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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Newcomer Introduction
        
(Message started by: jenrob2006 on Jun 29th, 2006, 10:05am)
Title: Newcomer Introduction
Post by jenrob2006 on Jun 29th, 2006, 10:05am
My name is Jennifer.  I found this website about 2 weeks ago.  I have been suffering from ch since I was 15.  My cycles are pretty predictable, usually coming in the summer and last about 2-3 months.  I have been on every known med dating as far back as furinal until they discovered that one of the side effects was recurring headache  ::) I am 29 years old now and my number 2 fear in life is that I may still have another 50 years of this hell.  My number 1 fear is that I may pass these killers onto my daughter and future children.  My most recent cycle started a month ago after a 4 year remission and it has been a killer.  My husband, daughter and I moved to South Carolina from Florida last month and his insurance does not kick in for another 2 months.  I had been dealing with these with meds until I gave up and paid out of pocket for the neurologist, prednisone, amerge, verapamil and now oxygen.  He finally gave me some Imitrex injections.  I was on those previously but I was recently diagnosed with a heart condition called mitral regurg, so I am scared to use them.  
I have been reading some of the posts around here and I am amazed at the level of support.  I have been going through life trying to convince people that I am not crazy, which is hard to do because even when I dont have an actual ch, the in between times are just as hard with the side effects from all the meds and the lack of sleep.
I look forward to meeting all of you.
Jennifer
Title: Re: Newcomer Introduction
Post by seasonalboomer on Jun 29th, 2006, 10:20am

on 06/29/06 at 10:05:02, jenrob2006 wrote:
My name is Jennifer.  I found this website about 2 weeks ago.  I have been suffering from ch since I was 15.  My cycles are pretty predictable, usually coming in the summer and last about 2-3 months.  I have been on every known med dating as far back as furinal until they discovered that one of the side effects was recurring headache  ::) I am 29 years old now and my number 2 fear in life is that I may still have another 50 years of this hell.  My number 1 fear is that I may pass these killers onto my daughter and future children.  My most recent cycle started a month ago after a 4 year remission and it has been a killer.  My husband, daughter and I moved to South Carolina from Florida last month and his insurance does not kick in for another 2 months.  I had been dealing with these with meds until I gave up and paid out of pocket for the neurologist, prednisone, amerge, verapamil and now oxygen.  He finally gave me some Imitrex injections.  I was on those previously but I was recently diagnosed with a heart condition called mitral regurg, so I am scared to use them.  
I have been reading some of the posts around here and I am amazed at the level of support.  I have been going through life trying to convince people that I am not crazy, which is hard to do because even when I dont have an actual ch, the in between times are just as hard with the side effects from all the meds and the lack of sleep.
I look forward to meeting all of you.
Jennifer


Jennifer,

Welcome to the site. It really is amazing isn't it?

It sounds as though you are doing all the right things with regard to meds, as well as your concerns regarding Imitrex and your heart issue. Most of us would recommend definitely speaking with your physician specifically regarding the heart condition and using Imitrex. Maybe the action that Imitrex creates wouldn't affect your heart, maybe it would -- you won't know till you ask someone.

No matter how long you have to live with CH you will find that there are ways to manage them. As you are episodic building a plan and an arsenal is the best advice you will find here. Knowing the seasonality of your CH is even better (how's that for a sunny outlook?) as you can make sure you're "ready" by having all your tools in place.

Have you used Oxygen before? If so and it has been effective, good on you. If not you need to make sure you consult of O2 link on the CH.com for the requirements you'll need for best effectiveness. 10-15lpm regulator and non-rebreather mask are essential. Any less flow and you likely will see spotty results. For a large number of us it is a lifesaver.

Living in SC, and having your cycle in the summer probably doesn't make for great timing. It's damn muggy. There's so many aromatic, flowering bushes and trees that can trigger. The temptation of cold beer. I hear ya. I'm in Charlotte, just north of you and hate the warm weather cycles.

If you need any local advice you can PM me.

Scott
Title: Re: Newcomer Introduction
Post by jenrob2006 on Jun 29th, 2006, 11:50am
I have not used the O2 before.  I tried last night for the first time, but I think there is something wrong with the mask.  There is a little cardboard cover over the holes on the right side but not the left.  I called the place I got it from and he could not understand what I was asking.  Is there supposed to be a cover on both sides or just one?
Thanks for the welcome.  I am looking forward to getting some great advice.
Title: Re: Newcomer Introduction
Post by E-Double on Jun 29th, 2006, 11:58am
Is there a bag attached?

The little rings are there so that you can exhale
Title: Re: Newcomer Introduction
Post by jenrob2006 on Jun 29th, 2006, 12:09pm
There is a bag attached.  There are two circles of tiny holes on either side of the mask.  One has a little cardboard circle covering the holes, but the other does not.  I dont know if it supposed to be like that or am I missing something.  I think I may physically bring it back to the place and ask someone.  I want to make sure that I am doing it right before I give up on it.
Title: Re: Newcomer Introduction
Post by nani on Jun 29th, 2006, 12:18pm
Hi Jennifer. Welcome. You can either tape over the holes on that side, or just hold your fingers over them when you inhale. I hold both sides shut when I inhale (even with the gaskets) and let go when I exhale.
Do that, and if it doesn't help within 15 - 20 minutes, it probably isn't going to. Have a look at the clustermasx, too. People who use it, swear by it.
www.clustermasx.com

pain free wishes, nani


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