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mannina
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A Question
« on: Apr 22nd, 2007, 10:38am »
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So my darling tells me that the cluster headaches come about  once a year for two weeks. But recently he has had them now for almost two months on a daily basis. Any ideas why that is? will this persist and torture him like this for long? I am verrry concerned about him. He gets interrupted sleep and I am sure this is awful.  
 
I don't know what i am asking here... but if anyone can tell me anything that would be good.  Angry
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Linda_Howell
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Re: A Question
« Reply #1 on: Apr 22nd, 2007, 4:37pm »
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Hi,  
 
  If your guy only has these headaches for 2 weeks once a year then he can consider him very lucky.  Most who are episodic get them for at least 6 weeks, some much longer.  Then there us chronics who never get a break.
 
  Has he been diagnosed by a Neurologist?  Is he on any medication?    There are links to the left of this screen that will educate you on what to do, medications that  work, a letter to take to his employer or friends who dopn't "get it"  data on oxygen etc...
 
Another thing he is very lucky to have is YOU who is here trying to get answers.  We aren't doctors here, but together we have thousands of years of experience in treating and living with this condition that affects our lives and those of our loved ones.
 
If you can give us some more information, we will do everything we can to try to help you figure all this out.
 
    Linda  
 
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Re: A Question
« Reply #2 on: Apr 22nd, 2007, 10:59pm »
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Everything Linda said!  The most frustrating thing about this condition is that it is constantly morphing. A med that has worked for 10 years will all of a sudden stop working for you. It will switch sides, go from episodic to chronic, disappear for a couple of years, It's face never stops changing. The only constant is this board and the support it has to offer.
 
Hoping it's just a freak bump and it closes out soon. Either way get him on the board and let us try and help!!!!
 
Guiseppi
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mannina
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Re: A Question
« Reply #3 on: Apr 22nd, 2007, 11:26pm »
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You know he might be on the board for all I know. I did not tell him I joined. I don't know how he would feel or if he wouldwant his own privacy. I don't know.  
 
The only relief he gets is from oxygen. He was supposed to travel on a plane and they told him there was no oxygen on the plane and he was thinking about not travelling. [What the heck is up with no oxygen on the plane? are they insane?]
 
Imitrex sometimes works.  
 
Neurologists.. I don't know. But he said he ends up educating he doctors about the whole thing so he finds it useless now to even go. He doesn't bother.  
 
So if 'it's face never stops changing' does it always change to the worse?  
 
I am sooo worried about him.  
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Re: A Question
« Reply #4 on: Apr 22nd, 2007, 11:57pm »
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on Apr 22nd, 2007, 11:26pm, mannina wrote:

 
So if 'it's face never stops changing' does it always change to the worse?  
 

 
No.  Although my cycles are about the same length as they ever were (6 to 8 weeks), they have become less frequent as time has gone on.  Change does not always mean that they become worse.
 
Best wishes,
 
George
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Re: A Question
« Reply #5 on: Apr 23rd, 2007, 8:01am »
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Hang in there, Sweetie....
 
As the others have asked....what meds. is he on?
 
He needs a preventative and an abortative.
 
Let us know...
 
Jackie
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mannina
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Re: A Question
« Reply #6 on: Apr 23rd, 2007, 2:16pm »
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Preventative? is there any such t hing? the only thing he takes is oxygen when an episode begins. It seems to be abortive enough. But preventative? no.
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Linda_Howell
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Re: A Question
« Reply #7 on: Apr 23rd, 2007, 2:20pm »
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No.   Oxygen, at the 1st. twinge of pain, with a non-rebreather mask and  at 15 LPM is an abortive, not a preventative.
 
Yes, there are preventatives.  Lithium, Verapamil, caffergot, and others are usually tried.  Some work, some don't depending on the indivual.
 
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Re: A Question
« Reply #8 on: Apr 23rd, 2007, 2:44pm »
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I guess my post was a little negative now that I read it again! Smiley No the changes aren't always negative, I had an unexpected 2 year remission, it was heavenly!
 
As far as preventatives, yes. I use the oxygen, imitrex and cafergot as abortives. That is once a headache starts, it's how I beat it down.
 
As soon as my cycle starts I go on lithium. Over a period of several days I build up to 1200 mg a day. While I am in the build up stage I go on a prednisone taper dosing from 80 mg a day to zero. Pred holds the headaches away but is not good for long term use cuz it's really harsh on your body. By the time the pred is done the lithium has kicked in and blocks a good 80-90% of my headaches. I hope this makes sense!
 
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Re: A Question
« Reply #9 on: May 14th, 2007, 1:18pm »
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Hello,
I'm mannina's 'darling' and she's the most loving, supportive person i've ever met.  As I always say....I'm a very lucky guy!
 
To clarify....because i'm sure i wasn't clear to her, my cluster cycles come every year usually for 4 to 9 months.  This year's cycle took just a month off before coming back.
 
Anyhow, i really just wanted to thank her for her concern and love.  And to thank you for your support.  I did spend a lot of time here many years ago and the information and support was invaluable.
 
Bless u all,  Don  Smiley
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Annette
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Re: A Question
« Reply #10 on: May 14th, 2007, 4:39pm »
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Hello Don  
 
Welcome back. Sorry the beast is still making his visit but I wish that it will be short and easy followed by a nice big long break for you.
 
I am also a supporter for my husband who has CH and I understand how your wife feels at times.
 
Please stay around and post more so that we can get to know you better this time.  
 
Mannina, please do not hesitate ever to drop me an email or PM if you need to talk or just to share some thoughts.
 
Painfree wishes to you both.
 
Hugs
 
Annette
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Linda_Howell
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Re: A Question
« Reply #11 on: May 14th, 2007, 5:02pm »
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  Hi Don,   So glad to see you here.  Your supporter said:
 
  Quote:
I don't know how he would feel or if he wouldwant his own privacy. I don't know.  
 
 
 and I just wanted to jump in here and tell you that no one here invades anyone else privacy, if you are concerned about that.
 
We just here to help answer questions and give a little nudge in the right direction or a shoulder to lean on.  Lots of us have known each other here for years and years & have met in person so of course we know about each others families etc.  But you don't have to divulge anything but what you want to.  
 
If someone asks what meds you've tried or something like that it is only because we're trying to help.  For instance if you said you were taking Vit. C to rid yourself of CH, someone would most likely tell you that this will not help at all.   laugh
 
   Again, welcome.   Smiley  
 
Linda
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