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 : ;)

$2,000??!!  WOW!
So sorry to hear of your pain and now this price for possible relief....sheesh!
I'm sure you will be hearing from many here that swear by Imitrex. For me, it was a nightmare. The one and only time I tried it I discovered the hard way that I had a heart condition. It nearly killed me. Not trying to scare you. It's a rare condition I have.
But what that did was make me find alternative ways to get help. 1st and foremost...oxygen! Read the "Oxygen Info" on the left of the screen. O2 has given so many of us our lives back. Please look into it as soon as possible. It's fairly cheap, it works and there are NO side effects.
Many take Verapamil and Prednisone to keep the attacks at bay. These are also much cheaper. Read up on these here!
I take Kudzu Root and Taurine with great success. Others have as well. These can be purchased at a good vitamin store and are fairly inexpensive as well.
There are also several other prescription drugs that members here use with varying degrees of success.
I know it may all seem confusing but I'm just trying to make you aware that there are MANY alternatives to Imitrex injections. Read all you can here. Stay patient. Try new things. Eventually you will find relief that fits your budget. Sure hope that time comes for you sooner rather than later!!! Read, read, read!!!
Welcome!

Oxygen

Something that you might want to consider, which a lot of us do with great success, is use O2 a la the "oxygen info" link on the left (if it shows up in your forum view), and use Imitrex injections as your back up only if the O2 fails, or if you can't get to the O2.

Then in order to cut the cost and side effect risk of your Imitrex injection doses in HALF, you simply follow the guidelines in the "imitrex tip" on the left.

This approach will hopefully bring the expense of this CH beast WAY down.

Of course if you get on a good preventative, whether med or herb or RC seeds, etc., you'll be using that much less imitrex.

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

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

$2,000??!!  WOW! So sorry to hear of your pain and now this price for possible relief....sheesh! I'm sure you will be hearing from many here that swear by Imitrex. For me, it was a nightmare. The one and only time I tried it I discovered the hard way that I had a heart condition. It nearly killed me. Not trying to scare you. It's a rare condition I have. But what that did was make me find alternative ways to get help. 1st and foremost...oxygen! Read the "Oxygen Info" on the left of the screen. O2 has given so many of us our lives back. Please look into it as soon as possible. It's fairly cheap, it works and there are NO side effects. Many take Verapamil and Prednisone to keep the attacks at bay. These are also much cheaper. Read up on these here! I take Kudzu Root and Taurine with great success. Others have as well. These can be purchased at a good vitamin store and are fairly inexpensive as well. There are also several other prescription drugs that members here use with varying degrees of success. I know it may all seem confusing but I'm just trying to make you aware that there are MANY alternatives to Imitrex injections. Read all you can here. Stay patient. Try new things. Eventually you will find relief that fits your budget. Sure hope that time comes for you sooner rather than later!!! Read, read, read!!! Welcome!

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

jon019 wrote on Nov 13^th, 2009 at 8:17pm:

Weatherman wrote on Nov 13th, 2009 at 6:49pm: $2,000??!!  WOW! So sorry to hear of your pain and now this price for possible relief....sheesh! I'm sure you will be hearing from many here that swear by Imitrex. For me, it was a nightmare. The one and only time I tried it I discovered the hard way that I had a heart condition. It nearly killed me. Not trying to scare you. It's a rare condition I have. But what that did was make me find alternative ways to get help. 1st and foremost...oxygen! Read the "Oxygen Info" on the left of the screen. O2 has given so many of us our lives back. Please look into it as soon as possible. It's fairly cheap, it works and there are NO side effects. Many take Verapamil and Prednisone to keep the attacks at bay. These are also much cheaper. Read up on these here! I take Kudzu Root and Taurine with great success. Others have as well. These can be purchased at a good vitamin store and are fairly inexpensive as well. There are also several other prescription drugs that members here use with varying degrees of success. I know it may all seem confusing but I'm just trying to make you aware that there are MANY alternatives to Imitrex injections. Read all you can here. Stay patient. Try new things. Eventually you will find relief that fits your budget. Sure hope that time comes for you sooner rather than later!!! Read, read, read!!! Welcome! 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

Very kind of you to say Jon, thanks!

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.

Thank you to everyone for your help and support. I have always been in relitivly good health (although I can't spell) and this has just been crazy. The costs of being able to sleep and get up to go to work is something I didn't expect and to think that other people have been going through this kind of pain is comforting even if my heart had hoped that no one should have to. Thank You Thank You Thank You!!!

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.

Hi Jay
   you must get Oxygen if you can...It works for most.

Also if you can't afford that med,,,ask your doc for Zomig nasal....It works fine, and it is $190. here in TN.   Also you can get on their site, and get a coupon for $35. off.   These are one shot nasal sprays. 6 per box. and they work.   To make them go farther, I spray this into the corner of a baggie, and using the head of a PIN...I take half of this, and put it under my tongue...works in 5 min or less. 

