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Annej: Off long term SNRI's since July 2011


annej

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Do the people Dr Shipko refers to include those who taper slowly (10% rule or less)? Or only those who tapered too quickly?

 

It sometimes misleading when someone talks about a "slow taper", because they could mean anything from tapering over a month to the 10% 3-6 weeks rule or less.

2003-2011: Paroxetine,Citalopram,Effexor; Aug/Sept 2011: Effexor to Mirtazapine; Oct 2011: C/T Mirtazapine back to Effexor; Nov/Dec 2011: Fast Tapered Effexor - w/d hell; Feb 2012: Reinstated Effexor 37.5mg; June 2012: Dropped to 35.6mg; Jan 2016: Propranolol 2.5mg per day for general anxiety; Feb 2016: Finasteride 0.25mg per week to slow hair loss; 18th May - 8th June 2019: Started Vyvanse 7.5mg and increased by 7.5mg weekly to 30mg (lowest “therapeutic” dose for adults).; 21st June 2019 - 12th July: Cross tapered from venlafaxine brand Rodomel to Efexor (1/4 > 1/2 > 3/4 weekly before ditching Rodomel); 13th July 2019: Cut Vyvanse dose to 15mg; 15th July 2019: Akathisia returned after years of being free; 16th July 2019: Went back up to Vyvanse 30mg

Supplements: Omega-3, Vitamin D, Zinc, Phosphatidylserine 

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....I would change the term "most people" to "many people can successfully taper off if they listen to their bodies and go as slowly as they need to. The fact is, the drugs are toxic to the brain, but the good news is that the brain has the wonderful property of plasticity and I am hopeful that others like you and me will recover in time....

 

The proportion of people who can go off psychiatric medications relatively easily is unknown, but indications are *most* people can taper off with no or few withdrawal symptoms.

 

Most likely, withdrawal follows a bell curve, with a minority who can quit cold-turkey with no symptoms at one end and at the other end, a minority who cannot go off the medications no matter how slowly they taper.

 

Compared to the big bulge in the middle, both of these extremes are probably very small minorities. How small? Unknown.

 

In the middle are people who can taper off over a few weeks, then people who can taper off over a few months (the largest number), then people who need to taper very, very slowly, maybe over years. This last group is also a minority, but a larger number than the people who cannot go off at all.

 

So taken all together, everyone but that last extreme minority can taper off psychiatric medications by listening to their bodies and controlling a taper. My guess is this is more than 95% of the people who want to go off.

 

The problem is we cannot predict into which group we may fall ahead of starting a taper. Risk factors for difficult tapers seem to include initial severe adverse reactions to the medication, prior severe withdrawal syndrome, prior history of switching drugs, and being in the midst of benzo withdrawal.

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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My God you went thru hell. Thank goodness you are feeling better. For some reason when anyone goes to a hospital, Seroquel is administered. Why I don't know.

 

I just read an article about Stevie Nicks. She went to the Betty Ford Clinic for cocaine addiction, came out clean, sober and doing well. She was told by several people that she should see a Psychiatrist and he put her on Klonopin. She bagan an 8 year addiction. The good news is that she tapered and has a great life, back to singing and writing music. You sound like a very strong person.

 

I am so sorry you had to experience these problems. You are in the right place for sound advise. I have not taken Effexor or Klonopin. Have had other drug experiences.

 

Please take care and keep us posted.

 

Hugs

Intro: http://survivingantidepressants.org/index.php?/topic/1902-nikki-hi-my-rundown-with-ads/

 

Paxil 1997-2004

Crossed over to Lexapro Paxil not available

at Pharmacies GSK halted deliveries

Lexapro 40mgs

Lexapro taper (2years)

Imipramine

Imipramine and Celexa

Now Nefazadone/Imipramine 50mgs. each

45mgs. Serzone  50mgs. Imipramine

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....I would change the term "most people" to "many people can successfully taper off if they listen to their bodies and go as slowly as they need to. The fact is, the drugs are toxic to the brain, but the good news is that the brain has the wonderful property of plasticity and I am hopeful that others like you and me will recover in time....

 

The proportion of people who can go off psychiatric medications relatively easily is unknown, but indications are *most* people can taper off with no or few withdrawal symptoms.

 

Most likely, withdrawal follows a bell curve, with a minority who can quit cold-turkey with no symptoms at one end and at the other end, a minority who cannot go off the medications no matter how slowly they taper.

 

Compared to the big bulge in the middle, both of these extremes are probably very small minorities. How small? Unknown.

 

In the middle are people who can taper off over a few weeks, then people who can taper off over a few months (the largest number), then people who need to taper very, very slowly, maybe over years. This last group is also a minority, but a larger number than the people who cannot go off at all.

 

So taken all together, everyone but that last extreme minority can taper off psychiatric medications by listening to their bodies and controlling a taper. My guess is this is more than 95% of the people who want to go off.

 

The problem is we cannot predict into which group we may fall ahead of starting a taper. Risk factors for difficult tapers seem to include initial severe adverse reactions to the medication, prior severe withdrawal syndrome, prior history of switching drugs, and being in the midst of benzo withdrawal.

 

Hi Alto,

 

I agree that the prevalence of psychotropic withdrawal syndrome is unknown at this time.

 

Ashton calls the minority of those with protracted symptoms "sizeable". Her study has not been replicated.

