Hi all, I'm encouraged to see there's a place here where people truly understand the agony of Cluster H/A. 

Here's the abridged version of my story:

I first started having Headaches about 25 years ago.  I was 21, and had a headache like nothing I had ever experienced before.  It went away fairly quickly, so I thought nothing of it.  The next day I had another one, and decided to see my Dr. at the time.  After a BRIEF assessment (brief is an understatement here) he said that it was probably from some scar tissue between my clavicle and scapula.  He told me to do some stretches, and take some Advil.  Needles to say, that didn't work.  After a few weeks the Head Aches went away, and I thought all was good.  About 2 years later, they started again.  Different Dr this time. He was a MUCH better Dr, and did a more thorough assessment, but still thought it was muscle based.  He prescribed Flexeril.  Flexeril did nothing for the pain, but it DID knock me out at night at least.  Many years of this cycle (trying everything I could think of, none of which really worked), until just last week, I was finally diagnosed with CH.  I immediately did some research, and the description was DEAD ON with what I have been experiencing.  My current Dr prescribed me Imitrex auto injectors.  That night I had to use one, and was overjoyed to FINALLY have something that worked. 15 minutes after the injection,  the pain was gone!!!  The next night, same thing.  I called the pharmacy to get a refill, and found that my insurance will only cover 2 doses per month!!!!! My delight quickly turned to despair knowing that the beast would return tonight, and every night for the next month or so, and I was just going to have to tough it out again.  My DR is doing everything she can to get approval for more doses (she's very good), but that will take some time.

My wife (who is an RN) suggested trying my CPAP machine, which has been unused for quite some time now.  I jumped on the computer to research if anyone had had any success with CPAP, and that's when I found this wonderful site here.  I used my CPAP last night, and NO HEADACHE!!!!  We'll see if this continues to work, but for now.......big thumbs up.

Thank you all for being here.  The few posts I've read seem to be very supportive, and helpful.  Those of us that suffer from this need that.

G'day Fighter, welcome home, and we've lots of good news for you. The Immitrex shots are a great start, and there's ways to make them go further, and then there's probably the best defence of all -  oxygen. CPAP machines have never really helped much but check out the Oxygen Info button top left of your screen.

Then there's a vitamin regime that's been devised which is giving huge help to some 80% of ClusterHeads and we'll happily tell you all about.

We've plenty of other tips and tricks as well but just for the moment please give your wife a collective kiss from us all. Around here she's known as a Supporter, which is short for Pure Gold, and not one of us know how do what they do.

Ask all the questions you want because we're here to help,

Brian down under.

I don't see the Oxygen Help button (or the Cluster Quiz I saw in another post).  I looked at the top left of my screen after pressing the home button. 

I had read about the O2 treatment.  I tried some the other night.  I had 4 head aches (that's more than normal for me) O2 helped on three of them.

By the way, Thanks for the reply.

Australia is on my "bucket list" of countries to visit.  I've heard GREAT things about it there.

Welcome Fighter,

Below is a link to the most up to date thinking on the Vitamin D regimen that Brian referred to. It has made a significant improvement for more than 80% of those of us who use it.

Read part 2 in particular:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Then come back with as many questions as you like,  at any time. Someone is here 24/7 - 365.

I concur with Brian's comments about supporters. Many of us would be lost long ago without ours.

The Oxygen Info tab should be highlighted at the top left of your screen, together with a lot of other tabs full of useful information.

Keep in touch.

Peter.

Thank You.  Everyone on here is AWESOME!!  I'm really glad I found this place.  I hope that some day I can give back to others.

Hey, Fighter. Consider clicking out of this site completely, going back to your browser to again find us at ClusterHeadaches.com and coming back in again from scratch.

Your username and password will still be fine and with luck you'll see a set of buttons down the top left of your screen which include such marvels as the Cluster Quiz,  the Kip Scale, Immitrex Tips and a wealth of other knowledge.

If that doesn't work we'll simply send you the links, so the information gets to you regardless.

Only better days ahead,

Brian and his beer.

While oxygen has a good rep here, the issues of lugging equipment around is a hassle, getting refulls, etc. are factors to be considered when we need long term soltions.

