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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Zyprexa: My experience
        
(Message started by: E-Double on Oct 21^st, 2006, 5:34pm)

Title: Zyprexa: My experience
Post by E-Double on Oct 21^st, 2006, 5:34pm

I wrote this for the OUCH newsletter several months ago:

One eventually comes to grips with having CH. Whether you are episodic or chronic you know that you will have ups and downs. The trick is to live your life and battle [as we call it] the best way you know how, using what ever tricks of the trade that work for you. What happens when nothing works. Nothing!!
This “cycle” started without me having a diagnosis, just the knowledge of “here we go again.” Having become accustomed to two brief cycles in the fall and spring, only at night, since 1994, I knew that something was really wrong and that it was not allergies nor sinus infection. This occurred to me when my usual one nightly attack became several attacks throughout the day and night and none of the old tricks were showing any efficacy. Nor could I hide my attacks since they were not just in the middle of the night. People knew, mainly my wife, that something was just not right.
While I was writhing in agony, my wife empowered herself a bit by hitting the internet and researching all of my symptoms. CH.com appeared and we read together as we realized I was not insane.
As I waited for an appointment with a neurologist, I tried to obtain as much information as I could regarding what I would surely be diagnosed with.
“Demand Oxygen”
“Need to get Imitrexâ”
“You might consider Zyprexa…………”
“Triptans will kill it”
“You need to be on a preventative medication…..”
“What the hell is Zomigâ?” I thought. It sounded like a Heavy Metal band.
I finally got to the doctor who was lucky to witness me doing the dance. She diagnosed me on the spot and gave me a Zomigâ. Seven minutes later I was smiling for the first time in many weeks.
I was also placed on Depakote and Prednisone.
The attacks got worse and meds were changed along with several doctors.
It is extremely difficult to find a doctor willing to work with you, have knowledge of Cluster Headache and have a good bedside manner, which for me was necessary for I was filled with dread, and anxiety and just wanted to crawl into a shell. This was not me! I really liked the doctor who diagnosed me but she was in the midst of closing her practice and I had lucked out that she was a friend of a friend.

I finally found a doctor that appeared to be knowledgeable and compassionate.
My meds were changed to Verapamil and I was provided Oxygen and Imitrexâ injection.
My attacks continued to be random. They did not have a pattern and would occur sometimes six to 8 times a day. The doctor put me on Topamax which to say the least was a nightmare for me and is not worth any more words. Things got worse. I was using substantial amounts of medication but seemed to always get by.
In March 2005 I joined the club. I became a Chronic Cluster Headache sufferer. Though I had not had reprieve in a years time, I had come to grips with the condition. Though dreadful, I was no longer missing time from work yet I was coming close to burning out again. My doctor at this point appeared to get frustrated with me and my knowledge. I was challenging him at times and wanted to increase medications that he was not comfortable with despite the research suggesting it was beneficial and my health being otherwise perfect.
My wife came with me to an appointment and while we waited I had a severe attack. She rushed to get my Oxygen tank and as I huffed trying to abort, the doctor came in looked on in terror and walked out. I then gave myself an injection since the Oxygen was not working. When he came back I was finally coming out of cluster and he was extremely apologetic. The man was nearly in tears yet, when I asked to try something else, he suggested that we have done all we can. He essentially gave up on me.
A few weeks later I was lucky to get an appointment to The New England Center for Headaches (NECH). I had previously participated in clinical trials and was able to become a patient. On April 18th, 2005 I had my first appointment with Dr. Sheftell. He altered my medication according to the research and based upon my needs. The goal was to first stabilize my random attacks and attempt to decrease of course. Things would be great if for no other reason than finally being treated by one of the people who literally wrote the book.
It was April 20th and I had been having a really rough day and knew something was going on in my head. I had not had any full blown attacks but was prepared for a bad one.
While driving to a client’s house around noon I got hit like a ton of bricks. I pulled over and aborted with Oxygen. I drove a few more miles then WHACK, I had another attack which I was able to abort with oxygen. It was brought down to a point where there was still pain lingering but I could function. I continued towards my client’s house and got slammed with another. This was now the third attack in an hour. This one could not be broken!

