I am looking for any input on zyprexa as I am going to the nero tomorrow. Between my allergies and drug resistant CH, I am left with lithium and DHE as the only drugs that work good.

Basically I am looking for bad reactions and allergic reactions. I will see if the nero has any samples because I have been through the 30 day wasted supply routine too many times and cannot afford to waste resources on a chance that it might work. Imitrex does not work well for me and as I am looking for work while experiencing daytime hits, I am in need of a standby besides oxygen.

Input greatly appreciated,

Roland. :)
8-)

Rolo,


I've never tried it.  I got sticker shock when I looked it up, so I never asked my Dr. for a script for it.


That said:

Zyprexa is a good  drug for those that cannot take the Triptans, so my friend from here tried it.  It DID seem to make the hits less intense.  She only had 3 tablets to try it out, so that may not have been a very good trial.

   Here may be a good site to read.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Thanks Linda, with me it’s an arrow in the dark most times. I’m sure the doc will give me what I want because he is my back nero. I’m really glad I went to the HA specialist though… he may have saved me from pain killer blues. Now that I’m savvy enough at this CH animal, I know what to expect and what may be the best course of action. I am going in mainly for my C6-7 ruptured disk and nerve problems that are getting worse. I am switching back because I want to be with the all around guy (all in one) because the HA sp. Only does HA.

Roland. ;)

Quote:

he may have saved me from pain killer blues.

Oh,  Rolo...he sounds like my kind of Dr.  I wish I could be of more help to you  regarding the Zyprexa but it does sound to me like it is a viable thing to try  and I hope you do. From what I understand...you will know with-in a few days if it does or doesn't work.   I also hope you let us know how it goes.

   I am crossing my fingers and toes, praying and hoping beyond hope that this can help you. You are such a great guy and you SOooo  deserve a break.    :-*

   

Roland,

Forgive me if you've already discussed this, but have you tried Olanzapine?

Bob Johnson has been posting some very good things about this for a very long time. Seems like a good option for many folks to try.

Marc

Mark,

No, I have not tried it yet. I’ll have to see how many samples I can get. I have had bad experiences with antidepressants in the past but I heard that you only use them for aborts so that may work. I have a tendency to start breaking out in rashes and hives after a week or two on most drugs.

Thx, Roland. ;)

You gain gain lots of weight on this drug.

Karla wrote on Dec 12^th, 2008 at 1:23am:

You gain gain lots of weight on this drug.

Karla,

Were you taking it regularly or just for aborts? I have gained 10 Lbs in the last yer on the lithium and don’t need any more padding.

Thanks for your input.

Roland.  :)

Zyprexa is the brand name for olanzapine. We have had good reports on effectivenness. Personally, I consistently get rapid relief in 20-min. Compared to the triptans, the per dose cost is reasonable. A sample from your doc will, within 1-2 doses, indicate whether it works for you.

Don't need to worry about weight gain: this is an issue for people who, with psychiatric disorders, are on it daily for long periods.
======
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.



--------------------------------------------------------------------------------

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.

Bob,

As usual, good clear information. I just wish I had paid better attention to the brand name!

I thank you for all the valuable info that you research and post.

Marc

Well I did get a script for 5 mg Zyprexa , they didn’t have any samples.

Linda he hands em out like candy. I didn’t even get through telling him I needed Vicodin and he was already writing one out for 60 pills (for my back and neck)… Thats about a year supply for me.

Rolo.  :)

Looking forward to hearing how it works for you!

Yes, please do let us know!  It just started popping seemingly everywhere I look the past week or two, and I'd love to know!  (It's like when you learn a new word and all of a sudden you see it everywhere  ;D ).  ...I don't know if it's something Gary's neuro has on his list or not, but wanted to ask him about it.

Sorry for asking a stupid question - but this would be used for aborts, right?

Laurie

Well I woke up to the beast and took one as I had to give Jeanne a ride to work. I have an appointment this morning at 10 am. On the drive home the sun was in my eyes and could still feel some residual pain but no flair up yet. Seems like it’s working. I will update more as I see how well it works.

