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godsjoy777
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Huge help for this cycle
« on: Jul 11th, 2007, 11:19am » |
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He everybody,
I haven't been on the board for awhile, but some of you might remember me and my husband ( Karen & Calven) at the Dallas Clusterhead convention a couple of summers ago. I remember Noni, Clusterchuck, Eric, Lionsound, and Lelimey ( Helen). I do remember others but not names....so sorry.
All that to say I have been a cluster sufferer for approx 16 years. My cycles started to be 1 1/2 months long-increased to 3 months for quite some time and then after starting Verapamil and Zonegran for preventatives
(which did nothing but give me constapation and listlessness), the cycle went for a whole 9 months....pretty scary....
After reading that the very meds that were "supposed to help" actually caused episodics to become chronic.....and when the clusters were comming 4-5 times per night and another 3-4 during the day and my Dr was wanting me to go into hospital and get on steroids....I just said ....NO! I weened myself off all the meds except Oxygen for abortive and meletonin and magnesium at night....
The next year was about 5 months long...with a few hard kip 9s that broke through and this years cycle was incredibly easy....and I believe it is because of some nutritional products I started taking....
A friend presnted these glyconutritional to my husband and me last year...We looked at the science and thought it was interesting but didn't do anything at that time....You know...I wasn't hurting at the time and we didn't want to spend the money....THEN my cycle hit....pretty heavy right away..I started gettingt hit for 2 weeks straight with 4-5 hits per night....I knew I was due and this was going to be a new battle.....My husband and I decided to change our schedules around and take a vacation in April as opposed to waiting 'till I was in the hardest part of my cycle....We packed up 4 tanks full of oxygen and headed for Colorado Rockies....(Praying for no accident with all those tanks in the trunk...  ). My friend said....just TRY this stuff....what would it hurt???? So I bought a tub of Ambertose....and started taking it as recommended on the tub.....In one weeks time I was completely headache free....We hiked 3 hours every day...(never would have made it like that before without major hits!)....BUT....I was still in the battle....I could feel the clusters trying to break through so I started to up the amount of Ambertose little by little 'till I was taking 8 tsps per day....(I was told it was ok to do as it is only nutrients that help my cells communicate so my own body can do the fighting against the clusters.....I have had the easiest cycle ever....At one point I tried to lessen the amount to see what would happen and the clusters were trying to break through....so I upped the amount again and I have never felt so awesome during what I know to be a cycle......
You can shout me down if you want to but I never want to be without these nutritional products again...
My husband of course wanted to see what would happen if he took them too and he has more energy than ever....He is a kidney transplant patient that is 10 years out....looking forward to his next check up....he knows it will be better than ever.
I take the phyto vitamins, antioxidant, endocrine support, ambertose, meletonin (9-12 mgs) and a magnesium at night.
I'm not pitching to sell anything....just wanted to share what was helping my quality of life after 16 years worth of hell.....I was very jaded and skeptical as you all know we can get but I had nothing to lose but the pain....and I can tell you I never once had a killer cluster break through this whole cycle....nearly pain free the whole time....
Blessings!
Karen
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E-Double
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Re: Huge help for this cycle
« Reply #1 on: Jul 11th, 2007, 1:10pm » |
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Hi KAren,
Glad you found relief!!!!!
E
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godsjoy777
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Re: Huge help for this cycle
« Reply #2 on: Jul 11th, 2007, 1:33pm » |
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Thanks Eric.....me too!
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Guiseppi
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Re: Huge help for this cycle
« Reply #3 on: Jul 11th, 2007, 2:20pm » |
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If you had ended your post with something like "And if you order now.....  ".....I'd have been REALLY skeptical!!! Sounds like you may have found something that works for you. I'd still keep the 02 tanks handy, knowing how these things can morph on you.
Can you post what the supplements are called and where I can go to look at them? I know I'm one of the more open minded types but I'd like to see what it's all about to see if it'll fit into my CH arsenal. Hoping your remission is a looong one!
Guiseppi
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vietvet2tours
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Re: Huge help for this cycle
« Reply #4 on: Jul 11th, 2007, 2:39pm » |
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Three years painfree. I smoke a lotta herb,I ain't against a little toot now and then.I drink Jim Beam Bourbon and Pabst blue ribbon beer.Smoke camel straights. I keep my O2 ready and waiting.PF just happens
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godsjoy777
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Re: Huge help for this cycle
« Reply #5 on: Jul 11th, 2007, 2:39pm » |
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Hi guissepi,
Check your e-mail
Blessings,
Karen
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godsjoy777
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Re: Huge help for this cycle
« Reply #6 on: Jul 12th, 2007, 10:57am » |
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I know the Clusters can morph, Vietvet.....but when I have tried to lesson the amount of Ambertose.....I started to get hits again....so you can see why I can actually pinpoint the help to the Ambertose....as well as the 12 mgs of Melatonin.....I can't lesson the amount of either one ....yet....
Blessings!