 

The problem, as I see it, is that we do not have sufficient data to begin to extrapolate numbers.

 

Among those you mention, I would add that the biggest risk factor for difficult tapers/withdrawal are starting the drug(s) in the first place.

 

-Annej

My Intro
2000-Effexor and Klonopin
April 2011- C/T Adderall, lithium, Seroquel, Lunesta; Pristiq and Klonopin cut by 1/2 due to med-induced "rapid cycling"
May 2011- Pristiq/Lexapro bridge/taper
June, 2011- K cut to 0.5 mg (doctor)
July 18, 2011 - Lexapro done
October 2011- K taper started
Jan, 2012- Off K, Remeron started -bad idea
March 2012- Horrific Tardive Akathisa/TD (Dx: TA versus withdrawal akathisia secondary to K w/d)
May 2012- Reinstatement of K
Current Psych Meds: Klonopin 2 mg + Propanolol 15 mg and titrating up
As of June 2013: TA gone or suppressed - struggling with tolerance to benzos - beta blocker helping

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Oh Annej, my heart goes out to you! I spent 20 years being suicidal more of the time than not, and many days had to remind myself over and over that once my youngest child was 18 I could end my life. And I was never suicidal before taking psych meds, even though I had every reason to be (I was tortured and raped on and off throughout my childhood).

 

I lost 20 years of my life, including my daughters' childhoods, and every day I see the ways my incapacities and inability to mother and protect them the way they deserved has impacted them, the issues they struggle with now and will have to deal with the rest of their lives. It breaks my heart--more and more, as my ability to feel and to bond with others is gradually coming back.

 

I don't have TD but I think I understand what it is to be injured by psych meds. I'm furious that this is allowed to happen and furious about the billions of dollars that have been spent promoting them and propagandizing and persuading doctors and society at large that these drugs are beneficial and safe.

 

Without in any way invalidating your suffering, I hope, I do want to say, for the benefit of people reading this thread who are considering withdrawing from meds and may be frightened, that I agree with Alto that with a slow taper, most people can safely reduce their doses or get off psych meds entirely. I do think people need to be discussing the possibility that a safe taper can take years, though. But I think I'll start another thread about that. It feels to me like it's sort of invalidating to your pain and your experience, to carry on that discussion here in your thread.

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

Oct 2022       4.5 mg Lamictal    (off Celexa, off Xanax)   0.95 Valium    Ambien, 1/4 to 1/2 of a 5 mg tablet 

 

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

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Oh Annej, my heart goes out to you! I spent 20 years being suicidal more of the time than not, and many days had to remind myself over and over that once my youngest child was 18 I could end my life. And I was never suicidal before taking psych meds, even though I had every reason to be (I was tortured and raped on and off throughout my childhood).

 

I lost 20 years of my life, including my daughters' childhoods, and every day I see the ways my incapacities and inability to mother and protect them the way they deserved has impacted them, the issues they struggle with now and will have to deal with the rest of their lives. It breaks my heart--more and more, as my ability to feel and to bond with others is gradually coming back.

 

I don't have TD but I think I understand what it is to be injured by psych meds. I'm furious that this is allowed to happen and furious about the billions of dollars that have been spent promoting them and propagandizing and persuading doctors and society at large that these drugs are beneficial and safe.

 

Without in any way invalidating your suffering, I hope, I do want to say, for the benefit of people reading this thread who are considering withdrawing from meds and may be frightened, that I agree with Alto that with a slow taper, most people can safely reduce their doses or get off psych meds entirely. I do think people need to be discussing the possibility that a safe taper can take years, though. But I think I'll start another thread about that. It feels to me like it's sort of invalidating to your pain and your experience, to carry on that discussion here in your thread.

 

Hi Rhi,

 

You and I "know" each other on another forum for benzos and I have great respect for your knowledge and insights. I want to thank you for your empathy and kindness.

 

People need to know that there are very real risks to getting off of meds as well as the benefits. I agree with Dr. Shipko (see other discussions) that the real risk is that when intolerable suffering follows getting off of meds despite rate of taper and that reinstatement may not alleviate suffering. "Withdrawal hell" therefore morphs into something much, much worse. Some people who are not suffering on their current meds may do better staying on them or follow a "harm reduction" approach (Will Hall of the Icarus Project). I know that people do not want to hear this - we want off the "poisons". I was forewarned by Dr. Shipko and did not heed his warning in part because I did not trust a psychiatrist telling me that the quality of my life might be better than getting off of them. He has changed his views over the years that everyone who wants to get off their meds should do so because he sees patients who suffer tremendously off of them for years and years.

 

I believe your discussion as to the possibilities that it may take years (I think of Gianna Kali's experience) to get off of meds safely is a very important one. Ms. Kali followed a very slow taper - one med at a time and I believe she took 6 years. She considers herself still disabled despite her ultra-slow tapering. For those of us whose CNS has been severely compromised, finding quality of life with our medication-induced neurological damage becomes the new reality.

 

We don't have statistical data or a way in predicting who or why this happens to some. In a way, it is very much like Russian Roulette. We cannot say that "most" people do just fine with a slow taper. The symptoms of neurological compromise may take one or more years to show up. Ashton's review of her first 50 patients coming off of benzos showed a cross-section of those who subjectively said they were doing "excellent" at 42 months, "moderate", "fair", and "poor" (with one suicide in this 50 patient review). What this tells me is that no one knows which category they will fall into. On the other board which you and I are participants of, there are way too many people who are severely disabled in protracted withdrawal. This is consistent with what I am seeing on this forum concerning antidepressant withdrawal.

