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levity101 my son's Lyrica taper


levity101

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Hi everyone,

I am seeking support and information for my 24yr old son as he tapers off Lyrica. He has a history of chronic Lyme disease and other co-infections since early childhood and has a continual headache pain for over 12 years (NDPH), all of which has compounded the issues he’s dealing with around withdrawal.

 

His psychiatrist/pain mgt doc put him on a dose of 300mg Lyrica at night without any of us realizing the dangers of this drug and the difficulty of getting off. It has not helped at all with pain or anxiety after several months.

 

Side effects were: extreme depression (over and above the depression he deals with due to chronic illness), bouts of extreme daytime sleepiness (where he was like a person trying to wake up from anesthesia) and having suicidal ideation. At that point we researched and realized that this can be a horrible drug for some people.

 

We were well into the taper before I found this site.

 

I will post more in a new thread in "Tapering" and appreciate any information or opinions on how best to proceed.

 

In the meantime, thank you so much for this site!

Diagnosis -- NDPH (continual headache pain since 2001), chronic Lyme disease, Babesiosis, Bartonella

 

1/12  Valium 10mg PRN

1/12  Norco --increasing dosage with very poor pain relief

10/13 Lexapro upped from 10 to 20mg

10/13  Lyrica increased from 75mg/day to 300 1/day

 8/13  Fentanyl transdermal patch 75mcg (more consistent pain relief)

         Norco PRN for breakthrough pain

 5/14 Begin taper off Lyrica

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Hi everyone,

 

(Intro: for those who haven't read it already) I am seeking support and information for my son as he tapers off Lyrica--he has a history of chronic Lyme disease and other co-infections since early childhood and has a continual headache pain for over 13 years (NDPH) which has compounded the issues he’s dealing with around withdrawal.

 

His psychiatrist/pain mgt doc put him on a dose of 300mg without any of us realizing the dangers of this drug. It has not helped at all with pain or anxiety after several months. Side effects were: extremely depressed, bouts of extreme daytime sleepiness (where he was like a person trying to wake up from anesthesia) and having suicidal ideation.

 

His taper began from 300 to 225mg—(too large a drop, now we know)—he had three or four days of insomnia and other sx but stayed at that dose for about six weeks and seemed to stabilize, but he was still having sweats and temperature deregulation which we were attributing to Babesiosis, one of the tick-borne infections he had just tested positive for again.

Then he started down 25mg/week from 200, 175, 150, 125, 100, 75.

 

When he reached 75 is seemed clear to us that his worsening condition--the temperature intolerance, sweats, anxiety and lack of ability to focus was mostly from Lyrica w/d and not from his infections.

 

At that point, we went back up to 100mg for about a week and he had some initial increase in sleepiness, but the sweats seemed to abate. Wanting to move along he dropped to 90mg for the past 6 days (using the water method).

 

Now he is having fewer sweats, but he has times when he cannot focus or concentrate and is very down and out of sorts. After re-reading other threads, I realize we went way too fast and now the question is will he stabilize at 90mg or do we need to go back to 100mg and stay there for a month or so?

 

If he stays at 90mg, what is the minimum time to stabilize before moving down?

 

He is taking Lyrica once a day at 10pm as was prescribed—but with the short half-life would dosing twice a day be better? He seems to have more symptoms from 16-24hrs after the dose.

 

After being off antibiotics for several months and trying other regimens such as Chinese medicine, herbals, hyperbaric oxygen, he is now back on antibiotics and is having (herxheimer) die-off reactions which further stress his system. Is there any research or anecdotal accounts of how antibiotics might effect withdrawal?

 

Thank you for your help!

Diagnosis -- NDPH (continual headache pain since 2001), chronic Lyme disease, Babesiosis, Bartonella

 

1/12  Valium 10mg PRN

1/12  Norco --increasing dosage with very poor pain relief

10/13 Lexapro upped from 10 to 20mg

10/13  Lyrica increased from 75mg/day to 300 1/day

 8/13  Fentanyl transdermal patch 75mcg (more consistent pain relief)

         Norco PRN for breakthrough pain

 5/14 Begin taper off Lyrica

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  • Moderator Emeritus

Hi levity101,

I'm sorry to hear that your son is having increased symptoms caused by medicines, we hear that a lot here.  He is fortunate to have you helping him.

 

I don't have any personal experience of Lyme disease or Lyrica, but others here may have.  How has your son been tapering so far? What dose is he on now and how is he feeling?

 

When did your son start taking Lexapro and why was the dose increased last year?

 

We recommend reducing by 10% every 4 weeks, here is our information for tapering off Lyrica:

 

http://survivingantidepressants.org/index.php?/topic/2381-tips-for-tapering-off-lyrica-pregabalin/

 

You will find a lot of friendly help and support here.

 

Petu.

I'm not a doctor.  My comments are not medical advise. These are my opinions based on my own experience and what I've learned. Please discuss your situation with a medical practitioner who has knowledge of tapering and withdrawal...if you are lucky enough to find one.

My Introduction Thread

Full Drug and Withdrawal History

Brief Summary

Several SSRIs for 13 years starting 1997 (for mild to moderate partly situational anxiety) Xanax PRN ~ Various other drugs over the years for side effects

2 month 'taper' off Lexapro 2010

Short acute withdrawal, followed by 2 -3 months of improvement then delayed protracted withdrawal

DX ADHD followed by several years of stimulants and other drugs trying to manage increasing symptoms

Failed reinstatement of Lexapro and trial of Prozac (became suicidal)

May 2013 Found SA, learned about withdrawal, stopped taking drugs...healing begins.

Protracted withdrawal, with a very sensitized nervous system, slowly recovering as time passes

Supplements which have helped: Vitamin C, Magnesium, Taurine

Bad reactions: Many supplements but mostly fish oil and Vitamin D

June 2016 - Started daily juicing, mostly vegetables and lots of greens.

Aug 2016 - Oct 2016 Best window ever, felt almost completely recovered

Oct 2016 -Symptoms returned - bad days and less bad days.

April 2018 - No windows, but significant improvement, it feels like permanent full recovery is close.

VIDEO: Where did the chemical imbalance theory come from?



VIDEO: How are psychiatric diagnoses made?



VIDEO: Why do psychiatric drugs have withdrawal syndromes?



VIDEO: Can psychiatric drugs cause long-lasting negative effects?

VIDEO: Dr. Claire Weekes

 

 

 

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Petu,

yes, the way I originally found this site was by looking for 'Lyrica withdrawal'. I posted more details here on the Tapering thread:

 

http://survivingantidepressants.org/index.php?/topic/6828-levity101-questions-lyrica-taper-please/

 

In terms of Lexapro, I would have to look back at records, but he began it for depression and anxiety about three years ago. The doctor who was treating Lyme prescribed it. Then the pain mgt. doc upped it and I've been reading that Lexapro 20mg is actually a pretty high dose. It seems like the depression is largely situational and/or can be a symptom of Lyme--it doesn't feel like Lexapro has helped at all.

 

I saw that it is recommended to begin with getting off anti-depressants first before other meds, but we had already begun and b/c of his symptoms and the fact that they came on after the Lyrica was increased he really wanted to go off it. At its worst, it made him feel that his thoughts were not his own and that he had little control over them....scary!

 

Down the road, he'll be wanting to taper off Lexapro, too, I think.

 

Thank you for your comments!

Diagnosis -- NDPH (continual headache pain since 2001), chronic Lyme disease, Babesiosis, Bartonella

 

1/12  Valium 10mg PRN

1/12  Norco --increasing dosage with very poor pain relief

10/13 Lexapro upped from 10 to 20mg

10/13  Lyrica increased from 75mg/day to 300 1/day

 8/13  Fentanyl transdermal patch 75mcg (more consistent pain relief)

         Norco PRN for breakthrough pain

 5/14 Begin taper off Lyrica

Link to comment
  • Moderator Emeritus

I merged your post from tapering with your introduction here, to keep all your information in one place.

I'm not a doctor.  My comments are not medical advise. These are my opinions based on my own experience and what I've learned. Please discuss your situation with a medical practitioner who has knowledge of tapering and withdrawal...if you are lucky enough to find one.

My Introduction Thread

Full Drug and Withdrawal History

Brief Summary

Several SSRIs for 13 years starting 1997 (for mild to moderate partly situational anxiety) Xanax PRN ~ Various other drugs over the years for side effects

2 month 'taper' off Lexapro 2010

Short acute withdrawal, followed by 2 -3 months of improvement then delayed protracted withdrawal

DX ADHD followed by several years of stimulants and other drugs trying to manage increasing symptoms

Failed reinstatement of Lexapro and trial of Prozac (became suicidal)

May 2013 Found SA, learned about withdrawal, stopped taking drugs...healing begins.

