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Just finding our about CH (Read 2026 times)
Joe Lvjy
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I never knew until now


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Just finding our about CH
Dec 29th, 2008 at 9:54am
 
Good Morning! I am a wife of a CH suffererand my eyes became wide open once I looked into this site! I was searching through the blogs and came across a "utube" link that showed a CH episode and I immediately started to cry. I have never seen my husband go through an episode, the beast comes during his sleep cycle and he refuses to wake me. Joe was sitting here and watched the "utube"video with me and I looked at him with my eyes full of tears and asked "is this what happens to you?", he said "it is exactly what happens". I could not stop from crying and all I could say was I am so sorry this is happening to you and I can't believe you don't wake me to help. Joe says there is nothing I can do and it is best I just stay asleep.
As I am writing this tears are falling to the keyboard and my heart breaks for my loving husband. We have been together for 20 years and the beast arrived about a month ago. At first, I thought is was a migrane and thought it was brought on by stress. Joe had knee surgery on Nov 7 and has been off work since, so he tends to be stressed when something has him down. Two Fridays ago, I came home from work and he had drank ONE beer and the beast came to visit. I had missed the episode but the after affects had me worried since it is not typical for men to get headaches. His eyes looked like the were bleeding, he was real red faced and then go pale and he said it hurt to even touch his scalp. I insisted we go the ER, he actually did not fight me on taking him, this is when I knew it was serious. Joe has such a high pain threshold and for him to agree I knew the pain was immense!! After waiting 4 hours in the waiting room and his blood pressure had went down over 20 pts and the pain was gone, he did not want to stay any longer and promised me if it returned he would come back. He followed up with our family doctor and he immediately told Joe he was suffering from CH. He prescribed him blood pressure medication and also Treimet, to take on the onset of his attack.
Well, this past Saturday the beast visited again during his sleep cycle, he immediately took the pills and guess what...The Beast refused to go away and again, he did not wake me but informed me Sunday morning of his attack. Joe said he rode the stationary bike, paced the floors and then went out on the back porch sat at the table, rocking back and fourth, holding his head and praying to God until it went away. Joe said the cold air helps, it was probably 30 some degrees out and he had only boxer shorts and a t-shirt to keep him warm but he said it did not even notice how cold it was, only that it helped.
I needed to understand more so I went engine seaching and that is how I found this site. I brought Joe in and told him I set him up on the site and I believe it will help him to communicate with others who suffer too. Joe is just learning the whole computer world but I am sure once he gets to know that there are more people who share this condition, he will open up. I will be here to help him and I know you will too.
Please keep Joe in your prayers and I will keep all of you in mine. Thank you for this site and support.
Joes wife, Monica
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Guiseppi
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Re: Just finding our about CH
Reply #1 - Dec 29th, 2008 at 10:01am
 
First off, bless your heart for being a supporter. My wife of 26 years is the one that found this board for me and has been my "sanity saver" on more then one occasion.

Your husband needs to give oxygen a try. For many of us who have tried it, it provides almost miraculous relief.I'm 48 and have been wrestling with the beast for almost 30 years. Oxygen is still my primary and most effective abortive, stopping an attack in as little as 6-8 minutes.

You will need a prescription from your doctor. You need an oxygen tank, a high flow regulator, at least 15 LPM, and a NON RE BREATHER MASK.  That last part is critical. Re Breather masks and nasal canulas allow outside air in and are worthless for CH.

Check out our supporters board too. It;s where our significant others hang out and bitch about what a pain we can be! Then get your hubby on this board so we can help him.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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George
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Re: Just finding our about CH
Reply #2 - Dec 29th, 2008 at 10:35am
 
Welcome, Monica and Joe.

First of all, as a supporter, you are very welcome here.  Consider getting your own user id and posting in the Supporter's section to introduce yourself.  I'm sure that the other supporters there will welcome you with open arms, and you may find that their insights may help you in learning to cope with the difficult role that supporters have.  Generally, clusterheads fall into one of two categories when they have an attack--those who prefer having others around, and those who prefer to be alone to deal with it.  It sounds as if Joe may be one of the latter.  I call them "hiders".  I'm one myself.

