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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hi.. I'm new and need help for my son
        
(Message started by: CharlieO3 on Aug 31^st, 2006, 10:19pm)

Title: Hi.. I'm new and need help for my son
Post by CharlieO3 on Aug 31^st, 2006, 10:19pm

Hi.. my name is Charlie and my son Mark has recently been diagnosed as having cluster headaches.
He does not have internet access right now and asked me to try and find out a few things tonite if I can. Specifically he is interested in
1) How effective are the preventative meds supposed to be (he's on 180mg of verapamil/day.. for 2 weeks so far.)?
2) How soon till effectiveness begins (i.e. how long before someone says, "I guess it's not working, let's try something else.") He's been using the Imitrex at onsets, but he's run over what insurance will pay and has already spent $275 on more doses.
Anybody with helpful answers?

Title: Re: Hi.. I'm new and need help for my son
Post by Nick8977 on Aug 31^st, 2006, 11:31pm

Hey Charlie,
I just got diagnosed a couple of days ago so I cant tell you much. They started me on the Imitrex for the pain with Verapamil and Prednisone. I think they may be working but I think Im in the same boat. Really too early to tell.
But you have definately come to the right place. I have learned tons in the 2 days that I have been on. Im sure someone will reply that is more helpful than I am. But check out all the old posts in the meantime. I cant tell you how helpful this place is.
Take Care
Nick

Title: Re: Hi.. I'm new and need help for my son
Post by jon019 on Sep 1^st, 2006, 12:09am

Hi Charlie,

180/mg day verapamil is not near enough. 240/day worked for awhile for me, currently on 480/day and may have to go up. Read the stuff on the left of this site, it is priceless. Better yet, print it out for the doc.

2 weeks is too long. Get the doc to up the dose, otherwise it is a waste.

Regards

Jon

Thanks for being a good supporter, it is so important.

Title: Re: Hi.. I'm new and need help for my son
Post by georgej on Sep 1^st, 2006, 12:17am

How old is your son? I think we should know his age and size before we talk about dosage amounts.

Curious, also, about his age, because many of us started in adolescence.

Be certain to check out the "oxygen info" link to the left as well. It's an effective abortive for many of us, and is well worth trying as a less expensive alternative or supplement.

There are many others here with more extensive knowledge about medications than I have. I don't medicate, so I'll defer to them. I'm certain they will be responding soon. Is Bob Johnson around?

Best regards,

George

Title: Re: Hi.. I'm new and need help for my son
Post by CharlieO3 on Sep 1^st, 2006, 12:32am

Thanks.. Good grist for the mill so far.
My son is 30. He had a handful of migraines (hmm?) earlier in life, but this just began around the first of the year after he had spent a month doing relief work with the coast guard in New Orleans. Military doc didn't take him seriously for months. Finally got a referral to an ENT ,,, had all the tests done .... MRI, CAT Scan showed nothing.... finally got referred to neurologist who said right away that he has a "classic case" of cluster headaches. Now the problem is that he will be getting out of the coast guard on the 3rd and starts new job on Tuesday (the 5th) and won't be covered for 60 days. Hoping he can get something from the doc tomorrow (up the dose, maybe?) to help him through til his new health ins. kicks in.

Title: Re: Hi.. I'm new and need help for my son
Post by Jobette on Sep 1^st, 2006, 12:46am

Has your son taken the cluster quiz (maybe you could print it off for him) [smiley=huh.gif] This will tell him more than the docs.
He has to get enough of the verapimil in his system and even maybe a prednizone taper to help break it (the cycle) :-X
You will hear about lots of drugs on this site and everybody can't take the same things or everthing doesn't work for everybody :(
First I pray that he doesn't have clusters, 1. It hurts like hell 2. It is very expensive to be a clusterhead.
But you are at the right place. Good luck! ;;D

Title: Re: Hi.. I'm new and need help for my son
Post by CharlieO3 on Sep 1^st, 2006, 1:16am

Oh Yeah, he's been all over this site this week. There's no doubt about the diagnosis. It's just a shame that it took so long before identifying it.

He very much wants to try the oxygen therapy. Does he need a prescription for it? Can the neurologist prescribe it, or does he need that from a primary care physician?

Title: Re: Hi.. I'm new and need help for my son
Post by Jobette on Sep 1^st, 2006, 1:43am

Yes he will need a presciption and any doc can write for it. ;;D

Title: Re: Hi.. I'm new and need help for my son
Post by Bob_Johnson on Sep 1^st, 2006, 8:03am

I wonder if his doc has much experience with complex headache?? Print this out and use it to open a discussion with the doc about options.

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf