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        New Message Board Archives >> Jul-Sep 2003 >> New here and suffering
        
(Message started by: TnT on Sep 3^rd, 2003, 10:00am)

Title: New here and suffering
Post by TnT on Sep 3^rd, 2003, 10:00am

Hi, I am the wife a cluster headache sufferer. My wonderful husband has gone almost two years with no attacks. They came back about a month ago. At this point he is so sick that even when he's not having an attack, he is drained , deppressed, and totally spent. All the descriptions I've read on the home page sound exactly like him. We have three children and they've all heard daddy crying and in so much pain from these. I feel so helpless and worried for him. He takes maxalt that usually relieves it within an hour, but that doesn't even seem to be working as well since he takes up to three a day. I just pray that they go away soon. We have been to the er and now we are fighting with our insurance who only wants to pay for 12 pills a month. I am grateful to find a place like this with other people who understand. Seems everyone we tell seems to think they are just bad headaches. I don't even like to call them headaches, it goes far beyond that. Any words of advice or encouragement are very welcome. Thanks, sad wife

Title: Re: New here and suffering
Post by Woobie on Sep 3^rd, 2003, 10:07am

Know how you feel...

Has he tried Oxygen??

read read read....

welcome home -
Tina

Title: Re: New here and suffering
Post by TnT on Sep 3^rd, 2003, 10:12am

no he hasn't , not even sure what that means. I'll look it up.

Title: Re: New here and suffering
Post by JDH on Sep 3^rd, 2003, 10:31am

check out this link for oxygen info.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
o2 has helped a LOT of us, please look into it.
It's cheaper than most meds and w/out side effects.

Jim

Title: Re: New here and suffering
Post by TnT on Sep 3^rd, 2003, 10:46am

I wonder what the likeliness of us taking this to our doctor and her prescribing it, or will she look at us like we are crazy? Does insurance usually pay for it? We had never heard of this therapy until this morning. Thanks so much for the info. He is so sick (no attack at the moment) that he doesn't even seem interested in his own treatment. That's ok, I'll be his spokesperson.

Title: Re: New here and suffering
Post by forgetfulnot on Sep 3^rd, 2003, 11:15am

Print this out and take it with you, if you haven't already found it:

http://www.maplefallswebdesign.com/misc/oxygen/oxygen1.htm

Lee

Title: Re: New here and suffering
Post by BillyJ. on Sep 3^rd, 2003, 11:44am

on 09/03/03 at 10:46:57, TnT wrote:

I wonder what the likeliness of us taking this to our doctor and her prescribing it, or will she look at us like we are crazy?

It depends on weather your doctor knows anything
about cluster headaches or not,if not you may want to
look for a cluster knowlegable doctor.
Here are a couple places to look-
http://www.clusterheadaches.org/doctors.htm#usa
http://www.achenet.org/physicians/

There are several abortives and preventatives,here are
just the most common/effective-
Abortives:
1.Imitrex injections;
a triptan, the most effective in its class-
http://www.rxlist.com/cgi/generic/sumitr.htm
2.100% Oxygen;
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Preventatives:
1.Verapamil; at higher than usual doses is the number one preventative med
http://www.rxlist.com/cgi/generic/sumitr.htm
2.Lithium;combined with Verapamil
http://www.rxlist.com/cgi/generic/lithium.htm
3.Prednisone;
Used as a short term abortive(two-three weeks for relief while a preventative
can start working)
http://www.rxlist.com/cgi/generic3/prednistab.htm
(If you have tried these and they didn't help,don't panic there are still options-
look here http://www.clusterheadaches.com/cgi-bin/meds.cgi )
Clusters are often misdiagnosed so check this out
just to be sure- http://www.clusterheadaches.com/quiz.html

There is a chatroom that many of us visit,there is usualy
someone there between 8 pm and 12 am eastern time dialy.
http://headachesupportgroups.com/echat44/public/index.html

It is very hard not to get discouraged/depressed when
fighting this beast.A good supporter(like you)can make
all the differance between giving up and surviving this.
I know its hard but try to remember that clusters WON'T
kill you! and it WILL end.
I am glad you are there for your husband,and we will
be here for you both.
Hang in there it DOES get better!
Billy

Title: Re: New here and suffering
Post by ave on Sep 3^rd, 2003, 11:58am

Also, TnT, there is a board especially for people like you, our supporters. Look at the top, and click Message Board topics. You'll find it.