It sounds as if Joe's doctor is taking a two-pronged approach to his treatment.  First, a preventive approach to reduce the number of attacks (the "blood pressure medication", which I'm guessing may be verapamil).  Second, an abortive strategy, which I'm also guessing is Treximet. 

That's good.  If he's using verapamil as a preventive, he may find that the amount he's using may be inadequate to be completely effective.  Often, there's a learning curve involved, and the amounts prescribed will need to be increased (under the doctor's care, of course) until an effective dose is found.

If the abortive medication he's been prescribed is Treximet (a new combination drug consisting of Imitrex and ibuprophen) he may discover that this is less effective than Imitrex injectables.  In the experience of many here, the pills simply don't work fast enough to function as an effective abortive for a CH attack.  Joe may wish to discuss the use of Imitrex injections with his doctor.

I second Guiseppi's recommendation that Joe look into the use of oxygen as an abortive.  As he said, it must be administered at at least 15 lpm with a NON-rebreather mask (one that allows no admixture of atmospheric air).  Many here can abort an attack in just a few minutes using oxygen.  The side-effects are few.  It works well for something like 70 percent of us, and the cost is very reasonable.  Many consider it their first-line abortive.  Again, this is something he should discuss with his doctor.

Again--welcome.  I look forward to seeing your posts in the future, and look forward to meeting Joe as well.

All the best,

George

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"Whoever loveth me, loveth my hound."  (Thomas More, author of "Utopia", and Chancellor of England.  1477-1535)
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Joe Lvjy
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Re: Just finding our about CH
Reply #3 - Dec 29th, 2008 at 10:37am
 
Joe,
Thank you so much for the reply, Joe and I are awaiting a return phone call from the Dr and we both agree he should try the O2 since he says the cold air helps.
We were just talking and he said he can remember when he was young and he would get terrible headaches, his Mom would put ice on his neck and blow the fan directly on him until the pain went away. The Drs diagnosed him with migranes, I believe the diagnose was wrong and he has been dealing with CH since childhood and never knew the truth. I guess the Drs didn't really know about CH and that is why the labeled it as a migrane. I just could not imagine the pain he has been suffering! He has also told me if the beast were to show his ugly face more frequently, like in some cases I have read on this site, he would take his life; this makes me worry even more since he was serious on his actions. I could not imagine life without him!!
I can only hope that a cure will be found and we can all put the beast 6' under!! Thank you again!
Monica
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Monica
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My love for Joe is stronger
than the beast!!


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Thornville Ohio
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Re: Just finding our about CH
Reply #4 - Dec 29th, 2008 at 10:55am
 
George,
I set up my own user id, you can find me as Monica and I will be looking for support for my husband and I appreciate your immediate support; information is very helpful at this point and I plan to be in the fore front to help my husband and all others who suffer!
The BP med is Verapamil SR 360mg and his Tremimet is 85mg. Thank you again! Monica
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DennisM1045
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Re: Just finding our about CH
Reply #5 - Dec 29th, 2008 at 11:09am
 
Hi Monica,

First, thank you for being there for Joe.  I hope he knows how lucky he is to have someone like you in his corner. 

Joe is right when he says there isn't anything you can do for him.  I just want to be alone when the beast comes to wrestle in my head.

Like Joe, cold air works for me too.  Before I found this place and proper treatments I spent a lot of time outside or with my head in the freezer or with my face pressed up against the A/C vents in my car.  This works because it constricts the blood vessles throughout your body including your head where the pain is.  CH pain is at least partially vascular in nature.

Guiseppi speaks the truth!!!  Oxygen works for about 70% of us and has the least side effects of any abortive treatment.  Oxygen therapy is another vasoconstrictor.  Have Joe work with his Dr and give it a try.  Sometimes Drs are reluctant to perscribe Oxygen.  He may need a referral to a Neurologist, preferably a headache specialist to get what he needs.

The pills Joe's Dr gave him, "Treimet" you called them, are probably "Treximet".  It's a new formulation of Imitrex.  However, as Joe found out, pills are not very effective for CH.  The attack comes on so fast that the attack is at full strength for a while before they begin to kick in. By then it's too late and you are in for a long ride.

Have Joe go back to his Dr and ask for Imitrex Injections.  These are much more effective.  Though they are expensive and insurance companies don't like to pay for more than a handful.  If this is the case, there are ways to get the insurance to pay for more.