Protracted withdrawal, with a very sensitized nervous system, slowly recovering as time passes

Supplements which have helped: Vitamin C, Magnesium, Taurine

Bad reactions: Many supplements but mostly fish oil and Vitamin D

June 2016 - Started daily juicing, mostly vegetables and lots of greens.

Aug 2016 - Oct 2016 Best window ever, felt almost completely recovered

Oct 2016 -Symptoms returned - bad days and less bad days.

April 2018 - No windows, but significant improvement, it feels like permanent full recovery is close.

VIDEO: Where did the chemical imbalance theory come from?



VIDEO: How are psychiatric diagnoses made?



VIDEO: Why do psychiatric drugs have withdrawal syndromes?



VIDEO: Can psychiatric drugs cause long-lasting negative effects?

VIDEO: Dr. Claire Weekes

 

 

 

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  • Administrator

Welcome, levity.

 

Is your son taking any other drugs? There may be a drug interaction involved. Please put ALL the drugs he takes in the Drug Interactions Checker http://www.drugs.com/drug_interactions.html and post the results in this topic.
 

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • Moderator Emeritus

Hi--

 

I tapered off Neurontin, which isn't Lyrica but is closely related. I think Lyrica is stronger. 

 

In my experience it wasn't much different from tapering off the other meds (ADs and benzos) that I've tapered, maybe a little easier. Since we don't really have the body of experience with Lyrica here that we do with ADs I would recommend a conservative course similar to other psych meds: no more than 10% of current dose cut at a time, and wait about three to four weeks between cuts.

 

I'd give it a hold of couple of months right now, longer if necessary but not much less (5-6 weeks minimum), to get really stabilized, then restart the taper with smaller cuts.

 

Another option is a microtaper, where you make a series of very small cuts at closer intervals, with intermittent longer holds. That's my own preference but you'll need to find what works for him.

Started on Prozac and Xanax in 1992 for PTSD after an assault. One drug led to more, the usual story. Got sicker and sicker, but believed I needed the drugs for my "underlying disease". Long story...lost everything. Life savings, home, physical and mental health, relationships, friendships, ability to work, everything. Amitryptiline, Prozac, bupropion, buspirone, flurazepam, diazepam, alprazolam, Paxil, citalopram, lamotrigine, gabapentin...probably more I've forgotten. 

Started multidrug taper in Feb 2010.  Doing a very slow microtaper, down to low doses now and feeling SO much better, getting my old personality and my brain back! Able to work full time, have a full social life, and cope with stress better than ever. Not perfect, but much better. After 23 lost years. Big Pharma has a lot to answer for. And "medicine for profit" is just not a great idea.

 

Feb 15 2010:  300 mg Neurontin  200 Lamictal   10 Celexa      0.65 Xanax   and 5 mg Ambien 

Feb 10 2014:   62 Lamictal    1.1 Celexa         0.135 Xanax    1.8 Valium

Feb 10 2015:   50 Lamictal      0.875 Celexa    0.11 Xanax      1.5 Valium

Feb 15 2016:   47.5 Lamictal   0.75 Celexa      0.0875 Xanax    1.42 Valium    

2/12/20             12                       0.045               0.007                   1 

May 2021            7                       0.01                  0.0037                1

Feb 2022            6                      0!!!                     0.00167               0.98                2.5 mg Ambien

 

I'm not a doctor. Any advice I give is just my civilian opinion.

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Thanks everyone...Altostrata, here is a list of his meds:

 

Alinia (nitazoxanide) Bicillin L-A (penicillin)
The interactions information for this drug may not be up to date. More...
Fentanyl Transdermal System (fentanyl) Lexapro (escitalopram) Lyrica (pregabalin) Malarone (atovaquone / proguanil) Norco (acetaminophen / hydrocodone) as needed Plaquenil (hydroxychloroquine) Valium (diazepam) as needed

 

The most alarming interaction is between Lexapro and Fentanyl which have a MAJOR interaction alert:

 

Talk to your doctor before using fentaNYL together with escitalopram. Combining these medications can increase the risk of a rare but serious condition called the serotonin syndrome, which may include symptoms such as confusion, hallucination, seizure, extreme changes in blood pressure, increased heart rate, fever, excessive sweating, shivering or shaking, blurred vision, muscle spasm or stiffness, tremor, incoordination, stomach cramp, nausea, vomiting, and diarrhea.

 

The others including Lyrica, Norco, Valium have moderate alerts related to increased drowsiness, dizziness, difficulty concentrating.