 

My intention is not to promote fear-mongering, but to get people not to simply jump on the bandwagon of "I want off this ****", who follow unresearched protocols for "slow tapering", who take one med at a time, and who end up with life-altering consequences.

 

Most forums do not *advocate* people getting off their meds and make the usual disclaimers of "talking to your doctor" (which we know can be pretty useless), but it does provide a certain amount of legal coverage.

 

There are upsides to Internet forums and many have been helped - for this I am grateful. But the fact remains is that psychotropic drug withdrawal is not well-researched, that the 10% (or slower) taper protocols are not researched and are anecdotal in nature. Much of what we read on the Internet with respect to drug withdrawal syndromes is purely anectodal. What happened to me is purely anecdotal and means nothing except that if it happened to me, it could happen to others. Fear can be healthy and constructive if it gets people to ask themselves if they are willing to take any and all risks.

My Intro
2000-Effexor and Klonopin
April 2011- C/T Adderall, lithium, Seroquel, Lunesta; Pristiq and Klonopin cut by 1/2 due to med-induced "rapid cycling"
May 2011- Pristiq/Lexapro bridge/taper
June, 2011- K cut to 0.5 mg (doctor)
July 18, 2011 - Lexapro done
October 2011- K taper started
Jan, 2012- Off K, Remeron started -bad idea
March 2012- Horrific Tardive Akathisa/TD (Dx: TA versus withdrawal akathisia secondary to K w/d)
May 2012- Reinstatement of K
Current Psych Meds: Klonopin 2 mg + Propanolol 15 mg and titrating up
As of June 2013: TA gone or suppressed - struggling with tolerance to benzos - beta blocker helping

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annej, it's true the long-term effects of going off medication are unknown. But the indications are staying on psychiatric medications long-term also damage health.

 

Antidepressants and antipsychotics unquestionably raise diabetes risk, for example. If people are suffering adverse effects, those degrade quality of life and possibly health as well.

 

I don't think Dr. Shipko is saying no one should try to go off psychiatric drugs, he's saying it's not invariably successful.

 

As a scientist with integrity, Dr. Shipko wants to acknowledge risk, however small. But no one knows what the level of risk is, for so many things involving psychiatric drugs.

 

Slow tapering works fine for many people, as well as anything can in this environment of ignorance about the drugs.

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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annej, it's true the long-term effects of going off medication are unknown. But the indications are staying on psychiatric medications long-term also damage health.

 

Antidepressants and antipsychotics unquestionably raise diabetes risk, for example. If people are suffering adverse effects, those degrade quality of life and possibly health as well.

 

I don't think Dr. Shipko is saying no one should try to go off psychiatric drugs, he's saying it's not invariably successful.

 

As a scientist with integrity, Dr. Shipko wants to acknowledge risk, however small. But no one knows what the level of risk is, for so many things involving psychiatric drugs.

 

Slow tapering works fine for many people, as well as anything can in this environment of ignorance about the drugs.

 

Slow tapering may work fine for many people - particularly when done one medication at a time. Kali's BeyondMeds site supports this method as does this site. Dr. Shipko gave me fair warning about the dangers of going off of long term psych drugs - that it may cause more problems in the long run. The damage to health is already done by the time someone is on the drugs long term. Fortunately, the brain because of its plasticity may allow for healing over time. This gives me great hope! Informed consent about the dangers of getting off of long term drugs is extremely important - this is what I gleaned from my in-person consultation with Dr. Shipko and my various discussions with him via phone or email.

 

I agree with you that no one knows what the level of risk in getting off of psych drugs is - but when that risk happens to me or others - the risk is 100%.

My Intro
2000-Effexor and Klonopin
April 2011- C/T Adderall, lithium, Seroquel, Lunesta; Pristiq and Klonopin cut by 1/2 due to med-induced "rapid cycling"
May 2011- Pristiq/Lexapro bridge/taper
June, 2011- K cut to 0.5 mg (doctor)
July 18, 2011 - Lexapro done
October 2011- K taper started
Jan, 2012- Off K, Remeron started -bad idea
March 2012- Horrific Tardive Akathisa/TD (Dx: TA versus withdrawal akathisia secondary to K w/d)
May 2012- Reinstatement of K
Current Psych Meds: Klonopin 2 mg + Propanolol 15 mg and titrating up
As of June 2013: TA gone or suppressed - struggling with tolerance to benzos - beta blocker helping

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Thanks for mentioning Will Hall's "harm reduction" approach, by the way. I think that's the most sensible way to approach reducing or getting off psych meds.

 

I do think the taper rate he recommends may be too fast for many people (I think he recommends the 10% method) and I'd like to see him add a section on extremely slow microtapers as a possibility.

 

I've been fortunate to meet and talk to Will because he lives in Portland and I get there for psych activist meetings from time to time.

 

I think for anyone reading this thread who's on meds that are causing them disability and suffering, it's worth knowing that even if you can't get off the med 100%, you can experience a great deal of relief and improvement by reducing your dose, as long as you do it as slowly and carefully as any other taper should be done.

