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Posted

Hello, SA members-

 

My intro--After 9 years of antidepressant use Zoloft pooped out on me in a big way and so began the reckless polypharmacy that lead me to where I am today... At its worst I was on 5-6 psychotropic drugs including multiple serotonergic drugs that left me emotionless, anhedonic, overweight, asexual, and moody. I also experienced several frightening and dangerous episodes of serotonin syndrome that led to a hellish 4.5 year taper off of all medication. During this time I experienced severe depersonalization/derealization, serious cognitive issues, mood swings, blinding fatigue, sleep disturbance, OCD, severe anxiety, a cartoonish inability to tolerate stress, muscle twitches/tremors/jerks, headaches/head pressure, hypersexuality, visual disturbances, etc. This whole period felt quite literally felt like a nightmare and to a lesser extent continues to today.

 

I am currently nearly 6 years clean and although there has been significant improvement in many areas I continue to experience cognitive issues, episodes of confusion, intense muscle irritation, and agitation, as well as migraines. My functioning has improved but I am still a long way from living a full life. The last 6 months have been particularly difficult, as some of my worst episodic symptoms have returned. Although I believe that I will continue to heal this recent setback has made it difficult for me to believe in a full recovery.

 

Thanks "Sur" and it's great to see some "long timers" here! Wishing you all continued improvement in this very difficult journey...

 

-Light

Posted

So great to see you here, Light!

 

That was a poignant synopsis of your journey.

 

It's so very hard to have such a long setback so late in the game, but I am finding this is far more common than we realized. And it really does *not* imply anything about prognosis, although it would certainly be *reasonable* to think it did.

 

But it really doesn't. It's just that neurological healing is vastly complex and non-linear. We, as a species, are as infants in terms of understanding how it works. But we, as an illness community, are actually in the vanguard of figuring more out about it.

1996-97 - Paxil x 9 months, tapered, suffered 8 months withdrawal but didn't know it was withdrawal, so...

1998-2001 - Zoloft, tapered, again unwittingly went into withdrawal, so...

2002-03 - Paxil x 20 months, developed severe headaches, so...

Sep 03 - May 05 - Paxil taper took 20 months, severe physical, moderate psychological symptoms

Sep 03 - Jun 05 - took Prozac to help with Paxil taper - not recommended

Jul 05 to date - post-taper, severe psychological, moderate physical symptoms, improving very slowly

Posted

Hi Light, long time no speak? Its amazing you should talk about the last 6 months being really bad as I have experienced exactly the same and I am 6 years clean also.How very strange.

Started Seroxat(Paxil) for panic attacks in 1997 stopped the drug in 2005 tapered over 3 months ( doctors advice)

Suffered severe and protracted withdrawl ever since.

No other medication taken.

Posted

Hi Light,

 

So nice to "see" you! Sorry you have had a setback...I know it has been a long time...hopefully this is just a "longer wave" and when it is over you will be on your way.

Began Paxil 10/97*

Paxil free 10/16/04 (tapered over 2.5 months)

Severe withdrawal

12/04 started Lexapro due to Paxil w/d symptoms (tapered over 4 months)

Lexapro free 8/2/05

 

2 1/2 year severe protracted withdrawal

Doing well now with a few residual symptoms

Posted

Hey, Light! Great to see you here! I saw many of your posts in your "previous incarnation" :), and really liked them. I'm so sorry to hear about your recent setback. I know how it feels. We all know. But, please, believe me, it's only our mind playing tricks on us. After the better period, every next "trough" (as Sur calls them) on the WD time-continuum wants us to think it's the same all over again. But it isn't. This WD trick is once of the most perverse and dirty tricks there are. The bad waves, despite our conviction otherwise (when we're in the wave ourselves), have been getting (very very slowly, but still) weaker and weaker. Every time this ludicrously absurd pattern repeats itself, I go in my mind to the time when it used to be so much worse. I've been documenting my entire WD as best as I could, and now, when I look at what I wrote about a year or two ago, it just blows my mind. It was worse, much worse. This painful slowliness of the whole process doesn't let us feel the Improvement. It seems we weren't designed by nature to discern between such minute differences occurring from month to month. After all, nature wasn't able to predict SSRIs...

