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Audo: Effexor reinstatement fail?


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Hello -  Just like most people here, my story is so convoluted and painful that I don't even know how to start. The last 10 years of my life have been filled with great personal success, as well as horrific pain and failures that I truly believe are med-induced. I guess I should say that I'm a 30 something male, otherwise healthy (at least based on medical tests), and have been medicated for ~14 years. I sought help (2004) initially due to severe social anxiety and some moderate depression/GAD. Before meds I was generally very stable and active, but was just exhausted from managing the stress of crippling social anxiety (SA) as a college student. I don't know if Effexor (75mg)  ever helped  my SA, it did help with GAD but anything that makes you numb will probably do that. And Klonopin, that was a magic elixir for me (but the devil's in the details). I was never aggressive or impulsive before Effexor. One extreme example: I was in college and  hurt by a romantic interest. While I was not suicidal, I distinctly remember such hatred toward myself and ended up hacking my arms and torso with a knife, which earned me 50 stitches, a night in the psych ward, and a lifetime of visible scars. This behavior was so uncharacteristic with my pre-med self and "coincidentally", started when I began meds... 

 

Fast forward 7 years and decided to try ritalin for grad school at suggestion of my psych (doc) based on previous diagnosis of ADD. As I started taking ritalin, my anxiety worsened so my doc increased my Effexor to 150mg. I started to have debilitating fatigue and couldn't stay awake in afternoons, so my doc suggested I try Klonopin 0.25mg/night for better sleep. A couple years later and just falling apart, which looking back was likely tolerance withdrawal from Klonopin. Anyway, doc upped my EfX dose to 225mg, which caused first ever and severe panic attacks, agitation, suicidal ideation. My doc left the practice and was assigned a new one. This doc lowered my EfX to 150mg and put me on Lamictal because he thought i had Bipolor 2 (I don't). As I continued to experience all sorts of major symptoms, he finally said I had treatment resistant depression and suggested lithium. ******* LITHIUM. At that point I took things into my own hands and began to taper off of everything. Low and behold, generally speaking at each iteration down a dose or off a med, my life improved dramatically.  Don't get me wrong, tapering and withdrawal was brutal, but what I was experiencing was even worse. No more agitation, suicidal ideation, etc. 

 

Subsequent to the med cocktail from hell, I was on Wellbutrin SR 100mg (discontinued in Aug 2017) and EfX XR 37.5 mg for about a year. I was also 100% benzo free between April 2017 and April 2018, which I viewed as a great, if difficult success. In Jan 2018 after weeks of a difficult depressive episode, which was likely just a seasonal thing, I decided to try low dose Zoloft and finally get off of Effexor.  (The thinking being that I have depression and will need to be medicated with something the rest of my life. I have since changed that view.) I tapered off of Effexor for 45-days. Two weeks after my last dose I began to experience horrible nighttime akathisia and insomnia. For an entire week I maybe got 8 hours of sleep. My doc suspected it was the Zoloft (I suspected Effexor) and told me to halve my Zoloft dose, which didn't help. I ended up tapering off of Zoloft over two weeks and reinstating Effexor XR 20mg (custom bead count). After a week with no sleep and starting to lose it, we finally decided to get me stabilized by using Klonopin at night as things like diphenhydramine, propanol, Gabapentin didn't work. It's been 30 days off of Zoloft and having reinstated Effexor and Klonopin. The akathisia and insomnia has not improved at all and the only way I can sleep is by taking 0.25-0.5mg Klonopin. So I'm in this reinstatement purgatory of sorts. The longer I take benzos the more dependent I become on them. I so desperately want and need to get off of Effexor (for so many other longterm side-effects that I haven't mentioned here), but shouldn't taper until I get off of benzos. I'm stuck and not even my doc knows what to do. I haven't experienced this level of hopelessness since the med cocktail days and have had to reduce my hours at work. I know whole heartedly that there is this person inside me that has so much more potential, but the meds have destroyed that and I'm not sure what is left. I just don't know what to do or where to go from here... 

 

 

2004-2011: EfX XR 75mg, Klonopin 0.25mg PRN 

2011- late 2015: Varying cocktail: Ritalin, EfX, Klonopin, Lamictal

late 2015-Feb 2018: 8-month taper off of everything but EfX 37.5mg, and started Wellbutrin SR 100mg (discontinued Aug 2017)

Feb 2018-Apr 2018: 45day Xtaper EfX 37.5mg w/ Zoloft 25mg. 2 weeks post taper developed akathisia & severe insomnia 

Apr 2018-May 2018: Reinstated both EfX 24 mg and Klonopin 0.25-0.5mg/night, and 2-week taper off of Zoloft

May 2018-April 2018: Efx XR 24 mg with taper; Klonopin 0.125mg (PRN)

April 2019 - December 2019 EfX XR 15 mg; Konopin 0.125mg 1-3x/month

(Sep 2019 - Rifaximin for SIBO. CT-like response. Worsened gut symptoms. Major setback that hasn't resolved as of Dec 2020)

 

4 Years Benzo Free and Held EfX XR at 15 mg 

Titrated up 5 beads (~2 mg) EfX XR since Aug 2022-March 2023. Dropped 1 bead April 2023 and holding.  

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  • Altostrata changed the title to Audo Effexor Reinstatement Fail?
  • Administrator

Welcome, Audo.

 

You're right, yours is a classic psychiatric drug horror story. I am so sorry.

 

Thank you for entering your signature. What times of day do you take your drugs, at what dosages? What is your current symptom pattern? What is your sleep pattern?

 

Since you started the Klonopin, how often are you taking it, at what dosages?

 

Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages.

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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Thank you so much for your response Altostrata. 

 

For the last month: 

6-8am: Effexor XR 20mg 

8pm: Klonopin 0.25mg. Additional 0.25mg btwn 10pm-12am if necessary for sleep. 

 

The 3 weeks prior: 

6-8am: Zoloft 25mg

 

45-days prior to that:

Zoloft 25mg while tapering Effexor

 

Symptoms are generally worst first thing in the morning before my dose and breakfast, and as I'm trying to fall asleep. Symptoms include buzzing hands, an extreme nervous/restlessness/agitation in my abdomen, and burning in my gut. And extreme insomnia that the Klonopin has helped. I have also noticed that if I have even 1 drink, or do the lightest exercise, my body goes into overdrive for hours and makes everything so much worse worse. I'm just so sensitive. All new from 2-weeks post-Effexor and since reinstatement.  

 

Since reinstating the Klonopin, I'm able to fall asleep usually around midnight and wake up to symptoms around 4-5am. In one month I have seen no evidence of stabilizing on the reinstated Effexor and starting to worry I'm needing progressively higher doses of Klonopin for sleep. It's ironic that I survived the horrific med cocktail and withdrawal (see original post) -- with the suicidal ideation, panic attacks, extreme agitation and/or akathisia, deep depression and horrifying anxiety -- without personal undoing. However, it's this, with the general absence of most mental side effects (aside from situational despair), and the insomnia, that has me most scared and at risk of losing my job. 

 

Looking back, I obviously tapered off of Effexor too fast (45-days), and then again with the Zoloft (corrected: 5-days). At the time I just didn't know better. The questions remain: Do I try to stick it out for another month, getting some sleep but risking more severe benzo dependence and withdrawal? Do I reinstate to the original 37.5mg of Effexor? Do I reinstate a small dose of Zoloft? Do I just get off of benzos and deal with the insomnia the best I can? I've already prepared myself for losing my job and fortunately I have a support system if that happens. If I have to go through hell for the next year or two so I can be better for the following 5, 10, 20 years, I'll do that. I'll do whatever I need to do to be there for my wife and 1.5 yr old son, I just don't know what this is. Any advice would be appreciated more than you know. Thank you. 

 

 

 

 

 

 

 

2004-2011: EfX XR 75mg, Klonopin 0.25mg PRN 

2011- late 2015: Varying cocktail: Ritalin, EfX, Klonopin, Lamictal

late 2015-Feb 2018: 8-month taper off of everything but EfX 37.5mg, and started Wellbutrin SR 100mg (discontinued Aug 2017)

Feb 2018-Apr 2018: 45day Xtaper EfX 37.5mg w/ Zoloft 25mg. 2 weeks post taper developed akathisia & severe insomnia 

Apr 2018-May 2018: Reinstated both EfX 24 mg and Klonopin 0.25-0.5mg/night, and 2-week taper off of Zoloft

May 2018-April 2018: Efx XR 24 mg with taper; Klonopin 0.125mg (PRN)

April 2019 - December 2019 EfX XR 15 mg; Konopin 0.125mg 1-3x/month

(Sep 2019 - Rifaximin for SIBO. CT-like response. Worsened gut symptoms. Major setback that hasn't resolved as of Dec 2020)

 

4 Years Benzo Free and Held EfX XR at 15 mg 

Titrated up 5 beads (~2 mg) EfX XR since Aug 2022-March 2023. Dropped 1 bead April 2023 and holding.  

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  • Administrator

How do your symptoms change in the hours after you take Effexor?

 

Did the Klonopin work better for a while and then not so well?

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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They seemingly improve. I actually attempted to switch to an afternoon/evening dose, but the delay not only gave me new withdrawal symptoms, but I think it destabilized me for a couple of days. 

 

It's not conclusive yet, but that's my fear and possibly a recent trend... 

2004-2011: EfX XR 75mg, Klonopin 0.25mg PRN 

2011- late 2015: Varying cocktail: Ritalin, EfX, Klonopin, Lamictal

late 2015-Feb 2018: 8-month taper off of everything but EfX 37.5mg, and started Wellbutrin SR 100mg (discontinued Aug 2017)

Feb 2018-Apr 2018: 45day Xtaper EfX 37.5mg w/ Zoloft 25mg. 2 weeks post taper developed akathisia & severe insomnia 

Apr 2018-May 2018: Reinstated both EfX 24 mg and Klonopin 0.25-0.5mg/night, and 2-week taper off of Zoloft

May 2018-April 2018: Efx XR 24 mg with taper; Klonopin 0.125mg (PRN)

April 2019 - December 2019 EfX XR 15 mg; Konopin 0.125mg 1-3x/month

(Sep 2019 - Rifaximin for SIBO. CT-like response. Worsened gut symptoms. Major setback that hasn't resolved as of Dec 2020)

 

4 Years Benzo Free and Held EfX XR at 15 mg 

Titrated up 5 beads (~2 mg) EfX XR since Aug 2022-March 2023. Dropped 1 bead April 2023 and holding.  