We know that supporters have a rough time of it too, feeling so helpless, not being able to help the pain, trying to educate themselves to be better than their docs...

The supporters board will give you an opportunity to let your hair down, and the fellow feeling is stupendous.

Hang in there, girl.

Title: Re: New here and suffering
Post by Cooked Brain on Sep 3^rd, 2003, 1:03pm

sorry to read about you husbands CH TnT :(

welcome to the board! Do you think you can get him to write to the board himself? Do all the reading you can on the medications to the left and here: http://www.headachedrugs.com/archives/preventivemeds.html

If you have any questions at all post them right away!

hope you will both find some relief soon!

Title: Re: New here and suffering
Post by Miss_Deleny on Sep 3^rd, 2003, 1:22pm

I am so sorry to hear of your husbands pain. I too am a supporter of a sufferer. It is extremely hard on us supporters having to watch the one we love going through such pain, knowing that there isnt anything that we can do other than educate ourselves and be there for them when and if they need us.

My best advice to you is to read, read, read and read more on the sites that the left links go to. Learn everything you can about CH so that you can help your husband when he is not able to help himself.

Try and get your husband here on the boards to talk. That alone will help him alot knowing that he IS NOT alone when it comes to the pain he is feeling.

Print out pages upon pages of information to take with him/you to the Doc .. the more you know about it, the more you can help in getting him the right combinations of med to try and control this beast.

If your Doc knows nothing or very little about CH .. find one that does!

Wishing PFDaN's for your husband,

~April~

Title: Re: New here and suffering
Post by judyw on Sep 3^rd, 2003, 1:44pm

Welcome TnT...
Ditto to the suggestions already given...especially in trying to get your husband to join in reading and interacting with others who know his pain...Knowing he is not ALONE means a lot...You know where to find us if we can help...
judyw

Title: Re: New here and suffering
Post by River_Rat on Sep 3^rd, 2003, 2:33pm

^^^^^WOW!!! aint these people great!!^^^^^^^

I can't tell ya anything that the family hasn't already, but I can say welcome and hang in there, together we'll get them figured out!

LEE

Title: Re: New here and suffering
Post by ZAIRA on Sep 3^rd, 2003, 3:15pm

Hello TnT and welcome! READ, READ and READ.... there are a lot of information here.... sorry to hear about your husband. You must be strong, he needs your strength..... and it is not easy........ stay with us, Zaira :'(

Title: Re: New here and suffering
Post by Linda T on Sep 3^rd, 2003, 3:33pm

Hi TNT and welcome. Sorry about your hubby.

Just wanted to ditto what has already been said. It is very important that you find a doc/neuro who knows about ch (at least a little). I come from a very small town and I was not hopeful that any neuro in my parts would understand ch at all. I printed so much stuff from this site and brought it with me to my first appt. Whatever I had he had more. I was very lucky. So, print out whatever you can and take it with you. It may help.

Also, you (or hubby) needs to be very aggressive where treatment is concerned. Tell him/her that you MUST TRY *** (insert O2, verapamil, whatever). Don't give up. Your hubby should have an active role in whatever treatment program is prescribed. Don't back off. Go for it.

Good luck and keep us posted.

Wishing you all PFDAN always, Linda T

Title: Re: New here and suffering
Post by Charlie on Sep 3^rd, 2003, 3:50pm

Welcome and we all know the kind of pain and suffering that can be caused by this horror. Your difficulty in describing this to others is common and this link will be a great help to you. It's well worth copying:

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

This next link is for a technique from a neurologist that worked very well for me:

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

Charlie

Title: Re: New here and suffering
Post by toothpick on Sep 3^rd, 2003, 8:21pm

He has two things goinig for him a supporting wife and CH.com there is alot of good info here and great people.

Welcome and good luck

Russ

Title: Re: New here and suffering
Post by cootie on Sep 3^rd, 2003, 9:15pm

Hi TnT....how's things goin for ya now ? I'm also a supporter and know how ya feel. Also not sure if anyone mentiond it yet but we have to have our doc call the insurence hotline physicians only phone number to explain why Brad needs more then 9 imitrex (that's our ins co's limit) a month. And with that he is allowed more......doc has to go thru that rig-a-ma-row each month for us tho but it's better then jus the 9 pills. Hang in there and wishin ya luck with all this. I see supporters Pam