PF’s, Rolo… ;)

This Zyprexa sure does make you sleep, I was so tired that I slept all afternoon until I woke at 7:30 with a hit (annoyance hit). No hits for 12 hours though, experiment to continue…

Rolo… [smiley=sleep.gif]

Hey there, glad to hear the zyprexa might work for you...I, too, am drug resistant, I'll ask my doc tomorrow about trying it.  How expensive is it? (no insurance.)

Ok, this Zyprexa seems to be working far better that I would have expected. I slept through the night for the first time in 2 months with no 1 am hit. I am also much less depressed today! I have not felt this good for a long time. I must be psychotic if this stuff is working?

I did not feel weird like the antidepressants do to me. The only issue was the sleepiness form taking it in the morning so I will try it at dinner time to see how I react to it in the evening when I can drop into the sack without a problem. I know it is meant to be an abortive treatment but as I am chronic I may have to take it daily anyway. I always get hit between 5-8 pm without fail so I will try administering it at 4 pm for a few days strait to nail it down so to say.

I never expected to get a good antidepressant effect from it so this is a big plus. If I don’t get a allergic reaction from it after daily use, I may have a good new tool with the lithium that works cross my fingers… I am just loving the feeling good thing because as a daily chronic depression is a given for me.

If you read this Ray, call your nero and see if you can try it.

PFW,W,W,W’s to all…!!!

Roland. :) :) :) :) :) 8-)

BTW; my HA nero would not let me try it??? Go figure!?! >:(

Awesome!  I'm so happy for you!  I'm going to ask my doc right now!

UnderTheRadar wrote on Dec 18^th, 2008 at 12:21am:

Hey there, glad to hear the zyprexa might work for you...I, too, am drug resistant, I'll ask my doc tomorrow about trying it.  How expensive is it? (no insurance.)

I can not answer the price question; I pay $10 for regular scripts and 25 for name brand so it was $25… I suspect as Linda said that it is some pricy $hit…

Roland. ;)

Sounds great!
I'll have to ask my doc about it.

Well nevermind...I asked my doc about it today, and he gave me the laundry list of nasty side effects that can accompany it.  He said you need continual monitoring by a psychiatrist and it can even cause some neurological problems (like twitching and spasms) for LIFE, even if you stop taking it.   :P

UnderTheRadar wrote on Dec 18^th, 2008 at 8:28pm:

He said you need continual monitoring by a psychiatrist and it can even cause some neurological problems (like twitching and spasms) for LIFE, even if you stop taking it.   :P

Why would you need monitoring by a psychiatrist????  While zyprexa is an anti psychotic,  I am not clear what a psych would do to monitor negative symptoms from the med that a good neurologist couldn't do???   I have worked with many psychiatrist over the years professionally when I worked in a Mental Health clinic and in my opinion providing treatment to persistantly mental ill patients,  my neurologist can run circles around many psychiatrists that I know , in terms of symptom management....   just my opinion.

Part of the reason I fired my first neuro was because he didn't know much about clusters  and WASN"T WILLING TO REALLY LEARN even when info was presented.   Prescribed the wrong meds at the wrong dosages and gave me 02 but not high enough flow rate.   If I had stuck with him I would have continued to feel hopeless and probably ended up feeling like nothing worked in terms of meds.

A good neuro is priceless...

Kelly

The only thing I notice is the sleepiness. I took it at 4 pm and crashed at 6:30 till 8:30 so I will have to try it later tomorrow. It does seem to make a huge difference so far but time will tell of course.

I am only taking 5mg and mental patients take up to 40mg per day (estimated by twice daily and 20mg pill as largest manufactured). The warning mainly concerns elderly patients with preexisting Alzheimer’s or Parkinson’s disease

From the Zyprexa at RxList main page:

                                        WARNING

Increased Mortality in Elderly Patients with Dementia-Related Psychosis-
Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death. Analyses of seventeen placebo-controlled trials (modal duration of 10 weeks), largely in patients taking atypical antipsychotic drugs, revealed a risk of death in drug-treated patients of between 1.6 to 1.7 times the risk of death in placebo-treated patients. Over the course of a typical 10-week controlled trial, the rate of death in drug-treated patients was about 4.5%, compared to a rate of about 2.6% in the placebo group. Although the causes of death were varied, most of the deaths appeared to be either cardiovascular (e.g., heart failure, sudden death) or infectious (e.g., pneumonia) in nature. Observational studies suggest that, similar to atypical antipsychotic drugs, treatment with conventional antipsychotic drugs may increase mortality. The extent to which the findings of increased mortality in observational studies may be attributed to the antipsychotic drug as opposed to some characteristic(s) of the patients is not clear. ZYPREXA (olanzapine) is not approved for the treatment of patients with dementia-related psychosis (see WARNINGS).
.