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  • Administrator

Why did you try to switch to a later dose of Effexor?

 

My guess is that 1) You may be getting rebound symptoms in the morning from the Klonopin; or 2) You're not taking enough Effexor to provide coverage through the night and you're getting breakthrough withdrawal symptoms.

 

The fix is different depending on symptom pattern. I need this info:

2 hours ago, Altostrata said:

Did the Klonopin work better for a while and then not so well?

 

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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I switched to a later dose of Effexor thinking that the nighttime issues were a result of less Effexor in my system from the morning dose. My experiment was inconclusive due to the instability I experienced by delaying my dose for that one day. If anything perhaps I should have just added a few additional beads in the evening and gone from there...

 

Yes, my guess is that the Klonopin worked better initially and now not so well. 

2004-2011: EfX XR 75mg, Klonopin 0.25mg PRN 

2011- late 2015: Varying cocktail: Ritalin, EfX, Klonopin, Lamictal

late 2015-Feb 2018: 8-month taper off of everything but EfX 37.5mg, and started Wellbutrin SR 100mg (discontinued Aug 2017)

Feb 2018-Apr 2018: 45day Xtaper EfX 37.5mg w/ Zoloft 25mg. 2 weeks post taper developed akathisia & severe insomnia 

Apr 2018-May 2018: Reinstated both EfX 24 mg and Klonopin 0.25-0.5mg/night, and 2-week taper off of Zoloft

May 2018-April 2018: Efx XR 24 mg with taper; Klonopin 0.125mg (PRN)

April 2019 - December 2019 EfX XR 15 mg; Konopin 0.125mg 1-3x/month

(Sep 2019 - Rifaximin for SIBO. CT-like response. Worsened gut symptoms. Major setback that hasn't resolved as of Dec 2020)

 

4 Years Benzo Free and Held EfX XR at 15 mg 

Titrated up 5 beads (~2 mg) EfX XR since Aug 2022-March 2023. Dropped 1 bead April 2023 and holding.  

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  • Administrator
3 hours ago, Audo said:

Symptoms are generally worst first thing in the morning before my dose and breakfast, and as I'm trying to fall asleep.

....

Since reinstating the Klonopin, I'm able to fall asleep usually around midnight and wake up to symptoms around 4-5am.

 

Hmmmm. You've been taking Klonopin long enough to have gotten physiologically dependent on it. This could cause rebound symptoms in the morning, as it wears off.

 

(Or, it could be not enough Effexor.)

 

When you say you get symptoms as you're trying to fall asleep, what time would that be?

 

How often do you take 0.5mg Klonopin?

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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Around 9-10pm when I'm trying to fall asleep. One of two things typically happen. Either the agitation/akathisia will ramp up within the first 30 minutes of trying to sleep, or I'll actually fall asleep and jerk away repeating this cycle several times and seemingly causing agitation/akathisia. When I was Effexor free for the 3 weeks and prior to the insomnia kicking in, my daytime energy was increasing. I would wake up with that nervous agitation in my gut, but it was almost pleasant and put a pep in my step. I wouldn't need coffee, nor want it. And then a week or so later the insomnia... 

 

Re Klonopin, In the last 30 days I've taken 0.5-1.0mg 6 times, all other days 0.25mg. 2 of those 6 days were the first two nights on, and 2 of the days were the last two nights as I felt like I needed more. 

2004-2011: EfX XR 75mg, Klonopin 0.25mg PRN 

2011- late 2015: Varying cocktail: Ritalin, EfX, Klonopin, Lamictal

late 2015-Feb 2018: 8-month taper off of everything but EfX 37.5mg, and started Wellbutrin SR 100mg (discontinued Aug 2017)

Feb 2018-Apr 2018: 45day Xtaper EfX 37.5mg w/ Zoloft 25mg. 2 weeks post taper developed akathisia & severe insomnia 

Apr 2018-May 2018: Reinstated both EfX 24 mg and Klonopin 0.25-0.5mg/night, and 2-week taper off of Zoloft

May 2018-April 2018: Efx XR 24 mg with taper; Klonopin 0.125mg (PRN)

April 2019 - December 2019 EfX XR 15 mg; Konopin 0.125mg 1-3x/month

(Sep 2019 - Rifaximin for SIBO. CT-like response. Worsened gut symptoms. Major setback that hasn't resolved as of Dec 2020)

 

4 Years Benzo Free and Held EfX XR at 15 mg 

Titrated up 5 beads (~2 mg) EfX XR since Aug 2022-March 2023. Dropped 1 bead April 2023 and holding.  

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  • Administrator

The activation when you're trying to sleep is your system kicking against the combination of your natural sleep urge (melatonin) and Klonopin. Breath through it if you can.

 

This is just a guess: I might up to 22.5mg Effexor and try to keep the Klonopin constant at 0.25mg. Dosage variations will cloud the picture.

 

We will need to track symptom pattern carefully. Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages.

 

If the symptom pattern improves, we'll know a little more Effexor is going in the right direction.

 

Then, I would reduce the Klonopin a bit. I suspect you are taking too much at once, you may need to divide the dose.

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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Thank you kindly Altostrata. For the insight and making me feel less alone. I will give it some time and report back. 

2004-2011: EfX XR 75mg, Klonopin 0.25mg PRN 

2011- late 2015: Varying cocktail: Ritalin, EfX, Klonopin, Lamictal

late 2015-Feb 2018: 8-month taper off of everything but EfX 37.5mg, and started Wellbutrin SR 100mg (discontinued Aug 2017)

Feb 2018-Apr 2018: 45day Xtaper EfX 37.5mg w/ Zoloft 25mg. 2 weeks post taper developed akathisia & severe insomnia 

Apr 2018-May 2018: Reinstated both EfX 24 mg and Klonopin 0.25-0.5mg/night, and 2-week taper off of Zoloft

May 2018-April 2018: Efx XR 24 mg with taper; Klonopin 0.125mg (PRN)

April 2019 - December 2019 EfX XR 15 mg; Konopin 0.125mg 1-3x/month

(Sep 2019 - Rifaximin for SIBO. CT-like response. Worsened gut symptoms. Major setback that hasn't resolved as of Dec 2020)

 

4 Years Benzo Free and Held EfX XR at 15 mg 

Titrated up 5 beads (~2 mg) EfX XR since Aug 2022-March 2023. Dropped 1 bead April 2023 and holding.  

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19 minutes ago, Audo said:

Thank you kindly Altostrata. For the insight and making me feel less alone. I will give it some time and report back. 

Welcome to the forum. Glad you found us. You definitely are not alone! There are so many of us who have gone through something similar— and so many who have been guided through their situation on this forum and who have found the information and support they needed to understand how these drugs work and to finally taper off. 

200 Zoloft; 10 mg Zyprexa; 4 mg valium as of May 2021;  Valium taper: July 16: 3.5 valium; July 30: 3 mg (paused valium taper); Aug. 23: 2.5 mg
Zyprexa: July 26: 8.75 mg; Aug. 9: 7.5 mg; Aug. 30: 7.1 mg

-------
Dec 1, 2016. 10 mg zyprexa for 1.5 month. Started taper mid-Jan. 2017. Cut 1.25 mg every 2 weeks; smaller cuts 2.5 mg down. Stopped at .6 mg. May 7, 2017: zyprexa free. 
Zoloft: Dec1, 2016, 200 mg. Started taper: Jun12, 2017: 197.5 mg; Jun19,:195 mg; July 2:185mg; July 9,:180 mg; July16,: 175; July 23: 170; July 30: 165; Aug6: 160; Aug13: 155; Aug. 20: 150; Aug.27: 146 mg; Sept3: 145 mg; Sept10:143 mg; Sept17:140 mg....Nov5: 122 mg...Dec3:112.5 mg; Jan14, 2018: 95 mg...Jan28: 90 mg; Feb21:80 mg; Mar11: 75 mg; May2:70 mg; May15: 68 mg; May28: 65 mg; Jun9: 62 mg;Jun25: 60 mg:July22: 55 mg; Aug25: 45 mg. Aug28: 50 mg...Oct 28: 38 mg; Dec.4: 30 mg; Jan8,2019: 25mg; Feb6: 23.5 mg; Apr1:17.5mg; May1:1 mg; May 5: 18;  May 18:15mg; June 16:12.5mg; Sept 10:11 mg; Sept.16:10 mg; Oct. 1: 9mg; Nov. 27: 8mg; Dec.5: 7mg; Jan.1,2020, 6 mg; Feb1: 5 mg; May 1: 2.5 mg; Jn 1: 2 mg; Jy 1: 1.5 mg

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  • Moderator Emeritus

Hi, Audo.

 

Welcome to SA from me, too.

 

A request: Please add this to your signature:

 

On 5/18/2018 at 3:14 PM, Audo said:

I was also 100% benzo free between April 2017 and April 2018

 

Also include the Klonopin dose you were taking at the time you stopped and include the date that you reinstated, along with your reinstatement dose. 

 

Since your reinstatement dose was varying doses of .25 - 1 mg, it's possible your reinstatement is too high a dose when you take more than .25 mg. Also, bouncing the doses around can have a destabilizing effect on your nervous system. 

 

 

14 hours ago, Altostrata said:

try to keep the Klonopin constant at 0.25mg. Dosage variations will cloud the picture.

 

I'm going to echo Alto's comment here and encourage you to stay as consistent with the .25 mg dose as possible. 

 

Please keep a drug and symptoms journal. The below link provides a very good format to use. Also include any supplements you are taking, as well as the number of hours you are sleeping at night.

 

Keep notes on paper about your drug dosages and daily symptom pattern

 

If you wish us to review your drug and symptoms journal with you, please post it here in your thread. 

 

 

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On 5/20/2018 at 4:33 PM, Madeleine said:

Welcome to the forum. Glad you found us. You definitely are not alone! There are so many of us who have gone through something similar— and so many who have been guided through their situation on this forum and who have found the information and support they needed to understand how these drugs work and to finally taper off. 

Thank you Madeleine. I have been reading various stories and finding some solace in the collective misery, hope and perseverance.  