 

To make it even more complicated, there are those absurd waves that render the whole picture even more fuzzy. But on average we're still improving.

 

Oh, and there're still those wave-triggers - stress, drugs, food, and a plethora of others.

 

All in all, we're progressing, and this forum may make the Best happen - using synergy of our efforts we will get to the bottom of WD biochemically-wise, and help so many. Take care!

2000-2008 Paxil for a situational depression

2008 - Paxil c/t

Severe protracted WD syndrome ever since; improving

 

 

“The only reason for time is so that everything doesn't happen at once”

Albert Einstein

 

"Add signature to your profile. This way we can help you even better!"

Surviving Antidepressants ;)

 

And, above all, ... keep walking. Just keep walking.

Posted

Hi Mike, i find it very strange that you are having a 6 month setback......snap....since October both myself and Paul have been gettin ghit with some pretty nasty old symptoms too.As virals have been rampant over here we have just been putting it down to that but now im not so sure :unsure: . The main symptom that really bothered me in early days is my skin burning again, it just feels like you have sat in the sun too long and i know it to be damaged nerve endings.......and its been back for 6 months the longest i have had it in succession :(.

Will message you on facebook Mike, be good to catch up :)

Posted

It's so very hard to have such a long setback so late in the game, but I am finding this is far more common than we realized. And it really does *not* imply anything about prognosis, although it would certainly be *reasonable* to think it did.

Thanks, Healing. The jury's out for me. All of the people I know of who were improving and then had significant long lasting setbacks are still sick. They never got back to where they were before when things were improved. What I am experiencing now isn't the classic waves/windows pattern that I experienced with my two year benzo withdrawal. This doesn't feel anything like a wave and the worst of my symptoms have never let up on their own (only with mag./zinc and now that's not working). I agree wholeheartedly with the fact that in nearly all cases recovery is non-linear and I am sure on some level I am healing but I am very, very concerned. I've been sick for 10 years (including my taper).

Posted

But, please, believe me, it's only our mind playing tricks on us. After the better period, every next "trough" (as Sur calls them) on the WD time-continuum wants us to think it's the same all over again. But it isn't. This WD trick is once of the most perverse and dirty tricks there are. The bad waves, despite our conviction otherwise (when we're in the wave ourselves), have been getting (very very slowly, but still) weaker and weaker. Every time this ludicrously absurd pattern repeats itself, I go in my mind to the time when it used to be so much worse. I've been documenting my entire WD as best as I could, and now, when I look at what I wrote about a year or two ago, it just blows my mind. It was worse, much worse. This painful slowliness of the whole process doesn't let us feel the Improvement. It seems we weren't designed by nature to discern between such minute differences occurring from month to month. After all, nature wasn't able to predict SSRIs...

 

To make it even more complicated, there are those absurd waves that render the whole picture even more fuzzy. But on average we're still improving.

 

All in all, we're progressing, and this forum may make the Best happen - using synergy of our efforts we will get to the bottom of WD biochemically-wise, and help so many. Take care!

 

Thanks for your thoughtful post, Neuroplastic. It is a fuzzy picture and certainly one can lose sight of how bad it once was. There is also the issue of battle fatigue but there is no way of denying what I am experiencing now. I am far worse off now than I was 1-2 years ago. Your points are well taken though and I will persevere.

 

Hi Light, long time no speak? Its amazing you should talk about the last 6 months being really bad as I have experienced exactly the same and I am 6 years clean also.How very strange.

 

Hi, Squirrel!

 

It is strange--you, me, Buxy, and Paul all with basically the same pattern!

 

Hi Light,

 

So nice to "see" you! Sorry you have had a setback...I know it has been a long time...hopefully this is just a "longer wave" and when it is over you will be on your way.

 

Thanks, Hopeful!

Posted

Hi Mike, i find it very strange that you are having a 6 month setback......snap....since October both myself and Paul have been gettin ghit with some pretty nasty old symptoms too.As virals have been rampant over here we have just been putting it down to that but now im not so sure :unsure: . The main symptom that really bothered me in early days is my skin burning again, it just feels like you have sat in the sun too long and i know it to be damaged nerve endings.......and its been back for 6 months the longest i have had it in succession :(.