Print this and share with you doc. She can supplly you with samples and, from a cost point of view, it's likely you can afford it ou of pocket.

I fell in love with it after my first use and it was my only treatment until I aged out of having attacks.
========
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. Contrary to the limitation in effect noted in the report, I consistently had 100% relief within 10-15 minutes.

-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.
=====

Thanks Brian,  I hit the Clusterheads.com ICON on the Right hand side, and I found all that stuff you were talking about.  Good stuff. 

I see your "Brian and his Beer".  With beer being a supposed trigger, I've been avoiding it until my cycle is over.  I miss my beer.

sj904fighter wrote on Oct 9^th, 2016 at 4:30pm:

Thanks Brian,  I hit the Clusterheads.com ICON on the Right hand side, and I found all that stuff you were talking about.  Good stuff.  I see your "Brian and his Beer".  With beer being a supposed trigger, I've been avoiding it until my cycle is over.  I miss my beer.

Hi sj...and welcome!...missing beer is a sign of intelligence..... 8-)

Over the years there have been more than a few who could not see the link list on the left side of
the site...happened to me a few times...some kind of loading glitch I suppose. I would just check out and check back in or reboot my PC....or futz around until it worked...not really knowing what was happening.

Perhaps clicking on the logo...which I NEVER considered or knew was possible.... is the "quick fix"
we need to make known in some prominent way to newcomers!!!

Best

Jon

sj904fighter wrote on Oct 8^th, 2016 at 4:21pm:

My wife (who is an RN) suggested trying my CPAP machine, which has been unused for quite some time now.  I jumped on the computer to research if anyone had had any success with CPAP, and that's when I found this wonderful site here.  I used my CPAP last night, and NO HEADACHE!!!!  We'll see if this continues to work, but for now.......big thumbs up.

I had a daily headache combined with CH till about 8 years ago when I started CPAP therapy. It dealt with the HA I woke up with every day but not the CH.

Good luck...

-Dennis-

Hi fighter, and welcome.  While you are looking at those buttons on the left of your screen, check out the "imitrex tip".  You could get 2, or possibly 3 doses from each injection.

Continue to get your injections every month even when your cycle has stopped, so you can have a stockpile.

02 is well worth having as long as you use it correctly.  Minimum of 15 litres per minute, with a non rebreather mask.  I use the 02 at home and save the injections for when I'm out.

Australia should be on everyones bucket list.  It's paradise - made all the more enjoyable by Brians company.

Thanks Maz,

I'm LOVING all the support, and help I'm getting on this site.  I hope that I am able to return it to others sometime.

Well, either my cycle is done, or the D3 regime has kicked in (I just finished the loading dose, tomorrow I start the maintenance). I've been CH free for almost a week now (oh beer..........how I've missed you).  Thank you all for all your help. Hopefully the D3 keeps them away for good (fingers crossed).

Hey Fighter,

Thanks for the update.  How long in weeks are your usual/normal episodic CH cycles?  Where did the start of your PF response fall with respect to your normal cycle?

It's very easy for episodic CHers to confuse a favorable response to the anti-inflammatory regimen with end of cycle.  This represents a confounding factor when measuring the efficacy of any CH preventative.  Accordingly, I posed the following question in the online survey of CHers taking this regimen to prevent their CH in order to quantify this confounding factor.

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Using this chart, where in your normal cycle did your PF period start?

Thanks again and take care.

V/R, Batch

On that scale I'd put it at about an 8.  My cycles normally last about 6 to 8 weeks, this one lasted about 4 weeks.  I saw the survey on here, and I will be taking it after a month on the regime.

Thanks!  Exactly the answers I was looking for and it's good to hear you're staying on this regimen, the health benefits over and above preventing CH are hard to ignore.  Taking the survey in a month also helps, thanks in advance.

See the following link for a growing list of health benefits made possible with the anti-inflammatory regimen:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

As a side note, Henry Lahore, the gent who runs the VitaminDWiki website is a dear friend who lives 30 minutes North of me near Chimacum, WA.

Take care and please keep us posted.

V/R, Batch