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lapowers
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What a journey
« on: Oct 28th, 2003, 1:28pm » |
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Hi
I am new to this website. My husband has suffered for the past 13yrs with chronic intractable CH. I am so glad that I found this site. It is hard for people who haven't lived thru this nightmare to relate. I am hoping to be able to pass on all that we have tried and possibly help someone. My husband has been in a cycle for the past few months and it gets harder to watch each time.
I look forward to meeting others that have the same worries I have. I keeps me sane letting it out and talking about it. Laurie
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Margi
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Re: What a journey
« Reply #1 on: Oct 28th, 2003, 3:48pm » |
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Hi Laurie - and welcome.  I'm sorry you have a reason to find us, but glad you did!
I do have a question for you, though. I've never heard the term 'chronic intractable' clusters. You say he's had this for 13 years yet you say he's been in cycle only for a few months? If he's only been having attacks for the last few months, that means he's episodic. If he has had attacks every day for the last thirteen years, that means he's chronic. I'm just wondering which category he fits into?
Again, welcome - get comfy and read everything you can in the buttons to the left, Laurie. We've got an awesome library over at the OUCH website too - and please feel free to ask ask ask here. We supporters DO understand how other supporters feel.
Nice to meet you!
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Jackie
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Re: What a journey
« Reply #2 on: Oct 28th, 2003, 6:39pm » |
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Hi Laurie,
Welcome to the site.
My hubby, Blake, is a chronic clusterhead. For the first time in years his attacks are manageable now. We've finally landed on a good med. combo. What a blessing!!!
We had the term 'intractable' used to describe Blake....by some doctor, somewhere, sometime (there have been so many I can't remember...  )
Apparently it meant that Blake was hard to treat or his CH was difficult to manage due to the fact that he is chronic.
Margi has given you excellent advice, Laurie (she always does... ) Study everything here and on the OUCH site. Knowledge is your best defense when dealing with this malady.
Good luck,
Jacks 
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lapowers
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Re: What a journey
« Reply #3 on: Oct 28th, 2003, 7:22pm » |
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Hi
Thanks so much for the replies. My husband Terry was eposidic for the first 6 mo after diagnosis. He then became chronic. When I said he was in a cycle I meant that he normally is about a 6 on the pain scale daily. He will get in a cycle that will be a 10 or above for weeks-months on end with no relief. After 3 yrs of daily visit to the pain clinic and hospitalizations (to many to count, we own a wing there and trips all over the country to the top doctors in the field his doctors said his clusters were intractable. They meant that they didn't respond to normal treatment and weren't able to get them to respond to anything and everything they tried. Before we went to Germany to have the stimulator implanted he had over a million $ in trtmnt. Scary to think for very little or no relief. I appreciate you listening and normally I am very good at staying positive. I look forward to the great support here. Laurie
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Woobie
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Re: What a journey
« Reply #4 on: Oct 29th, 2003, 5:11am » |
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Hello Laurie
Welcome aboard!!
Does your husband come to this site??
I have nothing to add - just wanted to say welcome.
you'll like it here
tina 
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lapowers
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Re: What a journey
« Reply #5 on: Oct 30th, 2003, 2:26am » |
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Thanks for the welcome
My husband hasn't come to the site yet. He isn't doing so well right now. I have been telling him of the great response I have recieved. we are looking for a doctor here in the states that could look at the stimulator implant he had placed in 97 in Germany. we have had a few people tell of us doc's to look into. This has been great. I wish there was something like this site when he first developed CH 13 yrs ago. He felt so alone not ever meeting anyone who was suffering from these.I always used to think I wish there was somewhere we could go and have people relate to what we where going thru. Luckily he had great doc's who keep on looking for something and never gave up on him. Even when he wanted to give up and end it all, they simply told him they woudn't allow it. He is here today because of that!! He has visited the sight and can't believe it. When he is feeling better I am going to get him to start getting involved with the site. I know he will feel the same way I do. He has alot he can offer to others. We are lucky in the fact that we live in Calif. The pain specialist he saw always told us that the laws in Calif were much diff than any where else. He said he many offers to practice elsewhere but wouldn't be able to give the advanced trmnt. he did here. I know for a fact our insurance comp. at the time was in another state and they used to think he was crazy with the trmts he would do and the levels of drugs he used.
I apologize for the rambling. I have 13 yrs of pent up thought to get out. Thanks for listening. Laurie
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Jackie
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Re: What a journey
« Reply #6 on: Oct 30th, 2003, 10:12am » |
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Again, Laurie, welcome to the group. It is great to finally find people who understand. I've often wondered where Blake and I would be right now without the support and knowledge we've gotten from this site. There is always someone around who is ready to listen and help hold us up when the going gets really tough. Sometimes all it takes is one small post and you immediately feel better.....you feel like there is hope.
Please keep us posted on how you all are doing...
Jacks
Oh....if you really start having a rough time Margi will advise you on the "supporter's bubble bath"... 
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lapowers
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Re: What a journey
« Reply #7 on: Oct 30th, 2003, 11:13am » |
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Thanks so much. I already feel better just knowing you are all out there. Laurie
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TxBasslady
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Re: What a journey
« Reply #8 on: Nov 3rd, 2003, 2:32am » |
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Hi Laurie,
Welcome..........this IS a pretty amazing site isn't it?
Always feel free to come here and vent or just to hang out with the rest of us. 
Sending your hubby lotz of pf vibes from Texas.
Jean
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