Will message you on facebook Mike, be good to catch up :)

 

Hi, Buxy-

 

Sorry to hear that you've had a setback. The timing with the four of us is strange. Do you feel better in the summer time? I've felt better the last two summers but the two summers before that were really bad. Yes, please say hello on fb when you have a chance!

Posted

Oops, sorry about my quoting errors above.

Posted

Light -- It might be, a la the PAWS model, that one can switch from one recovery pattern to another -- and then back again. What do you think? (I'll try to post the PAWS model here. Do you have a link easy to hand?)

 

 

It seems we weren't designed by nature to discern between such minute differences occurring from month to month. After all, nature wasn't able to predict SSRIs...

 

Absolutely. This is a key problem in managing to endure this syndrome. Someone (named Neuroplastic) should write a paper on this alone.

1996-97 - Paxil x 9 months, tapered, suffered 8 months withdrawal but didn't know it was withdrawal, so...

1998-2001 - Zoloft, tapered, again unwittingly went into withdrawal, so...

2002-03 - Paxil x 20 months, developed severe headaches, so...

Sep 03 - May 05 - Paxil taper took 20 months, severe physical, moderate psychological symptoms

Sep 03 - Jun 05 - took Prozac to help with Paxil taper - not recommended

Jul 05 to date - post-taper, severe psychological, moderate physical symptoms, improving very slowly

  • Administrator
Posted

Light, Healing -- perhaps one of you can start a topic in Symptoms about the PAWS model? I think it's very germane.

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.

  • 5 years later...
  • Administrator
Posted

Hello, LIght. Good to see you've visited. How are you doing now?

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.

Posted

Hello, LIght. Good to see you've visited. How are you doing now?

 

 

 

My sleep worsened about three years ago and is debilitating. Other things have continued to improve. Most recently the last little bit of my derealization went away as did my light sensitivity. I went out to a movie recently and didn't have any of the overstimulation issues that I've had throughout this illness. I still have bad exacerbations triggered by certain foods and exercise/exertion. 

 

Has your sleep improved at all?  

  • Administrator
Posted

That's such good news to hear you've finally seen some improvement.

 

Yes, my sleep is fairly close to normal now.

 

I was at a plateau where, after all these years, I thought fragmented sleep was my normal. I've been low in vitamin B12 for maybe forever. I started taking sublingual 1,000mcg B12 tablets maybe 10 months ago.

 

Because it was activating, I had to start with a tiny, tiny crumb and build up very slowly over months to a whole tablet. Coincidentally, my sleep got better and better. So I do pretty well now, I can count on being able to sleep shortly after I get into bed -- if I don't stay on the computer past about 7 p.m. That has a big effect on me.

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.

Posted

Awesome to hear that your sleep has improved. There are so many of us with this issue so far out that I worried that it was just a withdrawal syndrome thing that would never self-correct. 

 

I eat a plant based (vegan) diet so I do take B-12. I have had periods of not taking it due to sensitivities but resuming did not seem to make a difference with my sleep. I haven't had a blood test in years but will be doing that soon.  Thanks for the reminder about the computer. I need to work on that.

  • 1 month later...
  • Mentor
Posted

That's such good news to hear you've finally seen some improvement.

 

Yes, my sleep is fairly close to normal now.

 

I was at a plateau where, after all these years, I thought fragmented sleep was my normal. I've been low in vitamin B12 for maybe forever. I started taking sublingual 1,000mcg B12 tablets maybe 10 months ago.

 

Because it was activating, I had to start with a tiny, tiny crumb and build up very slowly over months to a whole tablet. Coincidentally, my sleep got better and better. So I do pretty well now, I can count on being able to sleep shortly after I get into bed -- if I don't stay on the computer past about 7 p.m. That has a big effect on me.

 

 

if you dont mind my asking, when do you go to bed? I try to stay off the computer at night and use those amber glasses but I don't know how long before I plan to go to bed that I should be shutting things down.

Taking a break from mentoring, please do not message or tag me, thank you! 
Got some personal stuff to deal with and am not able to give you my full attention. 

