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new, wife of a clusterhead, looking for support (Read 2495 times)
diede
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Zaltbommel Holland
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new, wife of a clusterhead, looking for support
Jun 26th, 2008 at 7:02am
 
What a great family this is!
Thank you all for your response, i'm so glad i have found you, but i guess that everybody says that.
As for my husband John, we have seen a neurologist today and their taking him into hospital this afternoon to see if oxygen therapy works.
He also gets verapalmin. I see you are all experts at this because the neurologist said exactly the same as you do about the imigran.
Thanks again, its such a help to know your there!
p.s. i'm not quite sure this is the right way and or place to respond, but i havent found out how to do it otherwise. Diede
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« Last Edit: Jun 27th, 2008 at 7:21am by diede »  
 
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Bob Johnson
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Re: new, wife of a clusterhead, looking for support
Reply #1 - Jun 26th, 2008 at 7:17am
 
It is not a common effect of this medication, but it can alter the frequency and pattern of attacks.

To be useful to you, we need much more information about: the quality of doctor he is seeing (does this doc have experience with headache?); what medications has he used--current and past, etc.

There is also a supporters section where you can communicate with other family folks who are in your position. Start scrolling downward from the home page, below this section, and you will find it.
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Bob Johnson
 
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Guiseppi
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Re: new, wife of a clusterhead, looking for support
Reply #2 - Jun 26th, 2008 at 11:25am
 
Welcome to the board and bless your heart for being a supporter. My wife has put up with 28 years of these damned things and hasn't been scared away yet. Please encourage your hubby to get on the board, start asking questions, and make sure he's on the right path for treatment. Let us know a little about his regimen, what preventative medications he uses, what he takes when he gets an actual attack, there are too many treatments available to just hurt all the time. Glad you found us, hope we can help you both.

Guiseppi
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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kevmd
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Re: new, wife of a clusterhead, looking for support
Reply #3 - Jun 26th, 2008 at 12:40pm
 
what Guiseppe said.  But wanted to add a big thank you for supporting your husband.
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PHILADELPHIA PHILLIES 2008 WORLD CHAMPS
 
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lisa1973
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Re: new, wife of a clusterhead, looking for support
Reply #4 - Jun 26th, 2008 at 1:19pm
 
Just wanted to say hello and welcome!

New here myself after being diagnosed with CH a few weeks ago.

From what I have seen you will find all the support you need right here!

Take Care

Lisa
xx
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thebbz
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Re: new, wife of a clusterhead, looking for support
Reply #5 - Jun 26th, 2008 at 1:43pm
 
Hello,
Take it easy and breathe. CH will not kill you. You may wish it would but it dont.
Check these out.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Get some 02. Caffeine works if you get to the headache at onset.
Melatonin could help with the nightime hits. Its available over the counter.
Believe it or not alot of people have been right where you are. The frustration and feeling of desparation is "normal" under the circumstances. You must try to remain calm. Your one with the head knows how you feel and that just adds to his frustration. Cut him a break. Do this for yourself as well. Deal with trying to get 02, and a treatment plan that includes more than imigran.
Imigran is known to cause rebound headaches, maybe that is what is happening?
all the best
thebb


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« Last Edit: Jun 26th, 2008 at 1:44pm by N/A »  
 
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Melvyn
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Re: new, wife of a clusterhead, looking for support
Reply #6 - Jun 26th, 2008 at 4:41pm
 
Hi Diede,

I know it must be tough but please stick with it - I know I couldn't manage without the support of my wife.

There is a body of opinion which says that using imigran can cause what we call 'rebounds' - roughly that means that the CH goes away but can come back more frequently and stronger - some people subscribe to this view and some don't. Perhaps that's because CH affects us in different ways. Thats why some Drs. limit the amount of Imigran they prescribe.

Try reading the stuff on here and, as already suggested , get your hubby to come onto the site - there's nothing like knowing there's a huge family out there and we are all suffering but coping.

regards and PF days,

Melvyn Smiley

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Melvyn
 
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DennisM1045
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Re: new, wife of a clusterhead, looking for support
Reply #7 - Jun 26th, 2008 at 7:30pm
 
Hi Diede,

First, let me say a big
Thank You
for taking such good care of my cluster brother.  Our supporters are the rock we cling to in the storm.  Thank God for people like you.

Does he have Oxygen?  I'm not sure how to get in Holland but it is a God send for a lot of us.  Cuts down on Imigran usage and works almost as well.

Please encourage my brother to log on here so we can give him some support too.

-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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Charlie
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Re: new, wife of a clusterhead, looking for support
Reply #8 - Jun 26th, 2008 at 9:51pm
 
Welcome and what you are doing for your husband is wonderful. One thing that can lessen the number of them is simply sleeping in a recliner. Another is the technique that I'm posting here. It worked very well for me. In any event, you will find some great ideas on these boards.

                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      


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There is nothing more satisfying than being shot at without result---Winston Churchill
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Jackie
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Re: new, wife of a clusterhead, looking for support
Reply #9 - Jun 27th, 2008 at 6:36am
 
Welcome diede.  You've come to the best place in the world for help and support.

My husband is 'the one with the head' too.  My advice....read and study everything you can both here and on the OUCH site.  Education is your best defense.  You're getting some great support already...these cluster sufferers are smart!!!!

Hang in there...

Jackie
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