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Siskin: support for my son


Siskin

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Hi, I'm writing as the mother of a 21 year old son who was medicated throughout his childhood (age 6-18) for what his doctor described as the most severe case of OCD he had ever seen in a child that age. His life has always been difficult; before he was put on medication, his OCD was so severe he could barely leave the house, eat a meal, or even get dressed without major compulsions taking over. It was heartbreaking to watch, and I have to admit the medication did successfully manage his compulsions for many years.

 

Unfortunately, he really started to degenerate by the age of 17, and the meltdowns he dealt with all his life became more frequent and more severe. The doctor told us the meltdowns were a symptom of OCD, and began to experiment with atypical antipsychotics. We finally took him to an intensive adolescent OCD clinic at the Mayo Clinic in Rochester, where they put him on Geodon. It nearly killed him.

 

Now he has been off of all medications for over 2 1/2 years, but of course we knew nothing and he was tapered off everything way too fast. He has been in withdrawal from one medication or another for over 3 years, and is quite disabled. His worst symptoms are inability to concentrate, depression, emotional numbness, sensory hypersensitivity, facial parasthesia, inability to deal with daily stressors, craffing (crying and laughing at the same time) and PGAD.

 

The good news is that he no longer experiences OCD. About 3 years ago (before coming of Prozac), we eliminated gluten, dairy and corn from his diet, and within 10 days he started to sleep through the night for the first time in his life, have daily bowel movements, and a variety of tics he'd had for years vanished. He continued to have meltdowns and panic attacks until this last September when we went on the Specific Carbohydrate Diet. Now he's had only 2 small panic attacks in the past 8 months

 

While my son really does not want to focus his own attention on his situation by reading posts on this website, I've been lurking here for quite a while now and have found a lot of guidance and support. I realize that we made many mistakes along the way, and I'm doing the best I can to not live in constant guilt. I would love to hear from others who have been medicated through childhood and were able to recover. I really need some hope.

Edited by scallywag
tags added

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

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  • Administrator

Hi, Siskin. Welcome to the forum. I'm glad you're here as an advocate for your son. 

 

I started taking these drugs at 17, so I was older than your son, but we do have members who started in grade school and are now in their twenties and finding their way off these drugs. So your son is definitely not alone in this.

 

The symptoms you describe sound very much like withdrawal symptoms that many of us here have experienced. Here are some links to read about the withdrawal symptoms:

 

What is withdrawal syndrome? 

 

The Windows and Waves Pattern of Stabilization

 

There's also a great thread about something called "neuro emotions" that might help you understand what your son is dealing with:

 

Neuro Emotions

 

And information on non-drug ways of coping with symptoms:  

 

Non-drug techniques to cope with emotional symptoms

 

Have you read Robert Whitaker's book Anatomy of an Epidemic?  Whitaker is an award-winning journalist who has been covering these drugs and uncovering a lot of the lies, fraud, and corruption that led to the wide-spread use of these drugs. I also wanted to bring to your attention Whitaker's Mad in America website, which has a lot of great information, and especially the connected website Mad in America Continuing Education. There's a course being offered that's free of charge to view by Dr. Bonnie Kaplan and Dr. Julia Rucklidge that may be of interest to you and your son. Here's the link:  The Mental Health of Nutrition

 

I don't know if any of this is something you and your son want to explore, but I recently viewed this nutrition course and was glad to see research being geared toward nutrition.

 

That being said, please be very careful of supplements and vitamins because during withdrawal and recovery, the CNS becomes extremely sensitive and can have a powerful (over) reaction and can actually make things worse. We have a number of threads on different supplements, so please research all of these carefully and feel free to ask questions. 

 

There's also a great website called Beyond Meds that explores a lot of mental health issues in a very holistic and healing way. Here's the link to the section on nutrition and mental health - Beyond Meds - Gut Health

 

Even though your son has been through a lot, it sounds like you're doing everything you can, but you fell into the same trap that we all did - you trusted the medical establishment to take care of him. You have absolutely nothing to feel guilty about. We all are raised to trust doctors and not question them. The good news is your son is off his meds and is already 2.5 years into the recovery phase. 

 

Has he started having any windows yet? As he starts to feel better, he'll start bringing in these non-drug methods of coping and that will comprise his life narrative - he'll define himself less and less by the drugs and start to build a new foundation of good, clean foods, healthy exercise, and a clearer mind. Knowing he's not "mentally ill" but suffering from severe food allergies is good news and I'm so glad to hear of his success through diet. 

 

Please use this thread for updates and to ask questions. As your son is feeling better, let him know he is more than welcome to post and ask questions himself. 

Drug free May 22, 2015 after 30 years of neuroleptics, benzos, z-drugs, so-called "anti"-depressants, and amphetamines 

 

My Success Story:  Shep's Success: "Leaving Plato's Cave"

 

And what is good, Phaedrus, and what is not good — need we ask anyone to tell us these things? ~ Zen and the Art of Motorcycle Maintenance


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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savinggrace

Siskin and Shep,

 

Siskin, I am so sorry for what all this has done to your life and the life of your son. Does it help you at all that you just helped me? I have severe food allergies, and on the precipice of a getting a feeding tube if I can't figure out a diet that my GI (and brain) will tolerate soon. I have studied the Specific Carbohydrate Diet before and found it similar to the low FODMAP diet, but I will review it again to see of there are any nuances I should pay heed to.

 

I have studied Gia's work on Beyond Meds. Are you aware of histamine intolerance? She thinks it was life-changing when she adjusted her diet for this. I find it a very difficult diet but I am adopting many of the principles. I am not a purist yet, because I am eating so few foods, I am left w/ nothing if I listen to everyone. Anyway, I am convinced about the food connection. Your son has a fighting chance as I suspect he is much younger than me. I think you have every reason to be hopeful. He is very lucky to have you as his mom.

 

Shep, thanks for the link to the nutrition book. I feel like I have read it all, but if I glean just one small thing from it that helps, great. I have not read Anatomy of an Epidemic as I suspect it will only further convince me of what a devastating effect these drugs have on lives, and all one has to do is follow this forum to know the almost unspeakable.

 

Thank you both,

Grace

amitriptyline from 1980-2002, along wi/ intermittent, infrequent use of benzos over 2 decades

2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg

2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )

2016 Tapered 75 mg. trileptal  first year. 6 month hold.  Resumed micro-tapering trileptal 2-10% every few months

January 2020  12.74 valium, 4 mg. remeron.  128 mg. trileptal 11/28/20;

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Shep, Thank you for replying so quickly, and thanks for the links. Because I've been following SA for a couple of years, I've read all the links you mentioned, and they've been a tremendous help to get me this far. I've also read Anatomy of an Epidemic and have spent some time on Mad in America, but I didn't know about the Continuing Ed section. My son won't want to watch the course, nor can he even cook due to his symptoms, but I definitely will. I feel like an evangelist for nutritional treatment.

