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   Author  Topic: my first vicarious cluster  (Read 381 times)
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my first vicarious cluster
« on: Jan 27th, 2006, 8:33am »
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This is the first time I've been through one of my boyfriend's clusters, and I think I'm more stressed out about it than he is!  He's had clusters for awhile, but this is the first time since we've been dating (we live togethor now) that he's had one.  It's pretty awful.  From what I've read, we have it pretty easy, he was in remission for three years, but in the course of a few days it rearranged our whole lives.  He's on a ton of drugs, which I'm glad the drugs are there for him, but I'm scared about what they're doing to his body.  One of them is a tranquilizer, so between it, emotional aspects of clusters, and getting very little sleep, it's like living with a different person.  I'm almost scared to interact with him sometimes because I don't want to bother him when his head hurts.  Don't get me wrong, I love him very much clusters and all, but part of me just wants the real him to come back.
 
I'm sure that I will get used to this, but right now it makes me crazy that there's not anything I can do for him.  I'm sure I"m preaching to the choir here, but it seems ridiculous that they can't do anything for these other than treat the symptoms!  I guess I'll get used to it.  Wherever I read the phrase "like a time bomb in the closet," it's very apt.
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Re: my first vicarious cluster
« Reply #1 on: Jan 27th, 2006, 9:11am »
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Hang in there and always make time for you!!
 
Here are some good resources that you both should memorize and possibly utilize.
 
They will provide information that will educate you both most likely more than his doctor!
 
 
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 first vicarious cluster
« Reply #2 on: Jan 27th, 2006, 10:36am »
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   This in particular hit me as I read your post.
 
  Quote:
One of them is a tranquilizer,

 
I don't have the slightest idea of why your boyfriends Dr. would be giving him a tranquilzer for Cluster headaches and I've had these since 1987
 
While it may not be the greatest idea to try to talk to him while he's being hit or recovering from a hit..there should be no reason for you to not talk to him about his meds or anything else.   Ask him what it is he's taking and why and let him fill you in on how he wants you to help.   Let us know.  We're all here to help if we can.
 
 
Linda
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