I will remove this reminder when I am back. Keep on swimming, my friends. 

😊

  • pysch med history: 1974 @ age 18 to Oct 2017 (approx 43 yrs total) 
  •  Drug list: stelazine, haldol, elavil, lithium, zoloft, celexa, lexapro(doses as high as 40mgs), klonopin, ambien, seroquel(high doses), depakote, zyprexa, lamictal- plus brief trials of dozens of other psych meds over the years
  • started lexapro 2002, dose varied from 20mgs to 40mgs. First attempt to get off it was 2007- WD symptoms were mistaken for "relapse". 
  •  2013 too fast taper down to 5mg but WD forced me back to 20mgs
  •  June of 2105, tapered again too rapidly to 2.5mgs by Dec 2015. Found SA, held at 2.5 mgs til May 2016 when I foolishly "jumped off". felt ok until  Sept, then acute WD hit!!  reinstated at 0.3mgs in Oct. 2106
  • Tapered off to zero by  Oct. 2017 Doing very well. 
  • Nov. 2018 feel 95% healed, age 63 
  • Jan. 2020 feel 100% healed, peaceful and content
  • PRESENT DAYS:  Loving life! ❤️ with all it's ups and downs ;) 
  • 6 months later...
Posted

Hi Mike, how are you these days? How is your sleep? I hope you are sleeping well now.

remeron for four and half months. 15 mg for 3 months and 4 days and 7.5 mg for 27 days. After a month later of experiencing withdrawal  , restarted taking remeron again at 15 my for 2 days, 7.5 mg for 1 day and 6 mg for 7 days.

Posted

Thanks. My sleep has been worse for the last 4 years. Other things have improved but overall the big picture isn't good in terms of my symptoms and functioning.  

Posted

I am sorry to hear that but you know what my sleep became better after I went on a low histamine diet. I didn't knew about it in the first year so I was only sleeping after every 4 days and I started sleeping 6 days out of seven after only a month switching to low histamine diet. I still can't sleep if I don't follow the exact diet. I will write about what I am eating in case you want to try. I eat 2 organic eggs with only onion and olive oil and a right ounces of pasture raised and organic milk for a breakfast. Organic quinoa with organic red bell peppers made with olive oil and onion. And for snack I eat 20 almonds and for dinner I eat quinoa with carrots made in olive oil and onions. I drink a cup of juice of kale, carrots, apple, cucumber and ginger. Everything I buy is organic and fresh and this diet was given me by a well renowned dietitian for people who took psychiatric drugs and have histamine issues. It could work for you within a week. I sleep for six hours now, 3 and half hours and then wake up with palpitations for an hour or two and then sleep again. When I am awake, I don't get up started doing meditation like only concentrating on my breaths. I hope it will help.

remeron for four and half months. 15 mg for 3 months and 4 days and 7.5 mg for 27 days. After a month later of experiencing withdrawal  , restarted taking remeron again at 15 my for 2 days, 7.5 mg for 1 day and 6 mg for 7 days.

Posted

One thing I forgot to mention was that I do use some salt and red chilli power and some turmeric when I make red peppers or carrots for quinoa. I also take high quality fish oil, pure vit c and organic vegan multivitamin tablets on a daily basis.

remeron for four and half months. 15 mg for 3 months and 4 days and 7.5 mg for 27 days. After a month later of experiencing withdrawal  , restarted taking remeron again at 15 my for 2 days, 7.5 mg for 1 day and 6 mg for 7 days.

Posted

As I mentioned above, I eat a whole food plant based diet, no added salt, oil, or sugar. I am thrilled with the diet and have had many improvements with my general health, biomarkers, etc. I think it would be hard to limit my diet further but I'll look into the diet. Does the dietician have a website? 

 

I was doing 4-7-8 breathing for a while and found it to be really helpful but it hasn't worked as well for the past month or so.  Thanks for your thoughts. 

Posted

Hi Mike,                                                             The dietian name is Dr Janice Janeja. I met her six months ago. But you can Google her website by her name and find a list of food that she mentions has a low histamine in it for free. I spend so much money to make a appointment with her and later found a website that has a list of food she describes to me for free. 

remeron for four and half months. 15 mg for 3 months and 4 days and 7.5 mg for 27 days. After a month later of experiencing withdrawal  , restarted taking remeron again at 15 my for 2 days, 7.5 mg for 1 day and 6 mg for 7 days.

