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

Very Strange Sensations Today..

Lisa

Recommended Posts

Lisa Mentor
Lisa
Posted
  • Author

Boy you guys get up early. Tyl PM has done a great job. After breakfast, I'll be back. Thanks for checking in. Back soon.

Lisa

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

Celiac.com Sponsor (A8-M):


  • Replies 50
  • Created
  • Last Reply
CDFAMILY Rookie
CDFAMILY
Posted

Lisa, good luck with your withdrawal and hopefully you are supplementing with vitamins also.

My husband took Lexepro before being diagnosed with Celiac Disease. After taking this drug for about a year he started having major sleep problems. I also noticed a lot of limb jerking throughout the day. He did a sleep test and was diagnosed with Periodic Limb Movement with almost 9 movements an hour. The primary doctor called and told my husband he needed to take neurontin.

I had already read up on this and asked the doctor if the problem could be related to lexepro. She said she had never heard of it causing this problem. I said it was all over the internet and maybe we should wean him from lexepro as it was not helpful and was probably the cause. We did wean and the movements are now gone. And since going gluten-free in February, the mild depression has also left. Although I do not think that only the gluten-free diet did this. I also think it is because he takes mega vitamins especially B12 and B complex along with Vitamin D.

You can see from this how people that are sick, become sicker and sicker because many doctors only know how to treat with drugs.

Lisa Mentor
Lisa
Posted
  • Author

Ok Good Morning:

Up and about for about a hour and seem to feel so much better. The PM still lingers, as to the late morning sleep. I thought everyone got up at 10 :D .

Yesterday eve must have been the peak of withdrawal. Vertigo seems to have left, headach gone for now, and zaps don't seem to be around. So it seems like I am on the back side of this.

Let me try to answer some of your questions:

Dr. put me on lexipro soon after dx, which I was very resistant, since my daughter was put on paxil and did not like what I saw. Started with 5mg and it seems to make me bla, and felt that it took my personality away....just feeling dull. So he said try 10 mg and that seem to make me feel calm and peaceful. I grew to like that (considering hubby is very high strung and hyper, retired and always around :blink: )

After a year, after the wedding, I thought that it was time to stop, since I had a handle on the diet. But, most importantly, my insurance would not pay unless I used their mail order service, which would be difficult. I could not get a refill until my previous was out. It would not guarentee an uninteruped service.

So, I started to half my 10mg to 5mg over a period of maybe two weeks, then every otherday, then I had no more about 5 days ago. It took about 72 hours for the withdrawl effects to start.

First feeling very achy from the waist down...legs just ached. Dizziness started, then the shockers (thanks Judy for that Info), with a bad headach, contact lenses and eyes were very cloudy. Yesterday, I layed on the bed without even watching The Young and the Restless :huh: (I have to keep up with Karen). Just plain quiet was nice.

So, today it's appears to be much better. And just knowing that there were so many people looking out for me, I and sure that it speeded my recovery.

I'm not sure what the days will bring. I guess I have to learn about how I will be without lexipro. I would recommend that those who are considering going off, discuss it with a doctor before, as I never expected the response that I experienced.

Thanks guy, how comforting to know you all are there. I'll check in as the day progresses. xxoo

Lisa

Rikki Tikki Explorer
Rikki Tikki
Posted

Lisa:

You sound so much better today! :D

ravenwoodglass Mentor
ravenwoodglass
Posted
Ok Good Morning:

Up and about for about a hour and seem to feel so much better. The PM still lingers, as to the late morning sleep. I thought everyone got up at 10 :D .

Yesterday eve must have been the peak of withdrawal. Vertigo seems to have left, headach gone for now, and zaps don't seem to be around. So it seems like I am on the back side of this.

Let me try to answer some of your questions:

Dr. put me on lexipro soon after dx, which I was very resistant, since my daughter was put on paxil and did not like what I saw. Started with 5mg and it seems to make me bla, and felt that it took my personality away....just feeling dull. So he said try 10 mg and that seem to make me feel calm and peaceful. I grew to like that (considering hubby is very high strung and hyper, retired and always around :blink: )

After a year, after the wedding, I thought that it was time to stop, since I had a handle on the diet. But, most importantly, my insurance would not pay unless I used their mail order service, which would be difficult. I could not get a refill until my previous was out. It would not guarentee an uninteruped service.