 

Right now he's on the GAPS diet, and it has definitely helped a lot. When we moved on from his original psych, we switched over to a holistic psych who first started him on the GF/CF diet, then after 3 months on a list of supplements as long as my arm; that was the same doc who tapered him off Prozac in 3 months. We don't work with that doc anymore, and now he takes just 3 supplements: multi-vit/min, omegas, and vit D (required in our latitude). When he originally went GF/CF, he lost 30 pounds. At 6 ft tall, his weight dropped from 165-135. I believe the extra weight to have been toxins stored in his tissue from leaky gut and years of poison administered to his body, and when he shed it, he looked absolutely malnourished. I actually feel really good about his current diet, and now that he has put back on 15 pounds his body looks much healthier.

 

He has had 2 windows - the first for a little over a week last October (after 2 years of relentless symptoms), then another this February for almost a month. The window were wonderful, and a huge, needed relief for our entire family. He didn't feel "normal" then, just much less intense symptoms. It has definitely been a long haul. And he has never gotten any relief from the inability to concentrate. This is probably in his top 3 most difficult symptoms, as he is a super bright young man, his identity was always built around his intelligence, and he really desires to go to college and to LEARN. He gets other little windows (peepholes?) from individual symptoms, but he sure could use more big windows.

 

I know worry never helps, but my biggest worry is that because his system never had a chance to develop normally, it won't know what to "recover" back to. I'm trying to remain hopeful that because he was such a good thinker before he went off meds his brain will somehow find its way back. I've read mixed messages about young people recovering...some feel that younger people are more resilient and so able to use neuroplasticity more easily; others warn that the outcome is not good when normal development is interrupted.

 

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

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Hello Grace,

 

What a sweet reply! I have run across the histamine intolerance issue, but like you say, it can be a bit intimidating to restrict diet even more. I'll have to read about it more carefully and perhaps give it a go if it can work hand-in-hand with GAPS.

 

My son is desperately in need of some kind of improvement...he is truly the purest, most beautiful soul I've ever met, and last night in tears he told me that he is becoming bitter. I can't stand to watch that happen. But one thing I've learned being his mother is that there is always another avenue to try.

 

Thank you,

Siskin

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

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*topic moved from symptoms forum

 

Hello,

 

Does anyone know if there is a pattern to which symptoms/types of symptoms are typically the last to go? Or is it as unique as the rest of everyone's story?

 

Thanks,

Siskin

Edited by Petunia
added note

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

Link to post
  • Administrator

 

Shep, thanks for the link to the nutrition book. I feel like I have read it all, but if I glean just one small thing from it that helps, great. I have not read Anatomy of an Epidemic as I suspect it will only further convince me of what a devastating effect these drugs have on lives, and all one has to do is follow this forum to know the almost unspeakable.

 

Thank you both,

Grace

 

 

Grace, I so hear what you're saying about Anatomy, and it is "almost unspeakable".

 

I hope you are able to get your diet sorted out and you start feeling better soon.  

 

Drug free May 22, 2015 after 30 years of neuroleptics, benzos, z-drugs, so-called "anti"-depressants, and amphetamines 

 

My Success Story:  Shep's Success: "Leaving Plato's Cave"

 

And what is good, Phaedrus, and what is not good — need we ask anyone to tell us these things? ~ Zen and the Art of Motorcycle Maintenance


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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  • Administrator

 

 

He has had 2 windows - the first for a little over a week last October (after 2 years of relentless symptoms), then another this February for almost a month. The window were wonderful, and a huge, needed relief for our entire family. He didn't feel "normal" then, just much less intense symptoms. It has definitely been a long haul. And he has never gotten any relief from the inability to concentrate. This is probably in his top 3 most difficult symptoms, as he is a super bright young man, his identity was always built around his intelligence, and he really desires to go to college and to LEARN. He gets other little windows (peepholes?) from individual symptoms, but he sure could use more big windows.

 

I know worry never helps, but my biggest worry is that because his system never had a chance to develop normally, it won't know what to "recover" back to. I'm trying to remain hopeful that because he was such a good thinker before he went off meds his brain will somehow find its way back. I've read mixed messages about young people recovering...some feel that younger people are more resilient and so able to use neuroplasticity more easily; others warn that the outcome is not good when normal development is interrupted.

 

 

I tend to agree with the research that shows that younger people are more resilient and able to use neuroplasticity more easily. The fact that he's been off his drugs for 2.5 years and is now having windows is proof enough. And it's only going to get better for him. He's going to have a life now. It may not be perfect and there will definitely be struggles ahead, but his outlook is so much better off these drugs than on. 

 

 

 

 

My son is desperately in need of some kind of improvement...he is truly the purest, most beautiful soul I've ever met, and last night in tears he told me that he is becoming bitter. I can't stand to watch that happen. But one thing I've learned being his mother is that there is always another avenue to try.

 

 

 

 

Part of this is coming from withdrawal and part is situational - he's been sick for a very long time. It's hard not to be bitter. Once he starts to get more and more windows, the bitterness will be offset by his successes and accomplishments. And from what you've shared about your son, his successes and accomplishments will outshine everything else. He just needs to hang in there and survive withdrawal. 

 

In many ways, he's farther along than many of his peers - to be "pure" and "beautiful" amidst all this chaos is quite amazing. And again, it's only going to get better for him. 

 

I "stole" this from AligG's thread and I'm placing it here because it just seems to fit your son: 

 

 

I just wanted to share this - I saw it and thought of all the beautiful people here.

 

 

"The most beautiful people we have known are those  who have known defeat, known suffering, known struggle, known loss and found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassions, gentleness and a deep loving concern.

Beautiful people do not just happen. "

 

Drug free May 22, 2015 after 30 years of neuroleptics, benzos, z-drugs, so-called "anti"-depressants, and amphetamines 

 

My Success Story:  Shep's Success: "Leaving Plato's Cave"

 

And what is good, Phaedrus, and what is not good — need we ask anyone to tell us these things? ~ Zen and the Art of Motorcycle Maintenance


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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Siskin welcome to sa.

Sorry to read of your sons plight.

 

I believe there is great hope to hold onto....one of my favourite books is Psychiatric drug withdrawal by Peter Breggin..

Peter says,

"Children and teenagers are most likely to experience complete clinical recovery from clinical brain impairment after termination of medication".

....(...)...even for adults he gives hope saying,  "improvement can continue for years after termination of the medications."

 

Stay the course drug free and say NO to legalized drug pushers and i think there is much to look forward to.

 

nz11

Thought for the day: Lets stand up, and let’s speak out , together. G Olsen

We have until the 14th. Feb 2018. 