 

On 5/21/2018 at 6:04 AM, Shep said:

Hi, Audo.

 

Welcome to SA from me, too.

 

A request: Please add this to your signature:

 

 

Also include the Klonopin dose you were taking at the time you stopped and include the date that you reinstated, along with your reinstatement dose. 

 

Since your reinstatement dose was varying doses of .25 - 1 mg, it's possible your reinstatement is too high a dose when you take more than .25 mg. Also, bouncing the doses around can have a destabilizing effect on your nervous system. 

 

 

 

I'm going to echo Alto's comment here and encourage you to stay as consistent with the .25 mg dose as possible. 

 

Please keep a drug and symptoms journal. The below link provides a very good format to use. Also include any supplements you are taking, as well as the number of hours you are sleeping at night.

 

Keep notes on paper about your drug dosages and daily symptom pattern

 

If you wish us to review your drug and symptoms journal with you, please post it here in your thread. 

 

Thank you Shep. I will heed your and Alto's advice and keep chugging along best I can. 

2004-2011: EfX XR 75mg, Klonopin 0.25mg PRN 

2011- late 2015: Varying cocktail: Ritalin, EfX, Klonopin, Lamictal

late 2015-Feb 2018: 8-month taper off of everything but EfX 37.5mg, and started Wellbutrin SR 100mg (discontinued Aug 2017)

Feb 2018-Apr 2018: 45day Xtaper EfX 37.5mg w/ Zoloft 25mg. 2 weeks post taper developed akathisia & severe insomnia 

Apr 2018-May 2018: Reinstated both EfX 24 mg and Klonopin 0.25-0.5mg/night, and 2-week taper off of Zoloft

May 2018-April 2018: Efx XR 24 mg with taper; Klonopin 0.125mg (PRN)

April 2019 - December 2019 EfX XR 15 mg; Konopin 0.125mg 1-3x/month

(Sep 2019 - Rifaximin for SIBO. CT-like response. Worsened gut symptoms. Major setback that hasn't resolved as of Dec 2020)

 

4 Years Benzo Free and Held EfX XR at 15 mg 

Titrated up 5 beads (~2 mg) EfX XR since Aug 2022-March 2023. Dropped 1 bead April 2023 and holding.  

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  • 4 weeks later...
  • Moderator Emeritus
On 5/23/2018 at 1:50 AM, Audo said:

Thank you Madeleine. I have been reading various stories and finding some solace in the collective misery, hope and perseverance.  

 

 

Thank you Shep. I will heed your and Alto's advice and keep chugging along best I can. 

 

Hi Audo, 

 

This certainly is one hard journey and you summed up people’s stories very well, it really is a collective of misery, hope and perseverance. The moderators here have great advice, they have lots of experience, so you’re in the right place.

 

All the best with your tapering xx

Been on APs, benzos, ADs and opiates, for chronic pain. Had Akathisia in the past that made me suicidal. Still on Seroquel. 2019:➡️ March10=7.25mg ✔️ April17=7.0✔️ June5=6.75✔️ July14=6.50✔️ Aug28=6.25✔️ Oct10=6.20  ✔️ Oct21=6.0✔️ Dec16=5.80 ✔️ 2020➡️ Jan 21=5.60 ✔️ April2=5.40 ✔️ May29=5.20 ✔️ Aug14= 5.0 ✔️Sep29=4.80✔️2021➡️ Jan31=4.60 mg✔️ April24=4.40mg✔️Jul17=4.30mg ✔️ Aug 28=4.20 ✔️ Oct 11=4.15✔️Nov1=4.10 ✔️ Nov21= 4.05✔️ Dec13= 4mg ✔️2022 ➡️ Jan8=3.95✔️ Jan31=3.90✔️ March2=3.85 ✔️ April4=3.80 ✔️ June16=3.75✔️ July26=3.70✔️ Sep2=3.65✔️ Oct21=3.60 ✔️ Dec8=3.55✔️2023➡️ Jan 26=3.50✔️ March 17=3.45✔️ June12=3.40✔️ July30=3.35✔️ Sep14=3.30✔️ Oct31=3.25✔️This is NOT medical advice.Consult your doctor.

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  • ChessieCat changed the title to Audo: Effexor reinstatement fail?
  • 1 year later...

Titled:  Update, findings and tips(since my last post in May 2018)

 

Original post here: ( moderator note, this is back in the original Introduction of Audo's now, and previous postings are above)

 

I originally wrote a detailed update on my situation, which is below, but I realize this may not be helpful for some people so here's a list of a few things I've learned in the 20 months since my last post. My memory is shot, and I really haven't read much online in over a year so some of this may be redundant or common knowledge. 

 

-There are few things more demoralizing in this process than having a doctor, especially a psychiatrist, dispute or discount the claims and suffering of protracted withdrawal syndrome. I've seen a ton of doctors, most were compassionate but ignorant, and a couple were comically awful; a couple psychiatrists were interested in increasing reports about the issue but said my (our) situation was exceedingly rare. It's also demoralizing to continue to see such widespread ignorance on this issue. At some point you just have to cut your losses and realize that doctors can't help, and most just make it worse by misdiagnosing and prescribing ill-advised medication. (Side note: I candidly talked to 6 General Practitioners if they would look at regular Benzo use if a patient presented with a number of obvious side-effects many of us have experienced from such use, and they all said in one way or another that it wouldn't really be on their radar. This is just mind-boggling and beyond frustrating.)

 

-A neurologist and a neuro-oriented GI both told me independently that protracted withdrawal syndrome  makes complete sense after discontinuing psych meds after long-term use and is likely a type of nerve dysfunction (they both wouldn't use damage per se). They both said that this issue is analogous to and has been identified in studies of post-viral patients or people overcoming other ailments, and both referenced a 1 to 2 year timeline where most healing of the nervous system takes place. This is interesting not only in the consistency of their claims, but also because this timeline seems to apply to most people suffering from protracted withdrawal although I know for many people it may take much longer. Also it probably goes without saying that this timeline wouldn't necessary apply until after complete discontinuation. The neurologist also specifically used "Autonomic Nervous System Dysfunction" as the underlying cause for or more formal designation of this syndrome, and also hypothesized that people who suffer from severe protracted withdrawal may have had some pre-existing dysfunction. 

 

-My situation has also followed the windows and waves pattern, although it's often hard to see it because many of the windows also include significant suffering, which speaks to how severe the waves are. 

 

-For me, the weekly micro-taper followed by the occasional several week hold seemed to introduce far more instability than the 5-10% drop per month. The 10% drop was also way too high for me, unfortunately. 

 

-Compounding pharmacies can be very helpful, but can be expensive and often can't produce the very small doses we typically need. I'm fortunate that Effexor XR has small beads that can be counted. In my research and experience using milligram scales, unless you are going to drop $1,000+ on a lab-grade scale, I would highly discourage using a scale versus counting beads. Count the beads on a flat, dark table, and scrape the beads off the table into a small funnel that fits into a capsule. The funnel is imperative and reduces like 90% of the time relative to tweezing each individual bead into the capsule. 

 

-Make sure that your medication is always coming from the same manufacturer. Your doctor and pharmacist should be able to help with this. I also use generic Effexor (Venlafaxine) which costs like $30 for a 90-day supply. I spoke to my doctor about my concerns, which currently because of my insane anxiety also includes worrying about medication shortages, and stocked up on a 2-year supply (relative to the # of beads I currently need). 

 

-I now experience withdrawal-like symptoms and possibly a wave even after a few days of OTC meds like NyQuil, antihistamines, laxatives, etc. I seem to tolerate 1-2 drinks 1-2x/week during windows, but anything more will cause issues. Drinking during a wave always makes my suffering so much worse. 

 

-As someone who was incredibly active before this debacle, I have caused waves so many times by overdoing it during the windows. If you're feeling good, go for a meditative walk, but take it easy. Also any type of severe stress for me is an immediate "Do not pass go, do not collect $200, go straight to the wave." The connection is amazing. Before I went on a leave, I would be in a window, experience an acute work stressor, and within 24 hours I would be in a wave that would last weeks. Seriously, it happened like clockwork every time. 

 

-Every single medical, "alternative" or nutritional intervention I have tried either made things worse (majority) or did nothing to help. This seems to be most people's experience, although I know fish oil and magnesium is popular, both of which seemed to cause harm in me. If you start something I would highly recommend doing it one at a time and wait weeks before introducing a new variable. 

 

-I kept a detailed daily symptom and note chart for over a year. In the end this was ineffective for me. Trends were almost always unidentifiable, and going back to review all of the symptoms and pain ended up being a net negative. I transitioned to a gratitude journal where I can focus on the positive and refer back to when I'm having a wave. Each time I have a wave I just know it'll never get better, so being able to see all the times it did get better is somewhat helpful. 

 

-Other things that have marginally helped have been mindfulness, self-CBT, practicing acceptance, and walking everyday during windows. I could see religious faith or strong spirituality being very helpful; the former is not an option and I'm always in search of the latter.  

 

-Finally, my main debilitating symptoms are gut related, akathisia and insomnia. However, the number, strangeness and severity of my other symptoms is just staggering. Here's a quick list in general order of severity/frequency for the collective record: flu-like symptoms and extreme fatigue, cognitive difficulties and memory issues, joint pain, urinary retention and frequent nighttime urination (like 12x/night sometimes), blood sugar-like crashes at ever-varying times of the day, several frightening episodes of vasovagal syncope, eczema, frequent night sweats (like having to change clothes type of sweating), daytime excessive sweating, pins and needles, blurry vision, I developed gingivitis despite good oral hygiene, I developed a yeast infection (rare for men); also not to mention the rage, dysphoria, agitated depression, suicidal depression, crippling anxiety and crushing impending doom. Despite all of this, I have completed over $10K in doctor's visits and tests within 2 years (not all out of pocket); and according to the litany of results, I am an otherwise healthy 30-something year old :S 

 

------------------------------------------------

 

I haven't posted since May 2018 and lurked for months after, but haven't checked back in about a year. This site has been an invaluable resource, particularly during my initial trauma. Had I not known everything presented by Altostrata and the rest of you warriors, oh man I just don't know, it would have been far far worse. I will say that the continued use of these online forums eventually became a double-edged sword for me, offering equal parts hope and despair. There's just so much suffering here, and while I feel less alone, I just hurt so much for everyone here and it tends to weaken what little optimism I have in my own situation. However, I thought a comprehensive update was in order for my own therapeutic needs, as well as to maybe provide some useful information for others. 

