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        New Message Board Archives >> 2003 Posts >> Another new perosn
        
(Message started by: Jarrett on Sep 17^th, 2003, 11:33am)

Title: Another new perosn
Post by Jarrett on Sep 17^th, 2003, 11:33am

Found the site in the middle of a cluster and have continued dealing with for several weeks. Have has CH for 25 +years in a yearly pattern which went away for five years.

This is a fabulous site! Many thanks for all the new tips on oxygen and how to stretch Imitrex, which have been lifesavers. I have also looked up your comments on short term disability, which I believe I am eligible for, since the pattern of headaches has changed to a more severe one.

I have a few questions for anyone who might care to give opinions. I have an appointment with a neurologist, by which time this cluster should be past. Should I go anyway and what help can he give after the demon has returned to his cave for a while? Second, does anyone know what it might mean to have the pattern of headaches change. Previously, CH came once a day and lasted 1.5 hours, with all the regular symptoms, responsive to some therapies, not others. Now, its several times a day and every 2-3 nites it's waking me every hour and a half. I think that predisone may work, but wonder what the change in pattern means.

Finally,a suggestion for a CH patron saint. Do any old timers remember the old Jimmy Cagney movie "White Heat?'" He plays a gangster, Cody Jarrett who suffers from searing headaches: "Ma, its like a buzz-saw in my head." Rent it if you havent seen it and esp if you like Cagney. Iit's an over the top performance made late in his gangster playing career, and he decided to play the lead as a psycho. he headaches add to the, ahem, aura.
The movie ends with the great quote: "Made it Ma; top of the world!!." Which is how I feel when the Imitrex kicks in.

best to all,

Jarrett

Title: Re: Another new perosn
Post by Donna on Sep 17^th, 2003, 12:00pm

Welcome into the family.

Many of our sufferers take Verapimil as a preventative, and some take it on a continuous basis, while some take it only when expecting a cycle.

Of course, not all meds work for everyone, thus the importance of reading what the menu on the left has to offer, as well as the OUCH site which also has valuable info.

By all means, keep the appointment with your doc. only be sure to print the meds info and share it with him/her. Go prepared and take an active part in your treatment.

Good luck.......and be sure to keep the family posted. We'll be waiting for you.

Title: Re: Another new perosn
Post by 5-string on Sep 17^th, 2003, 12:00pm

Hey Jarrett,
Welcome,sorry your head hurts.
I'm in the middle of going back and forth with my disability claim form. I'll let you know how it turns out.
Through the advice of some of these wonderful people here my doctor put "severe migraines" in the what's wrong with you box.
For me, my headaches changed "Big time" this year. I've had them for 4 years now and this was the first year they stuck around(july 20) and still present.Until last week kept me home with the phone turned off. >:(
This sight is an oasis for me.
Look around and get comfortable. We know what you're going through.These things suck.
...Mark..

Title: Re: Another new perosn
Post by 9erfan on Sep 17^th, 2003, 12:32pm

Welcome to clusterville Jarrett. Sorry you have to be with us. We're a pretty dysfunctional group but hopefully you'll learn a lot here.

I would recommend keeping your appt with the neuro. He may suggest putting you on verapamil. Or you can get a scrip for O2 to be ready for the next cycle.

As far as patterns, I've had these damn h/a's for 18 years and the patterns were continuously changing when I was episodic. Unlike most of the people here, I never knew when mine were coming each year. I think everyone is different. These things are so unpredictable, just when you think you've got them figured out they change again. The beast is a bastard!

Stick around and keep us updated on your progress with the DR.

Virginia

Title: Re: Another new perosn
Post by BobG on Sep 17^th, 2003, 1:04pm

Welcome to the board Jarrett.

About the neurologist appointment.......
Yes, keep it even if your cluster cycle is over.

Reason 1. You will have a doctor to go to if and when the clusters start again. Your name will already be on file.

Reason 2. Tell the doctor that you are IN a cluster cycle. He doesn't know and can't test you to find out if you're lying. Get prescriptions for oxygen, an abortive like Imitrex and a preventative like verapamil. Fill the prescriptions. This will go into your file with the doctor and establish an record at the drug store.

Reason 3. If you getting attacks on the job or start getting them in the future your boss may think you're making it all up. With the records at the doctors office and the drug store you have proof of your illness.

Reason 4. If you boss still thinks you're lying to him and fires you, you can sue him for a million dollars and give half of it to me. ;D