URGENT REQUEST Please consider submitting  for the petition on Prescribed Drug Dependence and Withdrawal currently awaiting its third consideration at the Scottish Parliament. You don't even have to be from Scotland. By clicking on the link below you can read some of the previous submissions but be warned many of them are quite harrowing.

http://www.parliament.scot/GettingInvolved/Petitions/PE01651   

Please tell them about your problems taking and withdrawing from antidepressants and/or benzos.

Send by email to petitions@parliament.scot and quote PE01651 in the subject heading. Keep to a maximum of 3 sides of A4 and you can't name for legal reasons any doctor you have consulted. Tell them if you wish to remain anonymous. We need the numbers to help convince the committee members we are not isolated cases. You have until mid February. Thank you

Recovering paxil addict

None of the published articles shed light on what ssri's ... actually do or what their hazards might be. Healy 2013. 

This is so true, with anything you get on these drugs, dependance, tapering, withdrawal symptoms, side effects, just silent. And if there is something mentioned then their is a serious disconnect between what is said and reality! 

  "Every time I read of a multi-person shooting, I always presume that person had just started a SSRI or had just stopped."  Dr Mosher. Me too! 

Over two decades later, the number of antidepressant prescriptions a year is slightly more than the number of people in the Western world. Most (nine out of 10) prescriptions are for patients who faced difficulties on stopping, equating to about a tenth of the population. These patients are often advised to continue treatment because their difficulties indicate they need ongoing treatment, just as a person with diabetes needs insulin. Healy 2015

I believe the ssri era will soon stand as one of the most shameful in the history of medicine. Healy 2015

Let people help people ... in a natural, kind, non-addictive (and non-big pharma) way. J Broadley 2017

 

 

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nz11,  Thanks so much for letting me know about the book. The books and articles I've read so far have not been encouraging about the prognosis for children, so this is great news to me. I'll have to pick up a copy of the book and see what else he has to say.

 

And Shep, thank you for your words of encouragement as well. I know it seems like such a small thing to be upset about him becoming bitter, resentful and dark, but you're absolutely right that he's dealing with both situational and w/d issues. Hopefully it won't change who he really is at his core. I loved your quote about beautiful people and suffering; I feel like anyone who goes through this has earned some kind of halo.

 

There are a couple of symptoms that have been especially troublesome over the past few days when it's been perfectly sunny here. We live in a maritime climate, so most of our days are cloudy, often rainy. We love sunny days! But for my son, the intensity and especially the contrast of light on sunny days is unbearable. Since he's been in w/d, he always spends a lot of time closed up in his room (which we had to paint gray), but on sunny days he can barely leave the room at all. We've tried many types of sunglasses, but haven't found anything so far that helps. Also, it even seems to extend beyond his vision; sunny days are when he's most likely to complain of the feeling of being "exposed". He says it feels as if he's standing naked on top of a mountain being watched. Even if it's hot, he wears a long sleeve shirt buttoned right up to the neck, and wishes for something to come up even higher. These are both symptoms that he can experience any time, but they seem to be much worse when it's sunny. Does anyone have any ideas on how to give him some relief?

 

Siskin

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

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Siskin. I just wanted to welcome you also. As a mother myself I can empathize. It must be hard to watch your son going through this, but you're in a place of support and information. You couldn't do better.

There are a lot of good ideas for dealing with symptoms in " Symptoms & Self Care".  Have a read through, and you will pick up some tips that could help.

I think with the sun, it's a case of short stints of exposure, with plenty of cover up , and find some good sunglasses. I have a similar situation and I find Ray- Bans good.

There is a lot of hope.

Ali

Many SSRI's and SSNRI's over 20 years. Zoloft for 7 years followed by Effexor, Lexapro, Prozac, Cymbalta, Celexa, Pristiq, Valdoxan, Mianserin and more - on and off. No tapering. Cold turkey off Valdoxan - end of May 2014

 

                                                  Psych Drug - free since May 2014
.
         

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Hi Siskin, 

I can´t really give any useful information concerning your son as I only had my first experiences with AD later in my life but I am very touched by your story because I too have a mother who cares a lot about me in my withdrawal and I know this must be really hard. 
It seems so unfair that some people have to deal with these troubles from such a young age on but it appears to me that the both of you are on the best way to an improvement now. And I sincerely hope that recovery will unfold as soon as possible!
All the best, 

Pepita

2005-2006: Cipralex 5 mg

2009-2010: Cipralex 5 mg

2012-2015: Cipralex 5mg, 10mg 

tapered 10mg-7.5mg-5mg-2,5-0 (I always waited for a few weeks on the current dosage until I felt stable. Steps were too big I realized too late)

Completely drug free since August 2015

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savinggrace

HI Siskin,

 

I have been absent for a few days, but after reading your response, I have to tell you that a low histamine diet is not congruent with GAPS at all...so if you think GAPS is helping then forget about low histamine.  Low histamine focuses on fresh food (so fresh I am hard-pressed to know how to get it).  There is a big no-no to bone broth and  ferments.

 

It's so hard sorting all this out, isn't it?  Sorry if you mentioned it before, but have you considered FODMAPS?  My recollection is that it is similar to the SCD, but maybe a bit more restrictive.  With FODMAPS it is very hard for me to get enough fiber and the vegetable list is very short (and odd). 

 

Hope you continue to find help and support here.  Sometimes it is just good to have someone to listen to.  I have serious GI illness, so if you ever want to dialogue about the nuances of the choices in diets and food, feel free to PM me.  I have been studying nutrition (not a professional; school of hard knocks and still studying).

 

I was just very intrigued w/ your direct connection to diet and your son's emotional state.  I don't think this is given enough attention.  Our gut is our second brain.

 

Grace

amitriptyline from 1980-2002, along wi/ intermittent, infrequent use of benzos over 2 decades

2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg

2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )

2016 Tapered 75 mg. trileptal  first year. 6 month hold.  Resumed micro-tapering trileptal 2-10% every few months

January 2020  12.74 valium, 4 mg. remeron.  128 mg. trileptal 11/28/20;

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  • 3 weeks later...

Thank you all so much for responding; it really does help me a lot to have someone who will "listen". I've been off-line a few days and am just getting back.

 

I'm sure most everyone on this site has a mother somewhere whose heart is being torn out of her chest by watching her child suffer so, no matter what age they are. And for anyone out there who doesn't have a mom to worry over you, please know that this mom understands your suffering and cares deeply.

 

He has always had significant sensory processing problems, primarily visual and auditory, but I believe it's a lot worse in w/d. My theory on why he developed such severe OCD symptoms as a little boy is that his poor little brain was trying to place control on a world that felt very out of control to him. The ssri did actually help him be able to tolerate his sensory challenges for all those years. Unfortunately, it kind of masked them, so while they were on the back burner, we missed many years of opportunity for him to receive OT for sensory processing disorder. He has been variously diagnosed with OCD, autism spectrum disorder, and when the p-doc finally started him on the atypical antipsychotics, he was hinting toward bipolar because of his rapid mood shifts. The diet has revolutionized his ability to deal with stress. He dealt with major meltdowns and panic attacks 2 or 3 times a week all his life...horrible, and with aftermath very much like what a person would experience after a seizure - total exhaustion and inability to function for several hours after. But on the GAPS diet, he's had exactly 2 panic attacks since the beginning of September. I feel like we've found the diet that works for him. The rest of our family pretty much follows the same diet now (although I cheat with a daily dose of dark chocolate!), and I can't help but believe it's good for all of us.