 

I'm glad to see the "harm reduction" concept introduced here. So often people act like there's no space between "all" and "nothing."

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

Oct 2022       4.5 mg Lamictal    (off Celexa, off Xanax)   0.95 Valium    Ambien, 1/4 to 1/2 of a 5 mg tablet 

 

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

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Anniej,

Just re-read through your history. I'm so sorry that you suffered the loss of your husband in the midst of all of this. I can't imagine...

 

I wondered what SI is that you refer to. I only know it as "sacroiliac" :-/

I can't find it here, but recall you describing yourself as "an 18 year old wanna-be" or similar. I've found myself trying to revert to age when I began on meds (early 30s). I attributed my loss of time to not having markers along the way (kids, birthdays, etc) and your wording jumped out at me. The extreme weight loss is another symptom that was not only overlooked with me, but docs tried to blame on me/depression and questioned me about eating disorder. I opened a discussion on this a few days ago. The extreme and rapid weight fluctuations are becoming "accepted" with psych meds, which is incredibly dangerous, IMNSHO.

It's great that your family has been supportive and proactive. It's a rare mindset that will challenge doctors. Major kudos to all!

 

Barb

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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I'm new here, but I just read your story and I wish I could give you a huge hug. You are a very strong woman to have endured what you have. What an incredible ordeal. (To the post above me, SI is suicidal ideation).

 

I believe every word of it too. I have been a medical transcriptionist for about 10 years now and I see every day that kind of overmedication and medication manipulation; doctors unwilling to do anything about medications another doctor has prescribed; doctors writing off a patient as addicted or basically a lost cause.

 

You are truly an inspiration and an amazing person, and I thank you for sharing such a deeply personal and painful story.

Self-tapered off Effexor after being on for 9 years around 2001

Medication-free until 2006

In 2006 went through divorce and placed on Celexa 20 mg and p.r.n. clonazepam

Stayed on 20 mg until 2011 when began cutting in half and taking 10 mg (Didn't really notice withdrawal symptoms)

Began to plan to come off in spring/summer 2012, continuing 10 mg Jan/Feb.

Tapered to 5 mg March/April (about 1 week mild withdrawal symptoms).

Tapered to sliver of tablet, estimated 2-2.5 mg in (1-2 weeks of withdrawal symptoms progressively diminishing and then stopping)

May 18, 2012: Stopped Celexa.

July 5, 2012: Reinstated Celexa at 5 mg.

July 13, 2012: Increased Celexa to 10 mg.

August 30, 2012: Increased Celexa 15 mg.

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I'm new here, but I just read your story and I wish I could give you a huge hug. You are a very strong woman to have endured what you have. What an incredible ordeal. (To the post above me, SI is suicidal ideation).

 

I believe every word of it too. I have been a medical transcriptionist for about 10 years now and I see every day that kind of overmedication and medication manipulation; doctors unwilling to do anything about medications another doctor has prescribed; doctors writing off a patient as addicted or basically a lost cause.

 

You are truly an inspiration and an amazing person, and I thank you for sharing such a deeply personal and painful story.

 

Hi jfrank17,

 

Thank you for your kindness and compassion. Unfortunately, my story did not end so well. It appears that after I finished my benzo taper (Klonopin) that I had a movement disorder caused by one or more of the multiple medications I had taken. It might even have been caused by Remeron which I started on Jan 27, 2012 to "help" with benzo withdrawal symptoms. I will never know what caused what due to the amount of meds I was on (and off) over the years. My movement disorder(s) are called Tardive Akathisia and Tardive Dyskinesia. I believe that "tardive" means "late appearing" as opposed to being an acute onset.

 

Read and weep along with me: Tardive Akathisia/Tardive Dyskinesia

 

I had to reinstate the Klonopin to stop (more accurately "mask") the horrific symptoms. I gratefully and blessedly do not have these horrendous symptoms once I got reinstated on the Klonopin but it took several weeks to stabilize. I am doing better now. My neurologist said it could take "months or years" for the movement disorder(s) to go away. I am completely stuck on Klonopin for the time being and don't know when it would be "safe" to do a very, very, very, very S-L-O-W taper off the Klonopin.

 

As of now, I am looking at quality of life. I am 52 years old and I would like to live as long as I can with some degree of quality of life. I am hopeful that maybe in 6 or 9 months, I can at least slowly taper down to 1 mg. The 2 mg makes me very, very fatigued, and messes with my cognition, but despite this, I really, really try to live each day to the best of my abilities.

