common treatments and you can use it as a tool to discuss treatment options with the doc.
====
Given the migraine history, suggest you print out this publication to digest over time. From one of the better headache docs in the Midwest. The site is worth exploring (even tho not as well organized as it could be, the material is good).

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ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

In PDF file.
======

---

It's very common to get hit at night and especially when in REM sleep. It's good he is fit but there may still be certain things which work as a trigger for him besides going to sleep. So many triggers can exist it is hard to list them all but if you do a search on the word you'll find quite a lot. Your husband is lucky to have you as a supporter. God bless. lance

Thank you all for your responses.  Warren is very active in wanting to know why and how CH's work, I'm just more computer literate than he is, lol - plus he works 50+ hours a week and I don't work at all, so I don't mind doing the research, etc. 

We are from Western Massachusetts - in a very small town called 'Ware'.  I'll try to create/update my profile today. 

It looks like I/we have a lot of reading to do - some of the sites listed I've already read in the last few days, but there are many I haven't.

Thank you again!

I am in Attleboro, on the east coast of MA. If I can help let me know. Blessings. Lance

Thank you so much, Lance.  I found a doctor that was on the migrainereasearchfoundation.org website that is in Springfield - there were none in this area from the other referral services that were listed in this thread.  I have to call our GP today and have him do the referral form (gotta love insurance rules) and get the appointment set up for us. 

In the mean time, the oxygen is still working its miracle - he's been hit with at least one headache every night, but the oxygen makes them go away within minutes.  Thank god for the friend that is lending us their travel tanks and filling them for us until we can get our own!

Thanks again,

Elaine

Agreed, thank God for O2. Hopefully that neuro will be up to date on CHs but do not assume it. Print articles you find here and bring them with you. Has your husband tried an energy drink along with the O2? It sounds as if things are working out fairly well as they are but iuts another tool in the belt. blessings. lance

I'm with Lance on the energy drink. I chug an ice cold sugar free red bull in between breaths of oxygen. It seems to speed the abort and push the come backer hits back a bit. Not real good for the late night hits of course as I'm caffiene sensitive so it'll keep me up the rest of the night. ;)

My wife actually works for a company in Springfield Mass., remotely, we live in San Diego. I travel with her when she visits the home office, we would love to meet you and your hubby, grab coffee next time we're back there! Thanks again for all the legwork you do for my CH brudder! ;)

Joe

Elaine, the reason doctors immediately get ready for a "fight" with insurance companies over the cost of oxygen is they assume the patient will be prescribed at rates like used for lung & heart disease. As you and Warren have learned, 5 minutes seems to be all he needs to abort. At that rate, the eTank should last you a couple weeks. You don't need a concentrator and such which is what your doc is probably assuming.

When my husband (Guiseppi) is in cycle, he gets a deliver of about 6-8 E-Tanks. He rarely goes through all of them in a 3-4 month cycle. And if he does, they pick up the empties and redeliver new ones. We use Apria. 

We always keep at least 1 full one, even after a cycle ends, and return the rest. We keep one and pay the monthly rental (about $5) because we don't ever want to be without!  We take it with us when we go in the car (when he's in cycle) and we keep Imitrex shots available for vacations.

As Joe mentioned, I travel to Springfield MA monthly and he comes with once in awhile. Perhaps we can meet you and Warren for coffee sometime? There's a couple other folks there  - Dennis McCracken is actually not that far from you either. And Whimsey over on the east side. 

Hoping for quick success. If the specialist isn't helpful, let me know, and I'll reach out to Dennis to see who he sees. (Or Dennis, feel free to chime in!)

Christy

Thank you all so much :) We'd love to meet for coffee!  Warren's job requires him to drive over much of Western Mass during the week-days, but evenings and weekends we're usually free.  His corporate office is in Springfield.

We are hoping he doesn't have chronic Ch's and/or they stay mainly at night.  Carrying oxygen would be an issue - and Warren has a severe phobia of needles (passes out, gets sick, even had a seizure once), so the thought of having to inject himself is not one he even wants to entertain at this point - I think he'd almost rather the headaches if that were his only option.  We've been married to each-other 2x (hence my screen name, lol), and I swear each time we got married only because a blood test wasn't required in the states we were married in.