 

So, my husband went with my son to his appt with the psych/pain mgt doc and pointed out the interaction potential. He seemed surprised and somewhat doubtful, but then he has not really had much clinical experience with Fentanyl, being a psychiatrist and he seems to downplay everything!

 

We were grateful last summer that he was willing to prescribe Fentanyl b/c the constant head pain was unbearable and taking hydrocodone created a roller-coaster of psychological issues around the ineffectiveness of the drug to control the pain. The Fentanyl has been much better and steady in that respect. But, what we didn't realize was how heavy-handed this doc is with all the psychotropics. A couple of months after introducing Fentanyl, he doubled the Lexapro...then upped the Lyrica. My son is down from 300mg of Lyrica to 90mg and holding.

 

Now, we're wondering if many of what we thought were w/d symptoms could be side effects of the interaction between Fentanyl and Lexapro. He had an episode the other day of sleepiness coupled with racing thoughts along with myoclonic jerking of his arms and legs as he dozed on and off. Last night he had extreme anxiety and feelings of doom. He is still having sweats and feelings of hot/cold much of the time.

 

It's hard to tease out the cause/effect, but knowing about the potential dangerous interaction should we consider starting to taper Lexapro? Are there some who don't have much of a problem tapering--would love to get the combination reduced quickly.

 

Another issue is that many of the symptoms can be from Lyme and Babesiosis, but we need to do whatever is prudent and start to rule things out as much as we can.

 

Any help or ideas on how to approach this are welcome!

 

 

Diagnosis -- NDPH (continual headache pain since 2001), chronic Lyme disease, Babesiosis, Bartonella

 

1/12  Valium 10mg PRN

1/12  Norco --increasing dosage with very poor pain relief

10/13 Lexapro upped from 10 to 20mg

10/13  Lyrica increased from 75mg/day to 300 1/day

 8/13  Fentanyl transdermal patch 75mcg (more consistent pain relief)

         Norco PRN for breakthrough pain

 5/14 Begin taper off Lyrica

Link to comment
  • Moderator Emeritus

I had a lot of problems with sweats during my gabapentin taper.

 

How often is he taking Valium? You'll want to be cautious with that. Best to not take it more than once a week. It's quickly addictive and can lead to withdrawal symptoms between doses.

 

I agree that your doctor is pretty heavy handed with the drugs and I highly doubt that Lexapro has any particular benefit for Lyme/babeosis.

 

If you do choose to begin to taper Lexapro, definitely don't reduce the Lyrica at the same time, and make only a small cut (I'd say about 5% to start). If that brings about noticeable improvement you can go with a bigger cut the next time, but I'd keep the first cut small just to limit damage in case it makes things worse, since you can't really be sure right now if Lexapro is the problem or if it's withdrawal from Lyrica and maybe something with the Valium.

 

Also, I'd highly recommend reading Anatomy of an Epidemic by Robert Whitaker. Psych meds can be pretty perilous and in my opinion should only be used for short times and very cautiously and only in absolute life and death type situations.

Started on Prozac and Xanax in 1992 for PTSD after an assault. One drug led to more, the usual story. Got sicker and sicker, but believed I needed the drugs for my "underlying disease". Long story...lost everything. Life savings, home, physical and mental health, relationships, friendships, ability to work, everything. Amitryptiline, Prozac, bupropion, buspirone, flurazepam, diazepam, alprazolam, Paxil, citalopram, lamotrigine, gabapentin...probably more I've forgotten. 

Started multidrug taper in Feb 2010.  Doing a very slow microtaper, down to low doses now and feeling SO much better, getting my old personality and my brain back! Able to work full time, have a full social life, and cope with stress better than ever. Not perfect, but much better. After 23 lost years. Big Pharma has a lot to answer for. And "medicine for profit" is just not a great idea.

 

Feb 15 2010:  300 mg Neurontin  200 Lamictal   10 Celexa      0.65 Xanax   and 5 mg Ambien 

Feb 10 2014:   62 Lamictal    1.1 Celexa         0.135 Xanax    1.8 Valium

Feb 10 2015:   50 Lamictal      0.875 Celexa    0.11 Xanax      1.5 Valium

Feb 15 2016:   47.5 Lamictal   0.75 Celexa      0.0875 Xanax    1.42 Valium    

2/12/20             12                       0.045               0.007                   1 

May 2021            7                       0.01                  0.0037                1

Feb 2022            6                      0!!!                     0.00167               0.98                2.5 mg Ambien

 

I'm not a doctor. Any advice I give is just my civilian opinion.

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