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Genisis

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Broke down and made the call
May 30^th, 2013 at 10:05pm

...called my Doctor today and told her I needed to get back on Verap as "the beast" has returned in force and I cant take it any longer. She called me a RX for Verap 240 ER as that is what I took the last time I had a cycle and seemed to work within a week or so. Now, all I need to do is go in and see her tomorrow for an appointment. Been a year since Ive been in to see her. QUESTION: Do any of you think that STAYING on Verap even after the cycler breaks is something I should request? A way to keep "the beast" chained up in the cage so to speak.

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Guiseppi

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Re: Broke down and made the call
Reply #1 - May 30^th, 2013 at 10:23pm

I think most go off their prevents when they're off cycle just to get ride of the side effects. After 2 weeks of no attacks I would wean off my lithium to see if beasty was gone. That being said, follow this link to the medications section of this board and read the post

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Broke down and made the call Reply #2 - May 31^st, 2013 at 8:13am I agree with Joe (I almost always agree with Joe) that most go off the verap when out of cycle. The only reason I can think you might stay on is if your doc believes there is a positive result in your BP that should be maintained. Blessings. lance
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Guiseppi

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Re: Broke down and made the call
Reply #3 - May 31^st, 2013 at 8:21am

wimsey1 wrote on May 31^st, 2013 at 8:13am:

I agree with Joe (I almost always agree with Joe) that most go off the verap when out of cycle. The only reason I can think you might stay on is if your doc believes there is a positive result in your BP that should be maintained. Blessings. lance

ALMOST always??? ALMOST always??? Devastated I am... Tongue

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Broke down and made the call Reply #4 - May 31^st, 2013 at 9:31am Folks who have very short cycles--brief internvals between cycles--may stay on 100%. Rationale is that the time to start, build-up to effectivness is longer than the interval between cycles, therefore, stay on to have protection working all the time.
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Genisis

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Re: Broke down and made the call
Reply #5 - May 31^st, 2013 at 11:53pm

*UPDATE*

Went to the Doc today and she walked in and said "They are back again huh?" She knew what I was there for and I even asked her for a blocker. I said "Imatrex Injections?" She said "Yeah, they have injectable Imatrex. You want a script for that as well?" Needless to say I didnt hesitate in saying the word "Yes!" Now here is the problem. I cant afford $70 per injection!! Shocked

No insurance is a real bitch.... Undecided

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Guiseppi

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Re: Broke down and made the call
Reply #6 - Jun 1^st, 2013 at 8:54am

Oxygen saved me from the agony of imitrex co-pay. It aborts almost as fast, and no where near the cost.

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This link will show you how to get set up with welding oxygen, if insurance won't cover your 02 this is a REAL inexpensive way to go:

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Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Bob Johnson

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Re: Broke down and made the call
Reply #7 - Jun 1^st, 2013 at 9:09am

A number of drug mfg. have discount programs: ask your druggist.

Print this and drop on your doc. Cost per dose is quite reasonable, it's very effective, and safe to use if you don't need several doses per day. It became my only abortive after reading this report.
====
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]

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Bob Johnson

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TJMBeav

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Re: Broke down and made the call
Reply #8 - Jun 1^st, 2013 at 11:16am

I have found a supply of injections thru a Canadian drug store. You do need a script to have them fill it, and technically it is not legal - but they are not enforcing the law for drugs like Imetrix. If you order in quantities of 24 shots the cost is about $24 per. I stocked up last year after my last cycle finished. So far the Verapamil at 360mg per day has worked - haven't had a bad one since last July when I did the pred taper and got on the Verap. Have twice tried to go off the verap - but almost immediately started getting shadows, and had one short episode of medium hits (maybe 5-6) - so went back up in dosage.

Lately have been getting some pretty strong shadows, and might have had a hit two days ago - started in he center of my head but quickly went to the right side - started to feel the tooth pain and my eyes teared up, but it only lasted about 15 minutes. Anyways - enough for me to fill my last script up North for 24 more shots. That will give me quite an arsenal if the damn things come back hard. My biggest fear is the Verap stops working. I also have a store of Prednizone in case I want to do a taper and kick up the Verap.

No we are not suppose to push certain drugstores - but if you want the link to the one I use let me know. $24 ain't cheap - but it is a lot cheaper than what you can get in the US. Helps that I have a very caring and cooperative NP - and that her main Nurse has a husband who suffers from CH's. She does not have any issue with sending the script to Canada.

Good luck. Full disclosure - I consider the Imetrix injection to be magic. It has never failed me. No luck for me with either O2 or the D3. Verap seems to be working so far....but I have a nasty feeling that the damn things are coming back. Not the environment either - last cycle I was working a project in the wet NW. I am now in bum frick nowhere Nevada - high desert and no rain.

Good luck

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repguy2020

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Re: Broke down and made the call
Reply #9 - Jul 1^st, 2013 at 5:25am

I must be one of the few who need to stay on my preventative year-round. If I miss a dose of Verapamil, the Beast rears his head and gives me a good blast as a reminder. I'm tender for a few days after a kip 9er or two. Right now, cycle means nothing, except for the shadows, once or four times a day in season. In the past couple of years, though I've been getting back to the full-blown attacks, Verapamil or not. The doc increased my dose and I've been OK since, but I'm still wary but I'm hopeful I'll be mostly pain free for a while.

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Broke down and made the call Reply #10 - Jul 1^st, 2013 at 6:38am If any one is considering Olanzapine to treat there CH's, be carefull,causes weight gain and sleepiness. Hoppy.
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Mike NZ

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Oxygen rocks! D3 too!

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Re: Broke down and made the call
Reply #11 - Jul 1^st, 2013 at 5:32pm

Hoppy wrote on Jul 1^st, 2013 at 6:38am:

If any one is considering Olanzapine to treat there CH's,
be carefull,causes weight gain and sleepiness.

Life in general seems to cause weight gain and sleepiness!

As with any medication it is a case of balancing out the positive and negative effects of the drug in deciding if it should be used.

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