Last night, he started getting a headache but didn't reach for the O2 because he was afraid that maybe he's been having psychosomatic headaches that weren't actually the bad ones... he was wrong. 

Our GP had given him a sample of Relpax (one of the triptans, I don't remember which one) - pill form, so he took that and used the oxygen for 20 minutes before it finally went away. I don't think he'll make that mistake again.

The neurologist he's going to be seeing is Michael Sorrell out of Baystate in Springfield - if anyone has any experience or other referrals in the Springfield or Northampton area, we'd gladly accept them.

Have a pain free day!

Imitrex also comes in a nasal inhalor, many have success with that, might be an option so he can avoid the needles!

Joe

Warren's anxiety about needles is a barrier to Imitrex injection and the extensive travel creates some difficulties with oxygen.

A number of us have had excellent, rapid response from this med. It has the advantage of being a pill and cost is modest. Suggest you print out this abstract and discuss with the doc. Using it 1-3x will let you know whether this is a good option or not.
========
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.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

Another option, though I'm not sure of the laws from state-to-state, is medical marijuana. I've been told there are specific strains that are effective abortive's. While obviously not an option during work, it may be viable at night.

Also, with regard to the injections, my guy also hates needles. I've suggested to him that I give the injection, that way he can look the other way and focus on something else. We were able to get the Imitrex pills approved at a higher quantity per month so the need for a solution regarding injections was put on hold for the time being.

Just a thought.

Oh, something I've learned through the years is that many docs give a canned answer because they don't want to have to deal with the hoops the insurance companies can put them through. Which makes it even more important to keep strong, arm yourself with the info, and stand your ground. Remember, ultimately, you're paying for their Porsche.

JessJames1968 wrote on Jul 26^th, 2011 at 12:38pm:

Another option, though I'm not sure of the laws from state-to-state, is medical marijuana. I've been told there are specific strains that are effective abortive's.

Marijuana is a vaso-dilator and something that can bring on an instant CH (just like alcohol does for many). I've not seen anyone here ever say that it is an effective abortive.

Mike NZ wrote on Jul 26^th, 2011 at 3:00pm:

JessJames1968 wrote on Jul 26th, 2011 at 12:38pm: Another option, though I'm not sure of the laws from state-to-state, is medical marijuana. I've been told there are specific strains that are effective abortive's. Marijuana is a vaso-dilator and something that can bring on an instant CH (just like alcohol does for many). I've not seen anyone here ever say that it is an effective abortive.

My bad, I should have used the phrase "might be effective abortive's," sorry ... poor phrasing. :-[

You are correct. However, everyone's body chemistry is different and there are many different breeds (strains is the wrong word, sorry) of the plant. Each breed is designed to have a different effect, (ie: get a person up and moving, mellow a person out, calm nausea, calm nerve pain, etc.) I've found, through a lot of reading and conversations with proponents of legalization, that today's plants are not anywhere near what they were. They are more specialized.

In any case, it's worth looking into. An extra tool in the arsenal is always a good thing in my opinion.

Just a thought ...

Mass doesn't have legalized medical marijuana - plus Warren is allergic to it (found out long ago in much younger days) - makes him sick and gives him a splitting headache.

I think the cluster episode may be over for now - the night before last he had one, but it wasn't as bad as the others, then last night he had none at all for the first time in nearly a month.

He's scheduled to see the Neuro/headache specialist on August 10th - and we're keeping a full tank of oxygen at the ready in case we're wrong about the cycle being done for now.

How do the cycles normally end?  As this seems to be his first one, we've got no clue on whats "normal".

Thanks!

Most here won't say an episode is done until two weeks after the last one.

wrote on Aug 9^th, 2011 at 9:55am:

Wow Ok Thank For You SoGood!

Hey, yam-yam...  You forgot to add your spam link.   8-)

Best,

George

wrote on Aug 9^th, 2011 at 9:55am:

Wow Ok Thank For You SoGood!

So predictable. 

   Potter

Potter wrote on Aug 9^th, 2011 at 12:37pm:

wrote on Aug 9th, 2011 at 9:55am: Wow Ok Thank For You SoGood! So predictable.     Potter

I think yam-yam flunked spam school.   ;)  You're gonna spam, you gotta include the link.  Otherwise, it's just a fire drill.

Fifth one today.   ::)

Thanks, now I'm craving Spam and Eggs!

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