Posted

Also, my sleep issues are not totally gone as I said that it has improved by 50 percent than the time I was not following this diet. But overall I see about 70 percent healing in the last 20 months. 

remeron for four and half months. 15 mg for 3 months and 4 days and 7.5 mg for 27 days. After a month later of experiencing withdrawal  , restarted taking remeron again at 15 my for 2 days, 7.5 mg for 1 day and 6 mg for 7 days.

  • 1 year later...
Posted

A quick update: I am one of the more protracted cases. Time made a difference for me but it was very very slow and my recovery was incomplete. About a year ago I was reading a chapter about chronic pain and it detailed how pain could be "learned." That through repeatedly experiencing of pain with a lot of fear and other strong emotions that pain could be encoded as a neural memory and exist long after the body physically healed. The most dramatic example of this is with phantom limb pain in which people experience pain in a limb that doesn't exist anymore because of amputation. Anyway, pain isn't really a symptom for me but it got me thinking about withdrawal syndrome which led me to the work of rehabilitation physician John Sarno, pain researcher Lorimer Moseley, and Alan Gorgon LCSW's work with chronic pain at the pain psychology center in Los Angeles. I wondered if withdrawal syndrome might be "learned" in the same way that pain can be. Let me be clear I believe withdrawal is *real,* that it has an organic basis in the nervous system and it causes incredibly *real* suffering but might the chronicity of the syndrome be explained by this "learning" which is comprised of conditioned responses. Simply, the brain doing it's job of trying to protect us to insure our survival as it does in fight or flight. That is, if we pay 24/7 attention to our symptoms as we often do with a whole lot of fear the brain thinks that we are in danger and it continues to play this neural memory (symptoms) to keep us safe. 

 

Well suffice it to say that I've been applying these treatment techniques for over a year on my own and with a therapist at the pain psychology center and I am improving at a much faster rate and have had several breakthroughs. In short I spent years 90% housebound in a constant state of hyperarousal just trying to *survive* the most severe symptoms to the point of intrusive suicidal ideation and just not thinking I could make it.  Today I am running and biking long distances, going to concerts, and doing every day things. My symptoms are improved and I am bit by bit taking my life back. This happened not because of time but because of my new view of the symptoms and working very hard applying these techniques on an almost daily basis. In this work, I am teaching my brain that these symptoms are nothing more than sensations that can be unlearned.  While I still have setbacks and plenty of rough days my life is so much better and I am so confident in my progress that I expect a full recovery. I will post more as I continue to heal in the coming months. More later.... Mike 

  • Moderator
Posted

This sounds very interesting Light, thank you for posting.

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

Posted

What strategies did you use?  Is there a book or workbook your therapist recommended?  Thanks

Mid 2014 - June 2016 (~ 2.5 yrs): sertraline 75mg. Under advice of my Pysch NP, weaned off in 1 month

Sept 2017 - Feb 2017 (6 months): Latuda (dose 20mg up to 80mg). Under advice of Psych NP, weaned off in 6 weeks (Jan - mid Feb). Tirtated down 20mg every 2 weeks.

Nov 2017 - Feb 2017 (3 months): lamictal 100mg. Abruptly taken off. This was the "wean": 100mg, 50mg, then off

Feb 2017: sertraline 150mg for 1 week to bring me out of a severe suicidal depression. Abruptly stopped due to serotonin syndrome. Tried to reinstate 50mg a week later, but the serotonin syndrome symptoms came back. Not possible to reinstate sertraline.

March 2017: remeron 7.5mg. Took one dose that knocked me out for two days. Refused to take it again

February 2017 - March 2017: Ativan 1mg. Took 5 pills total spread out over the course of 3 weeks. No longer taking it.

