Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Really - Wth?


Joni63

Recommended Posts

Joni63 Collaborator

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

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?

Joni63 Collaborator

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.

IrishHeart Veteran

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)

Joni63 Collaborator

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?

IrishHeart Veteran

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. :(

Joni63 Collaborator

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

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....

Joni63 Collaborator

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.

IrishHeart Veteran

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 :)

Joni63 Collaborator

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!

maryanno Newbie

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!

cap6 Enthusiast

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!

Joni63 Collaborator

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.

Judy3 Contributor

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!!)

Joni63 Collaborator

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!!)

I've tried melatonin 5mg time release version with no luck. My doctor is now telling me low iron can cause sleep issues.

Also just an update on the Ambien CR. Just got off the phone with Sonofi-Aventis and Ambien Cr is not made with any gluten ingredients. It is not certified or tested to be gluten free, but has no ingredients in it that contain gluten. The company that I called (Teva) that had the generic zolpidem tartrate told me they cannot gaurantee theirs is gluten free.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,763
    • Most Online (within 30 mins)
      7,748

    Donna Williamson
    Newest Member
    Donna Williamson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      For back pain, I take a combination of Cobalamine B12, Pyridoxine B 6, and Thiamine B 1 (in the form Benfotiamine), which have an analgesic effect.  These three B vitamins together work way better than those over the counter pain relievers.  Theses are water soluble B vitamins that are easily excreted via the kidneys if not needed.  Thiamine will also help the nausea. Interesting Reading... Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/#:~:text=Some of these processes include,Analgesics
    • knitty kitty
      @stephaniekl, welcome to the forum, Is your daughter taking any nutritional supplements?   Weight loss and failure to thrive are two symptoms of thiamine insufficiency.  Thiamine deficiency symptoms are not recognized as such by doctors.   I experienced similar symptoms when I became malnourished.  Thiamine deficiency symptoms can become worse quickly, and can affect one emotionally and mentally.  Although blood tests for thiamine aren't accurate, do have your daughter checked for nutritional deficiencies.  Thiamine B 1 works with the other B vitamins and magnesium.  Thiamine and Niacin B 3 help improve Gerd.  All the B vitamins are frequently low due to malabsorption.  Vitamin D will help calm the immune system.  Thiamine helps the immune system fight off viruses like those tick borne illnesses.   Thiamine Mononitrate, which is in many vitamin supplements, is not bioavailable.  I was taking a multivitamin containing thiamine mononitrate and still became deficient in thiamine. Thiamine in the form Benfotiamine has been shown to promote intestinal healing.  A form called TTFD (tetrahydrofurfuryl disulfide) is also excellent for correcting thiamine deficiency.  A combination of Thiamine, Cobalamine B12, and Pyridoxine B 6 has analgesic properties.  I take it for back pain.   Keep us posted on your progress! Interesting Reading... The importance of thiamine (vitamin B1) in humans https://pmc.ncbi.nlm.nih.gov/articles/PMC10568373/#:~:text=Thiamine absorption in the jejunum,system [51–53].
    • trents
      Has prednisone or some other systemic steroid been tried that might quiet her immune system down for a while? I have two acquaintances with Lyme's disease. It is a wicked condition that has long fingers.
    • stephaniekl
      We have.  She is so limited as to what she can eat.  She has a nutritionist, but they are even at a loss.  Right now, her pain is so significant that she can only eat 5-10 bites a meal.   We just got some labs back today and she is hypoglycemia, anemic and her immune system is shot.  She also is positive for 3 tickborne illnesses.  Thanks for your help! 
    • RMJ
      A much better suggestion than that of the new doctor!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.