 

This experience has given me a profound gratitude for being alive. :) Hugs, Annej

My Intro
2000-Effexor and Klonopin
April 2011- C/T Adderall, lithium, Seroquel, Lunesta; Pristiq and Klonopin cut by 1/2 due to med-induced "rapid cycling"
May 2011- Pristiq/Lexapro bridge/taper
June, 2011- K cut to 0.5 mg (doctor)
July 18, 2011 - Lexapro done
October 2011- K taper started
Jan, 2012- Off K, Remeron started -bad idea
March 2012- Horrific Tardive Akathisa/TD (Dx: TA versus withdrawal akathisia secondary to K w/d)
May 2012- Reinstatement of K
Current Psych Meds: Klonopin 2 mg + Propanolol 15 mg and titrating up
As of June 2013: TA gone or suppressed - struggling with tolerance to benzos - beta blocker helping

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Alto... would you expand on the out of the blue waves/black holes and relapse v withdrawal? Thanks.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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I have read a lot about the work of Abram Hoffer, Linus Pauling, Carl Pfieffer, etc and I believe their work has shown that at least some people have some abnormal chemistry that responds well to nutrients. For example they identified a unique substance in the urine of schizophrenics which they later called pyroluria and it is a marker that has been used to help treat many folks. Same thing with someone who has high histamine levels; once the histamine is brought down, their symptoms go away. I am not necessarily saying that there is a "chemical imbalance" or a "brain disease", but I do believe that chemistry plays a factor in someone who is experiencing delusions, crushing depression, paranoia, etc. I mean there has got to be something going on in the body, these are not just thought disorders that are all in the mind. Perhaps our symptoms could be result of a food allergy, a chemical sensitivity, or whatever, but I believe our suffering has a root cause whether it is psychological, metabolic, biochemical, etc.

 

I totally agree... and I do think different people have different levels of neurotransmitters and that neurotransmitters have an effect on mood (in conjunction with a whole lot of other factors). That said, I think Barbara's response explains perfectly why the term "chemical imbalance" is inadequate. Also, brain chemistry is such an interconnected web of dependencies that it is foolish to mess with it with drugs that are so devastatingly poorly tested and understood.

 

I try to make a distinction between brain chemistry imbalance, which is bogus, and body chemistry. Diabetes can screw up the works royally. Adding something like an SSRI or an SNRI can, and does, make the matter worse, Celexa and Buspar, made me gains more weight than I care to think about, let alone screw with my glucose levels. On Viibryd, I lost a tremendous amount of weight, (in addition to not having a car at the time), as well as being continually nauseous. Hence, my blood sugars also dropped. Unfortunately, I had a reaction to this stuff, which is is why I'm trying to get off this stuff. Maybe now, with the Asperger's diagnosis, I can finally get the help I need getting off this stuff and otherwise.

History:

1995--Prozac--Quit CT by GP

1995--Effexor--Quit per my GP

1996--Amitriphene--Quit CT when changed GP

2005--Citalopram and BusPar. Prescribed when I decompensated in my GP's office. GP referred me to behavior health. Psychiatrist prescibed these drugs. Taken off citalopram in 2011 due to FDA warning. Quit Buspar during transition to viibryd.

Viibryd--2011 to present. Had a severe reaction in March 2012. Advised both GP and Psychiatrist I was trying to get off these drugs.

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Hi Annej,

 

You really are an inspiration, as the others have stated.

 

Hi tezza,

 

If my story gives motivation for anyone seeking to get off of psychotropic drugs in a manner that causes the "least harm", that inspires anyone who wants off of psych drugs to thoroughly research benefits versus risks, than I shall consider myself an inspiration.

 

Many Hugs, Annej

My Intro
2000-Effexor and Klonopin
April 2011- C/T Adderall, lithium, Seroquel, Lunesta; Pristiq and Klonopin cut by 1/2 due to med-induced "rapid cycling"
May 2011- Pristiq/Lexapro bridge/taper
June, 2011- K cut to 0.5 mg (doctor)
July 18, 2011 - Lexapro done
October 2011- K taper started
Jan, 2012- Off K, Remeron started -bad idea
March 2012- Horrific Tardive Akathisa/TD (Dx: TA versus withdrawal akathisia secondary to K w/d)
May 2012- Reinstatement of K
Current Psych Meds: Klonopin 2 mg + Propanolol 15 mg and titrating up
As of June 2013: TA gone or suppressed - struggling with tolerance to benzos - beta blocker helping

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  • Administrator

Thank you, Anne, everyone's story helps us understand the situation better.

 

Alto... would you expand on the out of the blue waves/black holes and relapse v withdrawal? Thanks.

 

From what I've seen (and experienced), the intense waves of neuro-emotion are different from ordinary "normal" emotions. Ordinary "normal" emotions don't pile on all of a sudden, they culminate more gradually, and they don't just vanish suddenly, either.

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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Thanks. It is easy to see how this would be newly diagnosed as rapid-cycling/bipolar. I've never experienced swings before.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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  • 2 months later...
  • Administrator

How are you doing, Annej?

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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Update September, 2012

 

I reinstated benzos at the tail end of April 2012 after being off of them for over 90+ days due to intolerable tardive akathisia/tardive dyskinesia that started about 4 to 6 weeks after stopping benzos. I came off a slew of meds much too rapidly and my benzo taper was much too rapid for the length of time that I was on it. I believe that Remeron was my ultimate undoing (started the day I came off of Klonopin). It took over 4 weeks to find out that I was having severe adverse effects to Remeron in addition to being in acute benzo withdrawal. I was forced to rapid taper and ultimately cold turkey off of Remeron and this is when the TERROR began in addition to the TA/TD. Bottom line: I had no choice but to take a gamble on reinstating Klonopin after being off of it for a little more than 3 months. I was frightened beyond anything I could ever imagine after reading anectodal reports that reinstating benzos (or any psych drug) may not work after being off of it for a period of time.