6/16/18 - 6/26: celexa 1.25mg

6/27/18 - 6/29: celexa 2.5mg, 6/29 had burning and agitation within 30min of dose

6/30/18 - present: celexa 1.25mg

Posted

I journaled daily, my deepest most primitive feelings, which really helped to turn the volume down on my nervous system. Many people with mind body issues report that this practice alone resulted in symptomatic relief if not a cure. There are over 300 studies showing the positive effects of expressive writing ranging from wound healing to PTSD. 

 

I also worked on focusing on my body less, tried to live my life despite symptoms, and to co-exist with them with less fear and anger. These emotions fuel symptoms so if you an find a way to increasingly be more at peace with your symptoms it will make a difference. I am also trying a technique called somatic tracking where you tune into the sensations of your symptoms and learn to just sit with them without fear, judgement, or ulterior motive. In response to these sensations I try to "soften, soothe, and allow." The technique of outcome independence or authentic indifference can also be very helpful. Again, simply learning to not care about these sensations so much, knowing that they are just that and that they are not dangerous. All of these techniques are aimed at "unlearning" the symptoms. If you can experience the symptoms enough time without fear they begin to fade. 

 

i've included links below to Dr, Howard Schubiner's website. He has a workbook that is well regarded. There is also a link to an interview with Nicole Sachs LCSW about her Journalspeak practice.  And finally a summary of Alan Gordon's, Pain recovery program, which includes essential tools. These techniques can be helpful for many symptoms beyond pain.  I hope this helps. 

 

https://www.unlearnyourpain.com

http://www.tmswiki.org/forum/painrecovery/

 

https://www.freeconferencecall.com/wall/recorded_audio?audioRecordingUrl=https%3A%2F%2Frs0000.freeconferencecall.com%2Fstorage%2FsgetFCC2%2FOCq7B%2FDNIuD&subscriptionId=6714329

Posted

Did you also have severe akathisia?

 

A chemical lobotomy? Not cog fog, but brain damage so severe it impairs basic functioning?

 

Thanks again.

Mid 2014 - June 2016 (~ 2.5 yrs): sertraline 75mg. Under advice of my Pysch NP, weaned off in 1 month

Sept 2017 - Feb 2017 (6 months): Latuda (dose 20mg up to 80mg). Under advice of Psych NP, weaned off in 6 weeks (Jan - mid Feb). Tirtated down 20mg every 2 weeks.

Nov 2017 - Feb 2017 (3 months): lamictal 100mg. Abruptly taken off. This was the "wean": 100mg, 50mg, then off

Feb 2017: sertraline 150mg for 1 week to bring me out of a severe suicidal depression. Abruptly stopped due to serotonin syndrome. Tried to reinstate 50mg a week later, but the serotonin syndrome symptoms came back. Not possible to reinstate sertraline.

March 2017: remeron 7.5mg. Took one dose that knocked me out for two days. Refused to take it again

February 2017 - March 2017: Ativan 1mg. Took 5 pills total spread out over the course of 3 weeks. No longer taking it.

6/16/18 - 6/26: celexa 1.25mg

6/27/18 - 6/29: celexa 2.5mg, 6/29 had burning and agitation within 30min of dose

6/30/18 - present: celexa 1.25mg

  • Mentor
Posted
On 5/4/2019 at 9:52 PM, Light said:

I journaled daily, my deepest most primitive feelings, which really helped to turn the volume down on my nervous system. Many people with mind body issues report that this practice alone resulted in symptomatic relief if not a cure. There are over 300 studies showing the positive effects of expressive writing ranging from wound healing to PTSD. 

 

I also worked on focusing on my body less, tried to live my life despite symptoms, and to co-exist with them with less fear and anger. These emotions fuel symptoms so if you an find a way to increasingly be more at peace with your symptoms it will make a difference. I am also trying a technique called somatic tracking where you tune into the sensations of your symptoms and learn to just sit with them without fear, judgement, or ulterior motive. In response to these sensations I try to "soften, soothe, and allow." The technique of outcome independence or authentic indifference can also be very helpful. Again, simply learning to not care about these sensations so much, knowing that they are just that and that they are not dangerous. All of these techniques are aimed at "unlearning" the symptoms. If you can experience the symptoms enough time without fear they begin to fade. 

