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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> new to the board and old to cluster ha's !
        
(Message started by: wildwillyinkc on Mar 14^th, 2006, 4:59pm)

Title: new to the board and old to cluster ha's !
Post by wildwillyinkc on Mar 14^th, 2006, 4:59pm

hey guys i am 45 yrs old and live in a rural area of missouri. have had cluster headaches as far back as i can remember. i was told i had migraines until 1995 when i started working in an emergency room in kansas city mo. a patient came in with a cluster ha and i told a doctor friend of mine, to watch how this guy acted and it's the very same way i acted when i had a cycle of headaches. he told me after about 10 minutes of treating him that i probabley had cluster headaches instead of migraines.
i made an appoitment at the pain clinic and thats where i diagnosed with cluster headaches.
as u can imagine until that time i had tried every kind of drug and blocks there is. the only thing that keep my ha's less severe was oxycontin and calan (calcium channel blocker).
i found out 3 yrs ago i have a pituitary macroadenoma as well.
the pain from these headaches are bad enough i have gotten rid of all my guns and go to a family members house when a cycle of them are coming on. this time of the year seems to be very bad for me.
it is nice to be here where people have the same problem as i have. there are still people in my family that think i am faking the headaches so i can take opoid pain medication. big misunder-standing. be well all bill

Title: Re: new to the board and old to cluster ha's !
Post by Kris_in_SJ on Mar 14^th, 2006, 8:41pm

Hi Bill. Welcome.

Stick with the Verapamil. Drop - repeat - drop - the Oxycontin. Opiates are absolutely useless for cluster headaches. The fact that any physician knowledgeable about the syndrome prescribes them, makes me wonder about his/her credentials. Narcotics cause rebounds, not to mention the possibility of placing a monkey on your back.

Read up on other ways to abort attacks. Oxygen, fast acting meds like Imitrex, etc.

There's a wealth of information here. Read, read, read.

Kris

Title: Re: new to the board and old to cluster ha's !
Post by Jasmyn on Mar 15^th, 2006, 2:58am

Hi Bill and welcome to this family. If there is one place people understand what you are going through and not faking it, it is here.

Like Kris said, there are better ways out there that will make this pain more manageable so read up as much as you can on this board.

Hang in there.

Title: Re: new to the board and old to cluster ha's !
Post by sandie99 on Mar 15^th, 2006, 3:01am

Bill,

warm welcome to the clusterfamily! :)
Here's lots of info & support. I'm so sorry that you have ch, but I'm glad that you've found your way here. :)

Best wishes & PF days,
Sanna

Title: Re: new to the board and old to cluster ha's !
Post by Guiseppi on Mar 15^th, 2006, 9:21pm

Welcome to the club! Please read up on some of the treatments available to you. Narcotics are generally too slow acting, cause rebounds and have bodacious side effects. Try the oxygen therapy link on the left. No side effects and complete relief for many! I hope you find something on the board that helps you. Let us know when you do it's how a lot of the learning gets done around here!!

Title: Re: new to the board and old to cluster ha's !
Post by Gator on Mar 16^th, 2006, 2:09am

Welcome to the website. Sucks that you had a reason to come looking for us, but damned glad you found us.

As you have no doubt discovered, the links to the left have tons of good info in them. There is more info on the OUCH website (http://www.ouch-us.org). Read everything you can, take the Cluster Quiz (http://www.clusterheadaches.com/quiz.html) and print stuff out that seems applicable. Unfortunately, because of the rarity of the disorder, you may end up teaching whatever doctor about CH.

Here is a link to read and print and take to your doctor. It describes preventative, transitional, abortive and surgical treatments for CH.

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

Here is a link to some non-prescription alternatives different people have used to help with the pain:

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

If you are currently taking medications, I would suggest you talk with your doctor before taking any of the nutritional supplements. At the very least check for interactions at a website such as:

http://www.drugdigest.org/DD/Home/AllAboutDrugs

Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other. Better safe than sorry where your health is concerned.

If you need assistance is getting your meds, the Partnership for Prescription Assistance website has links to hundreds of programs to help people get the meds they need. Check them out here:

https://www.pparx.org/Intro.php

Oxygen is an excellent abortive. Works for most people when used properly. Defintely try this. As well as it works, I have a hard time understanding why more doctors do not prescribe it. It must be used correctly to work, though. Get it prescribed for up to 15 lpm through a non-rebreathing mask for no more than 20 minutes. If your doc won't prescribe it for you, you might try welder's O2. It's the same pure oxygen used by medical suppliers. Many people here use it and would be more than happy to help you set it up. Here are some links that tell about using O2:

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

http://www.headaches.org/consumer/topicsheets/oxygen.html

http://www.chhelp.org/mhni.html

Here is a link to a letter that may help explain things to your friends, family and co-workers.

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

Again, welcome to CH.com. There's no better place in the world for info and support of cluster headaches.

Gator