 

We've made an appt. for him to see the eye doctor next week. We both know his issue with light isn't due to his eyes, it's a CNS problem. But we're hoping they can make him some custom sunglasses that are darker than anything we're able to find in the store here (small town).

 

The way he describes his perception of light (especially on sunny days) is like the whiteness on the planet Miranda in the Firefly Serenity movie. Has anyone seen that? He relates very strongly to the character River. The story seems pretty much like a parable about anti-depressants to me. Very interesting.

 

One of the hardest things watching him go through this at a young age is that he's missing so many life experiences and developmental opportunities. He's 21 and has spent 4 years now (3 years in w/d, and a year leading up to that when everything seemed to be falling apart) almost completely at home. He has been able to take 1 class at a time at the community college, but very little beyond that. I really just wish he could get through this so he could start having a life. Plus, his younger brother, who is his best (only) friend, is going off to college in the fall. He will be left here with his dad and me...not such great company for a 21 year old guy. So lonely and sad. Can anyone tell me how you've been able to deal with the isolation and loneliness?

 

Thank you so much for letting me voice my concerns here even though I'm not personally going through recovery; it really means a lot to me.

 

Siskin

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

Link to post
  • Administrator

We've made an appt. for him to see the eye doctor next week. We both know his issue with light isn't due to his eyes, it's a CNS problem. But we're hoping they can make him some custom sunglasses that are darker than anything we're able to find in the store here (small town).

 

The way he describes his perception of light (especially on sunny days) is like the whiteness on the planet Miranda in the Firefly Serenity movie. Has anyone seen that? He relates very strongly to the character River. The story seems pretty much like a parable about anti-depressants to me. Very interesting.

 

 

Hi, Siskin. Thanks for posting more information.

 

I haven't seen this movie (although it does sound interesting), but many of us have problems with sunlight, so getting some really dark glasses sounds like a great idea.

 

You mentioned that your son had sensory problems prior to psychiatric drugs, but that withdrawal made it worse. He may be experiencing something called depersonalization / derealization (dp/dr). This is a common withdrawal symptom that makes it difficult to have a sense of "self" and it makes you view the world as if it were some sort of alien land. It can be quite distressing. But it will pass in time, just like all of the other symptoms.

 

My worse symptom is dp/dr and there are a ton of sensory processing problems with it. I find fluorescent lights make it a lot worse. Going to the grocery store still makes me very, very disoriented. Sunlight is also very difficult and sunglasses definitely help.

 

 

 

One of the hardest things watching him go through this at a young age is that he's missing so many life experiences and developmental opportunities. He's 21 and has spent 4 years now (3 years in w/d, and a year leading up to that when everything seemed to be falling apart) almost completely at home. He has been able to take 1 class at a time at the community college, but very little beyond that. I really just wish he could get through this so he could start having a life.

 

 

I know this must be excruciating for you to watch. But he was 18 or 19 when he came off these drugs. And what he's learning regarding nutrition and non-drug coping skills is nothing that's taught in college. In many ways, he's advanced. His education just came differently. And that's okay because it's the only way this knowledge is currently obtained. Western medicine simply hasn't caught up.

 

 

 

Plus, his younger brother, who is his best (only) friend, is going off to college in the fall. He will be left here with his dad and me...not such great company for a 21 year old guy. So lonely and sad. Can anyone tell me how you've been able to deal with the isolation and loneliness?

 

 

Is he able to do online classes? Are there some volunteer opportunities near where you live?

 

Finding structure can be very helpful during withdrawal.  Due to the windows and waves nature of withdrawal, it can make regular attendance difficult, but perhaps there are some activities that he could enjoy when he's having good days.

 

Does your son like pets? One of my favorite volunteer jobs was walking dogs and playing with cats at an animal shelter. Many shelters don't have regular schedules for this - you simply show up at least once or twice a week and take a dog for a walk or play with a kitten or cat.

 

And there may be other volunteer opportunities to get him out of the house and involved as he heals.

Drug free May 22, 2015 after 30 years of neuroleptics, benzos, z-drugs, so-called "anti"-depressants, and amphetamines 

 

My Success Story:  Shep's Success: "Leaving Plato's Cave"

 

And what is good, Phaedrus, and what is not good — need we ask anyone to tell us these things? ~ Zen and the Art of Motorcycle Maintenance


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.

 

Link to post
savinggrace

Hopefully, dark glasses will help, Siskin. This is interesting to me. I CRAVE sunlight, but absolute can't abide artificial light, especially fluorescent lighting...makes me want to jump out of my skin. My husband and I often sit in the dark all evening with only light from a small tv. Even large tv screens bother me.

 

On a different note, I studied the SCD yesterday. I would love to try it, but w/ no grains and my inability to digest green vegetable (which I love and miss) I feel like constipation would plague me worse than it does now. No dairy, gluten, ferments, raw, or eggs either. Any thoughts? Maybe no comparison because your son's digestive system is almost 40 years younger than mine, and he's had the benefit of his mom's early diet intervention. BTW I have the same issue w/ the GAPS diet.

 

Again, as a mom I feel your pain but also feel how lucky your son is to have you. I know how much work and study all these diets are. Right now I am over-whelmed by the contradictions (add in FODMAPS and histamine intolerance)... Even w/o these drugs and w/d it would be a lot to handle!

 

You are on the right path. Tons of hope here.

 

Grace

amitriptyline from 1980-2002, along wi/ intermittent, infrequent use of benzos over 2 decades

2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg

2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )

2016 Tapered 75 mg. trileptal  first year. 6 month hold.  Resumed micro-tapering trileptal 2-10% every few months

January 2020  12.74 valium, 4 mg. remeron.  128 mg. trileptal 11/28/20;

Link to post

Shep, Thanks for mentioning the depersonalization/derealization. I've come across those terms many times, and still don't have a very good sense of what they mean. So far, I haven't ever included them in his long list of symptoms, but maybe that's part of what he's experiencing.

 

And thanks, too, for the reminder about how much he's learning about how to be and stay healthy. We have a few friends whose similar-age kids are going through opiate addiction, and I know I'll never have to worry about Raven going there. He is super careful about never cheating on his diet because he never wants to go back to compulsions, tics, meltdowns and panic attacks. He's learned coping skills including breathing, escape into books, expressing his emotions at the piano, going for a walk every day (or evening, if it's too bright during the day!) and napping when nothing else works. I guess you're right that it's just a different kind of education than he would get at college.

