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Where are all the success stories? Does nobody ever heal?

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compsports

Regarding body wanting homeostasis, didn't happen in my case.    I started developing circadian rhythm problems a year before I started tapering and they have only gotten worse.  The other night, after consuming 1/2 can of sardines at 7pm, I felt like I had taken several ambiens and unfortunately crashed without putting on my bipap mask.  

 

Unfortunately, was only able to sleep 2 hours which has been typical of a severely fragmented sleep pattern.   I have researched every possible answer so you folks who don't think I am doing enough, you might want to reconsider that.

 

Asking if someone is investing in being a chronic patient is an extremely condescending statement.  It reminds me of how people suffering from long term damage were discounted on Paxil Progress.   Do you all really want to take after them?

 

No, I don't want the sleep doctor that I am seeing in a few weeks to fix it for me.   I want him to give me some ideas of why I might be having these strange difficulties and what might work to alleviate them.  If he suggests light therapy, then he needs to explain why when I have tried this in the past, I fall asleep when using it, particularly in the afternoon. 

 

Do I need to just keep working the program or is something else going on?  Maybe I am using it at the wrong time and he can suggest better ones?

 

Regarding telling someone they have to work at neuroplasticity, again, that is an extremely condescending statement.    Again, it sounds like this board is unintentionally becoming like Paxil Progress.   If you are struggling long term, it is our own fault.

 

 

You mentioned curiosity and because of that, I found out about irregular sleep wake disorder which sounds very similar to my situation.   Unfortunately, having that has not solved the problem in spite of my constantly rereading articles to make sure I am not missing anything.   That is why I am consulting a sleep doc who knows about circadian rhythm issues.

 

Again, regarding telling someone to have positive thoughts, that comes across as very condescending.    And as I jokingly tell people, if that really was the solution, I would have solved my mysterious sleep issues years ago.   Sorry, it doesn't work that way.

 

And by the way, my cousin several years ago was the most positive person you can think of.   She still died of cancer.

 

My mother who I considered to be a negative person although she had a very productive life, died at 93 in spite of smoking for 30 years.   I think the fact she took drugs sparingly was the key although of course, I can't prove it.

 

In summary, there seems to be the assumption that if someone is still struggling after several years, they haven't tried hard enough to get well.   That really needs to stop unless you want to be seen in the same way as the old Paxil Progress Boards were.   Obviously, I can't tell you all how to run your boards but I am just stating things as I see them.

 

 

 

 

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Shep

 

In summary, there seems to be the assumption that if someone is still struggling after several years, they haven't tried hard enough to get well.   That really needs to stop unless you want to be seen in the same way as the old Paxil Progress Boards were.   Obviously, I can't tell you all how to run your boards but I am just stating things as I see them.

 

 

 

 

You do raise some valid points, compsports.

 

One of the many problems with the psychiatric drug forums is we are dealing with more than one "audience".

 

We have the newer members, many arriving in the crisis state of being acutely ill from their drugs. They are just learning that it could take a number of months or even a number of years to heal. 

 

And they are taking that in while also dealing with the oncoming collateral damages (job loss, financial insecurity, possibly even the loss of a relationship or custody of their children). 

 

So we give information for that specific need. And that must be inline with a lot of hope because many people become acutely suicidal at this stage.

 

But then we have the "audience" of the long-term members, members who have suffered for many years while doing all of the non-drug coping skills, while holding onto hope, and looking for that neuroplastic answer. If not complete healing, than at least some evidence of progress, some evidence for hope. 

 

And for those such as yourself who are dealing with chronic insomnia, that weighs heavy on the mind, body, and soul. Many of my crisis states are in that state of insomnia. 

 

I don't see an easy answer to this, but I do think part of the problem comes from trying to handle all of these diverse set of "audiences" in one forum. If I had really understood how difficult this was going to be, how much I would lose financially, professionally, and personally back in 2014 when I was already rapidly coming off these drugs and had done a lot of damage, I'm not sure I could have handled that knowledge. I'm thankful the various forums I've been on did hand-feed me at times with scraps of hope until I understood this process. And I'm sure at times it was ridiculous hope. But it got me through another day and another day until I was strong enough to handle more realistic news. 

 

I do think the neuroplastic information is important and I encourage this mindset for that reason - it does offer hope. And it sets people up on the right course to at least mitigate some of the damage with non-drug coping skills to set a better course for healing, to at least set the stage and provide healthy distractions during a very dark journey. 

 

But I don't think anyone who is several years off their drugs and still suffering is in anyway responsible for not using non-drug coping skills or not having the right attitude. 

 

There are just too many unknowns and too many audiences in one place. Perhaps we could do more to "honor" the amazing strength in protracted members and I would welcome posts that go in that direction. 

 

It does take an enormous amount of strength to survive this and I see that strength everyday in the posts of the long-term survivors of this pandemic. There's a lot to be learned in that part of the process, as well, and the long-term survivors are the only ones who can offer this information, so I hope we can find a way to help all of the various "audiences" that come here to read and to post. 