 

Symptoms that are gone after reinstating:

 

Tardive Akathisia/Tardive Dyskinesia

Severe Insomnia

Terror/Anxiety

Parethesthias in all extremities

Depression

Daily Crying

Daily fear that I would have a paradoxical reaction to benzos

PTSD-like reaction due to trauma of everything that happened

 

 

Symptoms that still remain after reinstatement:

 

Intermittent, low-level, Tinnitus

Intermittent, low-level early morning cortisol rushes (much, much improved)

Vulnerability to stress (aging and/or effects of long term neurotoxics?)

 

 

Things that have overall improved after the experience of my rapid withdrawal from multiple psych drugs:

 

Acceptance that "harm reduction" may be in my best interests other than being 100% med-free.

Acknowledgement and gratitude that I was able to get off of 5 other psych drugs and feel so much better!

Currently my life is the best it has been in at least the last 4 years.

I am at 89% to 95% total functioning. I would consider myself to be 100% functioning if I felt I could work part or full time. I do not feel able to work because of severe vulnerability to stress.

 

I have rebuilt a severely damaged social network within 4 months. I have friends, support, a connection to my community (volunteer work) and have even began dating again (my husband passed away in 2008). I believe that what I experienced was close to a "near death" experience and that this experience gave me a deep appreciation for those things that I am capable of doing.

 

My pdoc has not entirely acknowledged his mistakes (misdiagnosis), but has acknowledged that psych drugs have had deleterious effects on me, up to and including TA/TD. He will not prescribe any meds other than the benzo that is the only antidote that works for me to stop the intolerable TA/TD. He is being supportive and helpful and is working with my neurologist for my TA/TD.

 

I try to live each day to its fullest with full appreciation for the gift of life. Being human, I fail at this quite frequently, but I keep on trying.

 

Will Hall's Harm Reduction approach to getting off of psych drugs is my bible. I acknowledge that I may or may not ever be able to get off of Klonopin, but in the future, I can make some very, very small dosage reductions. :) Annej

My Intro
2000-Effexor and Klonopin
April 2011- C/T Adderall, lithium, Seroquel, Lunesta; Pristiq and Klonopin cut by 1/2 due to med-induced "rapid cycling"
May 2011- Pristiq/Lexapro bridge/taper
June, 2011- K cut to 0.5 mg (doctor)
July 18, 2011 - Lexapro done
October 2011- K taper started
Jan, 2012- Off K, Remeron started -bad idea
March 2012- Horrific Tardive Akathisa/TD (Dx: TA versus withdrawal akathisia secondary to K w/d)
May 2012- Reinstatement of K
Current Psych Meds: Klonopin 2 mg + Propanolol 15 mg and titrating up
As of June 2013: TA gone or suppressed - struggling with tolerance to benzos - beta blocker helping

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Great to hear of your success, Anniej. You present a realistic picture for those of us who have been polydrugged for many years.

 

Hugs!

B

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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  • 1 month later...

It has been 1 year since I began a taper off Klonopin after a 3 month taper off long term AD's and a CT off of Adderral, lithium, Depakote, Lunesta, and Seroquel. Throw in an extremely rapid taper and ultimate CT off of Remeron which I started taking the day after I jumped off the K. Starting Remeron (or any other drug) during benzo withdrawal was the worst possible thing I could have done to my CNS. In my experience, there simply is no substitute for a benzo and adding another drug compounded my problems.

 

It is unfortunate that I was forced to reinstate Klonopin after being benzo free for over 90 days, but I am grateful that the reinstatement worked effectively and stopped the horrific symptoms of Tardive Akasthesia and Tardive Dyskinesia. The TA was unmasked after I was off the benzo at about the 4 week mark and it is thought that I probably got the TA from when I started on Effexor back in 2000. The Tardive Dyskinesia was probably a symptom of benzo withdrawal. Bliss Johns of Recovery Road still has involuntary movements although she considers herself completely recovered. My TD manifested itself as lip smacking, continually touching my face and hair, and "respiratory grunting" (horribly frightening) - all classic symptoms of TD. I reinstated to save myself from taking my precious life due to the TA. My Akathesia began each night at midnight and did not relent until around 11:00 AM the following day. It is a mixture of the most intense physical and mental agony that I have ever experienced and if cutting off an arm or a leg would have lessened my pain, I would have done so without second thought. I am most thankful that I did not take my life.

 

Every day I thank God that I am alive even though I have probably reached a degree of tolerance to the K. I live with tinnitus, intermittent deep bone pain alternating in both legs, and I have a new symptom of chewing the insides of both my cheeks when I sleep - most likely caused by bruxism. Ibuprofen helps with the bone pain and I am getting a mouthguard in order to stop chewing up the insides of my cheeks. I ignore the tinnitus. I have made the decision to not escalate my dose of K unless the akathesia returns.

