Frank,

It sucks mightily. All of it. The doc, Apria and the boss, all of it. I hope tomorrow is a better day. I certainly see what you mean about the oxygen, though. I wouldn't want to be huffing oxygen behind the front desk of the hotel I work at. Best of luck and I hope tomorrow is a better day.
Pain free wishes,

Rep

While O2 may be your first choice, some accommodation is needed when we don't control environmental issues--work, traveling, etc.

Personally, I developed a love affair with Olanzapine based on: speed of effect, cost, convenience (pill), and the small possibililty that it stops CH dead.

If you used it just for work, it would resolve the issues you write about. Consider asking your doc for a sample. You'll know with 2-3 doses whether it works for you.
===========
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]

Wow, Frank - long time! Sorry you are still going through this crap. I recall many of your posts from a very long time ago, on the old board, before the old, old board.

FrankF wrote on Aug 6^th, 2013 at 9:36pm:


Nope, you're not screwed.

With welding O2, you can be smiling tomorrow morning.
You already know the basics about how well O2 works, so just read the rest and follow my links.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Email me with any questions.

Marc
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Hi Batch,
I started the D3 regimen last Friday and am seeing positive results. Not pain free yet, but sporadic pain... nothing a strong cup of coffee can't handle.

One thing I want to ask though. The past couple of days when I brush my teeth... toothpaste tastes like crap... like fish oil. I noticed too some food doesn't taste right the past couple of days. A friend told me to try a different brand of fish oil. Anything to that?

Hi Marc,
I am doing ok, but this cycle is getting off to a bad start.

I am on the D3 regimen since last Friday and results are promising so far. Still getting hit, but a strong cup of coffee works.

Now I  need to get my doctor to shape up, or find another doctor. The pharmacy allowed by my insurance isn't doing well either.

My doctor agreed to prescribe O2 but forgot to call in the script and went on vacation for a week. Will talk with him tomorrow. 

Also got a prescription for Imitrex injection vials. When I went to pick it up, the pharmacy screwed up and gave me Statdose refill packs. So I got 10 refill packs which is 20 doses... but I don't have a Statdose kit. So I have to transfer them to empty vials and then to syringes that I do have (which I have done before). Or else, return them and get what the doctor ordered, but only half as much.

Other than this I am doing fine.

I offered the rest of the jar which is "Barlean's" brand from Ralph's grocery to a friend, to fertilize her plants, but she is not sure she wants it because it might kill her plants.

That thar is funny I don't care who ya are! Keep the sense of humor, if you can laugh at it, it can't win.

Joe

Well I finally got the O2, one "M" tank and one "E" tank... so far good, but need to adjust that if they don't want to be delivering weekly. I know... the important thing is just get the stuff and work out the details later.

But incompetence never ceases to amaze me! After I confirmed with the O2 place earlier today the script is for 12-15 liters per minute... the "M" tank delivered has a regulator that goes up to 8 liters per minute... and the "E" tank goes up to 4 liters per minute. Got a few canullas too... no mask.

I would probably suffocate using either with my nice O2PTIMASK purchased a couple of years ago... so for tonight I will get by with my 15 liter per minute regulator I bought on EBay a few years ago.

Oh but it won't fit on the "M" tank, so the "E" tank I planned to take to work tomorrow will likely be half empty before morning. Gawwd this pisses me off I have to call them again in the morning!

For new members posting "I tried O2 and it didn't work for me"... stuff like this is probably why, so hope you learn from my experience. When you get the right O2 prescribed and the right O2 is delivered, it works great!

I got my O2 delivery and the mask which I have never used before was missing the rubber pieces on the side of the mask that lets the air out but seals out everything when you inhale.  Anyhow I was convinced the O2 did not work for me.

Well after reading and reading here and I think a picture someone posted, I figured out they were missing and that basically I was really breathing the crappy air in my hot as hell house.

Totally embarrassed but thrilled because it does offer some relief now that I use the O2 correctly!!!!!!!!!!

Thanks for posting and good luck with your set up!

Bobby

Frank, so glad to read that you got the oxygen going well.  I was following this, and can relate to how frustrating it mustve been to finally get the tanks to end up with regulators that didnt hit what you needed. I emailed my doctor yesterday to approve a prescrip refill on sumatrip because the limit was at 9 pills a month (50mg), and although i only used one 50mg pill a day for 4-5 days out of the week, and was predominantly using oxygen and ice for 90% of attacks... I was replied to today by a doc  I've never met, and was told that I was overusing the drug. on top of that, she said I shouldve gotten 100mg's and split them in half to double my monthly allowance because the 9 a month was the case regardless of the size of the mg. she continued on to say that proper headache management would mean that i would only have 1 to 2 headaches a month. I respectfully told her that It sounded like she needed to research cluster headaches. it went on and i'm leaving out so much ridiculousness...but i'll wrap it up and just say I was more than frustrated to know that my file was not even read before responses were thrown my way.  I guess my doc is on vaca.

I used the tablets for years, which didn't work very well because they take too long to start working; Maxalt MLT was the best. Then I discovered the injections.



Next time you see your doctor, suggest the injections (vials... not statdose pens) instead of tablets. They work much faster, and I believe the insurance limit is still 9. You can split them like the tablets to make 18.