Hi there!

- female, migraines with aura
- X years ago started getting unrelenting eye socket crushing ice pick pain
- oxygen works 80% of the time, which i found out thanks to you all

New people: don't give up! Read all the info on this site, and keep trying. :)

Thank you so much for existing.

:)

icepicksundae,
                           Hi, and welcolme !
have you read up on the vit d regime yet  ??
please read it and try and see whether or not it helps you, its helped so many people, including me !  Its way cheaper than the medications we pay for and super helthy for us as well....  hope your pain eases soon,
goodluck
colin

G'day Icepicksundae. Welcome home.

Re. avoiding of sumatriptan: because you now HAVE heart disease or because you are afraid it might lead heart disease?   If the latter concern, there isn't any concern about injection.

An alternative which works almost as fast as sumatiptan and much less expensived. If you can get a sample from the doc, using it 1-3x will indicate 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.
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  A Regulator

◦ Regulates the flow of oxygen out of the tank.  Needs to be capable of delivering oxygen up to at least 15 liters per minute.  10-12LPM is sometimes enough but less will not be as effective.  Higher rates can sometimes be even better, such as 25-60 LPM.

   For many of us, the difference between 10-15 lpm regulator and a 25-45 lpm regulator is phenomenal.

Just to be sure. Does your oxygen mask have a bag on it? Does it have any open holes on the side? These are important things. We've found that hyperventilating the O2 will speed the abort. O2 or any CH abortive must be started as quickly as possible to work.

Imitrex pills are not considered to be good CH abortives, they're too slow acting. If you haven't already, please read the O2 info at the link below.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Don

Hi blacklab!

Thank you so much, I have not tried the Vitamin D regimen, I stated taking some today, and I will look up the plan, I really appreciate this constructive and healthy suggestion, bless you!

~

Hi AussieBrian!

Thank you kindly for your warm welcome, I really appreciate it! 

:)

~

Hi Bob Johnson!

Thank you so much for this great info on Olanzapine, I have never heard of it!

I really appreciate your kind extension of information, thank you!!!

~

Hi Linda_Howell!

Great idea on the regulator! I think I do have one, a turny knob thing, but that it maxes out at 15. Which I guess is why I haven't tried 25! lol. Good call! :)


Thank you so much! :)

~

Hi Skyhawk5 / Don!

My mask has no bag, and it has a few open holes over the nose. Thank you for the note on starting quickly.

I did look at the o2 page before but I think I need to study it again, because it's easy to get overwhelmed and miss important info the first time.

Thank you so much for providing the link to make it easy, that is really thoughtful and helpful!

~

Thank you all for your kind feedback and support!

:)

Hi Icepick
It's vital to have the correct mask for the oxygen to work. It must be a non-rebreather mask, and together with the high flow rate it should abort a bad CH in a few minutes.

Hi maz! Nice to meet you!

Thank you so much for your helpful advice. I do have a mask instead of a nasal cannula, though it does not have a bag.

Thank you so much, and I wish you a pain free day!

:)

Mine only goes up to 15 too, but it's been OK so far. But if you're desperate take the mask off, hold your nose, and suck the 02 straight from the tube.
Hope you get it sorted out soon.

Thank you Maz! That is great advice.

icepicksundae wrote on Jul 9^th, 2014 at 8:01pm:

I wish just one person I asked for help would live in my shoes for a day, and maybe they would take me more seriously when I ask for help.

We have lived in your shoes as we do get CH (or support someone with it). If only all medical students could experience a Kip 10 for a couple of minutes then they would all show a lot more understanding than many of them do at the moment. Then maybe the same for a few politicians and the funding $ would flow too.

Dear Mike NZ,

Thank you so much for your empathetic understanding, I am sorry that you and everyone here does actually understand, because I know it means you all live with this too.

So on the one hand I am deeply grieved that this pain is real, and that you all know it. And on the other hand, I am so grateful you all understand.

Wishing you all a pain free day!

Hi Icepick
I understand what it's like trying to get the meds when you need them. To get round the restrictions I "extend" my cycles a little, and continue to pick up the meds for a few weeks when I don't need them. That way you have a little stockpile to suppliment your supply when the time comes.

Do you already have heart problems, or are you just worried about it? If you don't have it already the injections would be safe, and believe me they are life changing. I urge you to try them if you can. They come in 6mg doses but most people find 3mg is plenty to abort CH. So,  they can be split (tampered with) to get extra doses.  There is a you tube clip of a guy showing how to do it. Google "cluster headache splitting injections". It's another way of making meds last longer, but don't tell your doctor or she may stop prescribing. I know you shouldn't do it but I learned long ago that help from the medical proffession is minimal, so we all do what we have to do to help ourselves. I personally have not split my injections that way - never needed to, but I wouldn't hesitate to try it if I did need to.

Yes, a kip 10 puts everything else into perspective doesn't it. Whenever I have any other illness / pain / accident, I always think to myself "hey, this is a walk in the park compared to CH",  and somehow it doesn't seem so bad.

Although CH is the worst thing you'll ever experience I still feel glad in a funny way to be here. I wouldn't want to miss being part of this community for the world, and I have friends all over the world now. I'm sure every one of us would be there in a heartbeat to help if we could. Keep coming back here just to talk or rant if you need to. Listening and understanding is what we do best.

Take care
Maz.

Dear Maz,

Thank you so much for your advice, I will ask my doc to try the sumatriptan injections.

Thank you so much for your compassionate words of understanding, it made a world of difference to me.

THANK YOU!!!

:)

Wishing you all pain free as far as the eye can see!

<3