 

Despite my physical pains, I am doing well emotionally and living each day as if it were my last. I read everyone's posts and although I do not post much, please know that all of you are in my prayers. Much love and hugs, Annej

My Intro
2000-Effexor and Klonopin
April 2011- C/T Adderall, lithium, Seroquel, Lunesta; Pristiq and Klonopin cut by 1/2 due to med-induced "rapid cycling"
May 2011- Pristiq/Lexapro bridge/taper
June, 2011- K cut to 0.5 mg (doctor)
July 18, 2011 - Lexapro done
October 2011- K taper started
Jan, 2012- Off K, Remeron started -bad idea
March 2012- Horrific Tardive Akathisa/TD (Dx: TA versus withdrawal akathisia secondary to K w/d)
May 2012- Reinstatement of K
Current Psych Meds: Klonopin 2 mg + Propanolol 15 mg and titrating up
As of June 2013: TA gone or suppressed - struggling with tolerance to benzos - beta blocker helping

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Annej, yours is the most horrible story I have read out of all the stories on depression forums. It made me so angry that drugs and psych doctors did this to you! It made me want to run to the local news station and report it! In fact, I would be filing some massive law suits if I were you! By any chance, were you also taking Reglan? Reglan is a small white tablet given to people who have Acid Reflux. Well, there's actually a massive lawsuit agains Reglan for causing Tardive Diskenesia. I was on that drug for 3 years, and while it didn't cause TD in me, it definitely made me depressed and paranoid. I found out too late that this seemingly "innocent" little drug, is actually processed in the brain! It is actually a dopamine agonist!

 

But I also experienced involuntary muscle leg jerking/spasms while taking Prozac. And still experience them sometimes on Pristiq, down at the base of my spine. I'm looking into trying electrotherapy, as I recently found out from my Chiropractor that all types of electrotherapy units are available with and without prescription. As it turns out, CES - Cranial Electro Stimulation has been used and proven to be more effective than a placebo. There are a lot of clinical studies out there showing it's effectiveness. I'm eager to try it out for myself. These units are expensive, but if your doctor prescribes it, your insurance will cover it! Who knows maybe it CAN reset the brain. Our brains and especially nerve cells and neurons all send electrical impulses. We are electro-magnetic beings.

2005-2008: Effexor; 1/2008 Tapered 3 months, then quit. 7/2008-2009 Reinstated Effexor (crying spells at start of new job.)
2009-3/2013: Switched to Pristiq 50 mg then 100 mg
3/2013: Switched to Lexapro 10mg. Cut down to 5 mg. CT for 2 weeks then reinstated for 6 weeks
8/2013-8/2014: Tapering Lexapro (Lots of withdrawal symptoms)
11/2014 -8/2015: Developed severe insomnia and uncontrollable daily crying spells
12/2014-6/2015: Tried Ambien, Klonopin, Ativan, Lunesta, Sonata, Trazadone, Seroquel, Rameron, Gabapentin - Developed Anxiety disorder, PTSD, and Psychogenic Myoclonus
7/2015-1/2016: Reinstated Lexapro 2 mg (mild improvement, but crying spells still present)

1/2016-5/2017: Lexapro 5 mg ( helped a lot, but poor stress tolerance & depressive episodes)

5/20/2017 - Raised dose to Lexapro 10 mg due to lingering depression(Total of 2 failed tapers & severe PAWS)

9/11/2018 - Present: Still on 10 mg Lexapro and mostly recovered.(Anxiety still triggers Myoclonus.)

10/7/2022 - 20 mg Lexapro (brand only) Plus occasional Klonopin for anxiety and Ambien for insomnia.

 

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By any chance, were you also taking Reglan? Reglan is a small white tablet given to people who have Acid Reflux.

 

But I also experienced involuntary muscle leg jerking/spasms while taking Prozac. And still experience them sometimes on Pristiq, down at the base of my spine. I'm looking into trying electrotherapy, as I recently found out from my Chiropractor that all types of electrotherapy units are available with and without prescription. As it turns out, CES - Cranial Electro Stimulation has been used and proven to be more effective than a placebo. There are a lot of clinical studies out there showing it's effectiveness. I'm eager to try it out for myself. These units are expensive, but if your doctor prescribes it, your insurance will cover it! Who knows maybe it CAN reset the brain. Our brains and especially nerve cells and neurons all send electrical impulses. We are electro-magnetic beings.

 

Hi oaklily,

 

Thank you for responding to my post. I have never taken Reglan (metoclorpramide) which I understand to be a medication that increases gastric motility and is known to cause akathesia in some people. I can only speculate that long term exposure to SNRI's caused the tardive akathesia (akathesia that becomes pronounced when a drug is lowered and/or discontinued).

 

I have not had a recurrence of akathesia since reinstating the Klonopin and I thank God for this every single day.

 

I look forward to hearing about your experiences with electrotherapy. :) Hugs, Annej

My Intro
2000-Effexor and Klonopin
April 2011- C/T Adderall, lithium, Seroquel, Lunesta; Pristiq and Klonopin cut by 1/2 due to med-induced "rapid cycling"
May 2011- Pristiq/Lexapro bridge/taper
June, 2011- K cut to 0.5 mg (doctor)
July 18, 2011 - Lexapro done
October 2011- K taper started
Jan, 2012- Off K, Remeron started -bad idea
March 2012- Horrific Tardive Akathisa/TD (Dx: TA versus withdrawal akathisia secondary to K w/d)
May 2012- Reinstatement of K
Current Psych Meds: Klonopin 2 mg + Propanolol 15 mg and titrating up
As of June 2013: TA gone or suppressed - struggling with tolerance to benzos - beta blocker helping

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  • 7 months later...

...but not until I experienced the subjective horrors of severe Tardive akathisia and Tardive Dyskinesia 4 to 6 weeks after getting off of Klonopin (which undoubtedly "masked" the TA/TD) do I fully appreciate and agree with what Dr. Shipko was intending to convey - getting off of psychotropics has RISKS.

