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        New Message Board Archives >> 2002 Posts >> What do I do NOW??  HELP!!
        
(Message started by: cerebus1968 on Nov 6^th, 2002, 9:44am)

Title: What do I do NOW?? HELP!!
Post by cerebus1968 on Nov 6^th, 2002, 9:44am

ok.. hi.. and thank you for all your valuable input on my last post (my first one..)
so now my question is.... what do we do now?? He's been having the headaches for years, but He was just diagnosed last week.. the dr has referred us to the neurologist, but can't get in for another month. what do we do until then? The only meds he's tried are what they gave him at the Dr and ER. .. demerol imitrex, (and something for nasea.. even tho he told them he didn't feel like he was gonna hurl) and then the last time.. the oxygen.. which did the most....and helped A LOT.
soooooo.. do I need to get him an oxygen tank for the house?? I mean, do you all have oxygen tanks sitting around??? How do you get them and are they expensive? Do they have to be prescribed.. and will insurance pay for them?
I tried to call the dr to ask all the questions, but he hasn't called back yet, and you guys are much quicker. What specifically should I ask him. I already told his nurse that I wanted to be referred to a neurologist that KNOWS about clusters... I made that point very clear. I just dont know what to ask and what to do now that we have a diagnosis finally.. HELP!!
Thank you .. for just being here..
tina

Title: Re: What do I do NOW?? HELP!!
Post by Not4Hire on Nov 6^th, 2002, 9:57am

Quote:

soooooo.. do I need to get him an oxygen tank for the house?? I mean, do you all have oxygen tanks sitting around How do you get them and are they expensive? Do they have to be prescribed.. and will insurance pay for them?

-yes
-yes
-from a medical supply house and not very
-yes
-yes, usually

Here's a link that may help ya:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=general;action=display;num=1035819596

then start pushing buttons at left-READ-PRINT OUT the info-and I wish you GOOD LUCK!

Title: Re: What do I do NOW?? HELP!!
Post by Bob P on Nov 6^th, 2002, 10:28am

First I'd print out Dr. Goadsby's article in the General section of the OUCH library "Correct management of Cluster Headache".

Then I would take it back to my GP and point out that the best treatment for CH is Oxygen, Injectable Imitrex and Verapamil and tell him to prescribe it for me because I can't see the neuro for a month and I will commit sucide before that.

I would also dump the demerol since the narcotics really aren't much good for clusters.

Title: Re: What do I do NOW?? HELP!!
Post by Ueli on Nov 6^th, 2002, 11:11am

Tina,
Go back to your doctor and ask for a script for oxygen, and don't leave until you get it. :D
Then bug the medical supply people for a regulator that goes up to 15 liters/minute, don't accept anything lower. Further, insist on a non-rebreather mask (with reservoir bag). Those nose cannules they give to respiratory patients are absolutely of no use for us.

Then educate yourself on every aspect of clusters and their treatment. You'll need that when you meet the neuro in 4 weeks. It is likely he doesn't know much about CH if he don't recognize it as an emergency. :(

PFNADs
Ueli

Title: Re: What do I do NOW?? HELP!!
Post by NotH20 on Nov 6^th, 2002, 1:08pm

Tina - having O2 tanks laying around our house is as common as someone having a couch in their living room! ;)

Since every insurance company is different and their coverage is not all the same, you will need to contact them directly to see what the pay for and what they don't pay for. Click on the OUCH button and read about the O2 mask and regulator. You must have the correct equipment in order for the O2 to be as beneficial as possible.

Also, you may want to check out the list of recommended docs in your area on the OUCH site. There just may be one in your area that will have the knowledge to treatment CH's.

Knowledge is the key to helping your hubby to best of your ability....

NotH20