I’m not worried about the tiny dose and it seems to have helped my cognitive powers and ambition overall. If your doc wont let you try new and emerging treatments you will never see any benefit from it!

PFD&N to all…

Roland. ;)

wrote on Dec 18^th, 2008 at 11:07pm:

If you doc wont let you try new and emerging treatments you will never see any benefit from it! PFD&N to all… Roland. ;)

Exactly... I have read so many posts by folks who have said that nothing has worked for them in the past, only to find out that they either weren't prescribed the right kinds of medications , had too low of dosages to be effective for that patient,  prescribed the wrong flow rate for 02,  etc etc....   Just because a doc says they've treated CH patients before doesn't mean they are treating them effectively.   Some doctors act as if they can be educated or seem like they are open, but if they refuse to consider what has worked and what the research supports ,  that's my cue to find someone else who is willing to work with me.

Glad its working for you roland.... Definitely will keep that on my list.


Kelly

I think Gary may need a new Doc and I'm getting really bummed.  He wouldn't prescribe Zyprexia.  Not "yet" anyway.    >:(

Roland, I am SO GLAD to hear the great news!!!!!!!!!!!!!!!!!!!!!!!  AND SLEEP?  That is truly fabulous.

PFDAN!

Laurie

Oh - and I want to add I'm sending out HUGE vibes that you're not allergic to it!!!!!!!!!!!!!!!!!!

Laurie

Hey Kelly,

The worst part of all this is that my HA specialist would not prescribe it so I went back to my general / surgical neurologist… As I said earlier in the thread, he gives out scripts like candy so that worked to my advantage…

Roland.  :)

Whoa!!  did I ever say I was against seeing a neuro???   Okay, let me expand what my doc said-  that it can cause changes to your personality and your mental state, days or even months after starting treatment with it, and for THAT he would prefer I be under the regular care of a psychiatrist who is trained to look for that kind of thing, rather than just a GP.
And monitoring treatment with anti-psychotic medication is what Psychiatrists DO.

I guess if your neuro has training in psychiatry too, then groovy.  Jeez, people are getting too damned sensitive around here.

UnderTheRadar wrote on Dec 19^th, 2008 at 5:26pm:

Whoa!!  did I ever say I was against seeing a neuro???   I guess if your neuro has training in psychiatry too, then groovy.  Jeez, people are getting too damned sensitive around here.

Never thought you did say you were against seeing a neuro.  My questioning came from your GP's logic that only a psychiatrist could monitor zyprexa when prescribed for CH, which in my opinion is not true .   Thats it... nothing more nothing less.


Kelly

Roland-

Glad you got the help you needed and persistance certainly pays off-  Hoping this continues to get you some needed pain free time.   It is certainly a med I am keeping in mind and I appreciate your sharing your successes. :)


Kelly

It's cool, Mezza- I should have said "psychiatrist OR neuro"...he has nothing against neuros- it's just that I don't have insurance, but I do have access to psychiatrists here at my college's student health center.

He just doesn't want to touch the stuff if there is an alternative; but for right now, since I seem to be coming out of the cycle (CROSSING FINGERS!!)  he's just concerned with me getting rested and getting my health back.  We agreed that when I'm rested up after the X-mas break, then we'll start looking into preventatives and other options.  

and I'll have to ask him if he knows how low the dosage would be; he might not realize that it's not the same that they give psychotics.  But, uh, do drop us a line if you go "bat shit crazy" on us Roland, m'kay?   ;) ;D :D

It really is working... I have not even touched the O2 today! More info as I go…

Roland. ;)

UnderTheRadar wrote on Dec 20^th, 2008 at 1:13am:

do drop us a line if you go "bat shit crazy" on us Roland, m'kay?   ;) ;D :D

No worries Paige, it's all good!... ;)

No visit again last night… I have had a few precursors but nothing has gone to fruition so far. I took it at 10pm last night and slept like a rock on a feather pillow.

