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Daniel Cook

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On week 4 ready to try anything
Aug 31^st, 2010 at 11:52pm

My first cluster cycle, doctor neurologist has me on divalproex? garbage doesnt do anything for prevention but says it does! taking imi injections/nasal zomig helps with the attack but does nothing for prevention! I also have a S cylinder of oxygen but none of this helps for prevention! i need to stop the attacks. I'm on week 4 of not going to work and im in fear of losing my job pretty soon...... almost maxed out all my medical coverage as well

I want to try Prednisone and Verapamil but the doctor refuses.... anyone know where i can buy these drugs generic online? she believe they will go away on their own but i dont!!!!

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: On week 4 ready to try anything Reply #1 - Sep 1^st, 2010 at 12:39am I'd be looking to change doctors to one that knows a bit more about how to properly treat CHs.
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bejeeber

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Re: On week 4 ready to try anything
Reply #2 - Sep 1^st, 2010 at 12:44am

Daniel Cook wrote on Aug 31^st, 2010 at 11:52pm:

.. anyone know where i can buy these drugs generic online?

Been there and done that many times, and I sure understand your resorting to extreme measures in search of a preventative.

Make sure to watch out with any prednisone - very dangerous in sustained high doses. You really have to know what you're doing.

Sounds to me like what you really need is a new doctor, or to consider the clusterbusting route (did we already discuss that? Sorry it's becoming a blur lately).

A first cycle does commonly end after a month or so BTW.

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« Last Edit: Sep 1^st, 2010 at 12:46am by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Joni CH.com Old Timer Offline Knowledge is Power Posts: 476 Gender:	Re: On week 4 ready to try anything Reply #3 - Sep 1^st, 2010 at 2:00am Bless your heart! Get a new doctor...quick! Prednizone and Verapamil sound legitimate to ask for and should stop it.
Back to top	Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis IP Logged

Neal

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Re: On week 4 ready to try anything
Reply #4 - Sep 1^st, 2010 at 9:01am

Daniel,

1. I would switch doctors, immediately. If you have trouble finding one, go to the OUCH (Organization for Understanding Cluster Headaches) website, they have a list of docs there. Or you could tell us where you live and anyone near there may say "go see Dr. X in City Y, they know about CH and treating them."
2. If you are in the USA, for your employment issues, there is something called the "Family Medical Leave Act" (a/k/a the FMLA), whereby you can take up to twelve (12) weeks of unpaid leave to help with your own or a close family member's medical illness. They cannot fire you if you go this route, neither can they cancel your health insurance (except under certain limited circumstances). Whether or not this applies to you is dependent on several factors. See this page at the US Department of Labor: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

for more information. If you want to go this route, make sure you adequately arm yourself with accurate information before discussing with your employer!
3. Our thoughts and prayers are with you - we do know what you're going through. Sorry you had join our little corner of the internet. Sad

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« Last Edit: Sep 1^st, 2010 at 9:03am by Neal »

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Peter B

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Re: On week 4 ready to try anything
Reply #5 - Sep 1^st, 2010 at 9:17am

cannot stress the importance of finding a doc who understands CH specifically and has experience treating it. Makes no sense that a doc would not think of using Verapamil (unless there are other circumstances) if the doc thinks you have CH.

BTW I find personally that the imitrex nasal takes too long to have any real effect. I've stopped using them altogether.

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Daniel Cook

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Re: On week 4 ready to try anything
Reply #6 - Sep 1^st, 2010 at 11:09am

found a new doctor from the ouch website i sent him an email fax and I called waiting for a response! I'm in Canada medical system is good its just i have had to call in sick SO many times over the past month maybe 15 times !!

I had my first attack aug 8th, i'm coming up on a month here so it should go away soon right? haha wishful thinking?

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Daniel Cook CH.com Junior Offline I Love CH.com! Posts: 29	Re: On week 4 ready to try anything Reply #7 - Sep 1^st, 2010 at 11:11am also if all else fails! i'm ready to try a busting method lol. but i heard i need to detox of meds and that means no zomig nothing? argh i dont know if i can handle that
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DennisM1045

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Re: On week 4 ready to try anything
Reply #8 - Sep 1^st, 2010 at 11:13am

Hi Peter, I'm sorry you are getting slammed. Fall is a very busy time of year around this place. You aren't alone but I know that only helps so much.

I'm with others in this thread. You really need to find a Doctor who knows something about CH. I've used Verapamil quite successfully in the past.

Daniel Cook wrote on Aug 31^st, 2010 at 11:52pm:

I also have a S cylinder of oxygen

I'm not sure what an S cylinder is. How big is this thing? Is it medical O2 or welding?

The reason I ask is that you could bring your abortives to work with you. That's what I do and have since 2008. I keep a large M-tank at home but carry E-tanks around with me in the car. You should be able to get them through your Oxygen provider.

The people I work with joke and call me Darth Vader but it's all good. They know it helps and are really very supportive. With 25lpm I can abort an attack in 10 minutes and be right back to work again.

Until my preventative kicked back in I was aborting 2-3 attacks a day for 3 weeks while in the office. Never missed a day.

I hope this helps...

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Daniel Cook

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Re: On week 4 ready to try anything
Reply #9 - Sep 1^st, 2010 at 11:16am

Thanks Peter for the help! everyone on this board is so understanding! none of my friends understand what im going through.... I'm only 25 they think pop some advil lets go drinking and dancing you will be fine!

Makes me wanna kick them in the a$$

DennisM1045 wrote on Sep 1^st, 2010 at 11:13am:

Hi Peter, I'm sorry you are getting slammed. Fall is a very busy time of year around this place. You aren't alone but I know that only helps so much.

I'm with others in this thread. You really need to find a Doctor who knows something about CH. I've used Verapamil quite successfully in the past.

Daniel Cook wrote on Aug 31^st, 2010 at 11:52pm:

I also have a S cylinder of oxygen

I'm not sure what an S cylinder is. How big is this thing? Is it medical O2 or welding?

The reason I ask is that you could bring your abortives to work with you. That's what I do and have since 2008. I keep a large M-tank at home but carry E-tanks around with me in the car. You should be able to get them through your Oxygen provider.

The people I work with joke and call me Darth Vader but it's all good. They know it helps and are really very supportive. With 25lpm I can abort an attack in 10 minutes and be right back to work again.

Until my preventative kicked back in I was aborting 2-3 attacks a day for 3 weeks while in the office. Never missed a day.

I hope this helps...

-Dennis-

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Daniel Cook CH.com Junior Offline I Love CH.com! Posts: 29	Re: On week 4 ready to try anything Reply #10 - Sep 1^st, 2010 at 11:44am Oh by the way S cylinder is HUGE its massive around 6 hours of oxygen time?
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Callico

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Re: On week 4 ready to try anything
Reply #11 - Sep 2^nd, 2010 at 12:28am

You didn't mention a flow rate on the oxygen and what type of mask you are using. At 25 to 30 lpm I can abort usually within 5 to 8 mins, plus I carry 5hr Energy drinks in my pocket, and can usually knock back a hit to a functional level within 5 mins. You might try that.

For a prevent you might try Kudzu if you can't get your Dr to give you a script for Verap. I actually prefer it. You have to pay out of pocket as it is over the counter, but I find it to be as effective if not better and without the side effects. Search the site for it or if you don't find the info you need PM me and I'll be happy to help with a supplier and dosing.

Jerry

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