 

As I previously indicated, I tapered off of 37.5mg Effexor XR over 45 days in 2018 and developed severe akathisia two weeks after discontinuation. I reinstated to 24 mg after a week of abject hell, and also started taking low-dose Klonopin again as a much needed bandaid after being off of benzos for over a year. I'm not sure the causation/correlation, but the severe akathisia diminished over the course of the next few weeks, transitioning into moderate akathisia and severe bloating, distention, tightness and gut hypersensitivity. Most of the gut issues and other new symptoms presented a day within reinstating through. Obviously a kindling effect. Subsequently, the more severe my gut symptoms, the worse my akathisia, although it's never been as bad as it was prior to reinstating. I started micro tapering 1 Effexor bead/granule (~0.35 mg) per week, which equated to ~6% reduction per month. I continued this approach semi-regularly with occasional holds until April 2019, at which point I have held at 15 mg since. Looking back I believe 1) I should have held my original reinstatement dose of 24 mg for MUCH LONGER, and 2) a single reduction of 2-5% my previous dose per month is probably less detrimental than continued regular micro tapering. 

 

Between my reinstatement in 2018 and September 2019, I experienced severe waves and relatively brief windows, and probably little net improvement. During that time my gut issues were omnipresent, and would regularly produce akathisia and insomnia. I could have a bowel movement everyday and still experience sudden severe tightness and distention. During extreme flareups I would live for weeks at a time in my dark basement in misery I never thought possible. I would regularly go two days with no sleep followed by days of sleeping for no more than 2-3 broken hours; my gut would be so tight and uncomfortable, not pain per se, but an akathisia-like horror or hypersensitivity that would cause hours of pacing, bouts of crying and pleading, severe suicidal ideation, and two unproductive, embarrassing trips to the ER. I have spent dozens of 2am nights pacing the sidewalks outside or lying on a nearby park bench for hours with a podcast and looking at the stars, just white knuckling the torture. I would also have debilitating, sickly fatigue; hot, red, painful joints and the onset of eczema throughout my body; scary throat tightening and difficulty swallowing; and ever-rotating bouts of extreme malaise, depression, crippling anxiety and rage. I won't get into the intensity of suicidal ideation, but the cognitive dissonance between having such a strong and real urge to die, and also wanting to live with equal intensity, was/is torture. It makes it all the worse, and better, that I am happily married to an overwhelmingly supportive wife and have two wonderful boys 3.5 years and 7 months old. I'm honestly not sure if I'd still be here without my family, largely because I feel I owe it to them to hold on in the hope that one day I can be a productive father and husband. My wife has pleaded with me on a number of times that she would rather live lifetimes taking care of me in this condition than lose me to suicide. I have so much guilt because of this, and mourn the lost time with them over the last two years (plus previous 7 years while I was polydrugged into oblivion), and am constantly wondering if my kids are going to have an invalid dad who can't do anything, or worse... 

 

At any rate I would experience some windows that were not devoid of gut symptoms, but allowed me to live at maybe 65% capacity. I could mow the lawn, go on easy bike rides, play with the boys, have a drink with my wife, go to a movie, even lift light weights, etc. During this entire process, I continued to work mostly full-time; I was able to do this by working from bed or the basement at ever-varying times when my symptoms were anything but brutal. There's no doubt that the continued stress of work significantly impacted my recovery, but even though we are blessed to be financially stable, I felt like I owed it to my family to continue to bring in money, despite their protestations. 

 

During this whole time I did what many people do and sought help from a number of doctors (5 psychiatrists, 5 GPs, 1 Integrative GP, 5 GIs, 1 neurologist, 1 rheumatologist) and tests to try to solve the problem that I know now can only be solved by time. At first I was incredulous to what was actually happening; eventually I thought there may be something that could help with the gut issue. Most doctors were sympathetically clueless, a couple were accusatory and borderline abusive. There was one argumentative doctor who scolded me for going off my meds, told me that the this is what happens when I don't listen to my psychiatrist, and that my symptoms were consistent with mental illness. I'm a kind, calm person but I was so frustrated and hurt I became apoplectic and ended up dropping multiple f-bombs and was eventually seen by a kind, but unhelpful resident. 

 

The summer of 2019 I was actually feeling pretty good minus the usual gut stuff. One GI had previously suggested I get tested for small intestinal bacterial overgrowth (SIBO), which came back positive for hydrogen-dominated SIBO, even though I had no diarrhea, which now I know is exceedingly rare in this type of SIBO. The GI prescribed the antibiotic Rifaximin, which I was skeptical of and held off taking for months. At this point after 15 or so months of almost constant gut discomfort and further research, I thought it could be my savior. I was so wrong. After three days of taking it I started to experience significantly worse symptoms. My GI said this was likely a normal bacterial die-off and completely normal, and it was imperative that I take the full 2-week course. So I pushed on and it completely destroyed me. This was in August 2019 and my symptoms have gradually worsened to this day. It's like it took me to square one. 

 

A few good-intentioned but naive family members basically had an intervention with me, and told me they had made an appointment with the Mayo Clinic and would pay for travel and out of pocket medical costs. At this point I had zero hope that they would be able to help, but given my transient crippling anxiety and duration of symptoms, I can't lie and say I wasn't worried that something serious wasn't wrong with my gut (this is even after a number of previous negative tests including a CT-scan). Of course the days of tests at Mayo were all negative. The Mayo docs even scoffed at the SIBO diagnosis and said this was absolutely a false positive. (For what it's worth, the GIs I saw at Mayo also said they don't prescribe probiotics because there's not enough evidence to support their use and they can actually make many conditions worse. I thought this was really interesting.) The GIs there completely agreed and understood the connection with the pscyh drugs, and even though I was relatively regular, concluded my gut issue was likely a motility issue with visceral hypersensitivity. They prescribed daily laxatives that, go figure, made everything worse! The Miralax also caused severe depression and SI after several days of use. I tried multiple rounds of it and the same depression every time. 

 

One of the neuro GIs I saw at Mayo talked to me for about an hour, really going into my situation. He was only peripherally knowledgable about psych med discontinuation, but within his knowledge said it makes sense that some people experienced nerve dysfunction (he wouldn't call it damage) for an extended period of time, especially after using these drugs for years. He drew conclusions to relatively common and well-documented cases of nerve dysfunction in people after a severe virus or other ailment, and indicated that most of these people heal within 1 to 2 years. Also, the neurologist I saw prior to Mayo was completely in agreement about the reality of protracted discontinuation syndrome in a minority, but significant number of people. He has theorized that this is autonomic nervous system dysfunction, which I believe has been discussed on the boards, and also mentioned the parallel to other patients with nerve dysfunction who heal within 2 years or so. 

 

I  finally had to take a leave of absence from work, which was the right decision but still demoralizing. And considering that I've held my Effexor dose for 11 months now, plus had this antibiotic setback 6 months ago and continue to have worsening symptoms, I'm just having a really hard time holding onto any hope. I now think my gut issue is likely comparable to "Benzo Belly", as it's known, even though it started with the discontinuation and reinstatement of Effexor, not that this provides much comfort. I've now been decimated with withdrawal or post discontinuation syndrome for over 2 years now, and greatly struggled with the effects of being polydrugged for the 7 years before. I've also lost 35 pounds of weight I couldn't afford to lose since eating almost all types of food these days seems to aggravate my gut. What a s**t-show. 

 

Of all the medical and "alternative" interventions, the literally dozens of supplements including fish oil, magnesium and various probiotics, and other attempted treatments, everything either had no affect or made things worse, sometimes significantly. The only things that have marginally helped (at times) have been distraction, mindfulness (avoiding rumination and staying present), self-CBT (countering negative thoughts), practicing acceptance, and walking/pacing.  I could see religion being very helpful, but unfortunately this isn't an option for me; however, I'm not devoid of spirituality and the book When Things Fall Apart is one I recommend. 

 

What overwhelms me the most is that even if it takes another year or two to stabilize from my last trauma (the antibiotics), I'm still on 15 mg of Effexor that could also take another several years to get off of, and then I could deal with yet even more years of protracted withdrawal syndrome after that. Ah well, back to mindfulness in the face of dreadful uncertainty and chasing the ever-allusive radical acceptance. 

 

Anyway, best wishes to everyone suffering. 

Edited by manymoretodays
merged update in Introduction, to main Introduction, title added

2004-2011: EfX XR 75mg, Klonopin 0.25mg PRN 

2011- late 2015: Varying cocktail: Ritalin, EfX, Klonopin, Lamictal

late 2015-Feb 2018: 8-month taper off of everything but EfX 37.5mg, and started Wellbutrin SR 100mg (discontinued Aug 2017)

Feb 2018-Apr 2018: 45day Xtaper EfX 37.5mg w/ Zoloft 25mg. 2 weeks post taper developed akathisia & severe insomnia 

Apr 2018-May 2018: Reinstated both EfX 24 mg and Klonopin 0.25-0.5mg/night, and 2-week taper off of Zoloft

May 2018-April 2018: Efx XR 24 mg with taper; Klonopin 0.125mg (PRN)

April 2019 - December 2019 EfX XR 15 mg; Konopin 0.125mg 1-3x/month

(Sep 2019 - Rifaximin for SIBO. CT-like response. Worsened gut symptoms. Major setback that hasn't resolved as of Dec 2020)

 

4 Years Benzo Free and Held EfX XR at 15 mg 

Titrated up 5 beads (~2 mg) EfX XR since Aug 2022-March 2023. Dropped 1 bead April 2023 and holding.  

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  • Moderator Emeritus
27 minutes ago, Audo said:

 

Anyway, best wishes to everyone suffering. 

Thank you for this very helpful post.  

Gridley Introduction

 

Lexapro 20 mg since 2004.  Begin Brassmonkey Slide Taper Jan. 2017.   

End 2017 year 1 of taper at 9.25mg 

End 2018 year 2 of taper at 4.1mg

End 2019 year 3 of taper at 1.0mg  

Oct. 30, 2020  Jump to zero from 0.025mg.  Current dose: 0.000mg

3 year, 10 month taper is 100% complete.

