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        Supporter's Corner >> Supporter's Corner >> NEW HERE
        
(Message started by: SIDMOORE on Mar 11^th, 2006, 12:45pm)

Title: NEW HERE
Post by SIDMOORE on Mar 11^th, 2006, 12:45pm

HI EVERYONE! MY HUSBAND HAS C.H. FOR ABOUT 9YRS. I KEEP HOPING THEY WILL JUST GO AWAY. HE SEEMS TO BE EMBARRASSED OF THEM. I LIKE TO TALK WITH ANYONE I CAN JUST TRYING TO GET MORE INFO. WE ARE SELF EMPLOYED AND HAVE NO INSURANCE. IMITREX INJECTIONS HAVE BEEN THE ONLY THING THAT SEEMS TO WORK. WE BUY 6 SHOTS/MO AND JUST STOCK UP WHEN HE IS H/F WE MUST OF HAD 70+SHOTS WHEN GOING INTO THIS CYCLE AROUND OCT. HE ONLY HAS 2 SHOTS LEFT. I DON'T KNOW WHAT TO DO. I SEE PEOPLE HERE THE CYCLE DOESN'T END. IS THERE INSURANCE THAT WILL COVER A PREEXSISTING CONDITION? HE COULD NOT WORK A 9-5 WE'VE BEEN BLESSED TO BE SELF-EMPLOYED. HOW DOES ANYONE W/ C.H. WORK A REG. JOB? HAS ANYONE TRIED SINUS BUSTER? I ORDERED IT TODAY, ANYTHING IS WORTH A TRY. WE BOUGHT AN OXYGEN MACHINE, IT WORKS BETTER. THE TANKS USED TO RUN OUT IN THE MIDDLE OF A BAD ONE, THEY WERE TOO HEAVY FOR ME TO MOVE BY MYSELF. I JUST FEEL USELESS. HE SPENT 2 WKS. AT THE DIAMOND HEADACHE CLINIC IN CHICAGO WERE HE HAD 21 IV BAGS OF HISTIMINE IT STOPED THE CYCLE FOR ALMOST 2 YRS. HAS ANYONE ELES BEEN THERE? I'M GOING TO GET THIS MELATONIN FOR HIM TO TRY, THEY SEEM TO BE WORSE AT NIGHT SO I HOPE THAT HELPS. I'M GLAD I FOUND ALL OF YOU, IT HELPS TO KNOW THERE ARE OTHERS WHO REALLY UNDERSTAND. PEOPLE ALWAYS KNOW SOMEONE WHO HAS MIGRAINES. NO! YOU DON'T UNDERSTAND! 4-5 MONTHS EVERYDAY. HOW MANY MG. OF ZYPREXA?

SUSAN

Title: NEW HERE
Post by SweetMelissa on May 4^th, 2006, 10:40am

My name is Melissa and I am the wife of a CH suffer (MadFlash) who just started posting on this site a few days ago.
I have spent many hours trying to find out everything I can about CH in order to try and understand it and to try to help him as much as I can.
Watching MadFlash suffer from those headaches is very difficult to watch the person I love suffer day in and day out with those and knowing I can't do much of anything to help. I wish I could take them away.
We are currently trying some med's to help, and so far we are unsure of the result, but I am praying that they will make things so much better.
I don't know what else to say right now, this is my first time on the site, but I look forward to being able to speak to other support people and maybe I can learn something too.

Good day :)

Title: Re: NEW HERE
Post by Garys_Girl on May 4^th, 2006, 11:58am

Susan,

It is so difficult, and my heart goes out to you. PLEASE take the time to thoroughly browse this site! You'll find tips on using oxygen more effectively (read the "Oxygen Info" - click on it on the list on the left). There are also tips for extending Imitrex.

I know I've seen info on both insurance and getting help getting meds when you don't have insurance, but I'm sorry, I just don't remember where - whether it was in the Meds section of the boards or the Cluster Headache specific section. But it's in here somewhere, so if someone with more knowledge doesn't post a link, keep looking.

Also, here's a link to a great letter you can use with family and friends to help them understand:

http://www.ouch-us.org/chgeneral/colleagueletter.htm

It is believed that cluster headaches are caused by a problem with the body's biological clock, which is controlled by a node in the hypothalamus. Melatonin, magnesium and calcium are important components of this. Melatonin is usually taken (by clusterheads) at 9mg - 12mg. Hubby uses two 5mg tabs every night. He takes it with 1000mg of Taurine, 600mg of calcium, and 250 mg of magnesium. Magnesium is difficult for the body to metabolise: taurine and calcium both assist. Hubby also takes 250mg of magnesium, 600mg of calcium and 1000mg of Taurine with breakfast in the morning.

Please also read through the Kudzu threads in the meds section. It has helped many. Please check for potential drug interactions beforehand (shouldn't try the Kudzu if he's on verapamil, for instance).

And there is another alternative. Some consider it to be the last choice, because it is an illegal psychedelic. But psilocybin, found in "magic mushrooms" has proven to be a very effective "cluster buster." In fact, Harvard has been gathering information for the past two years, and that data was not only just presented at the National Headache foundation's annual conference, but it has been accepted for publication in Neurology magazine (a peer review journal). It works so well as a preventative for cluster headaches that Harvard is going to attempt to get FDA approval to run clinical trials. More information can be obtained at www.clusterbusters.com.

Good luck! Read all you can here, and ask away!

Laurie

Title: Re: NEW HERE
Post by QnHeartMM on May 23^rd, 2006, 1:50pm

Hi all. I'm very long in finally participating in this board. I found clusterheadaches.com years ago when describing my husband's headaches to a colleague at work. My husband has been using the board ever since - Guiseppppi, and it's been wonderful for him. I know that both you and your husband will find a great source of information from all the very caring people who share their experiences and support. For my husband, I know that a combination of Cafrigot (Sp?) and oxygen taken right away can help. He has a different kind of regulator that he can control the flow of the oxygen so it lasts longer. I think it's a "demand" regulator? Certainly not the kind the medical supply place gives you. He carries Imitrex too, but it's new to him in his latest series. I think he's used 3-4 shots so far. His series started some time over the holidays in 2005 and is still here.

Best of luck to you -

Q.

Title: Re: NEW HERE
Post by LeLimey on May 23^rd, 2006, 5:47pm

Hi Q its lovely to meet you! I'm so glad you've come along to join us and believe me there is plenty of support here for YOU as well as for Guiseppi. Supporters are very important to everyone here and you will be welcomed with open arms where ever you post. Don't feel restricted to this one board okay? We'll help you and crack a smile with you wher ever we see you! :)
looking forward to getting to know you better
Helen XX

Title: Re: NEW HERE
Post by QnHeartMM on Jun 22^nd, 2006, 5:52pm

Thanks LeLimey for the welcome. To be honest, I'm still finding my way around the board, so many postings and haven't quite figured out where I belong. I have been with Guiseppppi for 25+ years though and he's had headaches going back all the way, although we didn't know what they were at first. I remember him going out in the middle of the night to buy excedrine PM. We've come a long way since then.

Anyways, if anyone has any questions feel free to email me. So far it hasn't become habit to check the board with any frequency, but perhaps as I get to know people that will change.

TTFN

Q.

Title: Re: NEW HERE
Post by maffumatt on Jun 22^nd, 2006, 7:03pm

If you have been with a clusterhead for 25 years you belong in heaven with the rest of the angels. You belong wherever you feel comforable on the boards. If you have anything to say on any post on the board please feel free to speak your mind. Others may not agree with everything you say, but can you imagine how boreing this place would be if everyone agreed on everything?