Hello everyone, No offense to anyone but after 5 yrs. of being cluster-free i'm sorry to say - I'm back!  I've been living with this horrible affliction for 35 yrs. Usually I have 2-3 yrs. relief, but this time it was 5 whole, long years and I honestly hoped & prayed the end was here, only to have a week of shadows last week and now this week they are getting stronger & stronger.  I have tried a few different drugs in the past, demerol, naproxin, verapamil and probably more, I just can't remember. The only drug i've ever had any luck with was Cafergot, if taken at the immediate onset. I've heard all the stories of how horrible Cafergot is for you, I personally don't care because of the fact that I've always been lucky enough to have my episodes disappear after a month, so I figure it's either suicide or taking the Cafergot. Anyhow, i've used it as a preventative before as well, which works well for me. I know the beast will return every night when I fall asleep, so I take 2 Cafergot before bedtime and I'm headache free all night. The only downside to this is eventually they don't work as well anymore and I think have a rebound effect so I'm getting more headaches throughout the day.....eventually though they just disappear as fast as they came(thank God!).

Anyhow, it is always a comfort to know there are others like me (even though I wouldn't wish these on anybody), I don't feel so misunderstood when I peek in here and read others posts. No doctor, specialist or best friend in the world can understand what "clusters" are like...only someone who has gone through this eternal hell can!

I would like to try some of the newer medications, but find they are so expensive. Our family is on a budget, we have two kids to raise, so i can't spend a lot of money on drugs. My doctor gave me some samples of Maxalt 10 but told me they are costly. Does anybody know how expensive they are, and how well they work?  I have 4 tablets and have been trying to save them for a really bad episode which I haven't had so far, but know will come shortly.

Kelly >:( :'(

Hey Kelly,

Welcome back...

If you're looking for the biggest bang for the buck option to keep the beast on the run, oxygen therapy is hard to beat at $1.50 to $2.00 per abort using the larger home size oxygen cylinders (M/H/K).

Take care,

V/R, Batch

To bring you up to date on current therapies, you will find it helpful to print out both of these articles.

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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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The cost issue is tough. Ask you doc for a sample of this one. On a per dose basis it is less than other abortives and a number of us have found it quite effective. You will know within one or two uses 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.



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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.

I use oxygen to abort but still use cafergot also. Oxygen will abort an attack for me in as little as 6 minutes. But they come back 10-20 minutes later. Now I pop a cafergot, and fire off the 02. 02 beats it down, cafergot will buy me up to 12 hours pain free time.

You don't mention any prevents. I take lithium while on cycle, 1200 mg a day, it blocks 70-80% of my attacks. Might be worth talking to the doc as it's a very inexpensive med also.

As far as the oxygen, when I was having to buy my own, it was $4.25 a month to rent the tank, and $11.00 each refill. A tank would handle up to 6 attacks so like Batch said, it's a cheap fix for those of us having to watch the medical spending.

Hang in there.

Joe

Wow, you guys are all so helpful. Well, i certainly have some reading ahead of me with all these informative sites to check out...I love reading though and will pour over everything I can to get some relief from this hell. I am going to check out the oxygen as it seems to most people seem to have a lot of luck with this. I'm going to mention lithium as well and see what she says, although i've found my episodes never last long enough for these long-term drugs to start working. Typically they last 3-4 weeks and then thats it for another 3-5 yrs.  I'm also going to mention Olanzapine, I've never heard of this one

Thx so much!!! ;).