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        New Message Board Archives >> Jan-Mar 2004 >> supporter of victim
        
(Message started by: carries on Jan 23rd, 2004, 12:01pm)
Title: supporter of victim
Post by carries on Jan 23rd, 2004, 12:01pm
i live with a victim of what you all call "the monster", he is classified as cronic and until just before this christmas i did not truly understand these headaches. i heard him talk about them but until i saw them i did not understand. i guess like everyone else we felt alone in this ordeal. i have to say that finding this web site is one of the best things that has happened for us. right now he is trying to find a doctor that will help him, most of them tell him they can not fit him in for 2 weeks. TWO WEEKS!!!! Meanwhile i watch him suffer threw this knowing that there is something out there that will help  him, but he can not get because no doctor is willing to see him. Any rate, thanks for listening and i would love to hear from you all to help us through this nightmare.
carrie
Title: Re: supporter of victim
Post by thomas on Jan 23rd, 2004, 12:04pm
Look to the left, click on the link for the OUCH website, go there and find a doc in your area....... best of luck to you and your loved one.
Title: Re: supporter of victim
Post by BlueMeanie on Jan 23rd, 2004, 12:24pm
Welcome Carrie,

Has he already been treated in the past for CH's ? If so, if there is something that works for him, you don't need to wait. Call the nurse and have her relay the message to the doc. My doc always fills a prescription over the phone as long as I'm waiting for an appointment. Not sure what meds he's tried. Read as much as you can on this site for meds that may possibly work.

PF Vibes coming your way.
Title: Re: supporter of victim
Post by Svenn on Jan 23rd, 2004, 12:25pm
WELCOME TO CLUSTERVILLE

Here you are among friends that really understand what this hell is all about


Think Thomas said it all
thnx Thomas

Taking the liberty to add what kind of coctail that has helped me.Ask the doc about this:

Verapamil Retard 120mgX5-7/daily during cycle      
Oxygene alone at 10ltm for at least 15 minutes on  a nonbreathermask or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few seconds after that you are almost painfree      
Prednisolone in high doze for 10 days 80mg      
then over a 3 weeks periode step down like 60-40-30-20-10-5mg every 3dh day
Tapering down the verap im on full dozage 7 days after my last hit,then over the next 5 weeks im down to 1/daily.
after 1 week on Verap retard 120mgX1 and still no hits i can quit that to


The very best from Svenn
Title: Re: supporter of victim
Post by carries on Jan 23rd, 2004, 12:26pm
thank you for replying, we tried calling his doctor but the man has retired. he used verapimil in the past
Title: Re: supporter of victim
Post by PatFan on Jan 23rd, 2004, 12:30pm
If you haven't already, look seriously in obtaining O2. The doc can prescribe diff things to try as preventatives but if you can't get in to see the doc you're forced to cope the best way you can. The moment I was able to abort a CH w/ O2 after 16 yrs of suffering I cried and cried because I finally found a way to end the misery, even if it was only for an hour before the next one. Check the internet for O2 tanks, regulators, etc. I won't advise to go to the local welding shop to get o2, but I know of people who do it with no problems. I think the main difference (if I'm wrong- someone correct me) is the inspections of the tanks for welding is a little less thorough than the medical ones. but the purity of the O2 is the same. O2 RULES...
I'm in Albuquerque, NM and have tanks running out my butt which are covered by insurance (thank God), so if you're ever in ABQ and in pain, I'd be glad to lend a helping hand.....
Title: Re: supporter of victim
Post by Carl_D on Jan 23rd, 2004, 1:35pm
Welcome to Clusterheadaches.com - the supporter's support group.

Peace,
Carl D
Title: Re: supporter of victim
Post by RichardN on Jan 23rd, 2004, 1:38pm
 02 and Verapamil worked for me

 I copied a great deal of info off the site, took it to my doc (at the time) and (loudly) demanded 02 and a script for Verapamil.  For over a year all tests produced no diagnosis.  I was taking ever-increasing doses of Attenelol (I don't think I ever read of anybody on this site using that.
 Also, alchohol was a definite trigger for me.
 Got the 02, Verapamil (now maintenance of 120 mg), quit drinking (AA shouldf have clusters - - once you realize a beer, shot of brandy or glass of wine will produce the devil, it's no prob to stop.
 WATER/WATER/WATER
  Been PF (from CHs) for a year now.  Don't have the HAs, still have the fear.