 

He did take Calculus 1 & 2 online, but it really wasn't a very good fit for him. He only gets very short periods of time many days (20 minutes or so) when he's able to think. So between the lag-time getting questions answered from the instructor and his own inability to work most of the time, he had to take extensions both semesters. Also, even though he really wants to become a computer scientist, the vision challenges often make it difficult for him to look at a computer screen because of how the white bleeds over everything else. He's tried a variety of different filters, but hasn't yet found one that makes it comfortable for him to spend much time looking at the screen. We're hoping the super-dark glasses will help this a bit. So for now, he does best taking classes live at our little college. He's actually going to attempt another online class in the fall (computer something) and is hoping he can take a live delivery one here, but we'll have to see if he has improved enough to take 2 classes. His inability to concentrate and his depression (lots of crying) seem to be the worst symptoms right now, so it feels unlikely unless he improves quite a bit between now and then.

 

Great suggestion about volunteering. He's not one for furry animals, but I'm definitely on the lookout for some way he could help other people. This year he was able to tutor the 14-year-old boy next door in math. Even though he frequently couldn't do it because of w/d, it was overall a win-win situation and I hope he can do it again next year. Maybe there are some other informal tutoring groups where he could pop in irregularly. Also, he and I kept honeybees until I developed an allergy 2 summers ago. He was pretty traumatized by the ambulance taking me away, but maybe he's past that enough that he could help some of the other middle-aged-lady beekeepers around here. I'll have to talk to him about that.

 

And Grace, ohmigosh...what is left for you to eat??! I feel really fortunate that Raven had such indisputable and quick improvements first from GF/CF, and later from SCD/DF. I can't imagine having the brain to figure out challenging food intolerances while you're going through w/d. All my best to you.

 

While I feel like the SCD/GAPS program has been life-altering for him, now I'm becoming concerned because I read elsewhere on SA that a grain-free diet can lead to problems with managing cortisol. Given the daily swings he has in his mood (depressed and crying and no brain all day, much better in the evening), I wonder if we're solving one problem but creating another :blush:

 

That is so interesting about you craving sunlight...Raven can't tolerate it, but he craves this one very specific color of green. We had to paint his bedroom walls and ceiling gray and made all the furniture and curtains his bright kelly green color. It wouldn't make it into House Beautiful, but it's so nice for him to have a sanctuary. Who ever would have guessed that these medications would have affected every single system in the body? I guess it makes sense because everything that happens in the body goes through synapses, but the doctors sure never describe it that way when prescribing p-drugs like aspirin.

 

Anyway, thank you so much for the encouragement and for believing that he will get better. And I believe you will, too!

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

Link to post
savinggrace

Siskin,

I hope this helps you, and doesn't over-whelm you, but it IS applicable in your son's diet situation and anyone's really (in regards to tapering drugs as well) which is why I feel free to post it here.


The Ultimate Digestive Troubleshooting Guide: What to Do When Diet Isn’t Helping Your Stomach Problems
“The diet that will work for you has no name.
You have a custom solution.You’re not going to be able to follow Breaking the Vicious Cycle and do SCD exactly as it’s laid out. You’re not going to be able to pick up a Paleo book and follow that blueprint and have it work for you. It’s just unrealistic. To get to the diet that works for you, you have to troubleshoot. You have to tweak. You have to be a health engineer!It’s a different mindset…I’m going to say this again: It is a different mindset.It is so important to know that. There is no pre-written script that says follow these exact steps and your specific digestive problems will go away… and that makes it tough – it isn’t coming to you pre-packaged.For example, some people don’t tolerate dairy. Others don’t tolerate legumes. Many don’t even tolerate fermented foods or food with high FODMAPs.
And that’s where people fail, that’s where the diet stops working and that’s where people lose hope. But if you keep your hope; if you change your mindset and keep your hope that YOU are a health engineer and YOU will figure this out, then you will succeed.”
http://scdlifestyle.com/2014/09/the-...hooting-guide/

I have some thoughts about Raven's diet if you are ready to hear them. Believe me, I know how sometimes the best choice is to change nothing for a while.

I LOVE kelly green. In his own way, Raven is bringing the outdoors in!

Hang in there and keep doing what you're doing. The way I see it, your whole family is likely benefitting from your nutrition acumen.

Grace

amitriptyline from 1980-2002, along wi/ intermittent, infrequent use of benzos over 2 decades

2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg

2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )

2016 Tapered 75 mg. trileptal  first year. 6 month hold.  Resumed micro-tapering trileptal 2-10% every few months

January 2020  12.74 valium, 4 mg. remeron.  128 mg. trileptal 11/28/20;

Link to post

Hi Grace,

 

Thanks for responding. And YES, if you have thoughts about what we might try tweaking, please share. It sounds like you have spent a lot of time learning about dietary stuff and I want to know what you know without having to do all the research myself!! 

 

I don't know if this is useful or not, but his digestion is really pretty good right now. He dealt with constipation from the day he was born until he went on a GF/CF diet at age 18 (doctors always dis-counted it as an issue) when he started to have daily bowel movements for the first time in his life. That's also when he began to sleep through the night for the first time in his life and eliminated his tics and OCD. He also she 30 pounds in about 3 months, which I believe to have been toxins stored up in the fat tissue in his body. He wasn't overweight to begin with, and after losing 30 pounds he looked absolutely malnourished (6 ft tall, went down to 135 pounds). I'm sure he was malnourished after 18 years with a leaky gut. I also believe leaky gut to have been the source of brain inflammation that caused his OCD and other problems.

 

We ramped it up to SCD after about 2 1/2 years on GF/CF, and that's when his panic attacks and meltdowns also vanished. Now his weight is up to about 150, his acne has cleared up and he looks great (except when he feels awful :( ).

 

Now he has intermittent diarrhea (it lasts for a few days, then he's fine for a few weeks). Also, just the past 5 days or so he has been complaining of his stomach feeling "unsettled", or a little nausea. I don't specifically remember him commenting on it for quite a while, so I don't know if it's w/d or something else.

 

The supplements he takes are: Vitamin D 5000 IU, a multi-Vit/Min from GI Pro Health, and Omega-Max from GI Pro Health. The doctor who tapered him off Prozac is an orthomolecular doctor, and she had him on 26 different supplements! It was not sustainable (either practically or financially), and clearly didn't help him. Also, he had bad diarrhea the whole time he worked with her.

 

You're right that our whole family is benefitting from the diet. While the rest of us cheat a bit, we're all eating a lot less sugar and we eat a TON of vegies!

 

I would truly appreciate any thoughts you have that might help even out his mood throughout the day or anything else.

 

Siskin

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

Link to post
  • 2 weeks later...

