What a relief to have found this site, and O2.  I’ve had what I thought were headaches caused by a pinched occipital nerve for at least 15 years.  They would occur 3-5 times a day for 2-3 weeks.  I’d keep going to the Chiropractor until they stopped, thinking my back was finally back in place.  They were not very regular in time of day or season.  This last group was/is different.

It started about 6 weeks ago and I can set my clock by them.  Go to sleep + 60 minutes = headache.  After a month of about (3) total hours of sleep a day and (3) headaches plus the odd daytime one, I went to the emergency room.  After MRI, CAT scan, & Contrast, and then an Occipital nerve block, I thankfully went to sleep waiting on the neurologist to come.  I woke 60 minutes later with a headache just as he was walking in.

He gave me O2 while he questioned me and told me that I had cluster headaches and O2 was a treatment.  And it sure does work well most times.  I am so very grateful for the pain relief I can’t begin to describe it, but I suppose those reading this know very well.  So now my remaining problem is total exhaustion.  One hour of sleep at a time followed by 15-30 minutes of O2 to stop the pain is better, but I’m still feeling way below average .

I don’t know why the sudden change in cycle.  Not only is this one very regular (1 hr. after going to sleep), but it’s also gone on 6 weeks now rather than 2-3 as in the past.  Additionally, prior to this cycle, I went a record (for me) 8 months without a headache.  I read that a typical cycle lasts more like 3 months.  Did I just become "normal".  Did I go chronic?  I guess time will tell.

Any suggestions for extending my sleep time beyond 60 minutes?  Thanks for any suggestions, and THANK YOU for this site!!!
Ed

Former Potato...welcome...sorry you need to be here...but yur HOME! One friend nicknamed his son
"potato" when he was born....brown and wrinkly...I wonder if it stuck?

Enter melatonin in the search function....many folks have been helped by...I think
a 3mg dose prior to bed....the threads will tell. Some use Benadryl...as it makes a fella drowsy.


When in serious cycle I used to be awoken (awaked?) multiple times per night. Initially
I would rant and rave and curse and pace and sweat and just generally rage.....
Being slow to the reckoning it took me a while to figure out that "THIS AINT WORKING"....
and I was exhausted every morning and the rest of the day.......so.....

I set up my O2 tank right next to bed....all needed was to place the mask (clustermask!) and crank the  valve. When hit....I swung legs over side of bed....(no lights) kept my eyes closed...breathed deeply and slowly...emptied my mind of ALL thoughts but "breath"...and basically did not allow myself to fully wake up. Killed the hit...turned off the valve and back asleep in seconds. For some reason these nighttime hits were more amenable to O2 than day hits...so that was a blessing. Adrenaline, anger, sweat, even movement.... were the enemy of the good. It was sorta like meditation only more like survival instinct...............

It takes practice but eventually... even with 6-8 hits per night...between hits I got GOOD sleep...and next morning was just fine. Worked this calmness in the face of a storm for daytime hits too....when
they weren't too bad (8 or higher and all bets off...I carry a pillow to scream into)....the calmer I
was the better abort measures worked....

Best

Jon

I've had GREAT success with Imitrex.  The Auto Injector works best, but good luck getting your Insurance company to approve more than 2 doses per month.  The nasal isn't as quick, but has been working very well for me as well.  The Nasal tastes like crap, but that's a small price to pay.

Thanks Jon & SJ,

I grew up in Idaho, hence ex_spud, and I'm getting more brown and wrinkly every day  :).  I've been trying your technique Jon and it works if I waken early enough.  Usually though, when I wake, it's far enough along that I can't sit still and wait.  I tried something new last night and jury is still out, though I'm encouraged.  Given the 60 minute trigger after falling asleep, I bought a 1 hour cooking timer and set it to 50 mins.  I put it under an adjacent pillow to muffle the ticking and turns out the pillow was stopping it.  I figured this out after the 1st 2 headaches.  The 3rd one though, it seemed to work.  I woke to the alarm, hit the O2 for about 5 mins, and went back to sleep for an hour, forgetting to reset the alarm.  I then woke to #4 which was worse than the first 2.  I totally skipped #3 though  :).  I didn't know if it would be possible to stop a "scheduled" headache before it starts and then get a free hour of sleep.  But, I think I did.  Will try again tonight.
Ed

As you begin to learn about the various treatments we use for Cluster you find that there are pros and cons associated with each treatmen.

As effective as O2 is a an abortive, it disadantage is it short period of effectiveness. You're experiencing this trying to use it at the same as trying to sleep. Quck action aboorting an attack but short effective life span  leading to you waking up with the attack renewed.

Good sleep requires an abortive with a long, effective life which will carry you through a good period of sound sleep.

Folks have their own favorites which will meet this requirement: relief and long action. I'm sure you'll get some guidance from others.

My personal favorite;

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
------
P.S. I experienced 100% relief, contrary to the limitation noted in the report.

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

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.
=====

Thank you Bob, I'm waiting for an appointment with neuoroligist and I will definitely ask for that.  Pain is so much better with O2 as a weapon, that lack of sleep is my primary problem of the day.

Don't only ask for the med by name. Print  my message for him so that he can see the medical source of your reqquest.

Will do Bob.

My little experiment was a success last night and I really feel great right now!  I went to bed at around 5:30pm, set the timer for 50 mins.  Woke without a headache and hit the O2 for 5-10 mins and went back to sleep for another 50 mins. Repeated once more for a total of nearly 3 hours sleep.  Then got up and worked till about 12:30 am.

I did the same starting about 1:00 am.  On the 3rd wakening I decided to see if about 3 mins of O2 would work.  Nope!  After going back to sleep I re-woke after about 10 minutes with a medium sized headache.  It took about 15 mins to stop that one.  So I called it a night and I feel pretty human at the moment.

I also confirmed that I need a larger regulator.  I have M tanks and E tanks both with 15 lpm max.  I got (2) of the CH masks but had only opened one and I've been using it on the M tank.  I've been sucking the balloon dry when I have a headache.  So last night I put the 2nd CH mask on the E tank.  I alternated between the M at 15 lpm and the E at 10.  It was good for the medium headache that I was able to sit still for.  But I suspect I'll need a bit more than 25 lpm for a bad one.

I spent some time yesterday looking on e-bay and elsewhere.  I think I want the demand system and a regulator well above 25 lpm.  I hunted around for the Lifegas stuff that is mentioned in the "Oxygen Info" tab on this site, but have not found how/where to buy it.  Will search some more today.

If you find a way of manipulating the oxygen dose and gain some longer sleep periods, this doesn't solve the problem.

We never discuss this issue here but---

Our brain uses good, solid, long periods of sleep to work at reorganizing itself from the times we are wake. When awake the brain is actively engaged in conscious processes--all those activities which we keep our bain active/alert. During sleep, it doesn't stop working--but does change functions. It's busy organizing the experiences of the wake time, reworking the "filing" system, and other functions which can't be done when we are conscious. Bottom line: people with chronic insomnia, for example, will, over time, experience emotional problems and problems around their conscious thinking skills.

Point being, we need good solid, consistent sleep patterns for our overall well being. So, increasing sleep into somewhat longer periods may feel good the next day is not the whold picture.

Really urge you work work with a skill headache doc who undersands these issues.

I totally agree and hope I can get an appointment next week and figure out how to get 8 straight hours.  I'm hoping the drug you recommended is a solution.  In the meantime, last night was a blessing.

I have one of these demand valves. Works great. No better way to use O2. The mask or mouthpiece from a cluster mask will fit this.
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