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        Supporter's Corner >> Supporter's Corner >> Hi New Here
        
(Message started by: gizmo on Aug 25^th, 2002, 10:48am)

Title: Hi New Here
Post by gizmo on Aug 25^th, 2002, 10:48am

Have been checking out the site daily lately. My husband is a cluster sufferer and has been since he was in his 20s, now in his 40s. We have tried just about all the meds. He is in a pretty severe cycle now, ended up at an urgent care clinic in Fairbanks. This is the first time I have gone in with him. I have never been so disgusted with the way people treat the sufferer. They dont have a clue what you are talking about, but act like they know what to do. I was so upset I had to leavebefore I said some very nasty things. We are so glad we found this site, It's so nice to hear we are not alone . Thanks

Title: Re: Hi New Here
Post by Ree on Aug 25^th, 2002, 10:56am

Welcome to the CH family....Ya, some people can be ignorant as far as CH is concerned... you just have to realize those ignorant people usually know nothing about CH. We have also had people treat my husband badly in the ER and also the secretaryat the Neuro's office before I enlightened her... Don't be afraid to tell these people off... they are working for you... If you dont like your doctor FIRE HIM/HER!!!! Glad you found us though. You will find alot of understanding here. Tell us more about your hubby, his med program etc... good luck... ree

Title: Re: Hi New Here
Post by debbie4278 on Aug 25^th, 2002, 11:32am

Welcome!!
I vote for letting the "NASTY THINGS" out!!!!!!!!
Tell them like it is.
And refer to Georgia's incredibly AWESOME post a few days ago...her plan for the ignorant health care people.

Fairbanks??? There goes the light theory. It's light all day there right now isn't it??

Deb

Title: Re: Hi New Here
Post by ChristineL on Aug 25^th, 2002, 11:39am

Welcome,

Let us know how we can help.

Chris L

Title: Re: Hi New Here
Post by Becca on Aug 25^th, 2002, 10:27pm

Welcome! So sorry to hear that you husband is hurting now. The ER is a bad set up for anyone with CH. We and many other sufferers have had this experience, too. I am a nurse, and believe me, that didn't help one bit to speed up the process or get my husband the appropriate care in a timely fashion on either occasion when we broke down and went there! (Before we came here.)

If there is an Urgent Care Clinic or an ER that you could plan ahead to use when driven to the wall, here's an idea (from this site). First, of course, you need a doctor, neuro specialist or not, to work with your husband on a treatment plan tailored to him.

Next, have your husband's doctor write out the plan for emergent CH abortive measures to be taken for his patient if he goes to the UCC or the ER for treatment. Also, have a copy of this treatment plan to bring with you, which has your doctor's telephone numbers on it. Find out if the facility you will probably use has any policy about keeping MDs individual patient treatment plans on file and readily accessible.

From all I've read on this board, it seems like the best plan is to get as self sufficient as you can be to deal with attacks where they happen. That means have your abortive on hand at all times, once you learn what works for him. We are still working on this, and so far, for shadows anyway, oxygen seems to work, caffeine sometimes helps, and some pain meds like darvocet that Bill's GP prescribes are a little better than, say, a kick in the ass. Strenuous exercise has helped on occasion, too, like chopping up mesquite wood with an axe in the middle of the night. (Our neighbor thinks we are nuts). So, again, welcome to this nutty neighborhood!

Title: Re: Hi New Here
Post by Darleen on Aug 26^th, 2002, 11:03am

Hi gizmo,

Welcome home! I normally start off with that because this is like a home for many of us. Other people that don't from these headaches can't understand what it is like to either suffer or support a sufferer. So pull up a chair and take it all in.

We're all here for you.

Lots of love,
Darleen

Title: Re: Hi New Here
Post by Svenn on Aug 26^th, 2002, 12:46pm

Hi There

Welcome to Clusterville.
Here you will find almost everything you want to know.A lot of friends that really are dedicated to help a fellow clusterhead.Hope you will find what you are looking for.

I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway

Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons 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 /daily

This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway

Svenn