Karen
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southwalessunshine
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Re: Huge help for this cycle
« Reply #7 on: Jul 12th, 2007, 6:11pm » |
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This sounds really interesting, and to be honest I'll try anything once. Something out there has to work we just gotta stumble over our thing. is there any chance you could send me a little more info? That would be really appreciated x
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thebbz
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Re: Huge help for this cycle
« Reply #8 on: Jul 12th, 2007, 10:19pm » |
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Colorado Rocky Mountian High. Glad it worked for ya. Hope it stays that way. I am skeptical. Let us know when the demon appears. I wouldn't throw away the 02
all the best 
jb
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sandie99
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Re: Huge help for this cycle
« Reply #9 on: Jul 13th, 2007, 3:40am » |
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Karen,
I'm glad that you have found relief!
Personally, I've been one of those who'll try nearly anything once to see if ít works for my clusters (that's how I found out that Red Bull helps me), so it's great that you shared what helped you.
I hope that it keeps on working!
PF days & nights & years,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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chewy
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Re: Huge help for this cycle
« Reply #10 on: Jul 13th, 2007, 6:14am » |
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Quote:| Three years painfree. I smoke a lotta herb,I ain't against a little toot now and then.I drink Jim Beam Bourbon and Pabst blue ribbon beer.Smoke camel straights. I keep my O2 ready and waiting.PF just happens |
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LMAO!
Coming to a "Museum of Science" near you!
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godsjoy777
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Re: Huge help for this cycle
« Reply #11 on: Jul 13th, 2007, 9:04am » |
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Trust me, I would still never be without my oxygen....panick city.....It is always by my bed, but I have rarely had to use it this cycle....Yippee!!!!
I have a tooth abcess that has been fighting me so I am putting the Ambertose directly on the abcess and taking more to see what happens....They say it usually takes a good 6 months to see real change at the cellular level....and it has only been 3 months on the stuff....We shall see what happens!
Blessings Y'all!
Karen
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Charlotte
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Re: Huge help for this cycle
« Reply #12 on: Jul 13th, 2007, 11:19am » |
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Hi, Karen. You might want to get that abscess checked out. It could be a cracked root or something. While you are fighting it, it may be resorbing bone. (Just happened to me.) Good luck with it.
Charlotte
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| « Last Edit: Jul 13th, 2007, 11:21am by Charlotte » |
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Patrick_A
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Re: Huge help for this cycle
« Reply #13 on: Jul 13th, 2007, 4:10pm » |
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Man, I love hearing about the natural remedies. Medicines are just way too harsh!
I never had more than 1 CH a day till I found Imitrex. Imitrex gave me harsh rebounds and Mee-graines.
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seasonalboomer
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Re: Huge help for this cycle
« Reply #14 on: Jul 13th, 2007, 4:36pm » |
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on Jul 11th, 2007, 11:19am, godsjoy777 wrote:HI take the phyto vitamins, antioxidant, endocrine support, ambertose, meletonin (9-12 mgs) and a magnesium at night.
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I had to re-read this as the first time I read it I thought I read:
Amber and I Fight over vitamins because she's so anti-support and there's no end to her crying. At night we mellow out in a oxidant bath that we put our toe in.
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billyjoe
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Re: Huge help for this cycle
« Reply #15 on: Jul 13th, 2007, 5:39pm » |
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Thanks for sharing! I did some googleing and ended up ordering some. It sounds safe and helpful for CH and potentailly other ailments that I am afraid I might get. I'm not sure I believe all of the claims such as growing stem cells, but my family has a history of dementia, so this may help.
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godsjoy777
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Re: Huge help for this cycle
« Reply #16 on: Jul 13th, 2007, 6:20pm » |
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"Amber and I Fight over vitamins because she's so anti-support and there's no end to her crying. At night we mellow out in a oxidant bath that we put our toe in. "
I must admit that was pretty funny....You worked hard at that one... 
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nani
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Re: Huge help for this cycle
« Reply #17 on: Jul 14th, 2007, 1:27am » |
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Hi Karen!!!!!!
I've missed you, girl! I'm glad you're getting a break, no matter the reason. Come around more, OK?
hugs to you and Calven, nani
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michael
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Re: Huge help for this cycle
« Reply #18 on: Jul 14th, 2007, 8:14am » |
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I have to agree with Patrick.
I only had one hit a day till I found Imigran injections.
Thought id found the wonder drug, but it spiralled them almost out of control.
Mike
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godsjoy777
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Re: Huge help for this cycle
« Reply #19 on: Jul 14th, 2007, 8:17pm » |
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HI THERE NONI!!!!!!!!!!!
Calven says hi too........I will try to come around more often......How are you doin?
Yep, Michael...I'm tracking with you too....TOOOOOOOOOOOOOOOO many side effects for my blood.....I think the Pharmaceutical companies just LOVE us cluster sufferers as we get them richer and richer and nobody gets better.....YES I am a believer in the conspiricies....sorry....
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| « Last Edit: Jul 14th, 2007, 8:19pm by godsjoy777 » |
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