Sorry you have to be having such trouble, but glad you found us here. ;)          good luck    lorac

Sweden - get on the waiting list:
% of Swedish patients who received treatment within 3 months:
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Hey Void,

I have to agree about the American (healthcare system) sucking, heck the wife and I now have to pay $1,200 a month (!) for insurance with a high deductible, the price ever dramatically rising, and with coverage that is lousy in some regards. Forget more than a few imitrex injections a month. We had to fight to get that coverage if you can imagine such a thing, and we may lose it, joining the 48 million people currently uninsured in the country who are s**t outa luck.

Meanwhile it is still routine for a CH sufferer here to have to wait months to get an appointment with a headache specialist.

But I suppose this sort of subject, as related as it is, may be better off in general posts (?), because it invites heated political controversy, what with the sort of comments I've just made in reply, after seeing Bob P pasting in materials from a right wing "think tank" website fiercely opposed to american health reform.

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.

Quote:

after seeing Bob P pasting in materials from a right wing "think tank" website fiercely opposed to american health reform.

Does that make the numbers wrong?

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!

Bob P wrote on Nov 15^th, 2009 at 2:06pm:

Quote: after seeing Bob P pasting in materials from a right wing "think tank" website fiercely opposed to american health reform. Does that make the numbers wrong?

Not sure. Can't automatically trust info from opponents of US health reform who have gone hysterical with claims of "Obama death panels" etc.

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 :) :)

Quote:

and hard on your heart

Been a while since I looked at this but this may be wrong.  Cafergot is a non-specific vasoconstrictor, that is it constricts the blood vessels throughout the entire body.  Imitrex is more specific to cranial blood vessels, constricting mainly the vessels in the noggin.  So cafergot may be harder on your heart than trex.

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.

Bob P wrote on Nov 16^th, 2009 at 5:56pm:

Quote: and hard on your heart Been a while since I looked at this but this may be wrong.  Cafergot is a non-specific vasoconstrictor, that is it constricts the blood vessels throughout the entire body.  Imitrex is more specific to cranial blood vessels, constricting mainly the vessels in the noggin.  So cafergot may be harder on your heart than trex.

I know they say it targets only the blood vessels in the brain,  but after an injection,  there is no way that it isnt affecting other areas.  I can feel it travel through my body and one by one, areas start seizing up,  heart races like crazy, etc.  I know you are right about the cafergot targeting the whole body, but it doesnt feel like my whole body is shaking etc from it.

Christine   ::)

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.

Bob P wrote on Nov 16^th, 2009 at 5:56pm:

Quote: and hard on your heart Been a while since I looked at this but this may be wrong.  Cafergot is a non-specific vasoconstrictor, that is it constricts the blood vessels throughout the entire body.  Imitrex is more specific to cranial blood vessels, constricting mainly the vessels in the noggin.  So cafergot may be harder on your heart than trex.

I'm not sure that a real K10 isn't rough on my heart....

Marc

Quote:

I'm not sure that a real K10 isn't rough on my heart.... Marc

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

Bob P wrote on Nov 24^th, 2009 at 7:27am:

Quote: I'm not sure that a real K10 isn't rough on my heart.... Marc Ditto that.  Had one attack last cluster, on my hands & knees, entire body dripping sweat, couldn't move, wondering when the ticker would quit.

I'm only 23, I want these to go away before I get old and start:
a) worrying about my heart during a cluster hit
b) start calling my heart my ticker!

I'm happy the US is doing something to reform their healthcare system, its plain that it could be better.

I live in Canada, I'm pretty happy with the way things are run up here!  I might have to wait an extra week to see a doctor for an appointment, but I've always had everything I've need and FREE or CHEAP! 

True North Strong and Free !

Personally I feel great bodily stress when experiencing an unabated CH attack but am lucky enough to have never felt a side effect from Imitrex.

Then there's the common diminished brain function immediately following an full blown attack - that doesn't seem like a particularly healthy sign!


Martin wrote on Nov 24^th, 2009 at 10:22am:

I'm only 23, I want these to go away before I get old and start: a) worrying about my heart during a cluster hit b) start calling my heart my ticker!

Oh you Canadian wisenheimers!!  :D

Quote:

I'm only 23, I want these to go away before I get old and start: a) worrying about my heart during a cluster hit b) start calling my heart my ticker!

I'm 59 and it seems mine have stopped.  Guess you only have about 25 years to go.  The past 39 years has been a long haul!

Bob P wrote on Nov 24^th, 2009 at 1:13pm:

I'm 59 and it seems mine have stopped.  Guess you only have about 25 years to go.  The past 39 years has been a long haul!

25 years? thats way too many.  wait, 59 - 23 = 36.
so I have to wait 36 years if I stop when you do? fml

56 and CH's are still going full blast. Can't wait until I get old.......

Yup, 62 here and still goin strong...a doc told me when I was in my late 40's that a lot of men grow out of CH in their late 50's.  I'm wondrin what part of late 50's my beast don't understand....

Dallas Denny

Quote:

25 years? thats way too many.  wait, 59 - 23 = 36.

See, you can look forward to your math skills deteriorating along with your ticker.

Just think, most of the old timers on the MB went through many years of CH before triptans were invented or O2 recognized as an ablortive.  There just wasn't much choice but to hurt.

That's a very good point, Bob P.

I'm very thankful for everyone who have suffered before me; through their pain they brought us hope and understanding of clusters.