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

Help .. How Do I Know When To Stop Seizure Meds ?

marciab

Recommended Posts

marciab Enthusiast
marciab
Posted

I am so confused .... I reduced my Klonopin from .5 mg to .0625 mg (appr. since I am splitting the pills) over a two month period because it was making me feel completely drugged. Then two days ago, I tried to stop it completely, but had tremours so bad I had to take it again. I couldn't sleep either.

The problem is that I don't know if I got gluttened and that is why I felt so crappy. Or if I had withdrawal symptoms and I just need to stay on the reduced dosage. .0625 is such a small amount. Can it really be necessary to take it ? Do celiacs, after they have eliminated the gluten, respond to a much lower dose than most people ?

I had a few restless nites while going down on the dosage, but this is the first time I had tremours or felt wide awake all nite. Each time I reduced my dosage, I felt better and slept 7 - 9 hours within 3 days. And within a few days started feeling drugged again.

Also, I am wondering how much of this is psychological ? <_<

How did those of you who were having seizures or myoclonous know when it was safe to stop taking your meds ? I've only been gluten-free for 9 months, so maybe it is too early still.

It is entirely possible that I got gluttened from dry roasted peanuts at Wild Oats. :ph34r:

Thanks ... Marcia

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Marcia, you're right, you could have been glutened by the peanuts. But it could also be that it was withdrawal symptoms. I know that the amount of medication you were taking was very small. But would you be able to split that in half again, and take an even smaller amount for a while? You might need to do that before going entirely off the meds.

In my opinion, now that your villi are healing, your body is taking up a lot more of the medication than before going gluten-free, and might get as much medication out of half a pill now, as it did from the whole pill before.

Also, it takes usually longer than nine months to completely heal after going gluten-free, and you may not be ready to be completely off your meds. So, try cutting it in half again, and see what happens. If that works, stay on that dose for a couple of months and try going without again.

I hope you work it out!

marciab Enthusiast
marciab
Posted
  • Author

Ursula,

Love the picture of you and the baby. :D

I'm sorry to see that you have been through a lot of illness too. I love that we have figured this out and wish others could too. Are you better or still making progress ?

I am down to 1/8 of a tablet, but I guess I can find a way to reduce that even if I have to bite it off. :P

Marcia

Ursa Major Collaborator
Ursa Major
Posted
Ursula,

Love the picture of you and the baby. :D

I'm sorry to see that you have been through a lot of illness too. I love that we have figured this out and wish others could too. Are you better or still making progress ?

I am down to 1/8 of a tablet, but I guess I can find a way to reduce that even if I have to bite it off. :P

Marcia

Thanks, Zoey is a sweetie for sure!

I am still getting better, and may never be entirely well. 52 years of damage is a lot. But I am a lot better than I was a year ago! And I am off all pain killers (except for having to take one maybe once every three weeks or so, when I have eaten something wrong).

Well, rather than biting it off, you could just crush it and put some of that powder in a spoonful of applesauce? That might be the easiest way.

marciab Enthusiast
marciab
Posted
  • Author

That's great that you are off of your pain meds. Were you able to stop them all at once or did you have to wean off of them ? It's exciting to watch the progress, I just wish it was quicker. :D

Good tip, I will try crushing it and putting it in applesauce.

Figuring out which foods are causing non digestive issues is so tricky. I figured out the "D" and "C", cramping, etc related to wheat quickly, but the other symptoms are so much harder for me to pin down.

I had forgotten that my stomach has been a little torn up for the last 3 days so I probably got ahold of something else that didn't agree with me. I tried raw goat cheese this past week. <_<

I am 50 also, so we have been at this a long time. Hope we will both feel better soon. :D

Marcia

mouse Enthusiast
mouse
Posted

I went off the Klonipin about a week ago because it has corn it it. I noticed my tremors got worse and that I could not get a good nights sleep for several nights. But, this all passed. I was on the .5 also and had to quit it cold turkey. Good Luck.

Ursa Major Collaborator
Ursa Major
Posted

Good for you, Armetta! That should give Marcia some hope, I'm sure.

