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   Author  Topic: sorry to say we are back!  (Read 421 times)
penih
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sorry to say we are back!
« on: Jul 11th, 2004, 11:35pm »
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Hello I'm back ! My name is Penny and my husband Jim ihas the beast,I haven't been on the message board for a few years ,he had some time when it was just now and then  but now seems like he's back into a chronic state.At the end of both our ropes.Will write more later he is moaning and rocking  have to get him some ice.
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miapet
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Re: sorry to say we are back!
« Reply #1 on: Jul 12th, 2004, 2:31am »
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Hi Penny, sorry to hear your husband is getting hit.  
*positive light and energy*
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Margi
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Re: sorry to say we are back!
« Reply #2 on: Jul 12th, 2004, 10:10am »
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Hi Penny, I remember you from the old board.  I'm sorry to hear that Jim is getting hit again.
 
I'm confused by your post though - what do you mean he's "back in the chronic state again"?  Do you mean that he is back in cycle?  Or has he been in cycle for over a year now?
 
What meds is he on and is he trying oxygen?  
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penih
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Re: sorry to say we are back! Hi to Margi
« Reply #3 on: Jul 12th, 2004, 6:17pm »
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Hello: I'm so glad you remembered me.Yes he is chronic,it will go away for two to three weeks and then come back.Right now it's 24 7.Iwaited all day for the doctor to call me and discuss what to do,he's been on the same meds for so long nothing seems to work anymore,We have are own 02 unit at the house with the mask,lucky for us I worked at the hospital for 21 years so I have had lots of power where others do not.He's on 100 mg of Imetrix ,240 of verapimil  3 times a day, and lithum twice a day.Morphine for extreme pain.I'm wondering if the constant use is doing some of the triggering.He prescribed Demerol and vistriual for a quick fix for some sleep, don't think I spelled that right.Thanks for listening .Penny
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Margi
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Re: sorry to say we are back! Hi to Margi
« Reply #4 on: Jul 13th, 2004, 12:21pm »
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on Jul 12th, 2004, 6:17pm, penih wrote:
Hello: I'm so glad you remembered me.Yes he is chronic,it will go away for two to three weeks and then come back.Right now it's 24 7.Iwaited all day for the doctor to call me and discuss what to do,he's been on the same meds for so long nothing seems to work anymore,We have are own 02 unit at the house with the mask,lucky for us I worked at the hospital for 21 years so I have had lots of power where others do not.He's on 100 mg of Imetrix ,240 of verapimil  3 times a day, and lithum twice a day.Morphine for extreme pain.I'm wondering if the constant use is doing some of the triggering.He prescribed Demerol and vistriual for a quick fix for some sleep, don't think I spelled that right.Thanks for listening .Penny

 
When you say 24/7, Penny - you don't mean he's in constant pain that whole time do you?  He is getting pain free time in between attacks, right?
 
Sounds like maybe he needs to see his doctor again to adjust/change his meds.  I assume you mean the Imitrex pills (by that dosage) - has he tried the injections or the nasal spray?  I'm surprised the doc has prescribed morphine and demerol for him - narcotics usually only mask the pain - they do nothing to prevent it.  There is more and more research lately that meds can prolong things.  Is his doctor a cluster knowledgeable neurologist?  There is a list of them organized by area here:
 
http://www.clusterheadaches.org/doctors.htm  
 
He could try melatonin to help him sleep, or dramamine, or benadryl.  Quite a few people have found relief that way.  
 
Keep us posted, Penny - best of luck to both of you!
 
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Re: sorry to say we are back!
« Reply #5 on: Jul 19th, 2004, 11:47am »
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Hi from not so sunny Cape Cod today... hiding from my family hope they don't find me....LOL    
 
It sounds as if he is on some heavy duty pain med... and those that WILL cause rebound big time... Morphine and Demerol are notorious for rebound...  
 
Good luck and welcome back... try to get him off the narcotics or it will be a looooong road to remission... love to you Ree
 
ps Hi Margi et all.... Ill be home 24th...  
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