I was just reading some of the posts in the Off Topic - Best of SA section, and came across this:

 

With multiple drugs and a history of drug changes and cold turkeys, all of this becomes even more complicated. And if a person is started on these kinds of drugs at an early age before the brain has ever completely established normal mature functioning--well, it can't be good. (All of which is why I recommend an extremely slow taper particularly to anyone with a multiple drug history, a history of many years on meds, a history of past cold turkeys or frequent med changes, and a history of being put on drugs at a young age.)

 

We did everything wrong - all 4 categories. I'm so concerned about my son's potential for healing; I know he had some very real challenges before he was ever medicated (OCD, sensory processing disorder, some diagnosed him with autism), but with the meds we threw fuel on the fire. All his other challenges feel like a cake-walk compared to what he is going through now. He used to be so bright, and now he can't think enough to read a recipe (although he is able to read books - a saving grace). Watching him crying his way through his days, needing to be closed up in his room to avoid stimulation; I know it's important for me to remain strong and positive so he has someone to lean on, but I find myself getting caught up in worries about "what if".

 

He has definitely shown improvement in some of his symptoms. He has dealt with PGAD and intense paresthesia in his face, hands and feet since coming off Prozac, but he's been seeing a PT almost every week for a year and a half, and these symptoms are clearly diminishing. She's doing lots of hands-on work to release his faschia (which she says got horribly bound up because of his over-loose ligaments and loose joints), and also has him wearing a pelvic belt when the PGAD starts creeping up on him. We're so grateful for her help and this improvement.

 

My husband found his old pair of glacier glasses in a gear box; Raven is finding these to be really helpful on sunny days. We also found some earplugs that he can tolerate. We're putting together an "emergency kit" he can keep with him all the time in a courier bag; he'll have a couple pairs of sunglasses, his pelvic belt, earplugs, headset for listening to his own music, a bottle of peppermint oil (which he finds calming). So it's good that he has a collection of tools. But none of it seems to help with the depression and emotional flatness (anhedonia).

 

Again, thank you so much for letting me air my concerns on this forum; you're all really helping me keep the faith.

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

Link to post
  • Moderator Emeritus

Siskin, you did what you thought was best. You did not throw fuel on the fire -- You consulted and followed the advice of professionals you trusted, or believed you could/should trust. Every loving, caring parent wants to do what's right for their child.  With the information you had, you and your husband did your absolute best.

 

We all get caught up in "What ifs", travelling down a thought maze with no candy or treat at the end.  I have my own related to my own history with psych drugs and to my actions and words to my beloved "P" in the last few months of his life. Your "what ifs" -- and mine -- aren't thinking, they aren't real. They're thoughts. I hope you let them go.

 

There are many great signs -- Raven is responding to physio, he's reading. Not recipes, but maybe watching videos, at low volume and brightness, works better than having a written recipe? Many, many generations of people who didn't know how to read, learned skills from family members, not books. Trades apprenticeships are all about learning by doing not by reading.

 

Your son will heal in the timeframe that's right for his body and CNS. He'll create a new baseline from which to grow and build a life for himself. You, your husband, and Raven himself are forging a new path, boldly going where none have gone before.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

Link to post

Thanks so much, Scallywag... your words and encouragement are so helpful. You're right that the "what ifs" aren't real; very much like the proverb that "Worrying is like praying for something bad to happen". I'll try my  very best to stop, but sometimes I need a little help with that :rolleyes: 

 

You must be a mind-reader - Raven is a big Trekkie - he'll love the idea that in some way he's doing what the crew of the Enterprise did!

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

Link to post
  • Moderator Emeritus

The three of you are a great team: smart, resourceful and persistent. You CAN deal with what comes up. You've got what it takes.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

Link to post

Yes...we've got all of you here at SA.

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

Link to post

Welcome to the forum siskin, lots of hugs and hope your son recovers.

 

I love the birdy :)

 

Yana

2010 started 10 mg celexa, 2011 went up to 20 mg

06/2014 started tapering (20 mg,10 mg alternate days)

19/09/2014 crashed at 10 mg

20/09/2014 updosed to 20 mg to try and stabilize- Never stabilized and CNS basically plummeted

August 31 2015- Started my 5% taper anyways

May 3 2016- At 14 mg the tapering caught up with me- Withdrawal included severe anxiety, feeling like im on speed, suicidal and homicidal ideation, akathesia, feeling like I was on heroin, memory loss, PGAD, feeling like I was on an acid

May 4 2016- Updosed to 15.5 mg to try and stabilize

​June 4- Started taking 2 mg 5 times a day which adds up to 10 mg because of akathesia when taking my full dose. Akathesia symtpoms smaller

July 27th- Dropped from 15.5 mg to 10 mg because could no longer tolerate taking drug- bad side effects mainly akathesia and emotional deadness.

​Oct 11- Improved a lot since May 4th after my crash. Withdrawal symptoms still left- DR/DP, emotional anasthesia, akathesia, tingling in head, feeling like my body and face disappears, messed up sound interpretation, perception and difficulty reading social and emotional cues during DR/DP, apathy, inability to tell if I am in dream or reality, disturbed sleep. Started having few windows

Link to post

Hi Sisi,

 

What you said is so sweet-

 

"I'm sure most everyone on this site has a mother somewhere whose heart is being torn out of her chest by watching her child suffer so, no matter what age they are. And for anyone out there who doesn't have a mom to worry over you, please know that this mom understands your suffering and cares deeply."

 

2010 started 10 mg celexa, 2011 went up to 20 mg

06/2014 started tapering (20 mg,10 mg alternate days)

19/09/2014 crashed at 10 mg

20/09/2014 updosed to 20 mg to try and stabilize- Never stabilized and CNS basically plummeted

August 31 2015- Started my 5% taper anyways

May 3 2016- At 14 mg the tapering caught up with me- Withdrawal included severe anxiety, feeling like im on speed, suicidal and homicidal ideation, akathesia, feeling like I was on heroin, memory loss, PGAD, feeling like I was on an acid

May 4 2016- Updosed to 15.5 mg to try and stabilize

​June 4- Started taking 2 mg 5 times a day which adds up to 10 mg because of akathesia when taking my full dose. Akathesia symtpoms smaller

July 27th- Dropped from 15.5 mg to 10 mg because could no longer tolerate taking drug- bad side effects mainly akathesia and emotional deadness.

​Oct 11- Improved a lot since May 4th after my crash. Withdrawal symptoms still left- DR/DP, emotional anasthesia, akathesia, tingling in head, feeling like my body and face disappears, messed up sound interpretation, perception and difficulty reading social and emotional cues during DR/DP, apathy, inability to tell if I am in dream or reality, disturbed sleep. Started having few windows

Link to post

Thank you for the welcome, GeminiGirl. I just read your signature, and it sounds like you're really going through it. Your symptoms are so similar to Raven's. I'm glad you moved back in with your folks and are getting some support from friends. My heart goes out to you and everyone on this board...I think you're all so strong and brave to keep waking up every morning with the willingness to believe that today will be a better day. Keep believing, and lots of hugs to you, too!