I’m getting ready for my MRI this morning and will see how I do in the tunnel, I am slightly closter phobic but I don’t anticipate any problems. Hopefully I will just nod off for it. I hope the new machines are quieter than the ones I have had in the past.

LYG, and PFW’s to all…

Roland. ;)

This Zyprexa has really made a huge difference for me. I am taking just one 5mg per day and the only SE is a slight increase in tinnitus (10 kHz buzz in my ears lasting 5-10 min) No big deal to me. The sleepiness is a given on this stuff.

My nero wrote the script for 1 5mg X 3 day, then 2 per day there after. I just had to relay this because I don’t want to imply that I am playing with my doses (using as a prevent because I get hit every day on the norm). I always wean down on doses but never up above what’s written.

PFW’s all…

Roland. [smiley=jammin.gif]

Rolo, sorry, I'm confused.  Doc wrote scrip for 1 5mg three times a day.  It's supposed to be used as an abort?  Or a prevent?  And you're getting results taking just one 5mg a day?  At night?  

Wasn't clear to me whether it's an abort or prevent, and wanted to make sure I understood dose correctly.

...but really, I'm just glad it's working.  Hope MRI went OK.

Laurie

Laurie,

One 5mg pill per day for first 3 days then two 5mg pill per day after first 3 days.

Roland. ;)

wrote on Dec 21^st, 2008 at 8:06pm:

Laurie, One 5mg pill per day for first 3 days then two 5mg pill per day after first 3 days. Roland. ;)

Is this an abortive or preventive? :-?
:-*

wrote on Dec 21^st, 2008 at 8:18pm:

Is this an abortive or preventive? :-? :-*

Ment to be an abortive, OK'ed by my nero to use as a prevent.

wrote on Dec 21^st, 2008 at 8:45pm:

wrote on Dec 21st, 2008 at 8:18pm: Is this an abortive or preventive? :-? :-* Ment to be an abortive, OK'ed by my nero to use as a prevent.

 Thanks,  thats what I was wondering.   A doctor (nero) once perscribed Imitrex tabs as a preventive to me,  not a good idea I think thats what made me chronic.  Anyway Rolo glad it is helping but be  safe and research it,  I sure you did but it worries me to see abortives being used as prevents.
           Phil 8-)

Yeah, when I'm not nauseous I'm going to research it more, too...so, for how long are you supposed to be taking it?  your whole cycle, or "forever" as a preventative?  

UnderTheRadar wrote on Dec 21^st, 2008 at 9:49pm:

I'm going to research it more, too...so, for how long are you supposed to be taking it?  your whole cycle, or "forever" as a preventative?

I am (and have been for 5 years) a daily chronic with 1 - 10 hits per day. I got a precursor at 5pm and it was gone in 1 min on the O2.

Phil, it is prescribed for psychotics as a daily med at a much higher dose than the 5mg I am taking. I have only noticed the sleepiness effect so far. [smiley=sleep.gif] I give it a big  [smiley=thumbup.gif] [smiley=thumbup.gif] ........


Roland. [smiley=sayyes.gif]

Add; And I can drink BEER now... [smiley=beer.gif] [smiley=me&mb.gif]

Did you have a beer today?   8-)

Laurie

Interesting…………………..
Bob Johnson has been posting about this for several years and I don’t recall a whole lot of feedback from folks until this.

Bob – thanks once again for all that you do. And Merry Christmas too!

Marc

Garys_Girl wrote on Dec 22^nd, 2008 at 6:42pm:

Did you have a beer today?   8-) Laurie

No, I'm saving the rest of the 12 pack for my father-in-law on Christmas eve. I did however have 6 on sat and 6 on sun with no event. The Zyprexa is defiantly working great so far. I only wish I was privy to it earlier. ::)

Roland. ;)

PS; I'm starting to feel like a supporter more than victim now! 8-)

Marc wrote on Dec 22^nd, 2008 at 7:40pm:

Interesting………………….. Bob Johnson has been posting about this for several years and I don’t recall a whole lot of feedback from folks until this.