    PFDANs     Richard
Title: Re: supporter of victim
Post by Bob P on Jan 23rd, 2004, 1:59pm
When the doctor's office tells me it will 2 weeks until an appointment I tell them I won't be able to make that because I will have put a bullet in my head before then.  They usually manage to see me that very same day!
Title: Re: supporter of victim
Post by Carl_D on Jan 23rd, 2004, 2:20pm

on 01/23/04 at 13:59:42, Bob P wrote:
When the doctor's office tells me it will 2 weeks until an appointment I tell them I won't be able to make that because I will have put a bullet in my head before then.  They usually manage to see me that very same day!

Using the phrase "I'd rather be sucking on a 12 gauge than deal with this!" also works!  ;)
Sometimes Doc's just have to learn how desperate CH really is.

Peace,
Carl D
Title: Re: supporter of victim
Post by Jackie on Jan 23rd, 2004, 2:26pm
Welcome to the board, Carries.
There is a wealth of information here and on OUCH (button on the left).  Study and absorb as much as you can.  Sometimes when your clusterhead is having a hard time, you have to do the work and take the bull by the horns for him.

If you have questions...just ask.  There are kind and helpful people here with lots of knowledge.

Jacks 8)
Title: Re: supporter of victim
Post by cootie on Jan 24th, 2004, 1:18am
Howdy carries.......put yer thinkin cap on and get ready to learn a whole friggin lot on here and meet alot of new freinds that can help you........so don't be shy !! And listen up and print out. Good luck to ya with all this.........Pam thats rowin her boat straight ta bed rite now [smiley=sleep.gif]
Title: Re: supporter of victim
Post by Callico_Kid on Jan 24th, 2004, 1:37am
Welcome aboard!  I'm so glad you found us,  Yoiu will find some of the most caring compassionate friends here you will ever meet.

As others have said, check out the buttons to the left.  There is a lot of ideas for ways to cope until he can get some meds.  It's the pits when your doc retires and leaves you with no alternatives.  It is a good idea to print out some pertinant information and take it with you to the Dr.  A lot of Drs are not well versed on CH, but if you can find one who is open to learning he can be a real help.

Keep us posted, and have him get on board as well.

Jerry
Title: Re: supporter of victim
Post by Patrick_A on Jan 24th, 2004, 9:29am
28 years of suffering taught me a few things about CH's and Doctors. When you go to the Dr., You have to be the one who is educated, You have to be the one who demands certain treatments. Learn everything you can about CH, so that when your Dr. says he wants to try this or that, Tell him NO! I want THIS! And here is why!!! Bla bla bla!
If you are lucky, Your DR will know how to treat CH, but i'd say that is probably about a 10% chance of happening.
60mg taper of Prednisone, and 120mg twice a day of Verapamil stopped my cycle in its tracks. I learned of this treatment here at CH.com

Good luck, Patrick  :)
Title: Re: supporter of victim
Post by brad267 on Jan 24th, 2004, 10:40am
I agree with Patrick....  Sometimes the Doc is just there to write the scripts.  You've got to know what your game plan is going to be, and you've got to know all the medicines....

It will be hit and miss until you find the cocktail that works for you.  But know enough about the medicines, so that if the Doc wants to prescribe X, you can so NO, because of side effects Y and Z, etc....  It takes time....

I think the typical starting meds are:
-  Prednisone taper to unspin you back into control....
-  Verapamil, as a preventative, which takes 2-3 wks to kick in, and.....
-  O2 or Imitrex for aborting those that sneak through...

At the very least, can you raid his free samples until the appointment??

Hope everything works out!
Brad
Title: Re: supporter of victim
Post by don on Jan 24th, 2004, 10:49am
Try this

http://www.clusterheadaches.org/resources/meds.htm
Title: Re: supporter of victim
Post by Charlie on Jan 24th, 2004, 9:35pm
Welcome aboard and if you stick around you'll find good ideas about dealing with this horror. Here is a technique that was very helpful to me:

http://www.netsync.net/users/charlies/

This link is to a letter that is our best at describing Ch to others. It's welll worth copying:

"http://www.ouch-uk.org/ch/note_colleagues.cfm"

Charlie


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