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   My boyfriend has clusters...again....please help?
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   Author  Topic: My boyfriend has clusters...again....please help?  (Read 332 times)
anniibell
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My boyfriend has clusters...again....please help?
« on: Jan 26th, 2006, 8:01pm »
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Cry
hi.  my boyfriend of 6 yrs is on his 3rd session of headaches, since i've been with him.  he has had clusters for over 25 years, and is getting very tired of it.  just the other day, he wanted to just curl up and die.  i'm scared that there will never be anyone to help him.  i do all i can for him to get him through the attacks.  the doctors out here are morons and will not help him...limiting him imitrx shots(the only thing that eases his pain)  please help me.  i need some support on getting him through these dark times without myself going insane.  thank you..god bless all you!!
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Kris_in_SJ
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Re: My boyfriend has clusters...again....please he
« Reply #1 on: Jan 26th, 2006, 8:15pm »
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Hi Annibell,
 
Welcome.  First, thank you for being a good supporter.  Perhaps you can get your sweetheart to visit here himself sometime soon.  He'll learn a great deal (as will you) about this syndrome and the latest treatments - in addition to finding a great online family.
 
There's way too much regarding clusters and their treatment to say in one post.  I would recommend reading, reading and reading!  Here's one article that might get you started.  Perhaps you could print it out, show it to him and have him take it to the doctor.  Trex is only one part of treatment, and insurance companies love to restrict its use because of expense.  That can be taken care of often with a simple letter from the doctor stating the patient's need.  Perhaps Oxygen would be cheaper.  It certainly works for many here.  To get you started ...
 
http://www.brightok.net/~mnjday/chtherapy.pdf
 
We're here whenever you have concerns, questions, or simply want to vent.
 
Hugs,
 
Kris
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E-Double
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Re: My boyfriend has clusters...again....please he
« Reply #2 on: Jan 26th, 2006, 10:22pm »
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Read the imitrex tip
 
Here's my typical spiel to newbies.......read on!
 
 
This is a great resource to know like the back of your hand...print it out and give it to the doc  
 
http://www.brightok.net/~mnjday/chtherapy.pdf
 
It will present the appropriate treatments that you should seek and your doctor should know!!!  
 
 
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!  
 
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
 
I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"  
 
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753
 
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful  
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.  
 
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.  
 
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...  
 
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.  
I stayed with melatonin and have had decent sleep overall. (Maybe I should start folowing my own advice again hahahaha!)
 
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....  
 
Like I said we are all different.  
 
Best wishes, good luck & stay as positive as you can!!!!  
 
Eric  
 
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Re: My boyfriend has clusters...again....please he
« Reply #3 on: Jan 27th, 2006, 10:20am »
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Ditto! Also, caffeine works well for me to abort shadows, or headaches if caught early.
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carriefu
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Re: My boyfriend has clusters...again....please he
« Reply #4 on: Jan 27th, 2006, 10:29am »
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sometimes it helps to just get outside...distraction can save you!!!with a huge cup of coffee (or threee)
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bassman
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Re: My boyfriend has clusters...again....please he
« Reply #5 on: Jan 27th, 2006, 12:58pm »
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all these post are right, read read read until your eyes bug out. get educated because it might take awhile to find a good doc. been looking for 7 years and still have not found one. see if your boyfriend can get oxygen it is a lifesaver. stay strong for both of your sakes, if you can stay upbeat between attack that can make his life just alittle better, it's hard enough to deal with our own depression
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it's all right now...but later?....forget it
thats later. now is now are you going to be here now
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