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   Author  Topic: READ THIS IF YOU ARE A CH SUFFERER!!!  (Read 875 times)
bonniebluebug
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READ THIS IF YOU ARE A CH SUFFERER!!!
« on: Jun 15th, 2007, 1:50am »
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Just as an introduction, I am engaged to a man who has suffered from cluster headaches for over 13 years now.I made it my priority to research everything I could on cluster headaches...and I do mean everything!
 
I have been compiling research on and about this horrible demon, by reading all the information I could find...everywhere!  Just the last couple of months I have made some interesting connections in various word-wide studies that lead to a couple answers for possible (VERY POSSIBLE) reversal of the condition.  I have been very thorough in researching this as it means the love of my life will not be in pain, I had to find the research that provided the answer!  This is not fake.....I am most sincere and hoping this will help others as the research really points to this!
 
My sweetheart is beginning these supplements tomorrow and hopefully this time....(If you are a sufferer, you know all too well how many doctors, specialists, narcotics..etc that a person dealing with cluster headaches will go through to find anything to help and how nothing really does help in the long run)
 
Here is what the research has pointed at (or lack of taking up this whole website I will not post everything, just the main points) Due to a low Melatonin levels in cluster headache patients, the circadian cycle (which regulates our sleep times and other things...it's like our internal clock) is not regulated properly.  Also, research has demonstrated that low testosterone levels effect the onset of cluster headaches. (even women have testosterone levels)
 
Please look at the following web addresses for further information.  I hope it helps you regain a normal life.  I pray for all of you!  Copy and paste the web addresses into your address bar to view them.  (I am in no way affiliated with these, they just really state what all the research I've read, memorized, and reviewed in the last three years really points to) Hopefully my sweetheart will be finally free from the "demon" and I pray you will too.
 
http://www.usdoctor.com/cluster.htm  
(watch the video of the man on this one! Click your mouse on the photo of the man.)
 
http://headaches.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=headac hes&zu=http%3A%2F%2Fwww.current-reports.com%2Farticle_frame.cfm%3FPubID%3DPA10-2-2-06%26amp%3BType%3DAbstract
 
Take Care,  
bonniebluebug
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LeLimey
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Re: READ THIS IF YOU ARE A CH SUFFERER!!!
« Reply #1 on: Jun 15th, 2007, 3:06am »
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You don't have to make the same post on every board.
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The arsehole I'm divorcing needs to get a life and stop stalking mine

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Re: READ THIS IF YOU ARE A CH SUFFERER!!!
« Reply #2 on: Jun 15th, 2007, 6:55pm »
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This is starting to bug me a little.
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Re: READ THIS IF YOU ARE A CH SUFFERER!!!
« Reply #3 on: Jun 15th, 2007, 7:28pm »
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You sound like a great supporter, he's a lucky man to have someone like you who does this kind of research for him. That being said...get ready for some disappointment! Embarassed
 
Magnesium, B2 and calcium supplements have helped me by extending my remission time, and I think they have lessened the intensity during my on time. But I'm not sure about that!  Undecided The biggest problem with this CH stuff is you are never sure if your medication regimen is having an effect, or if the beast was just moving on anyways. He morphs so often I'm never really sure.
 
You will hear some frustration in some of the responses to your post. Many have walked with the beast for 10,20,30 years and more. We get a lot of new, excited people who think they have stumbled onto the "cure" , only to find out they had hit a natural remission and the beast is still there.
 
Make no mistake, I wish your fiancee a pain free lifetime. I hope his regimen causes a lifetime remission. Please be ready for the beast to return. In all likelyhood it will. When it does come back to this board and we'll do everything we can to help you both manage. It's what the board is for. Good luck to both of you!!
 
Guiseppi
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Brew
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Re: READ THIS IF YOU ARE A CH SUFFERER!!!
« Reply #4 on: Jun 15th, 2007, 9:29pm »
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Paging the King. Clean-up in aisle 1.
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Re: READ THIS IF YOU ARE A CH SUFFERER!!!
« Reply #5 on: Jun 16th, 2007, 8:37am »
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Brewcrew - no need to play cop. We can have a nice discussion and maybe learn some things.  
 
Bonnie - testosterone may indeed be useful in cluster, but it is still early in the research process. Keep in mind, too, that sex hormones may have significant side effects - (actually, they are the MAIN effects) that might not be desirable.
 
Also note the references to melatonin. This stuff will not stop clusters consistantly, but may be useful in helping folks get some sleep without REM attacks.
 
And this link: http://www.usdoctor.com/cluster.htm    
I would not advise using this fellow's advice. Some of his information seems WAY old, and erroneouos. Note this quote: "Therefore, the only treatments are pain medication, steroids, possibly Lithium and Sansert."
 
I think there may be a few more treatments than those, and some very effective treatments, too: High flow oxygen, Imitrex and other triptans are effective abortives; indolamines (LSA, psilocybin) and calcium channel blockers are good preventatives. Odd that Dr. Lichten cites Kudrow, but does not mention oxygen...a look at some of the other pages on his site seem to indicate he is really pushing hormone therapy for all sorts of things.
 
And by the way, "pain medications" generally won't do much for clusters.
 
And the movie doesn't work.  
 
Anyway, bonnie, hang around. There is much to learn and discuss here. Unless you work for Dr. Lichten, in which case you may find things getting a little uncomfortable.
 
-tommyD
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Re: READ THIS IF YOU ARE A CH SUFFERER!!!
« Reply #6 on: Jun 21st, 2007, 12:50pm »
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Very funny Brew......very funny.....
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Re: READ THIS IF YOU ARE A CH SUFFERER!!!
« Reply #7 on: Jun 23rd, 2007, 5:15am »
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Didnt we get almost this exact same post a while back???
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Re: READ THIS IF YOU ARE A CH SUFFERER!!!
« Reply #8 on: Jun 23rd, 2007, 5:25am »
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on Jun 16th, 2007, 8:37am, tommyD wrote:
no need to play cop. We can have a nice discussion and maybe learn some things. ..............
 
-tommyD

 
Unless this person just happens to be a direct marketing copywriter in their day job, and can't turn it off when they are writing anything else then they are coming here to dump, abuse, steal or otherwise ill-advise on this board. Doesn't hurt to have a cop or two on the beat. If only to ask "who lurks there?"
 
Scott
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