 

Siskin

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

Link to post
  • 2 months later...

This month marks 3 years and 9 months since my son began experiencing withdrawal, and I think he's finally beginning to turn some kind of corner.

 

After a 6 month wave, he was actually fairly comfortable throughout much of August. Not that he was functional enough to resume a normal life, but his symptoms changed in nature somehow. While much of the past 3 1/2 years he has had to deal with many, many symptoms almost all day every day, he told me last week that for the most part he was mostly having symptoms from one category (cognitive, emotional or physical) at a time. So if it was emotional symptoms (emotional numbness, depression, crying, etc.), he had enough brain left to rationalize how to manage it. Or if it was physical symptoms (tactile locking, PGAD, visual disturbances, etc), he at least had enough emotional resiliency to wait it out.

 

I don't know how far he'll make it in terms of recovery... because he was medicated at such a tender age, his system never had a chance to develop appropriately and might not "know" what to strive for. But it's a tremendous sense of relief to my husband and me to see him at least a little more comfortable.

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

Link to post

Hi Siskin.  It is so encouraging to hear about the strides forward Raven is making in his recovery. As a mother, I can only imagine how that must make you feel at this time, seeing him turn a corner. 

 

My husband found his old pair of glacier glasses in a gear box; Raven is finding these to be really helpful on sunny days. We also found some earplugs that he can tolerate. We're putting together an "emergency kit" he can keep with him all the time in a courier bag; he'll have a couple pairs of sunglasses, his pelvic belt, earplugs, headset for listening to his own music, a bottle of peppermint oil (which he finds calming). So it's good that he has a collection of tools. But none of it seems to help with the depression and emotional flatness (anhedonia).


An emergency kit is a great idea and one that you can possibly add to over time.  Another suggestion is to have a " toolkit " of ideas for non- drug coping strategies including Yoga, Meditation etc . The Symptoms & Self Care section has useful information. It includes many alternative ways of dealing with some of the anxiety and depression issues that we cope with in withdrawal and life generally. If he can learn these skills now , it will enable him to cope on his own without ever having to rely on medication again. This link is particularly helpful.

  Non-drug techniques to cope with emotional symptoms

 

There is every chance that he will recover fully. The brain has amazing regenerative power. There is a book " The Brain that Changes Itself" by Norman Doidge about the neuroplasticity of the brain that talks about this in depth.

This video gives a simple overview: 

https://www.youtube.com/watch?v=mea-NdKBpUQ

 

Ali

Many SSRI's and SSNRI's over 20 years. Zoloft for 7 years followed by Effexor, Lexapro, Prozac, Cymbalta, Celexa, Pristiq, Valdoxan, Mianserin and more - on and off. No tapering. Cold turkey off Valdoxan - end of May 2014

 

                                                  Psych Drug - free since May 2014
.
         

Link to post

Ugh, he's back down in the trenches. He seemed to be doing so well in August, feeling okay more than lousy, and I was allowing myself to believe that this was his new baseline. But we took a big trip - 10 days to take his brother to college out-of-state - and apparently it was just too much time in the car, time in airplanes, time away from home, time saying goodbye to his brother. Now for the past week he's dealing with all of it again - depression, hypersensitivity to light, visual detail, and colors, anxiety, crying, craffing, tactile locking, PGAD, fried brain. So I guess his better days through August were a Window. He hasn't had many long-ish windows, so I don't know exactly what to look for. He has had lots of shorter ones, for short periods of time each day. Does it work that these get longer and longer until waves are the exception?

 

He was pretty miserable the first 6 days we got home, then yesterday his brain was totally locked in. He was able to think and work on his college class for several hours - he hasn't had brain for several hours in a day since before he went into w/d. But then this morning he woke up about as miserable as I've seen him in months. I know there's no way to predict how things will develop for him, but I just wish I had confidence that he will start to experience windows often enough to keep his hope alive.

 

Ali, thanks for the link on non-drug techniques. For months I've been working on him to embrace meditation, but he'd resisted. Then after reading through your link, I sent a text to his therapist asking her to bring up meditation again, which she did. After his appt on Friday, he came out to the car and told me that they'd worked out a way to personalize meditation to make it work for him. He told me he actually enjoyed watching the filter in her fish-tank, and thought that one of those desk-top fountains might be something he could focus on for meditating. So we went online and ordered one that he can place his own special rocks on. It needed to be his idea, not mine! ;)

 

I'm eager for him to learn coping skills like you're talking about because even at his best, he's an extremely sensitive and fragile person, and I think he'd be at risk of a very bad outcome if he can't learn a way to find balance from within.

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

Link to post

Hi Siskin. I'm sorry he is down again but hopefully it's short lived.  It is encouraging about the meditation. .It sounds like he is being proactive and forward thinking. The fountain is a great idea and would be soothing generally with the sound of running water - tranquil. :)

 

It might be great if he can also get out and do some walking in nature.

http://survivingantidepressants.org/index.php?/topic/1921-forest-bathing-reduces-cortisol-aids-mood-immune-system/

 

Art Therapy might be helpful :

http://survivingantidepressants.org/index.php?/topic/8666-art-therapy-mandala-circles-adult-coloring-books-etc/

 

Sometimes , it just takes a bit of searching to find a few tools that can make all the difference.

Ali

Many SSRI's and SSNRI's over 20 years. Zoloft for 7 years followed by Effexor, Lexapro, Prozac, Cymbalta, Celexa, Pristiq, Valdoxan, Mianserin and more - on and off. No tapering. Cold turkey off Valdoxan - end of May 2014

 

                                                  Psych Drug - free since May 2014
.
         

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Hi Ali, We live outside a small town in a very beautiful, rural location. When we go for a walk around the neighborhood, we're surrounded by trees, many types of weeds and grasses, wildflowers (seasonally), a wide variety of birds, the ocean, a glacier, and peace and quiet. Raven (not his actual name ;)) has gone for a walk with his younger brother almost every day for many, many years, either around or neighborhood or at the beach nearby. While they have always spent the time yukking it up rather than absorbing nature, I know he's benefited from the natural setting as well as from the close relationship and camaraderie with his brother.

 

Now that his brother has gone off to college, he's in a new paradigm. It's only been a week, but I'm kindof watching him right now to see what he does with it. In the past 7 days, I think he has gone for a walk by himself 3 times. Today the 3 of us (Raven, his dad and me) went to a trail up in the hills for a short walk. I'm a teeny bit concerned about him continuing to get motivated to walk by himself when so much of the motivation until now was to get time with his brother. But he's so incredibly driven to do what's good for him, I think it'll work out okay.