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JanCarol

Okay, I've been thinking about this since my last post.

 

I agree that - not everybody heals perfectly.  In fact, maybe none of us heal perfectly.

 

I was looking at the forest, and one tree - had another tree land on it and nearly crush it.  But the tree grew around it - and I looked up, and saw other trees which were crooked, but growing strong.  The trauma became a part of the tree, became part of its strength, and its place in the forest.  The same with trees which had been burned in fire, or struck by lightening.  But - in the forest - some trees survived their traumas, and some did not.

 

Not every trauma can be worked around.  I thought about it like shoes.  Leather, when kept oiled and supple, can last a long time.  The drugs tend to make us brittle - but these things I've talked about - exercise, meditation, attitude, nutrition - help to re-oil the leather and can bring it back to life, to flexibility, to suppleness and usefulness

.  

It may not be as beautiful as it was, it may not be the same as it was.  I think a lot depends on how brittle our nervous system got before we started healing - 

 

and I do believe that - even in the face of ongoing and intrusive symptoms - there is still healing taking place.

 

Stan asks:

 

 

why do i have to do special exercises and these people no ?

 

What is so terrible about special exercises in the face of the suffering that you have already survived?

 

Life isn't fair, and some people waltz through - or - you don't know what they went through after they said "I'm all better now." (I suspect this is often the case, and that anyone who has been through the initiation of psych drugs will, on some level, always be engaged in a struggle for well being.)

 

Chronic fatigue is what I battle with, and depression.  I'm only a year out of my last dose, but I've had to work really hard to get where I am.  Maybe that's why I advocate for hard work.

 

If you are afraid of going outside - then that is what you must do.

If exercise is the hardest thing, then start small.  The more you move your body, the more it will heal.  Walking is the most healing exercise of all.   Tai Chi is incredibly gentle.

 

When someone says "I cannot exercise," I have found it is because they have an idea that they have to be able to run, jump, play ball, bicycle, lift weights - when really - lying on the floor and doing spinal twists is amazing for pain and fatigue.  "Legs on the Wall" is still exercise, and it's mindfulness, too, as you feel how your back is touching the floor, how your legs feel extended against the wall, how you breathe into this gentle stretch.

 

There are a million things that could help.  Even if it is just to shift your attention from your misery, to a place where you can abide.

 

CS:

 

 

Regarding telling someone they have to work at neuroplasticity, again, that is an extremely condescending statement.

 

I'm sorry you perceived it that way.  In my experience, it has been an important and vital part of healing to keep trying, keep working, keep learning.  Doing different things, trying uncomfortable things, all in the quest for wholeness again.  I still suffer memory and cog fog issues - sometimes I have to read an article or watch a video 3-4 times or more to actually remember what it said.  I might think I understood it in the reading - and then realize - after I walk away from it - that I remember nothing from it.  But it is 10x better than before when I was numbed under a lithium haze, and flattened by an antidepressant.  My sleep is weird, too - I've built my life around my weird sleep, and it's frustrating - I'm not awake at the same time as businesses, my day gets cut short by my strange sleep cycles.  But I keep trying, and have hope that someday I will be more productive than I am now.

 

I'm sorry that you feel this is turning into a PP sort of thing - but I guess what I'm saying is don't give up!

 

That you are breathing means there is more right with you than wrong with you in this moment.  - Jon Kabat Zinn.

 

I acknowledge that I am a different tree after I was broken and bent - but I'm trying to find the sun, I'm trying to take in helpful nutrients, I'm trying to stretch my limbs and be the best tree I can be - even though I have places which were bent and broken by the drugs (and surgeries, in my case).  

 

I'm not blaming anyone.  I'm sharing what I feel is valuable information, about how to do it, how to make it work. I have to believe in these things, techniques, efforts - because when I stop believing, I give up. 

 

I agree with you that it's not just "positive" and "negative," but there are undercurrents of subconscious could be addressed.  The face often matches the subconscious talk, but not always.  There are sometimes self-defeating programs underneath - and it's not a cake-walk, it's not easy, to just reach in and find them and remove them.  Sometimes the negative is a powerful force for healing.  As I like to say, "embrace the demons, put them to work!"

 

CS again:

Asking if someone is investing in being a chronic patient is an extremely condescending statement.

 

I was talking about my own journey, my own quest for "unpatienting" myself.  My own quest for "undiagnosing" myself.  And in sharing that journey, I apparently hit a button for you.  It was my hope, in sharing that, to shake things up a little, to tell my story in the hopes that others could find something similar in their own stories.  I think it is an important point. 

 

Who will I be, when I am no longer "Jan in Pain?"  or "Jan, Exhausted?"  Can I identify with that woman? Can I visualize what that is like?

Edited by JanCarol
Edit problem, quotes all wrong, truncated paragraph.

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Cressida

What worries me is not whether the majority of us will appear to heal but the drugs and WD battering of the brain will predispose us to develop dementia and unfortunately that's a question. O one can answer

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compsports

Shep,

 

Thank you very much for a conciliatory post.