 

i've included links below to Dr, Howard Schubiner's website. He has a workbook that is well regarded. There is also a link to an interview with Nicole Sachs LCSW about her Journalspeak practice.  And finally a summary of Alan Gordon's, Pain recovery program, which includes essential tools. These techniques can be helpful for many symptoms beyond pain.  I hope this helps. 

 

https://www.unlearnyourpain.com

http://www.tmswiki.org/forum/painrecovery/

 

https://www.freeconferencecall.com/wall/recorded_audio?audioRecordingUrl=https%3A%2F%2Frs0000.freeconferencecall.com%2Fstorage%2FsgetFCC2%2FOCq7B%2FDNIuD&subscriptionId=6714329

 

‘This sounds great, thanks for posting it.

 

R

 = medication taken now

2007 quetiapine to March 2019 200mg

2019 quetiapine March to present 225mg 

2007 citalopram to present 40mg 
2018 March Abilify 5mg  
2019 Abilify February rapid taper over 3 weeks from 5mg to off

2019 March Clonazepam as required, taken very occasionally, then taken 0.5mg for 2 days 28th and 29th March, now phased out

2019 1st April reinstated Abilify 0.5mg / day 

2018 to 2020 Liquid B12 2g twice daily (diagnosed B12 deficiency) 

2020 July reduced quetiapine to 200mg

2022 October began taper of Abilify
 

Posted
3 hours ago, TryingToHoldOn said:

Did you also have severe akathisia?

 

A chemical lobotomy? Not cog fog, but brain damage so severe it impairs basic functioning?

 

Thanks again.

 

Yes, I had akathisia or something like it. It was my worst symptom. As far as the cognitive stuff, I had difficulty understanding people language all jumbled in my head.  I had terrible attention. I lost a lot of my vocabulary. Words I knew when I was 12 had no meaning to me. I had word finding difficulties. Paraphasias-- I would intend to say "I am going to take out the trash" and instead say I am going to take out the theater." My thinking was concrete., If my wife said "hand over the blanket" I would hold my hand over the blanket. I would break down crying because the smallest task was overwhelming to me cognitively. The depersonalization/derealization was insane. Not unlike a scary scene in a movie meant to convey terror. I had visual lag. Any time something moved across my field of vision I had to close my eyes because it overwhelmed me. I had "brain zaps" so bad my eyes were forced shut while driving. My face would sometimes go numb. I couldn't get jokes. I felt incredibly dumb. I stared in space endlessly with terror coursing through my body. I obsessed about my body, my health. My sex drive shot through the roof in a way that was unsettling. I vomitted for 6 days after my final dose and was nauseas for 6 weeks. I was paranoid, prone to rage, highly emotional, had sensory sensitivities. And the list goes on and on.

  • Administrator
Posted

Mike, that's brilliant. Is it related to separating your self from your symptoms? Would love to hear more.

 

Because you're feeling better, I added our cheerful "here comes the sun" symbol ☼ to the title of your Intro topic, to show you're recovering.

 

Please continue to let us know how you're doing. I hope you will add your story to our Recovery Success Stories eventually!

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.

Posted
On 5/10/2019 at 8:00 PM, Altostrata said:

Mike, that's brilliant. Is it related to separating your self from your symptoms? Would love to hear more.

 

Because you're feeling better, I added our cheerful "here comes the sun" symbol ☼ to the title of your Intro topic, to show you're recovering.

 

Please continue to let us know how you're doing. I hope you will add your story to our Recovery Success Stories eventually!

 

Thanks for the sun symbol, @Altostrata

 

Regarding your question... *Fearful attention* fuels the syndrome of learned pain or other chronic symptoms including IMO PAWS... If you are preoccupied with your symptoms through fearful attention your brain thinks you are in danger so it keeps producing the symptoms to protect you. 

 

The idea is to learn to relate to the symptoms without fear. This can be achieved with something as simple as empowerment. For example, "I am going to go to my son's baseball game no matter how I feel." This takes some of the fear and attention away and over time the symptoms are deconditioned as the brain learns that this activity isn't as dangerous as we thought. Also, knowing that the issue is a mind body issue and not permanent damage takes away the terror and also helps one to feel more empowered. 