Title: Re: Zyprexa: My experience
Post by E-Double on Oct 21^st, 2006, 5:35pm

Continued:

I drained an entire E tank and used 2 shots of Imitrexâ and was still battling. My headache was approaching three hours. I finally called a “cluster buddy” of mine who convinced me to call NECH and to go to the hospital. This is something I had never let myself do because of the horror stories I have heard from so many about being looked at as drug seekers or just treated poorly. My attack was now approaching the four hour mark and was just not breaking so I stupidly drove myself to the hospital with one eye shut and head cocked to the side.
I got there and as soon as I said Cluster Headache, they brought me to my own room and essentially asked me “What do you want?!” I told them that I couldn’t take DHE nor more Triptans and that oxygen was not working. I begged to knock me out. It took four shots of Dilaudid of which I had breakthrough HA and an IV of Decadron to finally break my attacks.
I was in the hospital for an additional seven hours. Then I needed the rest of the week to recover from narcotic withdrawal. This was the worst it had ever been.
Two weeks later I had an appointment at NECH with Dr. Sheftell. We discussed my ordeal and he mentioned that he had spoken with Dr. Rozen from MHNI regarding CH that was non responsive to meds. They came up with using Olanzapine, which is also known as Zyprexa.
I was going to try this as an abortive medication. I could use it instead of Imitrex, with Imitrex before or after, it did not matter. I could even use it prior to attempting sleep as a preventative medication. I mentioned to him that nearly a year ago someone from CH.com had mentioned this to me as an abortive medication he had used and found it to be as effective as Imitrex.
I did not have to wait long to try it. A bad attack was quickly brewing that evening and I took a Zyprexa. Within seven minutes I was fine. This was completely new to me. I was completely pain free. Even after a successfully aborted cluster using Oxygen or Imitrex, I have never been completely pain free. I usually feel drained and just plain gross. With the Zyprexa I felt fine. There were no nasty side effects. It worked as fast as anything I have tried.
I hate taking medication like most of us do but at this time in my life it is a necessary evil. Zyprexa has been a godsend for me and for the most part remains more effective than oxygen and Imitrex. It is also substantially less expensive than Triptans which for many is a cost prohibitive.
There are times when nothing works but for the most part life is more tolerable now.
At least I have another “weapon” at my disposal in my battle against CH.

Title: Re: Zyprexa: My experience
Post by eddie on Oct 21^st, 2006, 5:55pm

thank you E double
i take it everyday for '' bi polar disorder'' 15mg
i also take lexapro in the morning
i can say i have been pain free since i have been
on this cocktail. thank you for reply E double
eddie ;;D

Title: Re: Zyprexa: My experience
Post by Linda_Howell on Oct 21^st, 2006, 9:45pm

Thank you for posting this Eric...and for those who want to know more:

http://www.drugs.com/Zyprexa/index.html

Title: Re: Zyprexa: My experience
Post by FramCire on Oct 22^nd, 2006, 1:00am

It is also been a lifesaver for me at 5mg when getting hit. 2 little pills and I sleep throught he night.

My Drs dont like the side effects but they say using when needed to abort should be Ok.

I havent' experienced ANY side effects.

Title: Re: Zyprexa: My experience
Post by nani on Oct 22^nd, 2006, 1:42am

on 10/21/06 at 17:55:54, eddie wrote:

eddie, are you saying that it's working as a prevent for you?

Is 15 mgs a day considered a psyche dose, or are they higher, eric?

Title: Re: Zyprexa: My experience
Post by E-Double on Oct 22^nd, 2006, 5:19am

I have only had to take more than 2.5 to abort once.
I am not sure of the dosage used for bi-polar disorder

Title: Re: Zyprexa: My experience
Post by BB on Oct 22^nd, 2006, 7:03am

Hello E2

Thank you very very much for your post. Its really helpful.

So do you use the dissolvable tablet or the normal tablet ? And do you use them regularly twice a day or only as needed as abortive?

Thanks again,

Annette

Title: Re: Zyprexa: My experience
Post by eddie on Oct 22^nd, 2006, 7:16am

on 10/22/06 at 01:42:01, nani wrote:

eddie, are you saying that it's working as a prevent for you?

Is 15 mgs a day considered a psyche dose, or are they higher, eric?

i guess that is what im saying, or im crazy
all i know it works for me as a preventive

Title: Re: Zyprexa: My experience
Post by E-Double on Oct 22^nd, 2006, 7:33am

When used I split a regular tablet.

I do not take any meds and have only taken a jab of trex 2x and zyprexa 3x since March.

I soley rely on Oxygen these days.

This a personal choice yet I only advocate for people finding a way to be PF by any means necessary that they and their family deem appropriate.

Title: Re: Zyprexa: My experience
Post by FramCire on Oct 22^nd, 2006, 9:14am

on 10/22/06 at 07:33:56, E-Double wrote:

BTW, for those who have a doctor who is friendly and trusting, they MIGHT be able to get you a sample of Zyprexa to try to abort. The problem lies in that many doctors might not ant to put you on it if they haven't heard of this use for it.

Zyprexa is batting 1.000 as an abortive and I only use it when all else fails (or the hit is too much for me). I am a bigger guy (weight certainly not stature) than E-Dub and I do have to take 2x2.5 pills for it to work.