So, I started to half my 10mg to 5mg over a period of maybe two weeks, then every otherday, then I had no more about 5 days ago. It took about 72 hours for the withdrawl effects to start.

First feeling very achy from the waist down...legs just ached. Dizziness started, then the shockers (thanks Judy for that Info), with a bad headach, contact lenses and eyes were very cloudy. Yesterday, I layed on the bed without even watching The Young and the Restless :huh: (I have to keep up with Karen). Just plain quiet was nice.

So, today it's appears to be much better. And just knowing that there were so many people looking out for me, I and sure that it speeded my recovery.

I'm not sure what the days will bring. I guess I have to learn about how I will be without lexipro. I would recommend that those who are considering going off, discuss it with a doctor before, as I never expected the response that I experienced.

Thanks guy, how comforting to know you all are there. I'll check in as the day progresses. xxoo

Lisa

I am so glad it is passing and you are feeling better. I hope the day goes well.

Judyin Philly Enthusiast
Judyin Philly
Posted

WHEW, LISA, SO RELIEVED TO HEAR THE GOOD NEWS.

I WAS AT THE 'MLD' THEARPIST THIS AM AND JUST GOT IN AND CKING ON YOU AND TANYA.

GLAD THE 'INFO' HELPED THAT 'WOLFIE' GAVE US. A GREAT SITE I DIDN'T KONW ABOUT..NOW ON MY DESK TOP.

HAVE TO ADD THIS AS MORE OF US ARE COMING OUT OF THE 'CLOSET' :ph34r::ph34r::o:o:o

Yesterday, I layed on the bed without even watching The Young and the Restless (I have to keep up with Karen). Just plain quiet was nice. :lol::lol::lol: WHEN I WAS USING AND THEN COMING DOWN FROM PREDIZONE I DID THE SAME...COULDN'T EVEN WATCH MY ONE SHOW AS I HAD TO HAVE QUIET...

ALSO WHEN I WAS FIGHTING THE CELLULITIS, IT WAS A GREAT COMFORT AND INFO AID TO POST DURING THAT TIME AND I KNOW 'WITHOUT A DOUBT' I COULDN'T HAVE MADE IT WITHOUT THE HELP OF THE FRIENDS ON THE BOARD...ESP IN THE DARK HRS OF THE NITE WHEN UP TAKING THE PILLS AND WAITING TILL I COULD LAY DOWN AGAIN.

PLEASE KEEP US POSTED, LISA, AND LET'S PRAY THE WORST IS BEHIND YOU.

JUDY

jerseyangel Proficient
jerseyangel
Posted

Hi Lisa :D Looks like you've "turned the corner"! So glad to hear it :)

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

Celiac.com Sponsor (A8-M):


covsooze Enthusiast
covsooze
Posted

Lisa, I'm coming off escitolopram at the moment too. I've had many of the symptoms you're having. Plus been crying a lot. Luckily a friend of mine whose also come off it warned me that she got very emotional for a while. It doesn't even come close to when I came off amitryptaline (sorry, can't spell these dreadful drug names!). I had only been on it for a few weeks but had hallucinations in the night when I cam off it, even though I came off slowly. I've never been so terrified in my whole life. It involved spiders....I'm amazed DH wasn't totally freaked by me screaming my head off and thrashing round the room trying to get away from the darn things....Anyway, please do pm me if you want to share this special time with me ;):D

CDFAMILY - I'm so pleased to have read your post!! I've just posted on the sleep forum about my worsening sleep problem. I think this drug might be the key! I always said to my psych nurse that my sleep had got worse since being on the drugs!! Can't wait to be off them completely.

Anyone know whether it's OK to take 5htp whilst on escitolopram? Just wondering if it would be a more 'natural' way to deal with my issues...

Guest BERNESES
Guest BERNESES
Posted

oh sweetie- I wasn't on this weekend and when I started reading this thread I just about had a heart attack. I've withdrawn from anti-depressants twice and it REALLY is hell. I don't know what the tapering process is like for Lexapro, but when I get to the end of a taper, I practically have to lick the pill because my body freaks.