 

As for Art Therapy, I think he's doing his own version. He loves music. I don't know how to express how deeply he loves music, but he has all his music in his phone, and his phone always in his pocket, and there is almost always music emanating from his body from his phone. He leans toward movie soundtracks, and has written some very beautiful music of his own. When he's at his most emotional - depressed, confused, angry - he will sit down at the piano and play. Sometimes it's something he knows and loves (like the Star Trek theme); sometimes it's stream-of-consciousness playing that he later develops into an entire composition. I'm always amazed at what he comes up with. Sometimes when he's really depressed it's dark and frightening, but it somehow helps him to work through what he's feeling. On the rare occasions when he's in a rage, the music can be absolutely terrifying. But I'd much rather have him pounding it out on the keys rather than on someone else or his own self. He will also sit at the piano while he's reading (his books are in his phone), and play music that is his own soundtrack for the story. I think it's pretty amazing, and I would love to see him do something with his incredible talent, but for now it's just his own Art Therapy.

 

These "tools" sometimes work for short periods of time; I'm looking forward to the day when he can just go for a walk or play some music without it being therapeutic.

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

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  • 2 weeks later...

Please, I need a little encouragement.

 

In October, it will be 4 years since Raven began the cold turkeys and way-too-fast tapers from meds; in November, it will be 3 years that he has been medication free. While he seems to be showing slow, gradual improvement with his physical and emotional symptoms, his cognition really doesn't seem to be any better than it was 3 or 4 years ago. He just can't hold onto a thought, and language eludes him (almost as if he's had a stroke), and his memory is still very spotty. Very difficult for him to hold conversations, to read new material (although he can read "old friends" books most of the time), or to think through simple, everyday activities.

 

He gets very short windows here and there when he can think - usually 20 minutes to an hour at a time; on rare occasions he'll get several hours in a day.

 

Are there folks out there who have experienced recovery of cognition even after this long? It's breaking my heart to think of my son, who was once so bright, being reduced to this for the rest of his life. I'm working very hard at remaining positive because I know he needs the support, but it feels so discouraging for him to be disabled this long.

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

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  • 4 weeks later...

This month marks 4 years since Raven's doctor put him through his first cold turkey (transitioning him from Abilify to Risperdal), and 3 years that he has been completely off all medications. Having gone through 4 functional cold turkeys in a year ( don't you just love medical "care"?!), 3 of them antipsychotics, he has really been through hell. I just want to journal a bit to prove to myself that he is indeed still in the process of recovery even though he is still functionally disabled.

 

The symptoms that he still experiences are:

     Inability to think - I think this is currently the number 1 most challenging symptom - he seldom gets a break from this

     Loss of memory

     Loss of time indexing and impaired sense of the passage of time

     Loss of language - unable to craft an email, follow conversation

     Feeling that his soul has been sucked out of his body (these are usually very brief events, super intense, accompanied by crying)

     Depression

     Anxiety

     Feeling emotionally flat-lined

     Craffing (crying and laughing at the same time) and inappropriate laughter

     Feelings of being overwhelmed by other people's energy

     Sensory hypersensitivity

     PGAD (accompanied by frequent urination)

     Thermal regulation off (almost like he has hot flashes/cold flashes)

     Fatigue

 

There are several symptoms that were really bad for a long time that we see only seldom now: dizziness, fatigue, skin feeling like it's clogged with oil, feeling that there is pressure inside his skull, paresthesia in his hands, feet and face, word retrieval. And while he still has a lot of symptoms, I really think that he doesn't have so many at one time as he used to. It seems like now he only has to deal with 3 or 4 at a time, instead of up to 20. That's improvement!

 

The other area where I see improvement is that I can honestly say he's experiencing waves and windows now. For the first 3 years, he was just deep in it all the time; he would get an hour or two each day that wasn't quite so bad, but never had a day off for the first 2 1/2 to 3 years. Now, he has an occasional day here and there where he's absolutely shiny. Able to think, happy, comfortable in his body. When he gets a day like this he fatigues early, but I think that is really part of his pre-existing make-up (ASD, Joint Hypermobility Syndrome, Sensory Processing Disorder), and I suspect he'll always have to deal with that.

 

I also feel like we're starting to be able to parse out which symptoms are due to w/d, and which are due to his make-up. He was truly very disabled, barely able to leave the house, for us to agree to medicate him as a 6-year-old. The problem is that while he showed all the symptoms of OCD, and was probably correctly diagnosed as such, the doctor never stopped to consider why a 6-year-old would have such a severe case of OCD. If he had looked further, or had the humility to refer out to the correct specialists, he might have identified that he was dealing with a little boy who was not only on the autism spectrum (dr denied it because he was so high-functioning), but that he was unable to digest disaccharides, had a collagen deficit (leading to hypermobility, fatigue, and anxiety), and sensory processing disorder.

 

But what's done is done. I'm choosing to believe that he will get through withdrawal, be able to think again, and be able to use all the tools he's learned through this process to take care of himself through life. I think he'll always have a level of sensory hypersensitivity (although hopefully nothing like what he's dealt with these last 4 years), fatigue and anxiety; these seem to be built into his system and are probably what lead to the OCD symptoms to begin with. But he's brilliant, and even if he has to live with us for a long time, I really think he'll be able to use this nightmare of an experience to help others. He really wants to become a computer scientist and work in the field of accessibility, and his experiences will only make him more able to help those with sensory or mobility differences.

 

I'm looking forward to the day when I can post his update in the Success Stories - please wish us luck!

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

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Glad to hear your son is improving - I hope he continues at an even faster rate!

Medicine History

June 2011 I was put on 10 mg Olanzapine. I stayed on that for 7 months then went down to 5 mg for 3 months and then went down to 2.5mg and slowly went down to less than .3 every few days. I have tried to come off 4 times, each time getting down to less than .3 before having to go back on at 5mg or 2.5mg. I would cut by 50% each taper. From Jan 2015 to June 2015 I reduced from about 5mg to .3 mg. This last time I went on 2.5 mg last June 2015 until July 2, 2016. July 3, 2016 I went down to 1.25mg - withdrawal hit. Up dosed to liquid 2 mg July 23, 2016.

Medicine Current

2 mg Olanzapine as of July 23, 2016

Supplements

Omega 3 1000mg, Vitamin E 400 UI, Vitamin C 1000 mg Time Released, 200 mg Magnesium Bisglycinate, Multi Probiotic, .25 mg melatonin for 3-5 days as needed

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Does that sometimes happen? Does recovery sometimes increase in rate?

Siskin

 

Raven's med history:

2001-2006 Paxil 40g

5/06 - 7/06 off meds

7/06 - 10/13 Prozac

4/12 - 11/12 Abilify

11/12 - 12/12 Risperdal

12/12 - 3/13 Geodon

7/13 - 10/13 tapered off Prozac

10/13 - present: med free

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  • ChessieCat changed the title to Siskin: support for my son

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