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Hello (Read 1613 times)
linda
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Hello
Sep 30th, 2008 at 1:28pm
 
Hi, my name is Linda, I came across this site and was shocked to see how many people suffer from these horrible clusters. I started getting them 3 years ago. Normally, I get them twice a month. More if I drink alcohol and don't get enough sleep. I have been on Prednisone for about two years, at first I did what I was told to do and took the pills for 5 days. I was still getting them! I now take the pills when I start to feel the cluster coming on, I only take 30mg and normally it will be gone by the next day. I have found that I can't lose weight, in fact I have gained, even though I workout 6 days a week. I really wish there was a magic pill out there that would help. I dread taking these pills, but have no other choice. I feel for everyone on here, when the pain hits, there is no relief.
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Jimi
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Re: Hello
Reply #1 - Sep 30th, 2008 at 1:35pm
 
To make sure that I understand you. You get 2 headaches a month? How long do they last and what do you do when you get one?, like pace back and forth, go to bed in the dark etc. Who diagnosed that they were clusters?
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Linda_Howell
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Re: Hello
Reply #2 - Sep 30th, 2008 at 1:37pm
 
Hi Linda.   Nice name.  LOL

Pred. is almost universally known as a drug that makes one gain weight.  It is hard to lose that weight too, once it creeps up on you.  Also, alcohol is a known trigger for CH, so you may wnat to stay away from it when you're in cycle.

You don't say if you have been diagnosed, but please ask your Dr. for oxygen.  There is a link to the left of here on it and you can print it out and take it to your Dr.  It's our number one abortive around here.


Linda

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thebbz
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Re: Hello
Reply #3 - Sep 30th, 2008 at 1:45pm
 
Hello and welcome. You do have other choices that prednisone. Prednisone should not be taken as a preventative or for long periods of time. Many side effects ,including weight gain.It is a transitional medication for CH.
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linda
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Re: Hello
Reply #4 - Sep 30th, 2008 at 1:48pm
 
My regular MD told me they were clusters. They have gotten so bad that I went to the ER. At their worse, I do sit, rock and cry. If I don't take the Prednisone, they can last for many days. I hope I was able to answer your questions. I'm new at this message board.
I will talk to my Dr. about oxygen, thank you Linda
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CH-HELL
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Re: Hello
Reply #5 - Sep 30th, 2008 at 2:49pm
 
Welcome Linda, I see on your last post that you stated your HA can last for many days,  I am a chronic clusterhaed and always have a mild HA(shadow/phantom).  I was just wondering if this is what you meen. 
  Stay away from the pred it souldn't be used long term even though doctors will perscibe it.   good luck and keep reading    Phil
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Cathi_Pierce
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Re: Hello
Reply #6 - Sep 30th, 2008 at 3:30pm
 
hI lINDA!
wELL THE GANG ARRIVED BEFORE ME, BUT THEY HAVE WELCOMED YOU NICELY AND GIVEN YOU SOME FOOD FOR THOUGHT.
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flipperlips
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Re: Hello
Reply #7 - Sep 30th, 2008 at 7:41pm
 
Hi Linda.  Welcome to the family.  You will find all kinds of info here.  Keep on reading.

Hugs,

Jen
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