Hang in there honey!!!!!!!!! It should get better and if not you get on the horn to that doctor of yours and find out how to ease the withdrawal. Hugs, Hugs, Hugs, B

Lisa Mentor
Lisa
Posted
  • Author

Update and question:

It has been two days and the "shocks" are gone, but the light headedness, vertigo, or dizziness are very active in the early evening.

Anyone know how long this withdrawal from Lexipro will take.? It feels like when you are drunk, cross your eyes and sway you head around.

This is the pitts How long will this last? Any one know. PM me if you want to be private.

Yikes, Yuck,

:(

Lisa

Guest BERNESES
Guest BERNESES
Posted

It depends- everyone is different. I'd say it should lessen over about two weeks- maybe less. hang in there!! Big hugs, B

Lisa Mentor
Lisa
Posted
  • Author

TWO WEEKS!!!! For real? I suppose now the next effect would be the crying and tears, which will totally freak Jim out. I wonder if sometimes these are medical advancements?

Don't like this feeling. <_<

Lisa

Guest BERNESES
Guest BERNESES
Posted
TWO WEEKS!!!! For real? I suppose now the next effect would be the crying and tears, which will totally freak Jim out. I wonder if sometimes these are medical advancements?

Don't like this feeling. <_<

Lisa

No no no. I'm just estimating!!!!!!!!!!!!!! Don't freak out yet. It really depends how long you were on it and how sensitive your system is. Lexapro is one of the better ones to wean off of (honestly- I have several friends who did). Paxil is supposed to be the worst.

Try to drink lots of water (it will flush out your system quicker) and try deep breathing with your eyes closed a few times a day.

I know, sometimes I think SSRI's are the most evil things on the planet. At least when you have to go off. HUGS,B

Guest Robbin
Guest Robbin
Posted

I agree with one of the previous posters-drs. are so irresponsible dishing out these drugs sometimes without knowing themselves just what the long term problems can be. I am so glad to hear you are feeling better. I missed this thread too and was shocked to see how bad the withdrawal was for you. One weird thing that happened to me when I quit an antidepressant a number of years ago-I think it was amitriptilin (sp?) was the awful restless legs. Bev was right on with the advice to stay well hydrated. It really does help flush out your system. Take care and see you in R'ville Ms. Mayor!! :D

Lisa Mentor
Lisa
Posted
  • Author

Hah, Mrs. Mayor: Well, Rachelville don't seem to have any problems to deal with other than bats and spiders.

Do we need to call a public forum to discuss the need to bannish both or work with the arachnids and flying mammals. Shoot, we can have a spider farm and feed all the biting insects to them at a far end of Rachelville and by the time the flying mammals are out at night, we will be in partying with the best made gluten free pizza on the planet, and toasting the communion of all of Rachelville.

Gosh, I would like to be in Rachelville right now...........bla.

I feel like a druggie, though not. I don't feel bad, I just feel weird. Didn't want to do it in the first place. From now on, let everyone use their gut feeling about taking perscribed drugs.

Mrs. Mayor, heck, a walk in the park. What I do here is a pain the the buttox.

Glad to accept the Position.

Lisa

Judyin Philly Enthusiast
Judyin Philly
Posted

WOW LISA, I PM'D TOO SOON. JUST CK'D THE FORUM AND SAW YOUR POST. I DON'T KNOW ANYTHING ABOUT THIS BUT CAN GIVE YOU A HUG... ;)

I went on 25 mg's of zoloft about 10 years ago cause all the people in my fibro swimming class said a non theraputic doze helps the fibro..well it helped the focus too and loved how it calmed me down and blood pressure with hydro chothyazide (?) seemed to contol it...soooo asked dr if i could go up 25 mgs to 50 and he said ok but everytime i did it the 'big 'd' came so still on 25 mgs...Lord that's a long time 10years..but now SCARED as hell to ever go off it... :ph34r::o:huh::blink::o:huh:

well won't worry about it now...

I sure hope your evening is better.

What time of day are you taking the pill that your tapering off of?

good lucky honey

judy

Rikki Tikki Explorer
Rikki Tikki
Posted

Judy:

I have had the same problem with D after taking 50 mg. of zoloft. I have heard this from other people and there was some thought that the zoloft might of caused the celiac to kick in. ANy thoughts on this?

I hope you get much better Lisa, you sure sound better

Lisa Mentor
Lisa
Posted
  • Author

Judy:

No more pills any more ..........for about 5 days. Scan back and see how I tappered off. Apparently, many recommed that it takes 4 weeks..........well, super woman that I am did it in two weeks.....crap.