Having said that, Imitrex is my abortive of last resort.  I get on the Oxygen and, if that doesn't work, then I turn to the injection. 

There are many other options too.  Each has it's cost and side effects.  Some are over the counter, some are perscription, some are illegal.  So you guys need to educate yourselves on these options and work with your Dr to find the path that is right for you.

Here are some links:

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Good luck and let us know how it goes...

-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.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
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thebbz
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Re: Just finding our about CH
Reply #6 - Dec 29th, 2008 at 5:55pm
 
Were with ya Joe and Monica. Stay strong.
the bb
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MidgetNMinx
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My love is stronger then
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Re: Just finding our about CH
Reply #7 - Dec 29th, 2008 at 6:13pm
 
First and foremost welcome to the family! ((HUGS)) I'm a hugger I believe they are a miracle drug that is vastly underestimated in this world, hehe.

I won't try and educate you as I am still learning myself. My boyfriend has suffered from CH for twenty years and I have only been in the sideline dance for just under a year so I'll leave the advice to the wonderful experts that I have seen on these boards in the last year. My boyfriend is a "loner" type as well and would prefer that I NEVER see him like that. He's been known in the past to spend hours outside in the freezing cold while in cycle because it took the edge off for him.

I will say that if you ever need to vent, bitch, gripe, or generally blow off steam I'm more than happy to help as are many others here. We all deal with the stress in different ways, but in the end the shoulders here are a godsend to most of us.

Welcome home!!
((HUGS AGAIN))
Minxy
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There is no such thing as I know enough!
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Monica
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My love for Joe is stronger
than the beast!!


Posts: 37
Thornville Ohio
Gender: female
Re: Just finding our about CH
Reply #8 - Dec 29th, 2008 at 6:39pm
 
Thank you so much! You are right about thissite, I have been non stop all day learning so much that I did not know! I now feel I can help when when this beast hits! I haven't stopped crying all day; I will harden up though when he needs me, that's for sure! Please feel free to reach out for me as well in need! I think we all need each other and by the way, I m a hugger too!!

Thanks Again,
Hugs...Monica
MidgetNMinx wrote on Dec 29th, 2008 at 6:13pm:
First and foremost welcome to the family! ((HUGS)) I'm a hugger I believe they are a miracle drug that is vastly underestimated in this world, hehe.

I won't try and educate you as I am still learning myself. My boyfriend has suffered from CH for twenty years and I have only been in the sideline dance for just under a year so I'll leave the advice to the wonderful experts that I have seen on these boards in the last year. My boyfriend is a "loner" type as well and would prefer that I NEVER see him like that. He's been known in the past to spend hours outside in the freezing cold while in cycle because it took the edge off for him.

I will say that if you ever need to vent, bitch, gripe, or generally blow off steam I'm more than happy to help as are many others here. We all deal with the stress in different ways, but in the end the shoulders here are a godsend to most of us.

Welcome home!!
((HUGS AGAIN))
Minxy

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Monica Lovejoy  
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MidgetNMinx
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My love is stronger then
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Posts: 39
Grants Pass, OR
Gender: female
Re: Just finding our about CH
Reply #9 - Dec 29th, 2008 at 6:43pm
 
Don't overlook the old message board. There is still tons of really great tips, ideas, and laughs to been found there!

No worries on the tears, they are just a flushing of the bs before the work IMO. We all do it, some of us are just strong enough to admit it. Cheesy

Minxy
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There is no such thing as I know enough!
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Jennifer
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Re: Just finding our about CH
Reply #10 - Dec 29th, 2008 at 6:54pm
 
Hi Monica,

Smiley

That's for being such a wonderful supporter.

Welcome to Clusterville Smiley
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Jimi
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Re: Just finding our about CH
Reply #11 - Dec 29th, 2008 at 7:13pm
 
I see that you live in Ohio. Many of us are meeting in St. Louis in January for a meet and greet. We do this once a year at different locations. You can find out all the info down at the bottom if you go back out and look down at Meetings and Gatherings.

We will have plenty of Oxygen there and about 30 clusterheads and their families from all over the country.
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I am convinced that life is 10% what happens to me and 90% how I react to it.
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