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Topic: Something to think about.... (Read 482 times) |
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BarbaraD
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Something to think about....
« on: May 30th, 2007, 12:39pm » |
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Has anyone ever thought about Chronic Fatigue Syndrom in relation to CH?
I'm chronic and have been thinking about it lately. I seem to be completely tired all the time. Haven't gone on the net and researched this (not real good at that).
I've always been hyper (even with the headaches) but the last few years have just gotten completely blah.
Just a thought.... don't know if anyone else has noticed feeling this way. It may be I'm just running out of steam...
Hugs BD
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seasonalboomer
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Re: Something to think about....
« Reply #1 on: May 30th, 2007, 12:49pm » |
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could be you're just getting old Barbara...............ducking, running for cover........
Scott 
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Tara Ann
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Re: Something to think about....
« Reply #2 on: May 30th, 2007, 2:41pm » |
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I've got fibromyalgia and chronic fatigue syndrome commonly goes hand in hand with it. It is something to think about in conjunction with Ch...
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Wayne
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Re: Something to think about....
« Reply #3 on: May 30th, 2007, 3:43pm » |
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I don't know about CFS but I have no doubt that fatigue increase both the number and strength of the hits.
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ClusterChuck
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Re: Something to think about....
« Reply #4 on: May 30th, 2007, 6:15pm » |
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on May 30th, 2007, 12:39pm, BarbaraD wrote:| may be I'm just running out of steam... |
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Freekin' OLD wiiminz!!! As matter of fact, DAMN old wimminz!!
Sheesh!!!!!
Maybe it is time to go to the body scrap yard, and pick up some newer used body parts ....
Chuck
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michael
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Re: Something to think about....
« Reply #5 on: May 30th, 2007, 6:15pm » |
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I've been episodic for 40 years. Over the last 10 years I've noticed that that I feel tired all the time.
I've mentioned it many times to my doc and I've been sent for many blood tests that have all been negative. All my doc seems to want to rule out all the time is diabetes.
Have never thought of them before in relation to CH
Mike
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chewy
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Re: Something to think about....
« Reply #6 on: May 30th, 2007, 7:51pm » |
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Spooky. I had that conversation with a couple of co-workers just today.
I've been living on coffee and ibuprophen.
I'm starting on Spectrum daily vitamins tommorow.
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Annette
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Re: Something to think about....
« Reply #7 on: May 30th, 2007, 8:02pm » |
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Daniels first 2 cycles of CH were misdiagnosed as CFS. Many people with CFS have problems with hypothalamus functions and frequent headaches also.
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BarbaraD
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Re: Something to think about....
« Reply #8 on: May 31st, 2007, 7:45am » |
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Question Annette,
Is there anything you can do for CFS (if that's what it is)?
I just want some energy back. Vitamins ain't doing it.
I eat a lot of protien, drink a lot of water, drink alcohol in moderation (not much at all) - vices - coffee and tobacco (smoke too much), exercise - not much. Have arthritis, but try to ignore it. All blood tests show me in good health (except for being OLD - hey, my doc said that). I've always thrived on stress - the more the better I feel (usually).
I don't like me feeling this way.... HELP!!!!
Hugs BD
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Annette
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Re: Something to think about....
« Reply #9 on: May 31st, 2007, 8:57am » |
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Hi Barbara
You might like to check this website out. This is the website by the CFS spec who diagnosed Daniel with it.
http://www.cfsdiscovery.com.au/
There are tests and questionaires that one can fill out to see how one scores on the CFS scale.
The amazing thing is many of those symptoms overlap CH and bipolar disorder, which is another condition caused by hypothalamus malfunction and serotonin imbalances.
I still have all those questionaires here, if you would like to take a look let me know and I will email them to you.
Basically there is no cure for CFS ( surprise ! surprise! ). The "treatments" are about taking vitamins and amino acids and having a regular sleep/wake cycles and regular exercise.
Apparently people with true CFS go through cycles as well, high and low ones. Interestingly, they often find Taurine, magnesium, calcium, potassium and omega -3 supplements useful, which are also good for CH.
There are many conditions that seem to link back to the hypothalamus, if somehow we can find the way to make that master gland work properly, we will have a cure for a whole hosts of condition all at once.
A great big hug and painfree wishes to you, my dear.
Annette
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midwestbeth
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Re: Something to think about....
« Reply #10 on: May 31st, 2007, 8:59am » |
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Barbara,
This post is like you were reading my mind. In the last year I've been tested from head to toe and I'm told everything is in the normal range with the exception of having my right throid removed. Tests after still did not show anything abnormal.
I'm still TIRED ALL THE TIME!!! I take a multi vitiman everyday, try to eat right, stretch, exersize, etc.........still I feel as if I have no energy. It's as if I turned 40 and some switch flipped and drained all the evergy from my body.
I also noticed that I have aches and pains that did not exist before. I cannot sleep on my side anymore or I will wake up with my hip on fire. I have also lost alot of strength in my hands.