 

With somatic tracking we are paying MORE attention to the symptoms but in a different way. We are regarding the symptoms as "just sensations" to simply allow them to happen without fear, judgment, or ulterior motive. We simply sit with them in a relaxed state and soften around them to send a message of safety to the brain. 

 

Another technique is to "invite the symptoms in." This too fosters empowerment and paradoxically over time this 'inviting in" causes a reduction in symptoms. Some have called it "boring the brain." Showing the brain that these are just sensations and not dangerous. This allows the brain to move on to other things and protect us from real danger. 

 

These techniques all go toward unlearning the symptoms and creating new neural pathways. Let me know if you'd like any more information or if it would be helpful for me to start a separate thread about my experience using mind body techniques to recover from PAWS. 

 

 

 

Posted
1 hour ago, Light said:

Let me know if you'd like any more information or if it would be helpful for me to start a separate thread about my experience using mind body techniques to recover from PAWS. 

Hi Mike , I've been following you for almost 3 years . I can't emphasize enough how pleased I am to hear of your improvements . If you're up for it , I'd really would like to see a separate thread on the techniques you've been applying . Also , do you feel that the Akathisia has to first burn off in order to apply such techniques ? I am pretty sure it would be a good thing to start applying them while experiencing Akathisia , compared to just sitting around fretting about it.  I've had Akathisia for almost 3 years , and I've learned so far from the old timers that as long as its left untreated it does seem to clear up .. Maybe I could get your thoughts on this ..

December 2014 - Lexapro 20 mg

August 2016 Med free (6 week taper)

December 22 2021  added Abilify 5mg / Ativan .5mg / Depakote ER 1000mg

Discontinued Abilify 5mg on 12-30-21---accidental dose on 1-13-22 (looks like Ativan)

Ativan PRN/Discontinued 1-14-22

Only drug is Depakote ER 1000mg ( looking to taper slow and safe for once )

3/24/22 Depakote 625mg 

Propranolol 20-40mg  PRN

Posted
3 hours ago, Alice1 said:

Hi Mike , I've been following you for almost 3 years . I can't emphasize enough how pleased I am to hear of your improvements . If you're up for it , I'd really would like to see a separate thread on the techniques you've been applying . Also , do you feel that the Akathisia has to first burn off in order to apply such techniques ? I am pretty sure it would be a good thing to start applying them while experiencing Akathisia , compared to just sitting around fretting about it.  I've had Akathisia for almost 3 years , and I've learned so far from the old timers that as long as its left untreated it does seem to clear up .. Maybe I could get your thoughts on this ..

 

Thanks very much. Alice. I'll think about doing the separate thread. I agree that it would be good to start now even with the akathisia. The mind body approach could help it as well as other symptoms. What you are looking for in doing this work is mini-miracles. Moments when you see the mind body connection. For instance how a journaling or meditation session or other technique helps to relieve or otherwise change symptoms.  This is important because it helps you to increasingly see the mind body connection and let go of the idea that you are damaged. It gives you some small measure of control over your recovery and less terror and feelings of helplessness.  With persistence and flexibility in using the techniques this more internal locus of control will increase. 

 

I highly recommend you try journaling.  Journaling in the way described in the link above (Nicole Sachs, LCSW) helps process emotions and decrease the inner tension/rage/fear that IMO drives PAWS. The famous NYU rehabilitation physician  Dr. John Sarno believed that symptoms are distractions from repressed emotions and as soon as the repressed emotions are processed there is no longer and need of the distraction of the symptom.  

 

I also highly recommend some form of yogic breathing (e.g. 4-7-8 breathing), meditation, or some other type of relaxation technique. This calms the nervous system and along with other mind body practices helps to train the body to return to a more balanced state. It also helps because in a deeply relaxed state one can experience symptoms has harmless sensations and this goes a long way in deconditioning the symptoms.  Recently I've tried vedic or transcendental meditation and have found it to be the quickest and easiest to learn. I am doing it twice a day for 20 minutes with great results.  

 

Check out the Curable app if you are interested in a structured app for mind body techniques. They also have a closed Facebook grow that comes with membership. If you want help finding a mind body therapist let me know. If you decide to try the techniques and post about it here please tag me. Good luck! 

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