 

Ativan 1 mg to 1.875mg 1986-2020, two CT's and reinstatements

Nov. 2020, 7-week Ativan-Valium crossover to 18.75mg Valium

Feb. 2021, begin 10%/4 week taper of 18.75mg Valium 

End 2021  year 1 of Valium taper at 6mg

End 2022 year 2 of Valium taper at 2.75mg 

End 2023 year 3 of Valium taper at 1mg

Jan. 24, 2024: Hold at 1mg and shift to Imipramine taper.

Taper is 95% complete.

 

Imipramine 75 mg daily since 1986.  Jan.-Sept. 2016 tapered to 14.4mg  

March 22, 2022: Begin 10%/4 week taper

Aug. 5, 2022: hold at 9.5mg and shift to Valium taper

Jan. 24, 2024: Resume Imipramine taper.  Current dose as of Feb. 22: 7.6mg

Taper is 90% complete.  

  

Supplements: multiple, quercetin, omega-3, vitamins C, E and D3, magnesium glycinate, probiotics, zinc, melatonin .3mg, anti-candida, iron, serrapeptase, nattokinase


I am not a medical professional and this is not medical advice but simply information based on my own experience, as well as other members who have survived these drugs.

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  • 2 weeks later...

I recently posted a long update as a new thread, which was more just a commentary on my overall experience and not really intended to elicit a response. However, as I've struggled in relative silence for so long, the situation is actually really bad and I could sure use some words of support. 

 

The tl;dr of my update is that I've held at 15 mg Effexor since April 2019. During this time I also used a very low dose of Klonopin 1-3x/month until December, at which point I discontinued. From April through August I was still able to work from home and somewhat functional with manageable waves. I was (mis)diagnosed with SIBO in September though and took a course of antibiotics that devastated me. Since that time everything continues to get progressively worse; I have been bedridden since January and forced to take a leave of absence from work. I experience so many symptoms but a big one is that I struggle with horrible abdominal bloating and distention, which seems to cause proportional akathisia, and then insomnia. The worst symptom though is the suicidal ideation, which seems to come in rapid 3-4 day waves concurrent with other physical symptoms all within this larger wave I have experienced since September. This is really horrifying, especially for my wonderful wife. We have two very young boys and she is constantly worried that I'm going to leave them; a thought that also haunts me. 

 

Further, after my original Effexor taper in 2018, I developed severe akathisia (that was focused in my gut, if you will), two weeks after discontinuation. I reinstated a week later, which seemed to both help and hurt. The severe pacing-all-night-akathisia went away after a few weeks and has never come back, but the reinstatement caused my lower GI tract to basically cease up and it's never been the same since. My new concern is that I'll never really stabilize while I am still on the Effexor, but will never be strong enough to continue my taper. The idea of this endless horrific limbo is just too much to handle.  

 

I am just so hopeless and am constantly fighting the idea that I have been irreparably damaged. I would be so very appreciative of any advice or encouragement. 

 

2004-2011: EfX XR 75mg, Klonopin 0.25mg PRN 

2011- late 2015: Varying cocktail: Ritalin, EfX, Klonopin, Lamictal

late 2015-Feb 2018: 8-month taper off of everything but EfX 37.5mg, and started Wellbutrin SR 100mg (discontinued Aug 2017)

Feb 2018-Apr 2018: 45day Xtaper EfX 37.5mg w/ Zoloft 25mg. 2 weeks post taper developed akathisia & severe insomnia 

Apr 2018-May 2018: Reinstated both EfX 24 mg and Klonopin 0.25-0.5mg/night, and 2-week taper off of Zoloft

May 2018-April 2018: Efx XR 24 mg with taper; Klonopin 0.125mg (PRN)

April 2019 - December 2019 EfX XR 15 mg; Konopin 0.125mg 1-3x/month

(Sep 2019 - Rifaximin for SIBO. CT-like response. Worsened gut symptoms. Major setback that hasn't resolved as of Dec 2020)

 

4 Years Benzo Free and Held EfX XR at 15 mg 

Titrated up 5 beads (~2 mg) EfX XR since Aug 2022-March 2023. Dropped 1 bead April 2023 and holding.  

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I feel like the further I go in my withdrawal, the worse I get.  It's been 5 years.

Now it's menopause on top of the withdrawals.

Of course, at least now my monthly cycles aren't causing bad symptoms...

 But like You with the antibiotic, it's one new thing to make it worse after the other.

 

I wonder if "We" have a list on the site, somewhere, of antibiotics that people have had a bad reaction to, that would certainly be helpful.

I for one would add, in Your next life, DON'T come back as a female, and that will be one less withdrawal complication You'll have to worry about when the time comes. 🙂

 

Hugs...

 

 Starting ds 2 (12.5 CR'S) = 25 MG PAXIL CR 1/21/15: 1 Pill + 10mg liquid (2 weeks) 2/4: 1 Pill + 9mg Lq (3 weeks) 2/25: 1 Pill + 8 mg lq (1 week) 3/4: 1 Pill + 6 mg lq (2 weeks) 3/18/15 1 Pill + 4 mg lq (2 weeks) 4/1/15 1 Pill + 3 mg lq (2 weeks) 4/14/15 1 Pill + 2 mg lq (2 weeks) 4/29/15 1Pill + 1 mg lq (16 days) 5/15/15 1 12.5 mg Pill ONLY (9 days) 5/24/15 12 mgs liquid (8 days) 6/1/15 11mg lq (12 days) 6/13/15 10 mg.  12/3/15 Drop from 8mg to 7.6 (24 days to) 12/27/15 7.2mgs 8/4/16 6.8mgs,  11/1/16 6.4mgs, 2/5/17 6 mgs  4/3/17 5.6mgs, 4/24/17 5.2mg, 6/13/17 4.8mgs, 9/20/17 4.4mgS, 11/23/17 4 mgs, 1/1/18 3.6 mgs, 2/15/18 3.2 mgs. 4/13/18 2.8mgs, 5/11/18 2.4mgs, 6/10/18 2.0 mgs, 8/4/18 1.6mgs,  9/27/18 1.2mgs, 12/24/18 0.8mg, 3/24/19 0.64 mg,(syringe change issue date?) 4/22/19 0.60 mg, 5/24/19 0.60 mg, 7/7/19 0.52 mgs, 8/4/19 0.44mgs, 11/4/19 0.36mgs, 2/1/20 0.28mgs, 3/1/20 0.24mgs (crash April 6) Compound started 6/28/21: 0.24mgs, 8/29/21: 0.22mgs, 10/31/21: 0.20mgs, 1/03/22: 0.18mgs, 3/5/22: 0.16mgs, 5/5/22: 0.14mgs.

 

Original Wellbutrin Dose: 6 months from 9/14 to 3/2015, 300 XL 3/15/15: Half to 150 XL ( severe symptoms started on day 12) 4/16/15: 125mg   for 20 days to: 5/6/15:   100mg  for  15 days to: 5/21/15    75mg  for  10 days to: 6/1/15:  56.25mg      13 days to: 6/13/15: 37.25mg    7 days to: 6/20/15  28.12mg   14 days to: 7/4/15  18.75mg, 7 days to: 7/11/15; RAISE BACK TO: 28.12 to 8/14/15: 18.75mg  20 days to :9/3/15 : 12.5mg, 8/4/16 9mg 1/9/17: 8.5mg 2/8/17 8mg, 3/9/17: 7.6  4/9/17  7.2  5/27/17 6.4 6/24/17 5.8, 8/1/17 5.0, 8/29/17 4.2mgs, 10/2/17 3.5mgs, 12/28/17 2.5mgs, 2/27/18 1.7mgs,  4/19/18 0.8 mgs, LAST DOSE: 6/11/18:  3 YEARS, 2 MONTHS, 27 DAYS...

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  • Moderator Emeritus

Hi Audo!  And wow, what a wonderful update, so comprehensive, and well written.  You've done a really good job of keeping tabs on your progress, to date.

 

I did go ahead and move it, or merge it back here, to your main introduction.  Reason being, that we like to keep members to just one introduction topic.  Seems like parts of it, your update, might go nicely, in some of our other topics, in the discussions in them.

I don't know if you will be staying around, or not.  If you do, you might explore more in the Symptoms and Self Care forum, and possibly comment on some of those topics.  Or in the Finding Meaning forum.    You would just use the search box in Symptoms and Self care,  or Finding Meaning, at the top right, when you are in either forum to find related topics.  Or just start a new topic in one of those forums.

If you'd like to.

 

And I do see, in your most recent post, that you might have gotten more benefit from just posting the update really.  I can understand that.  How sometimes, just getting something out, here or somewhere, or even on paper sometimes for me, can really help.

 

Do you feel like symptoms have worsened since you discontinued the Klonopin in December 2020?

And then how did you reduce from the 24 mg of EffexorXR to 15 mg?  Did you do that all at once or gradually reduce?

Just wondering, and apologies if you covered this in your update.

 

Audo,

I think that as long as you hold full healing as a very real possibility, that it might just happen.  I know that's kind of "out there", and I think that you might be more of a scientific sort, but it can't hurt.  Another moderator offered a suggestion to me, not too long after I arrived here.  And that was to look at the book, Cure, A Journey Into the Science Of Mind Over Body, the author is Jo Marchant.  It really helped me quite a bit.  I'm now 3 years plus, medication free, after many medications, over many years.  It's been a journey, for sure.  Yet, I am doing quite well now.  So far, so good!  I mean that, just as encouragement for you.......I certainly had times where I wondered, myself, if I'd ever improve.  I've been ski-ing this winter.  And again am pretty physically active.  As well as staying involved, in the kind of work I like to do.  Here.  There.  And it's a good life.  Oh, and family and friends......relationships are going well.

 

Time is really a big factor in recovery from these medications too, I've found.  And I don't want anyone to think they are irreparably damaged.  So......I don't think you are beyond repair.  Not at all.

 

Are you familiar with the Windows and Waves Pattern of Stabilization ?

And sometimes too, when we are feeling the most hopeless, that is when the most healing is happening.  I found a resilience in myself, that I never even knew existed.

 

I hope something helps, out of all that.