Marcia, I was on 50 mg of codeine contin (12-hour-release) twice a day for four years, and often had to take 100mg at night (which was permitted). That just took the edge off the pain, barely enough to function. Many times I had to supplement that with extra strength Tylenol, when the pain got too bad (it was everywhere, but especially in my legs and back, but sometimes my hands and forearms would ache so badly I felt like screaming).

I just quit cold turkey, with no withdrawal symptoms whatsoever. The reason for that is, that with people with chronic pain, painkillers go straight to the pain receptors in the brain, and won't cause addiction. Studies have been done to prove that, and I am living proof that it's true.

I tried goat cheese a while ago, too, and it didn't seem to be a very good idea.

It looks like we have a lot in common. There aren't too many older people here.

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

Celiac.com Sponsor (A8-M):


Ruth52 Newbie
Ruth52
Posted

I had been taking 0.25mg Rivoltril (Klonopin) for 18 years ever since I had a brain cyst removed. The Rivotril was to stop excess eye movements that had resulted from the cyst. On the advise of my Endo. who didn't think that such a small dose would be doing any good I weaned myself off it 18 months ago.

The resulting health issues were subtle but debilitating. Loss of balance, confusion, tiredness, fatigue etc. My GP then put me back on the Rivotril and I haven't looked back. Obviously the brain cyst has still has an effect on my neuro system and the drug even in such a small dose makes a difference.

Maybe your body is telling you that it can't function effectively at the moment without the Klonopin.

Ruth.

marciab Enthusiast
marciab
Posted
  • Author

Armetta,

That's great that you could stop cold turkey like that. It definitely gives me hope. Are you still ok ? How long had you been on the Klonopin ?

I'm afraid that since I have been on Klonopin / a seizure med for about 16 years now, my body may not be able to function without this med.

I didn't realize Klonopin has corn in it. I am just using a generic, so I am not sure what all is in it.

Ursula,

Did you try the raw cheddar goat cheese ? I heard it was less offensive to sensitive stomachs. The first few bites were heaven. I had a bunless buffalo cheese burger. :) I've backed off it to see if it is causing problems though. I have the feeling those peanuts need to go too. They taste too much like Planters dry roasted peanuts.

Ruth,

That's what I am thinking. <_< Unfortunately the only way to find out is to try to stop taking it. If it turns out that I need it that's ok too as long as I am not feeling drugged from it. I'm sorry to hear that you had a brain cyst. Is everything ok now ?

Thank you all for replying. I'm not sure how much of what I am feeling is just anxiety and it helped just to hear others experiences.

Marcia

  • 1 month later...
marciab Enthusiast
marciab
Posted
  • Author

Well ... drum roll please ..........

I stopped taking Klonopin Friday nite and have been seizure free for about a week. No jerking at all during the day either. :D:D

I am so excited and yet scared at the same time. Is it going to last ?? :ph34r:

I have been using chamomile tea to calm my nerves at nite so I would stop freaking out about not taking a sleep / seizure med. And keeping the tv on so if I did wake up, I would be distracted by it. :unsure:

Can any of you who have had nocturnal myoclonous or seizures can relate to this ? <_<

I'm also worried that I am not sleeping deep enough to keep my fibro pain from coming back. How long do you think I have to wait before I can be sure that I'm not going to start jerking again ?

Thanks Marcia

Rikki Tikki Explorer
Rikki Tikki
Posted

[it looks like we have a lot in common. There aren't too many older people here.

marciab Enthusiast
marciab
Posted
  • Author

Me too. I felt terrible every time I tried to reduce the dosage when my body wasn't ready. I had to go up and down on it several times during the last month just to stop the jittery feelings.

I was hanging in there at 1/16 of a tablet forever.

Now, I am a little jumpy, but I can live with it. At least I am not jerking :D:D:D

Welcome to the club ... What are your birthday plans ? We went on a cruise, but I was on the elimination diet and really couldn't enjoy it as much as I should have. Still, it was nice to get away. :)

Were you taking it for seizures ?

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,330
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.