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New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hello From Pa.
(Message started by: GingerS224 on Dec 15th, 2005, 11:40am)

Title: Hello From Pa.
Post by GingerS224 on Dec 15th, 2005, 11:40am
Just a little Hello from a newbie.  My name is Ginger and I've suffered with cluster headaches for almost 5 years now.  

All I know is the pain I feel with a cluster is more intense than the pain I felt giving birth to my children, which for a woman is saying Alot.   [smiley=laugh.gif]  

I am on daily medication and take shots when I feel a cluster coming on, that is when I have the shots to take.  They are quite expensive and I have no insurance so my Neurologist has been supplying me with the shots.  

I have felt rather alone in my suffering with them and was very glad to find this forum.  I am looking forward to speaking with other sufferers and the occasional shoulder to cry on after a particularily bad cluster.  I would of course return the shoulder for whom ever would need it.

Nice to meet you all and Here's to a Cluster Free Day I pray!

Sincerely,
GingerS224 - newbie

Title: Re: Hello From Pa.
Post by MJ on Dec 15th, 2005, 12:17pm
Welcome Ginger.

Your alone no more.

Title: Re: Hello From Pa.
Post by RichardN on Dec 15th, 2005, 3:28pm
Welcome Ginger

 You've hit the motherlode of CH info, caring and sharing.

 And . . . . here, you'll meet many people all of whom know and share (or have shared) your pain.

 One of my favortie mottos on this board is, "Nothing works for everyone, but SOMETHING works for everyone" . . .  and here you might get a line on the "something" that works for you.  And, you never know, YOU might be the one to help those here who haven't found their "something" yet.

 Welcome to Clusterville . . .

  Be Safe,   PFDANs

     Richard

Title: Re: Hello From Pa.
Post by marlinsfan on Dec 15th, 2005, 7:55pm
Welcome, Ginger. Tell us a bit more. What daily med are you on.? Do you get hits during the day or mostly at night? Are you episodic or chronic? The more you share, the more we can try to help.
PF wishes.
Jose

Title: Re: Hello From Pa.
Post by Kris_in_SJ on Dec 15th, 2005, 8:19pm
Welcome Ginger,

Sorry you had to find us, but glad you did.

It sounds like you have a really understanding neuro.  I'm assuming your injections are Imitrex, and we all know how expensive they are.  The fact that he/she is supplying you proves that understanding.

There is no better place than here to learn about the latest treatments and therapies, and to receive support from others who know your pain.

There is a great program that Gator told me about - I'm sorry I can't find the link now - Bridges to Access is the program.  It's run by the company that makes Imitrex and covers the cost of the drug for uninsured, diagnosed patients.  

Perhaps he'll come along.  In the meantime, I'll search the archives for it.  It could be a great help in the event your neuro runs out of free samples.  Meantime - read, read, read!  The sooner you learn and take charge of your disease, the sooner you'll find ways of coping with it.

Hugs,

Kris

Title: Re: Hello From Pa.
Post by Jasmyn on Dec 16th, 2005, 2:46am
Welcome to the family Ginger, sorry about the pain you'll have to cope with.

It is true, here you will never feel alone again with this affliction.  Support, info and unity is what this site is about.

We are an abnormal family with normal going-ons but this is the best place you could have found to deal with CH better.

PF wishes to you.
Jas

Title: Re: Hello From Pa.
Post by burnt-toast on Dec 16th, 2005, 10:33am
You don't have to feel alone anymore.  Folks here understand what you are enduring.  Support is only a few keyboard strokes away - we'll be glad to help when we can.

Welcome aboard.

Tom


Title: Re: Hello From Pa.
Post by Bob_Johnson on Dec 16th, 2005, 1:24pm
If you are near Philly there is a first rate headache clinic at Jefferson.

Print this and show your doc. Some of us are getting excellent results and much lower per dose cost compared to Imitrex.

1: 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: Hello From Pa.
Post by GingerS224 on Dec 19th, 2005, 10:00am
Thank you all for the warm welcome!

Yes the shots I take are Imitrex and am on a daily dose of Verapamil which I may need to have up'd again ugh...dr. gave me 14 shots a little over a month ago, was supposed to last about 2-3 mo. and I am almost out already.  Think my Neurologist was being psychic at my last visit and had said something about them increasing...I didn't think so at the time but the last mo. has been Hell.   My CH is chronic and as for a day or night CH I get Both, they started as night time ones and progressed into both day and night time.  I was getting them several times a day every day before I finally went in and got diagnosed, I was petrified that it was something really aweful like a tumor or something and waited way to long to go in to get diagnosed.  

I hope I answered all Q's lol   If I seem to be a little knowledgable on Neurology it's mainly because my son has suffered from Migraines since he was two years old.  He gets the migraines and I get the CH's.  Oh what a pair we make LOL

I also have another Q for you all ... Has anyone else here noticed a coralation with Berometric Preasure changes and thier headaches ?  

Again Thank you all for the warm welcome!

Here's Hoping for a Pain Free Day for all !!!

Ging...


Title: Re: Hello From Pa.
Post by jon019 on Dec 19th, 2005, 11:16am
Hi Ginger,

Glad you found ch.com. You won't be disappointed.

Re your question about barometric pressure. Oh yeah,
that's a big one for me. First noticed it when I realized every time I went to the O2 shop for a refill I had to put on my shades. The weather had changed and I was "in cycle",( higher baro pressure seems to be worse than lower). Don't think its the sunshine or warm weather itself because summer time is no more or no less likely to include cycles (for me).

Regards

Jon

Title: Re: Hello From Pa.
Post by r_headache on Dec 19th, 2005, 3:04pm
barometric pressure???? YEP! I'm better at telling the upcomming weather then the guy on the news.  When a front is blowing thru I get the worst hits.  

I wonder if anyone has ever done a study on that.

Welcome to your new family, the information and friends that you get here will keep you sane.

Rick



Title: Re: Hello From Pa.
Post by Mattchew on Dec 19th, 2005, 6:33pm
Hello Ginger, and welcome.



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