 

L, P, H, and G,

mmt

 

 

 

Edited by manymoretodays
minor grammar, additional

Late 2023- gone to emeritus status, inactive, don't @ me, I can check who I've posted on, and I'm not really here like I used to be......thanks.

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016.  And.....I quit smoking 11/2021. Lapsed.  Redo of quit smoking 9/28/2022.  Can you say Hallelujah?(took me long enough)💜

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider.  My success story:  Blue skies ahead, clear sailing

 

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Hey @Audo just read your story. When you say lower GI tract to cease up. What do you mean? It’s also causing your akathesia? Could you elaborate?

 

you sound a lot like me in the sense you’re in your 30s with a wife and kiddos. I’ve got a beautiful daughter. This Effexor journey has been a b**** for me. When I read your story, it reminds me a lot of myself. Up until today, my akathesia has been so *****. It’s made me question everything I was doing. I was restless constantly. The pacing lasted a week or two but finally got over it. 
 

it truly is a blessing and a curse to have a family in this situation. You ******* nailed it on the head when you said that. Supportive and keeps you going but also depressing because you don’t want be to suffering in front of them. You don’t want to think to yourself that the possibility of suicide and leaving them behind is an option. It’s truly *****. I’m not healed or even close to it. I’m actually 3 months off Effexor. It’s been a ******* ride there’s no doubt it. Symptoms have improved for sure, so I know healing happens. 
 

I don’t know what the point of me saying this to you is, other than that, I’m a fellow dad that’s 31 also suffering. I get it man. You ain’t gotta do it alone. Let’s do it together and get through this hell hole because we know there’s another side to this ****.

Example:

2018 - Started Effexor 37.5 in Janurary of 2018
2019 January, 2nd  - Cold Turkeyed from Effexor for 3 days. Reinstated on the third day, then stabilized(It took 3 months to stabilize)

2019 June - I switched from Effexor instant release to Extended Release 37.5 for better tapering. I tapered to 50% in 4 weeks before reinstating my dosage back to 37.5(due to withdrawls). I waited 2 months to stabilize but never did at 37.5

2019 September - continued to taper in to 25% on extended release

2019 October - continued to taper to half of the beads(18.75mg)... WIthdrawls were so bad I tried switching back to the instant release at the same dosage(18.75mg)

2019 November 28th - Discontinued effexor at 18.75 without anymore tapering.

 

2020 January - Just can't sleep, have constipation, low libido and still lack of full emotion

Link to comment

@Colonial thanks for the response and making me chuckle. I'm constantly worried about some new variable making things worse and fortunately menopause isn't on my radar :);  I'm sorry you have to deal with this on top of everything else. The antibiotic I took was Rifaximin, which is not absorbed systemically and known for having few side effects, yet it destroyed me. It seems that adverse reactions from antibiotics are inexplicable, with some of us doing poorly, and others not having too many any issues. I briefly scrolled through your story and looks like you've finally gotten to such a low dose of Paxil.... hopefully not too much longer for you... 

 

@manymoretodays It looks like there are four of you who commented as L, P, H, and G ( I think), thank you all! I'll probably stick around and become more active in seeking help, but also commenting on other's posts as well. There seems to be some great benefit in this group support dynamic that I have been resisting for some reason. 

 

My symptoms have worsened since December. My wife actually thinks the Klonopin is a big factor. I've been incredulous because I went a year Benzo free in 2017/2018 and didn't seem to have too many issues. Then once I had to reinstate as a bandaid for the Effexor withdrawal, I've only taken it very sparingly since. But I guess I have to acknowledge that I'm more sensitive now and even 1-3x/month may be enough for physical dependence. I reduced from 24mg to 15mg by a weekly microtaper and occasional weeks-long hold. One month I dropped the equivalent of 20%, most others was between 5-15%. 

 

Thank you for the book suggestion; I'm going to definitely check it out. And I really appreciate the encouraging words about recovery and hope. It makes me so happy to see someone who has suffered and is now doing things like skiing! 

 

@Rozon1 Thanks for responding man, appreciate it. Part of me wishes I never reinstated after my original complete taper in 2018. The insomnia and akathisia were just so bad I didn't know what to do. I read through your story and given that reinstatement is such a crapshoot, and your SI and anxiety aren't too bad, I think you made the right call. Just remember the windows and waves, and just because you experience those thoughts/emotions again doesn't mean they won't go away. 

 

So when I developed the severe akathisia, I felt it in my limbs but the most discomfort was centered in my gut. I reinstated and when the dust settled, I would experience bloating and significant distention, constipation, and seemingly weeks without passing noticeable gas. I say ceased up because it felt  like an immobile rock, like my intestines had just clenched up. The severe akathisia went away, but it felt like the nerves in my gut were exposed so to speak. It wasn't pain per se, but it was incredibly uncomfortable and activating, making sleep impossible. I believe given the previous akathisia, this feeling is still a form that symptom; the more distended I am, the worse the akathisia. This is something I still struggle with, and is frankly like 80% of my issue. 

 

 

2004-2011: EfX XR 75mg, Klonopin 0.25mg PRN 

2011- late 2015: Varying cocktail: Ritalin, EfX, Klonopin, Lamictal

late 2015-Feb 2018: 8-month taper off of everything but EfX 37.5mg, and started Wellbutrin SR 100mg (discontinued Aug 2017)

Feb 2018-Apr 2018: 45day Xtaper EfX 37.5mg w/ Zoloft 25mg. 2 weeks post taper developed akathisia & severe insomnia 

Apr 2018-May 2018: Reinstated both EfX 24 mg and Klonopin 0.25-0.5mg/night, and 2-week taper off of Zoloft

May 2018-April 2018: Efx XR 24 mg with taper; Klonopin 0.125mg (PRN)

April 2019 - December 2019 EfX XR 15 mg; Konopin 0.125mg 1-3x/month

(Sep 2019 - Rifaximin for SIBO. CT-like response. Worsened gut symptoms. Major setback that hasn't resolved as of Dec 2020)

 

4 Years Benzo Free and Held EfX XR at 15 mg 

Titrated up 5 beads (~2 mg) EfX XR since Aug 2022-March 2023. Dropped 1 bead April 2023 and holding.  

Link to comment

hey, @Audo thanks for being so open about your problems. I know it isn't the easiest thing to do but sometimes is the most theraputic thing to do, I suppose, for some. 

 

So, I'm assuming you reinstated because you were going through the akathisia feeling and other symptoms. I don't think I could blame you. I was close to reinstating a few times. Still am. It gives me some comfort knowing you wouldn't reinstate possibly looking back at it. 

 

Yea, my anxiety is still there along with just suicidal thoughts but it's more baseline normal now. Like, I'm not on the forums 4+ hours anymore a day. The only time I've visited is to respond to other people that mentioned me. I browse a little bit after that.  

 

It's so hard to stay strong throughout this process knowing I ***** up my body.  When your insomnia was bad, was it due to the akathesia feeling or did you brain just feel like it was constantly on all the time? It's probably hard to remember, but just curious..

 

You're strong going through this. If things seem to be getting worse, why not try to decrease or increase? I mean, I know you're worried about **** getting worse but are you not tempted to just be done with this? That's one thing the medication did for me, was numb me so it made things more bearable.  Right now, I don't have anything to numb me. I'm just going through the waves and windows without ****. 

 

Example:

2018 - Started Effexor 37.5 in Janurary of 2018
2019 January, 2nd  - Cold Turkeyed from Effexor for 3 days. Reinstated on the third day, then stabilized(It took 3 months to stabilize)

2019 June - I switched from Effexor instant release to Extended Release 37.5 for better tapering. I tapered to 50% in 4 weeks before reinstating my dosage back to 37.5(due to withdrawls). I waited 2 months to stabilize but never did at 37.5

2019 September - continued to taper in to 25% on extended release

2019 October - continued to taper to half of the beads(18.75mg)... WIthdrawls were so bad I tried switching back to the instant release at the same dosage(18.75mg)

2019 November 28th - Discontinued effexor at 18.75 without anymore tapering.

 

2020 January - Just can't sleep, have constipation, low libido and still lack of full emotion

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  • Moderator Emeritus
5 hours ago, Audo said:

 It looks like there are four of you who commented as L, P, H, and G ( I think), thank you all! I'll probably stick around and become more active in seeking help, but also commenting on other's posts as well. There seems to be some great benefit in this group support dynamic that I have been resisting for some reason. 

 

My symptoms have worsened since December. My wife actually thinks the Klonopin is a big factor. I've been incredulous because I went a year Benzo free in 2017/2018 and didn't seem to have too many issues. Then once I had to reinstate as a bandaid for the Effexor withdrawal, I've only taken it very sparingly since. But I guess I have to acknowledge that I'm more sensitive now and even 1-3x/month may be enough for physical dependence. I reduced from 24mg to 15mg by a weekly microtaper and occasional weeks-long hold. One month I dropped the equivalent of 20%, most others was between 5-15%. 

 

Thank you for the book suggestion; I'm going to definitely check it out. And I really appreciate the encouraging words about recovery and hope. It makes me so happy to see someone who has suffered and is now doing things like skiing! 

 

Lol.  That's my Love, peace, healing, and growth parting words.

Yes, definitely, a benzo taken for a long time, even if just 1-3 times a month, can create dependency.  So you may be experiencing some benzo WD now.

Smart wife you have!

Late 2023- gone to emeritus status, inactive, don't @ me, I can check who I've posted on, and I'm not really here like I used to be......thanks.

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016.  And.....I quit smoking 11/2021. Lapsed.  Redo of quit smoking 9/28/2022.  Can you say Hallelujah?(took me long enough)💜

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider.  My success story:  Blue skies ahead, clear sailing

 

Link to comment

Hey @Rozon1, once I discontinued I experienced insomnia with no noticeable physical symptoms. So yeah, my mind wouldn't turn off. And then it slowly turned into akathisia. I think it was part of the same process. My guess is if you had been on the drug a lot longer the same would have happened to you, but who knows. 

 

I've been dealing with withdrawal for 2 years now and not going back by increasing. Plus it would probably just make it worse at this point. One of my mistakes is that I never really stabilized and gained back my strength after the initial taper failure, then I continued the taper shortly after causing further trauma to my nervous system. During my "good" times, when I'm less irrational, I am hopeful that I will eventually stabilize on this dose, as most others have. And I will never risk experiencing what I did after my initial failure – borderline psychosis and severe akathisia. At this point I would rather be on this inconsequential dose for the rest of my life than risk that experience again. 