I'm find during the day and feel very good, sort of revived. Around 4 or 5 in the eve., I get the dizzies. Turning my head too fast, or plain old turning my head. Very swooshy feeling. Clear of mind, not emotional, just swooshy in the eve. I assume this too will pass........Oh, the "shockers are gone" yeah. (check back posts on that one).

I know I will be ok. I do think that my posting can be helpful to people who are taking anti-depres. or any other SSRI's. It's good when your on it, but please consult a doctor before you decide enough is enough and choose to go off it. Please take is seriously. Comming off is not easy.

End of lecture.... Judy, just sent you a pm.

Lisa, I'll check in tomorrow.

Canadian Karen Community Regular
Canadian Karen
Posted

Lisa,

Logically, it would make sense that if you drank a bunch of water, it would flush it out of your system quicker..... It's worth a try......

Sheesh! Shoot me! I'm starting to sound like Spock!

Hugs.

Karen

Guest BERNESES
Guest BERNESES
Posted

Lisa- Most people do taper slowly. If you feel really crappy, you could get a pill cutter and take a tiny bit until you don't need anymore. Hang in there- I know how much it sucks- withdrawal is hell. I took ativan once three days in a row and had withdrawal on the 4th. WTH?????????????? :huh:

Lisa Mentor
Lisa
Posted
  • Author

B:

The cubbord is empty. But will guzzel the h20. Gotta be clear of mind and keep up with the mischief in Rachelville :rolleyes:

Lisa

Judyin Philly Enthusiast
Judyin Philly
Posted
Judy:

I have had the same problem with D after taking 50 mg. of zoloft. I have heard this from other people and there was some thought that the zoloft might of caused the celiac to kick in. ANy thoughts on this?

I hope you get much better Lisa, you sure sound better

Oh good grief :ph34r::o:blink::huh:

This is the first I've heard of this.

Is there a link somewhere about this.

Lordy another search...I'm so tried of this.. :(

wouldn't it be amazing if this was the trigger..what a terrifing thought!!!! :ph34r:

Judy

covsooze Enthusiast
covsooze
Posted

Lisa, I'm going down to 5mg as of tomorrow. You have inspired me to get a move on with this! I'm glad to have been on the lexapro as it's made a huge difference to me, but I really think the advice from the drs is rubbish about coming off them. It was actually my psychiatrist (the supposed expert!) who suggested I take just one week to come off 20mg completely!!!

DingoGirl Enthusiast
DingoGirl
Posted

Lisa - how did I miss this? I'm an expert on tapering off.....it takes more than weeks, can take a couple of MONTHs.....how are you now? I skipped some posts as I am wont to do.....but the tapering off is more like.....10 mg. for however long, then 5 mg. for 2 to 3 weeks, DAILY, then 5 mg. every other day for about 2 weeks, then every third day for two weeks, and so on. When you get the awful, spinning vertigo feeling, you MUST take the smallest dose available, which I think is 2.5 mg. DON"T BOTHER calling your doctor about elimination and weird symptoms - - in my experience he or she will just spout out with something about being careful about your dosage and decreasing, but they don't truly know unless they've been there.

You CAN get off this med, but it can take months to do it without the weird sensations. Just now I am weaning off Effexor, taking it about 2 times a week, and I know it's time to take a dose when I get the weird whooshing feeling and slight dizziness....but I've NEVER heard voices.....please let us know if that happens EVER again, but that could be simply from the overly fast withdrawal. IF you tell you doctor you're hearing voices and it's merely because of the tapering off - in other words, it'll go away - he might put you on some horrible anti-psychotic, as doctors tend to be SO EAGER to just write out any prescription for anything...But I am almost totally certain that your symptoms were ONLY due to rapid and incorrect withdrawal.

God bless and let us know how it goes.

Lisa Mentor
Lisa
Posted
  • Author

Susie:

You seem be be doing well the way you are doing it. Some one suggested to me to take lots of Vit. B, I am starting that and drinking lots of water.

Seem to be better today, but afternoon gets "swooshy". It will be 2 weeks next Tuesday to be totally off Lex.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748
    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    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

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • 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?
×
×
  • 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.