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Really - Wth?


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15 replies to this topic

#1 Joni63

 
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Posted 03 March 2011 - 01:56 PM

Had a sleep study two weeks ago. Just got off the phone with the doctor's office and they said it was normal. Have been taking Ambien CR for 6 months. If I go without it I toss and turn and only sleep about 3 hours a night. So I asked what can we do now to see why I can't sleep? They said the only thing you can do is take sleeping meds!!!!!


Honestly - there has to be other things that cause sleep disturbances!
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Joni


Dx'd with Celiac Disease 8/01/07

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#2 ravenwoodglass

 
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Posted 03 March 2011 - 02:20 PM

Have you recently tried to stop taking this med cold turkey? If you were taking it for 6 months straight you would need to taper off of it as it is addictive. Has your doctor had you taper the dose?
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 Joni63

 
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Posted 04 March 2011 - 11:09 AM

Have you recently tried to stop taking this med cold turkey? If you were taking it for 6 months straight you would need to taper off of it as it is addictive. Has your doctor had you taper the dose?


No they didn't offer to taper it, they just basically told me if I have trouble sleeping to keep taking it.

Yes I did have to stop taking it suddenly because of an insurance company screw up. They switched me to a generic which I found out later is not gluten free. Since I use a mail order pharmacy it took about 2 weeks to get the correct script. I also was not allowed to use it during the sleep study and I tossed and turned all night. Horrible.

Is there new information out on it that it is addictive? Two doctors in separate practices told me it wasn't. And I also read in the book "Fatigued to Fabulous" that is wasn't.
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Joni


Dx'd with Celiac Disease 8/01/07

#4 IrishHeart

 
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Posted 05 March 2011 - 12:54 PM

I had the WORST withdrawal from AmbienCR. I used it a few years ago for only one week for serious insomnia and no one told me to taper off it either. Be careful!!

Doctors tell you what the drug companies tell them--which are lies. How else would they sell more drugs? (JUST MY HUMBLE OPINION)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#5 Joni63

 
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Posted 05 March 2011 - 01:28 PM

I had the WORST withdrawal from AmbienCR. I used it a few years ago for only one week for serious insomnia and no one told me to taper off it either. Be careful!!

Doctors tell you what the drug companies tell them--which are lies. How else would they sell more drugs? (JUST MY HUMBLE OPINION)


Your probably right IrishHeart. It's all about making a buck (or several)! I waited years to take something though and nothing 'natural' was working either. My iron is low right now so that could be part of the cause.

What symptoms did you have? How can you taper AmbienCR when it's time released and your not supposed to cut it?
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Joni


Dx'd with Celiac Disease 8/01/07

#6 IrishHeart

 
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Posted 05 March 2011 - 01:39 PM

Your probably right IrishHeart. It's all about making a buck (or several)! I waited years to take something though and nothing 'natural' was working either. My iron is low right now so that could be part of the cause.

What symptoms did you have? How can you taper AmbienCR when it's time released and your not supposed to cut it?


I used all the natural stuff too...wide awake. :unsure:

Slowly, my natural sleep rhythm is coming back. I could barely get 1 or 2 hours....now, I get about 4 and I do wake up, but can often go back for 2 more. I also have severe pain issues, tho and that wakes me up.

As I recall, I felt nauseous, jittery, wired, anxious, felt like I was jumping out of my skin..(sort of like I feel on gluten). :o

To taper off, you skip every other night and then go 2 nights without, then 3... etc...and eventually, stop....

good luck I know how hard it is to be an insomniac. :(
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 Joni63

 
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Posted 05 March 2011 - 04:17 PM

I'm glad your sleep is getting better. It is very rough not getting much needed rest. Do you take meds for pain? Can something be done to relieve your pain?

Oh, thanks. It didn't occur to me to taper like that. :rolleyes: I will definately try it that way when I'm ready!

Have you ever tried light therapy? I tried it and it did work for me. The light has been broken for a while now and I just ordered another. I notice I have a much harder time in the winter due to the dark, dreary atmosphere in the Northeast.
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Joni


Dx'd with Celiac Disease 8/01/07

#8 IrishHeart

 
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Posted 06 March 2011 - 06:21 AM

I'm glad your sleep is getting better. It is very rough not getting much needed rest. Do you take meds for pain? Can something be done to relieve your pain?

Oh, thanks. It didn't occur to me to taper like that. :rolleyes: I will definately try it that way when I'm ready!