 

Hi, annej. I am in the same boat, of having clonazepam mask TD symptoms and possibly akathisia. So you got it 4 to 6 weeks after getting off of Klonopin? Was it from a too rapid taper or did it happen with a gradual one? I'm scared right now.

 

I'm only on .5 mg, but I just started to taper it two days ago and I woke up with tremors, I'm very jittery and anxious and shaking a lot.

 

I know what you mean about the horrors of TD and akathisia, I got severe akathisia going off of risperidone and was unable to successfully reinstate. I was severely suicidal too and I wrote a suicide note to my son. It was so awful, the pacing and pacing and feeling that death was the only way out.

 

I'm doing a lot better now, but I wonder how much the clonazepam is just masking and what will happen when I eventually go off. If it will ever be "safe" to go off, which sucks because the clonazepam I believe increases my depression and causes me hair loss. If i have to stay on it, I'm afraid I am going to end up bald.

 

I know I should just be grateful the akathisia horror is over, but I'm scared that I have permanent problems and now hearing that TD and akathisia can come from klonopin withdrawal, I'm scared I'm going end up with the same problem. Yikes.

05/11  Gabapentin 1800mg, nardil 60mg, 05/12  Rapid taper & d/c both
12/12  ER: Risperidone .5 mg 2x day 1 wk/then .5 mg 1x day, 02/13  Risperidone d/c
03/13  ER: Seroquel 150 mg, Celexa 20 mg (d/c after 1 week)
04/13  E&T: 10mg zyprexa, 20mg Celexa, 150mg trazodone, 2mg Clonazepam (Zyprexa and Celexa d/c after 1 week)        
05/13  Rapid taper & d/c Trazadone, clonazepam reduced from 2 mg - .5 mg, Gabapentin 300 mg 3x day
06/13  Clonaz .5 mg - .125 mg

12/13  Clonaz 1/8 mg, gabapentin 240 mg 3x day

03/14  Clonaz 1/8 mg, gabapentin 100 mg 3x day

09/14  Clonaz 1/8 mg, gabapentin   33 mg 3x day   11/14  Clonazepam 1/7 mg

04/15  Clonazepam 1/11 mg

08/15  finished taper

 

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Oops, I just realized this conversation was 2012.

05/11  Gabapentin 1800mg, nardil 60mg, 05/12  Rapid taper & d/c both
12/12  ER: Risperidone .5 mg 2x day 1 wk/then .5 mg 1x day, 02/13  Risperidone d/c
03/13  ER: Seroquel 150 mg, Celexa 20 mg (d/c after 1 week)
04/13  E&T: 10mg zyprexa, 20mg Celexa, 150mg trazodone, 2mg Clonazepam (Zyprexa and Celexa d/c after 1 week)        
05/13  Rapid taper & d/c Trazadone, clonazepam reduced from 2 mg - .5 mg, Gabapentin 300 mg 3x day
06/13  Clonaz .5 mg - .125 mg

12/13  Clonaz 1/8 mg, gabapentin 240 mg 3x day

03/14  Clonaz 1/8 mg, gabapentin 100 mg 3x day

09/14  Clonaz 1/8 mg, gabapentin   33 mg 3x day   11/14  Clonazepam 1/7 mg

04/15  Clonazepam 1/11 mg

08/15  finished taper

 

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  • 1 year later...

AnneJ and Morphologie did your athakesia go away? Where you able to get off the benzo for it completely?

Prozac 1999-2009 quit semi cold turkey.

 

2012 Placed on Seroquel 25 mg, Tranxene (Clorezepate) 3.75 mg 3x a day, Remeron 30 mg for anxiety/akathesia.

 

Weaned off Seroquel and Tranxene .to Remeron 15 Mg.

In May 2014 tried quitting Remeron at its lowest dose. Had severe withdrawals.Reinstated Remeron at 30 mg by doctor. August 5 2014 entered hospital. Doctor pulled the Remeron and bridged it to Pamelor (Nortriptyline) 40mg and Zyprexa 2.5mg.After removing the Remeron all my bad symptoms went away and I am stable.

 

9/11/14 - 7.5 mg tranxene, 40mg Pamelor, Zyprexa 2.5mg

12/29/14 -  20mg Pamelor, 1/6/15,  7/31/15 3.5mg, 8/10/15 3.2 mg, 9/15/15 2.2mg, 10/15/15 1.8mg

(Feb 2016 - 1.4mg Pamelor only -  OFF OF TRANXENE AND ZYPREXA SINCE DEC 2014 BENZO FREE Since 2014. Nortrityline (Pamelor) .8mg Aug 2016

March 2017 DRUG FREE

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  • 4 years later...
  • Moderator Emeritus

For anyone reading this topic, I have been tapering Pristiq using compounded capsules with slow release formula.

 

tips-for-tapering-off-pristiq-desvenlafaxine

* NO LONGER ACTIVE on SA *

MISSION ACCOMPLISHED:  (6 year taper)      0mg Pristiq  on 13th November 2021

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering from Oct 2015 - 13 Nov 2021   LAST DOSE 0.0025mg

Post 0 updates start here    My tapering program     My Intro (goes to tapering graph)

 VIDEO:   Antidepressant Withdrawal Syndrome and its Management

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