Title: Re: Zyprexa: My experience
Post by nani on Oct 22^nd, 2006, 11:33am

on 10/22/06 at 07:16:11, eddie wrote:

i guess that is what im saying, or im crazy
all i know it works for me as a preventive

Well, I know you're not crazy, sweetie. I asked because this is the first report I've seen where it's acted as a prevent. I'm glad it's working for you! :-*

Title: Re: Zyprexa: My experience
Post by BB on Oct 22^nd, 2006, 11:39am

The normal dose for schizophrenia or bipolar is between 5 to 20 mg per day, mostly 10 mg per day.

Its so interesting that Zyprexa tablet can work to abort a CH hit within 7 mins , thats really fast for a tablet.

Considering Imitrex or Zomig tablet takes up to 1 hr to work.

Annette

Title: Re: Zyprexa: My experience
Post by eddie on Oct 22^nd, 2006, 11:48am

i may be a little crazy in a good way
i do know i sleep good, no night hits.
i have been on this med cocktail for about
8 months. i was on another med remeron.
i took it for 3 months. i have been pain free from ch
for 8 months.
:D ;;D

Title: Re: Zyprexa: My experience
Post by BB on Oct 22^nd, 2006, 12:38pm

Hi Eddie,

How long did you take this combination to be painfree?

Did you still get hit at the start of the regime?

Thank you very much for sharing your experience.

Best wishes to you.

Annette

Title: Re: Zyprexa: My experience
Post by eddie on Oct 22^nd, 2006, 1:28pm

soon as i took it zyprexa and remeron made me sleep good.
the doc dropped the remeron after 3 months. i didnt even
notice being off of remeron.i also was taking lexapro in the
morning. so im just taking lexapro and zyprexa. im going
to get blood work monday and see my Doc. update
pending
eddie

Title: Re: Zyprexa: My experience
Post by Karla on Oct 22^nd, 2006, 2:20pm

My drs wont let me take it because it has a high weight gain factor. I am so glad it works for you.

Title: Re: Zyprexa: My experience
Post by Bob_Johnson on Oct 22^nd, 2006, 3:06pm

This is the abstract which got some of us going on it:

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.

Title: Re: Zyprexa: My experience
Post by andrewjb on Oct 22^nd, 2006, 6:01pm

:). bump.

Title: Re: Zyprexa: My experience
Post by BB on Nov 5^th, 2006, 2:45am

Daniel has been using zyprexa 10 mg for abortive for 1 week now, although it hasnt abort the whole attack on its own but it has shorten the length of the attack and allowing the oxygen to work much better.

So now he has another arsenal up his sleeves and doesnt have to use as much imigran( trex ) which is great!

Thank you very much E2 :-* for sharing your experience so that people can discuss this option with their doctors and give it a go.

Painfree wishes to all.

Annette

Title: Re: Zyprexa: My experience
Post by Bill_G. on Nov 5^th, 2006, 7:02am

E2,
Wife used to be on that long time ago for another condition. Once I can print out a report for my Dr. I am going to see him with the report in hand.
Thanks so much,
Bill

Title: Re: Zyprexa: My experience
Post by bothofus on Nov 5^th, 2006, 7:23am

Interesting, but haven't I heard the commercials (for a law firm) that zyprexa has either caused or made worse diabetes for patients?
Hope I'm wrong, kinda considering this myself.
Carl
PS: I joined OUCH yesterday

Title: Re: Zyprexa: My experience
Post by BB on Nov 12^th, 2006, 9:04pm

An update for people who may be interested , Daniel managed to abort the last 2 hits with Zyprexa tablet 10 mg in less than 10 mins.

Also as E2 said, he didnt get the yuk, washed out feeling as with triptan injections.

Its still early days but it sure looks promising.

Thanks Eric for posting the information.

Painfree wishes to all.

Annette

Title: Re: Zyprexa: My experience
Post by FramCire on Nov 13^th, 2006, 6:00pm

on 11/05/06 at 07:23:05, bothofus wrote:

Zyprexa has a TON of bad side effects but my doctors think there is nothing to worry about if only used occasionally to abort. I believe diabetes was one of the potential problems for LONG TERM USE. I am not a doctor, this is what I recall my doctor telling me.

You can get 2.5 mg pills of it and only 2 (5mg) work for me to abort an attack. It has been almost 100% in aborting attacks for me and I usually fall asleep right afterwards for the night.

Title: Re: Zyprexa: My experience
Post by bothofus on Nov 13^th, 2006, 6:56pm

Glad to hear it's working for ya. I was just adding my 2 cents worth, and wanted ya'll to know that I heard about the diabetes thing. Both my parents had diabetes so I'm a little more alert to that.

Carl

Title: Re: Zyprexa: My experience
Post by UN-solved on Nov 13^th, 2006, 10:21pm

I'm sure glad it's helping some of us, but it didn't help me @ all. I hope it continues to help you forever.

There's still nothing that will help us all :-/ But stories like this should be told so that others may gain a new tool in the battle with the beast.

UNsolved