 

 

2004-2011: EfX XR 75mg, Klonopin 0.25mg PRN 

2011- late 2015: Varying cocktail: Ritalin, EfX, Klonopin, Lamictal

late 2015-Feb 2018: 8-month taper off of everything but EfX 37.5mg, and started Wellbutrin SR 100mg (discontinued Aug 2017)

Feb 2018-Apr 2018: 45day Xtaper EfX 37.5mg w/ Zoloft 25mg. 2 weeks post taper developed akathisia & severe insomnia 

Apr 2018-May 2018: Reinstated both EfX 24 mg and Klonopin 0.25-0.5mg/night, and 2-week taper off of Zoloft

May 2018-April 2018: Efx XR 24 mg with taper; Klonopin 0.125mg (PRN)

April 2019 - December 2019 EfX XR 15 mg; Konopin 0.125mg 1-3x/month

(Sep 2019 - Rifaximin for SIBO. CT-like response. Worsened gut symptoms. Major setback that hasn't resolved as of Dec 2020)

 

4 Years Benzo Free and Held EfX XR at 15 mg 

Titrated up 5 beads (~2 mg) EfX XR since Aug 2022-March 2023. Dropped 1 bead April 2023 and holding.  

Link to comment

Hey @Audo how are you doing today? You still experience akathesia? Any plans on tapering soon?

Example:

2018 - Started Effexor 37.5 in Janurary of 2018
2019 January, 2nd  - Cold Turkeyed from Effexor for 3 days. Reinstated on the third day, then stabilized(It took 3 months to stabilize)

2019 June - I switched from Effexor instant release to Extended Release 37.5 for better tapering. I tapered to 50% in 4 weeks before reinstating my dosage back to 37.5(due to withdrawls). I waited 2 months to stabilize but never did at 37.5

2019 September - continued to taper in to 25% on extended release

2019 October - continued to taper to half of the beads(18.75mg)... WIthdrawls were so bad I tried switching back to the instant release at the same dosage(18.75mg)

2019 November 28th - Discontinued effexor at 18.75 without anymore tapering.

 

2020 January - Just can't sleep, have constipation, low libido and still lack of full emotion

Link to comment
  • 3 months later...

Hi @Audo

 

I was searching for some information and found your post. If you drop into this forum, you may want to read my update.

 

I stopped mirtazapine C/T in Feb 2019, and went through pretty much all that you have mentioned with exception of suicidal ideation.   It has been almost 18 months now, and things were getting better over the winter and I actually gained 5lbs (out of the 40 that I have lost), but had a setback in April, where I had a recurrence of many symptoms and losing the 5lbs. I am slowly getting back to stable state, but by no means healed.

 

What has helped me  was a single minded focus on gut health, and then adding daily mindfulness, yoga and meditation to calm the mind and bear the waves.  I have had chronic IBS for 30+ years, and that was the first to go when I stopped C/T, and I was also diagnosed and treated for SIBO between July and Sept, but it didnt change the test results one bit, although I started sleeping better. 

 

Today, most of my non-GI symptoms have stabilized or resolved except  head pressure/vasodilation/hot, clogged ears, orthostatic hypotension, cold and numb feet mostly in the afternoons, and I found the herb tinospora cordifolia (also called as guduchi in ayurveda) to be helpful in this. It has histamine and mast cell stabilizing properties that I discovered after I started feeling better.   

 

My sleep is still an issue, although I have been able get atleast 4-5 hours consistently even if I have a gut flare-up. I still wake up early, but can get back to sleep for another  1-3 hours. My gut flare-ups seem to be triggered by food intolerances  to  foods that are high FODMAP (lactose, fructose, fructans, raffinose, etc.).  On a low FODMAP diet,  eliminating gluten, dairy, alcohol, most sugars, and following a low-histamine and low fermentation diet, my gut is stabilizing. I rarely have any daytime bloat, burping or gas unless there is a food trigger.  

 

My brain does spin from time to time - mainly brain fog and neuro-emotions, but thanks to mindfulness, I can recover without spiraling. 

 

With this regimen, I have mostly normal days, with an odd bad day once a week-10 days. My biggest mental symptom these days are related to a PTSD like neuro-fear of a return of the symptoms, of any change in routine,  thoughts about the future etc.. I can usually keep it at bay by being just observing and being mindful and moving on with my day and staying present. Hopefully this will resolve over time.

 

Wishing you healing and happiness.

 

 

 

 

Chronic IBS since 1990

Former smoker (1992- Jun 2017)

Prescribed mirtazapine for sleep in Aug 2017 after IBS flare-up following Nicotine cessation.

Mirtazapine 7.5mg 8/17 to 5/18

Mirtazapine 3.75mg 5/18 to 1/19

Off Mirtazapine since 2/19.

Vit B, Vit D+K2 and Magnesium Glycinate as needed.

On Ayurvedic herbs for GI issues - Guduchi since Jul 2020, Indukantham since Oct 2020

On Ashwagandha 1g since Nov 2020

 

 

Link to comment
  • 3 months later...

LOST TIME AND THE GRIND OF LONGTERM WITHDRAWAL

 

I've taken a 7 month absence for the site. Since then I've had 2 month-long "windows" and the rest waves. I've held my Effexor dose for about a year and a half, I've been off Benzes for almost 10 months, and it's been 13 months since antibiotics caused what was a cold turkey-like reaction. Mainly my gut condition worsened, causing severe bloating, tightness (being rock hard), feeling like my intestines are in a vice, visceral hypersensitivity and associated akathisia. As of now the condition isn't quite as bad as my worst point within the last year, but I'm nowhere close to where I was before I took the antibiotics. And the chronic discomfort is taking a toll. 

 

I'm still somewhat disabled during the windows, but I can do some remote work, be present for my kids, and live life for my family, albeit with a constant background hum of unhappiness. The waves are fluctuating levels of terror and unbearable discomfort that occasionally peak with rage and verbal abuse of my support system, self-harm and dangerous levels of SI (see akathisia). 

 

My oldest is now 4 years old. For his first year and a half I was coping with residual side effects of being polydrugged for years. For his years 1.5 to now, I have been devastated by withdrawal. My youngest is 14 months; I feel like I barely know him. The lost time I have experienced is unbearable, which is punctuated by my lack of religious faith. For me this life is all I have and I'm watching it go by from my figurative grave.

 

On average, most of my symptoms haven't gotten worse over the last year with the exception of SI. I want to die so bad but I want to live so bad. This contradiction is tearing me apart. I understand if I give in to my SI then I'll lose ALL time with my kids. I'm well aware that these are not always rationale thoughts. My wife is so wonderful but is burnt out taking care of me, being home with the kids for 6 months, and trying to work remotely.  Covid, the political situation (which is all but impossible to ignore), my never-improving condition and worsening SI... I just don't know how I'm going to survive the fall and winter........

 

PS: @tsrangaThank you for responding back in June. I'm glad most of your days are normal and hope it's stayed that way. I have essentially been on a low FODMAP, dairy and gluten-free diet for several years. I'm mostly sugar free and haven't had alcohol in many months. My gut issue is probably due to severe dysregulation of GABA and serotonin and no amount of further tweaking to my diet or adding supplements will do any good. I've tried it all. 

 

2004-2011: EfX XR 75mg, Klonopin 0.25mg PRN 

2011- late 2015: Varying cocktail: Ritalin, EfX, Klonopin, Lamictal

late 2015-Feb 2018: 8-month taper off of everything but EfX 37.5mg, and started Wellbutrin SR 100mg (discontinued Aug 2017)

Feb 2018-Apr 2018: 45day Xtaper EfX 37.5mg w/ Zoloft 25mg. 2 weeks post taper developed akathisia & severe insomnia 

Apr 2018-May 2018: Reinstated both EfX 24 mg and Klonopin 0.25-0.5mg/night, and 2-week taper off of Zoloft

May 2018-April 2018: Efx XR 24 mg with taper; Klonopin 0.125mg (PRN)

April 2019 - December 2019 EfX XR 15 mg; Konopin 0.125mg 1-3x/month

(Sep 2019 - Rifaximin for SIBO. CT-like response. Worsened gut symptoms. Major setback that hasn't resolved as of Dec 2020)

 

4 Years Benzo Free and Held EfX XR at 15 mg 

Titrated up 5 beads (~2 mg) EfX XR since Aug 2022-March 2023. Dropped 1 bead April 2023 and holding.  

Link to comment
On 10/11/2020 at 12:03 PM, Audo said:

PS: @tsrangaThank you for responding back in June. I'm glad most of your days are normal and hope it's stayed that way. I have essentially been on a low FODMAP, dairy and gluten-free diet for several years. I'm mostly sugar free and haven't had alcohol in many months. My gut issue is probably due to severe dysregulation of GABA and serotonin and no amount of further tweaking to my diet or adding supplements will do any good. I've tried it all. 

 

Sorry to hear about your waves.  Have you tried incorporating meditation, breathing and yoga?   I had a wave again all of September and the first week of October with a lot of daytime anxiety and GI flare-ups at night.   I made a few small changes in my routine - practiced sand-bag diaphragmmatic breathing 20 min x 3 times daily, self massage of my hands and feet, mostly having soups at night and going to bed an hour early.   This has been very helpful more than anything else I have tried...   

 

I really do wish you happier moments with your family!!

 

Chronic IBS since 1990

Former smoker (1992- Jun 2017)

Prescribed mirtazapine for sleep in Aug 2017 after IBS flare-up following Nicotine cessation.

Mirtazapine 7.5mg 8/17 to 5/18

Mirtazapine 3.75mg 5/18 to 1/19

Off Mirtazapine since 2/19.

Vit B, Vit D+K2 and Magnesium Glycinate as needed.

On Ayurvedic herbs for GI issues - Guduchi since Jul 2020, Indukantham since Oct 2020

On Ashwagandha 1g since Nov 2020

 

 

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  • Moderator Emeritus
Quote

April 2019 - Present EfX XR 15 mg; Konopin 0.125mg 1-3x/month last used in December 2020

 

There is an error in your drug signature.  We haven't got to December 2020 yet! 😉

* 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

Link to comment
  • 1 year later...

