I was FINALLY diagnosed with CH today after a couple of months of things like "brain tumor" and "Multiple Sclarosis" being thrown around. If my agonizing pain wasn't enough to keep me walking the dog crying at 4 in the morning. So, even though I am happy to know what this evil is, now I went to fill my scrips for imotrex. I am 27, live in NJ, have an appartment, earn enough to support myself, and as a hair stylist, am lucky to get any health coverage. For generic, with insurance, almost $2000.00. Can't help thinking that at least with MS I could have gotten medicaid! Any sugestions??? PS. I am so glad to be able to talk with other people who wont tell me to take a motrin and put an Ice pack on my head, as we know, this is different :

Oxygen

Check out Glaxo Klines website, I think the program is called " Bridge to Access " or something similar to that.  I was in a position where I could not afford " Trex " several years ago and they provided me with a voucher that allowed me to purchase several injections for $25 if I remember correctly.

Dallas Denny

Weatherman wrote on Nov 13^th, 2009 at 6:49pm:


WOW yourself Weatherman...that was an excellent post! Concise yet full of info, empathy, and compassion .....reminded me of the many similar I have received here from these remarkable brothers and sisters of clusterville.

Yes, welcome Jay...you just saw the best reason for being here....

Best,

Jon

IF you are having attacks  while working or in other situations where O2 use is not possible, you might consider using this med. Numberof us have found it as effective as Imitrex, pill form has obvious advantages, and, on a per dose cost basis, is much less expensive.
=========

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.

I am sorry to have to be this person, because I am a born capitalist. I believe more strongly in the invisible hand than I believe in any god.

Then I realised I had CH - and gee - look.. we have general public healthcare in Sweden. Whereas the land of liberty to the west has nothing.

So how do you do it. How do you reconciliate your values of unhindered capitalism wiht a medical conditions that requires funding an entire life?

I dunno. I've realised the American system sucks after reading  all the posts of people being without treatment. Still I am not to fond of the Swedish sytem where some old wanker stubs a toe and manages to get healthcare for $20000.

I hope Obama has an ace up his sleeve for people that are in a bad spot in USA. I hope Sweden somehow removes the stubbed-toers.

Sweden - get on the waiting list:
% of Swedish patients who received treatment within 3 months:
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Jay, the Zomig and Zyprexa that Bob Johnson and Carol, er, sorry..."Lorac"  brought up sound like more affordable alternatives alright.

Imitrex is the only one of these that I have personal experience with, and I stick with it just because it's been a guaranteed CH hit killer for me. I'm loathe to do any "risky" experimentation with another abortive, as I go to great lengths to avoid getting stuck holding the Kip 9 bag with a failed abort.

With Zyprexa it does sound like there could also be the huge advantage of how easy it would be to take at work. You could have it right in your pocket and if you felt an attack coming on, without skipping a beat, you could take one with a water bottle you would keep handy right there.  The client probably wouldn't even notice.

I'm very fortunate to have extremely good insurance. I could get Imitrex cheap I'm sure. So I know I'm lucky.
But because of a heart condition I can't use it or Verapamil and Prednisone for that matter. So I found an alternative prevent attack plan in Kudzu, Taurine and Melatonin that has worked very well for me.

Ironically, I am convinced that my last 2 cycles were much lighter than usual and farther apart because I was NOT taking harsh prescription drugs. I have no scientific proof but for the first time in over 25 years of the beast, cycles are taking years off, hits are MUCH less frequent and generally less severe when I am in cycle. I did have one VERY rough day during my latest cycle but all in all, it was very managable. When on prescription drugs, my cycles were more frequent with more frequent and MUCH harder hits.

I know, I know, what works for some does nothing for others but I hope this information will reach people that maybe can't tolerate or afford some of these hard core prescription drugs. There are alternatives and in the long run, if you're like me, those aternatives may be better for you anyway with better results.

Being one of the fortunate ones with great insurance, I vote to let Sweden keep their plan.    Seriously, good luck and pain free wishes everyone!

Cafergot worked wonders for me and it is dirt cheap.  I have tried every drug out there and it is a great preventative.  Personally, i would rather prevent than treat.  Also, since its loaded with caffiene,  I would need to take melatonin to be able to sleep while on it.

Imitrex is a great drug,  but its soo expensive, and hard on your heart, that you should save it for awful hits that O2 wont get rid of, and you should also try the imitrex tip on the side, where you only use half a dose at once.  I never had it not work just as good using this approach.

Good luck
Christine

I just attended a training for work in which Zyprexa was touted as a wonder drug with side effects that make it less desirable to prescribe, and this is for intended use, i.e schizophrenia and bipolar disease!  Diabetes, significant weight gain - these two come to mind.  The imitrix tip at the left is good for starters, as is O2 (which is GREAT!).  This is something that you can discuss with your neurologist... 

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Zyprexa may cause you to have high blood sugar (hyperglycemia). Symptoms include increased thirst, loss of appetite, increased urination, nausea, vomiting, drowsiness, dry skin, and dry mouth.

there is lots of good advice here. I know when I had my insurance, 18 injections (considered to be a 3 month supply) was over $2000, I had to pay 20%, or max $200. Of course as we all know 18 injections is NOT a 3 month supply. So, I refilled the prescription as soon as it was allowed to stock up on injections.

Now I have no insurance, and just signed up for bridges to access program. They are supposed to be sending me injections.....if you have no insurance, and low income, you may qualify check it out.

Also, get the 02 tank.

Quote:

Ditto that.  Had one attack last cluster, on my hands & knees, entire body dripping sweat, couldn't move, wondering when the ticker would quit.