Have you ever tried light therapy? I tried it and it did work for me. The light has been broken for a while now and I just ordered another. I notice I have a much harder time in the winter due to the dark, dreary atmosphere in the Northeast.



Many, many drugs. No relief, just stomach pain. I gave up. I don't tolerate drugs well at all.

I live in the NEast, too--it is dreary. My cousin has one of those. Maybe I should investigate it. My Vit D levels are pretty good. I am just in pain. sigh....
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#9 Joni63

 
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Posted 06 March 2011 - 06:38 AM

Many, many drugs. No relief, just stomach pain. I gave up. I don't tolerate drugs well at all.

I live in the NEast, too--it is dreary. My cousin has one of those. Maybe I should investigate it. My Vit D levels are pretty good. I am just in pain. sigh....


I ended up buying the hat this time. Seems better cause I can workout or fix breakfast while getting light therapy.

Have your had your stomach issues checked out by a doctor? Maybe you need some antibiotics? There must be something going on that needs attention? I wish you the best at finding a solution. Pain will definately add to the insomnia.
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Joni


Dx'd with Celiac Disease 8/01/07

#10 IrishHeart

 
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Posted 06 March 2011 - 04:06 PM

Thanks. I'm done being scoped, prodded and tested. It's celiac. No need for antibiotics. (they're part of the reason I'm in this mess). I meant that drugs give me stomach pain. Since gluten-free, My stomach doesn't hurt :)
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#11 Joni63

 
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Posted 07 March 2011 - 03:12 AM

Thanks. I'm done being scoped, prodded and tested. It's celiac. No need for antibiotics. (they're part of the reason I'm in this mess). I meant that drugs give me stomach pain. Since gluten-free, My stomach doesn't hurt :)


Oh, I'm glad your pain is gone.

Seems a lot of people get relief from the diet and feel better, but the tests don't always show the whole picture. If you know you feel better on it, then that tells you a lot! My mom is a classic case of that. But if you ask her she couldn't possibly have Celiac because the scope didn't show it. Ugh! Luckily she follows the diet pretty well, except for an occasional cheat. My sister and I both have talked until we are red in the face, and she's just going to do what she wants.

Yes, antibiotics can really take their toll...I have 2 more days and I can't wait to be done!
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Joni


Dx'd with Celiac Disease 8/01/07

#12 maryanno

 
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Posted 14 March 2011 - 01:16 PM

Had a sleep study two weeks ago. Just got off the phone with the doctor's office and they said it was normal. Have been taking Ambien CR for 6 months. If I go without it I toss and turn and only sleep about 3 hours a night. So I asked what can we do now to see why I can't sleep? They said the only thing you can do is take sleeping meds!!!!!


Honestly - there has to be other things that cause sleep disturbances!




Ambien CR has gluten in the coating. I took it one night and it kept me awake all night and had bad D. I have switched to the generic for Ambien which is Zolpidem. I take a high dose, but it works great!
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#13 cap6

 
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Posted 14 March 2011 - 07:26 PM

I am SO glad I read this. I take zolpiderm & have for several years however have 2 full bottles of Ambien. Guess I'll be trashing those!


Ambien CR has gluten in the coating. I took it one night and it kept me awake all night and had bad D. I have switched to the generic for Ambien which is Zolpidem. I take a high dose, but it works great!


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#14 Joni63

 
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Posted 15 March 2011 - 01:51 AM

I am SO glad I read this. I take zolpiderm & have for several years however have 2 full bottles of Ambien. Guess I'll be trashing those!



My prescription company called the manufacturer and they said the Ambien CR is gluten free (brand name). I called one ofthe pharmaceutical companies that makes the zolpidem and was told it is NOT gluten free. Ambien CR is also listed on the gluten free drug registry as gluten free as of feb/2011. Looks like I'm placing another phone call...I'll let you know what I find out.
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Joni


Dx'd with Celiac Disease 8/01/07

#15 Judy3

 
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Posted 15 March 2011 - 03:28 AM

Sleep - 3 mg of Melatonin at night does the trick for me. I also have a CPAP machine as my tests weren't normal. I have Central Sleep Apnea. Don't snore, don't have an obstruction, just a brain that forgets to tell me to breath when it's sleeping. I think it feels like it's worked hard all day and it needs it's rest too... (just making light of me!!)
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*Judy

Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010




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