I still hesitate to say I'm chronic even though I fit the deffinition. I've only been dealing with ch for a little over a year and I still hold out hope that I can get the 30 day pf time. Only time will tell.
Beth
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BarbaraD
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Re: Something to think about....
« Reply #11 on: May 31st, 2007, 9:55am » |
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Ok, I'm gonna do some research (ugh) but from what I'm reading so far -- I ain't alone (where have I heard this before). The hypothalamus is screwing up "other" things too.
No wonder we're all so messed up. Maybe we ARE hitting on the CAUSE for our problem. Now if we can just get the right research into it -- there might just might be a CURE lurking on the horizion. At least it's a hope.....
Hugs BD
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Wayne
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Re: Something to think about....
« Reply #12 on: May 31st, 2007, 10:53am » |
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I've always been hyper (even with the headaches) but the last few years have just gotten completely blah.
Just a thought, you said on the other thread that you've been on Topomax forever, isn't it that that's making you feel blah? It definitely made me feel blah, since I stopped it I feel quite new.
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NoMoreCH
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Re: Something to think about....
« Reply #13 on: May 31st, 2007, 3:16pm » |
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Yes, I feel much, much more drained during cycles and slightly depressed as in not wanting to do anything... Even loss of appetite.
My solution is to try and exercise, work in garden or play golf when I can, it raises the energy levels (and might even lower the frequency if the attacks but I cannot confirm this)
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BarbaraD
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Re: Something to think about....
« Reply #14 on: May 31st, 2007, 4:38pm » |
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Wayne, the weird thing about the topo is that it made me more hyper than I was already. Sometimes meds do that to me - have the opposite effect.
I can drink a pot of coffee at night and fall asleep right away -- I was on a plane to Australia one time and thought I'd just sleep the whole trip... got me some NO DOZ -- that was a mistake - stayed awake the whole flight - never tried that one again. 
so it's something else besides the meds.
Hugs BD
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Brew
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Re: Something to think about....
« Reply #15 on: May 31st, 2007, 5:00pm » |
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on May 31st, 2007, 7:45am, BarbaraD wrote:| All blood tests show me in good health (except for being OLD - hey, my doc said that). |
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Barb - You gotta get a doc that's the same age as you. That way your doc can't blame anything on old age!
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ClusterChuck
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Re: Something to think about....
« Reply #16 on: May 31st, 2007, 6:50pm » |
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on May 31st, 2007, 5:00pm, Brewcrew wrote:| Barb - You gotta get a doc that's the same age as you. |
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They don't allow them to get as old as Barbara ... They shoot them before getting THAT old.
Chuck
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Tara Ann
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Re: Something to think about....
« Reply #17 on: May 31st, 2007, 7:07pm » |
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Wow chuck you sure are cruisin' for a bruisin'!!!
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Re: Something to think about....
« Reply #18 on: May 31st, 2007, 9:29pm » |
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I don't know squat about CFS. I just wanted to add that I've never heard of any connection between CFS and CH.
Maybe you have just been partying too much !!
Best Wishes
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BC_Battler
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Re: Something to think about....
« Reply #19 on: Jun 1st, 2007, 4:26am » |
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Wow, this thread couldn't be more timely!
I have been EXHAUSTED through this entire cycle, which has lasted almost a month now. I get frequent cycles, about 4 a year, and I find that I am so tired all the time, it's ridiculous.
Caffeine helps, but I don't want to make it a habit.
Anyway, sorry to hear you are fighting the pain. Don't worry about the tired feeling, you'll find a way to work with it. 
Cheers
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BarbaraD
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Re: Something to think about....
« Reply #20 on: Jun 1st, 2007, 6:55am » |
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Ok, Chuckie -- you know ya got one coming -- AND my doc IS about the SAME age (oh I got my shots in on that one when he told me that - he used to have the "prettiest BLACK hair"
And as to the partyin' Well that may be it -- have been stayin' up till after 8 o'clock at night. Gotta watch that 
Chuck, you just watch your back....
Hugs BD
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midwestbeth
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Re: Something to think about....
« Reply #21 on: Jun 1st, 2007, 4:13pm » |
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Many meds seem to have the oppisite effect on me also. I could never take Benedryl at night, it makes me very hyper and my scalp feels all tingly.
I make a pot of coffee every night and it has never prevented me from going to sleep.
Even when I'm going through an insomnia phase, I still feel drained of energy.
I'm still pissed they took Metabolife off the market. I took that when I was feeling blah and always felt much better. It really did help boost my energy and also with weightloss (20 lbs). I took it for 3 years, no more than 3 pills a day max, not daily, and suffered no ill effects that I know of.
Beth
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mynm156
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Re: Something to think about....
« Reply #22 on: Jun 2nd, 2007, 11:27pm » |
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I dnt knw I do seem more run down after an attack but I just thnk that it is due to the Post Cluster Exhaustion!!!.
Lots of Cluster LUV
MYNM156
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