Both Bob and Jonny have posted on it in the past as an abortive, but no one has said anything about using it as a preventive. I feel drugs like lithium and Zyprexa come with a stigma attached to them because of there main use as antipsychotic or bipolar treatment.

The main problem as I see it is that the neurologists just don’t want to delve into that realm.

Roland. ;)

Add; GSK would pull their slush perks if they started going off the main stream... ::)

As of now:

450mg lithium, 150mg every 8 hours
5mg Zyrexa once a day


I have had two hits tonight:

1 at 6pm, K2 and gone in 2 min O2 @ 25lpm flow     (wifes rath)
1 at 11pm, K4 and gone in 5 min O2 at 25lpm flow    (Mom on the phone)


I notice that when I do get close to a hit, the O2 works 50% better than before.

This is only me and by no means applicable directly to how others will respond.

You guy’s know I aint pullin ya leg.

PF&LI,

Roland. 8-)

Well, K4 at 4am.. 10 min O2 @ 25 LPM... No beer tonight. Just dumb luck I guess. Hard to see the laptop keyboard in the BR... He He Ha Ha.

Rolo. [smiley=hammer.gif]

Message #46 implies using Xyprexa routinely (daily) as a preventive. Dr. Rozen, who first reported the effectiveness of Xyprexa, has tested it for prevention and found it not effective.

Suggest you restrict its use as an abortive, it's original application.

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.



--------------------------------------------------------------------------------

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.

Yes, you may be right Bob, My Nero wrote the script as daily use but it seemed to make the beast build up pressure and the balloon popped last night. Starting at me 1am time and proceeded to rip me a new ass all night long. Continuous K8 after K8 hourly until noon today, I made the mistake of using a half vile of Trex and paid for it by not being able to use the DHE. I am just wiped out still from the agony of it all tonight.

The results of my MRI weren't great, but not real bad ether. I have cervical vertebra arthritic degeneration; the radiology tech said it looked like a 65 yr old neck film. My Nero is putting me on a solumedrol taper to see if the disks will fluff up and if not I'm sure he will be talking about fusion at C6-7. It's pretty much what I figured it would be.

Well I will be HA free for a couple weeks eating everything in sight as the steroids do that to me real bad. I have the shank ham thawing and hope I will be able to join the festivities tomorrow evening.

Marry Christmas to all and a PF new year!

Roland. [smiley=hammer.gif]

Sorry for the strong language to those it offends but F%CK that totally sucks.  

But then how is it supposed to work as an abortive?  You get a hit and you take 5mg?  For each hit a day?  So up to 50 60mg a day is OK?  Or you just get to abort one or two hits?

DAMN DAMN DAMN DAMN DAMN.  Sorry the beast got pissed.

Bummer about the neck.  Gary's got four fused discs and just always has problems with his back.  (But he has his master jump wings, so he's jumped out of an airplane 385 times.   :o  Obviously his knees are shot too).

You gonna do the surgery?  Or hope the steroids help and get by without it for as long as possible?

I was so pleased and SO hoped for continued good news.

[smiley=hug.gif]

Laurie

Thanks for the vibes Laurie!

I did not pick up my soluumedrol yet partially because I hate steroids, and also to keep me form eating all the food. :)

So I got nailed right at dinner time and ended up eating a ton of pie (pecan, banana cream, cherry)... Because the mother-in-law is well, you know, an awesome pie replicating wonder!!!

I skipped a few days and tried the olanzapine at 4pm when I felt it coming on, and it did not work but O2 keep's its champ stats. ;)

I fear like most of the drugs I have tried have done the same. It’s like my immune system figures out how to break them down, and remembers quite well also. I just hope the lithium keeps working… been 14 months so far and the lith is still keeping me K8 or below. I guess you just have to be thankful for what you get...

PFW’s to all,

Roland. 8-)