I can't believe it's been a year and a half since my last post. I thought I would provide an update, at least for the sake of documentation, and ask a couple questions. Thanks to daily notes my dedicated wife has taken, I was able to create this chart that shows the # of days per month I have experienced suicidal ideation (SI) over the last 27 months. Although it doesn't track perfectly, this does a pretty good job of illustrating the windows and waves, non-linear, and gradual progress pattern of withdrawal recovery. 

Chart.thumb.jpg.96c40b853d2d9a9f08e8e37105c70420.jpg

I've been dealing with this for 4 years now, it's been 2.5 years since antibiotics made everything 10x worse, and 2 years benzo free. I held my Effexor dose for almost 3 years, dropped 1 bead of Effexor (0.375 mg - 2.5%) in January 2022, and pretty quickly regretted it. I have had some nice windows where I felt 70-80% healed, one lasting for 4 months, and just so many nightmare waves. I've been in somewhat of a wave now since October. Looking at the chart alone, you'd think I'd have more hope, but it doesn't capture a lot of my suffering and unfortunately after dealing with this for so long, I just can't imagine healing.  

 

Question 1 : After being destabilized by antibiotics, my goal was to hold my Effexor dose until I healed, at which time I would continue my taper... slowly.. like over 5 years. Well it doesn't seem like I'll ever stabilize enough to continue a full taper. Is it possible I'm in a position where the drug is preventing me from stabilizing, but I'm so physically dependent on it that it's too dangerous to taper? My theory.. er.. my desperate hope.. was that since the antibiotics caused the major destabilization, the drug wasn't doing anything good or bad at this point, and it would just take time for my nervous system to heal. 

 

Question 2: My most troubling symptom is nighttime lower abdominal discomfort. Every night I bloat up, become distended, my abdomen gets rock hard, and I experience a kind of intense nerve discomfort - for lack of better language - that is activating and prevents me from sleeping. I mostly have a normal bm every day. I have had a normal CT scan, ultrasound, and 2 KUB X-Rays. On average, I haven't been able to fall asleep before 4-6 am for the last 2 years, which wreaks havoc on a normal functioning life. I know gut issues are very common in withdrawal, but just re-upping, can anyone speak to this or offer any advice? Every GI has basically said for this type of neuro pain/discomfort they treat it with SSRIs, benzos or gabapentin.. ha! 

 

Thanks and if I was Thanos I would snap my fingers and make you all healthy again. 

 

2004-2011: EfX XR 75mg, Klonopin 0.25mg PRN 

2011- late 2015: Varying cocktail: Ritalin, EfX, Klonopin, Lamictal

late 2015-Feb 2018: 8-month taper off of everything but EfX 37.5mg, and started Wellbutrin SR 100mg (discontinued Aug 2017)

Feb 2018-Apr 2018: 45day Xtaper EfX 37.5mg w/ Zoloft 25mg. 2 weeks post taper developed akathisia & severe insomnia 

Apr 2018-May 2018: Reinstated both EfX 24 mg and Klonopin 0.25-0.5mg/night, and 2-week taper off of Zoloft

May 2018-April 2018: Efx XR 24 mg with taper; Klonopin 0.125mg (PRN)

April 2019 - December 2019 EfX XR 15 mg; Konopin 0.125mg 1-3x/month

(Sep 2019 - Rifaximin for SIBO. CT-like response. Worsened gut symptoms. Major setback that hasn't resolved as of Dec 2020)

 

4 Years Benzo Free and Held EfX XR at 15 mg 

Titrated up 5 beads (~2 mg) EfX XR since Aug 2022-March 2023. Dropped 1 bead April 2023 and holding.  

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  • Moderator Emeritus
4 minutes ago, Audo said:

I held my Effexor dose for almost 3 years, dropped 1 bead of Effexor (0.375 mg - 2.5%) in January 2022, and pretty quickly regretted it.

 

Q:  When you first dropped the 1 bead did you feel some improvement and then things started to get worse again?

 

I'm wondering if you might be experiencing poop out.

 

Q:  What dose of Effexor are you currently taking?

 

Q:  Have you been sick at all, eg Covid, or bad reaction to Covid vaccination?  If yes, when?

 

I will ask the other mods for their assistance.

* 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

Link to comment
  • Moderator Emeritus

Another question:

 

Q:  Are you drinking alcohol, a lot of caffeine, foods containing MSG (Chinese, savoury foods), artificial sweetners (like diet Coke/Pepsi)?

* 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

Link to comment
32 minutes ago, ChessieCat said:

 

Q:  When you first dropped the 1 bead did you feel some improvement and then things started to get worse again?

 

I'm wondering if you might be experiencing poop out.

 

Q:  What dose of Effexor are you currently taking?

 

Q:  Have you been sick at all, eg Covid, or bad reaction to Covid vaccination?  If yes, when?

 

I will ask the other mods for their assistance.

Thanks for responding ChessieCat. I did not experience any improvement after the bead drop, which is I guess what I would expect if the meds were causing some of my issues. I also didn't experience any sudden worsening, just maybe gradually being more sensitive and a bit unstable over the ensuing weeks. 

 

I'm taking approximately 15 mg Effexor XR. 

 

This wave since October corresponded somewhat with my Covid booster, but I had my best window around my first two shots. I've  been sick a couple times last fall/winter, not proven Covid and relatively minor, but each time caused my symptoms to worsen. 

 

38 minutes ago, ChessieCat said:

Another question:

 

Q:  Are you drinking alcohol, a lot of caffeine, foods containing MSG (Chinese, savoury foods), artificial sweetners (like diet Coke/Pepsi)?

I had been drinking alcohol until a few weeks ago and am off it again until I stabilize a bit. I previously gave it up for a year, started up again in 2021. It didn't seem like a trigger, especially as I was drinking through my best window, but I certainly became more sensitive to it this fall/winter. Each day I drink 2 cups of weak coffee, 1 cup of tea, and 1 diet pop sweetened with stevia, as aspartame doesn't agree with me. Again, most of the time caffeine doesn't appear to be a trigger, but I'd be lying if I said I wasn't concerned how it's affecting my recovery/gut. When it was really bad in 2020 I did go weeks without it and didn't seem to change much, and I'll take daily breaks here and there, and I'm still up all night with gut discomfort. My WFH job, which I've barely hung on to through all this, is very very difficult to do without caffeine. No MSG and my diet is very clean - gluten/dairy free, lower fat, lower FODMAP. 

 

2004-2011: EfX XR 75mg, Klonopin 0.25mg PRN 

2011- late 2015: Varying cocktail: Ritalin, EfX, Klonopin, Lamictal

late 2015-Feb 2018: 8-month taper off of everything but EfX 37.5mg, and started Wellbutrin SR 100mg (discontinued Aug 2017)

Feb 2018-Apr 2018: 45day Xtaper EfX 37.5mg w/ Zoloft 25mg. 2 weeks post taper developed akathisia & severe insomnia 

Apr 2018-May 2018: Reinstated both EfX 24 mg and Klonopin 0.25-0.5mg/night, and 2-week taper off of Zoloft

May 2018-April 2018: Efx XR 24 mg with taper; Klonopin 0.125mg (PRN)

April 2019 - December 2019 EfX XR 15 mg; Konopin 0.125mg 1-3x/month

(Sep 2019 - Rifaximin for SIBO. CT-like response. Worsened gut symptoms. Major setback that hasn't resolved as of Dec 2020)

 

4 Years Benzo Free and Held EfX XR at 15 mg 

Titrated up 5 beads (~2 mg) EfX XR since Aug 2022-March 2023. Dropped 1 bead April 2023 and holding.  

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Thank you for answering all of my questions and in such a clear and concise manner.  It is much appreciated.

 

2 hours ago, Audo said:

I did not experience any improvement after the bead drop, which is I guess what I would expect if the meds were causing some of my issues. I also didn't experience any sudden worsening, just maybe gradually being more sensitive and a bit unstable over the ensuing weeks. 

 

You might not have noticed any improvement immediately after the reduction but that might have been because it was such a small decrease.  But the fact that you felt gradually worse might indicate that the drug has reached tolerance.  And this would not be surprising since you have been taking Effexor for a long time.

 

@brassmonkey Are you available to review this?  Thanks.

* 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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Even if you are not experiencing acute waves from the alcohol, it can be causing problems. Also, it is very unpredictable and could cause an unexpected wave that would take a very long time to recover from. It would be best to continue to not drink until well after reaching "0".

 

Effexor and Paxin are tied for first place as the worst ADs to taper. They are unpredictable and can be very harsh for seemingly no reason at all. A good success story would be the one for Aberdeen. She had a very rough time but made it through and is doing quite well.

 

Having been on the drug for 18 years and holding for the past 4 it is quite possible that poopout is causing some of the problems. Unfortunately, the only way out of poopout is to reduce your dose on a periodic basis and handle the symptoms as they come. Eventually the reductions will "win out" and you should start to feel better. Again, Effexor can be quite harsh even at the lower doses.

 

You could try to reinstate the last reduction and see what happens. If things improve, that could indicate poopout. If there are improvements, they should happen fairly quickly in a matter of a few days. Don't be tempted to increase further if nothing happens, that would just cause you to lose ground.

20 years on Paxil starting at 20mg and working up to 40mg. Sept 2011 started 10% every 6 weeks taper (2.5% every week for 4 weeks then hold for 2 additional weeks), currently at 7.9mg. Oct 2011 CTed 15oz vodka a night, to only drinking 2 beers most nights, totally sober Feb 2013.

Since I wrote this I have continued to decrease my dose by 10% every 6 weeks (2.5% every week for 4 weeks and then hold for an additional 2 weeks). I added in an extra 6 week hold when I hit 10mg to let things settle out even more. When I hit 3mgpw it became hard to split the drop into 4 parts so I switched to dropping 1mgpw (pill weight) every week for 3 weeks and then holding for another 3 weeks.  The 3 + 3 schedule turned out to be too harsh so I cut back to dropping 1mgpw every 4 weeks which is working better.

Final Dose 0.016mg.     Current dose 0.000mg 04-15-2017

 

"It's also important not to become angry, no matter how difficult life is, because you can loose all hope if you can't laugh at yourself and at life in general."  Stephen Hawking

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