 

I certainly don't want to take away the hope of newbies.   At the same time, when I keep reading posts that infer that everyone heals when I know several people who haven't, that is hard to deal with.

 

And by the way, when I had a sleep attack yesterday, out of curiosity, I changed my bipap setting to straight CPAP which normally I find very uncomfortable.  I was hoping I would get the best of both worlds and be able to lie down with my mask on without falling asleep.   Unfortunately, I fell asleep prematurely.   

 

As far as advice I would provide, this may already be covered on SA but I might advise folks, particular people like me who were on a cocktail of meds long term to consider micro-tapers and longer holds.   I greatly underestimated what these drugs did to my brain and thought I would be fine with the 10% withdrawal method.  Obviously, I wasn't. 

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Shep

 

As far as advice I would provide, this may already be covered on SA but I might advise folks, particular people like me who were on a cocktail of meds long term to consider micro-tapers and longer holds.   I greatly underestimated what these drugs did to my brain and thought I would be fine with the 10% withdrawal method.  Obviously, I wasn't. 

 

 

I think this is important information and I agree with it 100%, especially on the micro-taper.  I'll also add in the symptoms-based taper, which ties into your recommendation for longer holds. 

 

I hope the long-term members such as yourself do lend your voices to these types of conversations because not only do you have the experience of being several years off these drugs, you've been reading the accounts of dozens if not hundreds of other people and have gained insight from that. 

 

And that's an important perspective to have because if we can find ways of minimizing the damage on the way off the drugs, there's more chances of healing. Sometimes it's hard for people who are very new to this to understand, as the need to get back into their lives, to not lose their jobs or their finances, is so strong, they have trouble understanding this and want to hurry on through it. 

 

So your point is a very good one and I hope more long-term members stick around to advocate this as you are doing. It definitely steers the site in a better direction and could help some of the newer members understand the importance of the slower tapers with longer holds and how they will benefit more in the long run and thus lesson the chances for chronic damage. 

 

The newer members look to the long-term members.  And I do think there's room in the conversation for both hope AND for realism, and in connecting the two, perhaps find better ways of dealing with this pandemic. 

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stan

Okay, I've been thinking about this since my last post.

 

I agree that - not everybody heals perfectly.  In fact, maybe none of us heal perfectly.

 

I was looking at the forest, and one tree - had another tree land on it and nearly crush it.  But the tree grew around it - and I looked up, and saw other trees which were crooked, but growing strong.  The trauma became a part of the tree, became part of its strength, and its place in the forest.  The same with trees which had been burned in fire, or struck by lightening.  But - in the forest - some trees survived their traumas, and some did not.

 

Not every trauma can be worked around.  I thought about it like shoes.  Leather, when kept oiled and supple, can last a long time.  The drugs tend to make us brittle - but these things I've talked about - exercise, meditation, attitude, nutrition - help to re-oil the leather and can bring it back to life, to flexibility, to suppleness and usefulness

.  

It may not be as beautiful as it was, it may not be the same as it was.  I think a lot depends on how brittle our nervous system got before we started healing - 

 

and I do believe that - even in the face of ongoing and intrusive symptoms - there is still healing taking place.

 

Stan asks:

 

 

why do i have to do special exercises and these people no ?

 

What is so terrible about special exercises in the face of the suffering that you have already survived?

 

Life isn't fair, and some people waltz through - or - you don't know what they went through after they said "I'm all better now." (I suspect this is often the case, and that anyone who has been through the initiation of psych drugs will, on some level, always be engaged in a struggle for well being.)

 

Chronic fatigue is what I battle with, and depression.  I'm only a year out of my last dose, but I've had to work really hard to get where I am.  Maybe that's why I advocate for hard work.

 

If you are afraid of going outside - then that is what you must do.

If exercise is the hardest thing, then start small.  The more you move your body, the more it will heal.  Walking is the most healing exercise of all.   Tai Chi is incredibly gentle.

 

When someone says "I cannot exercise," I have found it is because they have an idea that they have to be able to run, jump, play ball, bicycle, lift weights - when really - lying on the floor and doing spinal twists is amazing for pain and fatigue.  "Legs on the Wall" is still exercise, and it's mindfulness, too, as you feel how your back is touching the floor, how your legs feel extended against the wall, how you breathe into this gentle stretch.

 

There are a million things that could help.  Even if it is just to shift your attention from your misery, to a place where you can abide.

 

CS:

 

 

Regarding telling someone they have to work at neuroplasticity, again, that is an extremely condescending statement.

 

I'm sorry you perceived it that way.  In my experience, it has been an important and vital part of healing to keep trying, keep working, keep learning.  Doing different things, trying uncomfortable things, all in the quest for wholeness again.  I still suffer memory and cog fog issues - sometimes I have to read an article or watch a video 3-4 times or more to actually remember what it said.  I might think I understood it in the reading - and then realize - after I walk away from it - that I remember nothing from it.  But it is 10x better than before when I was numbed under a lithium haze, and flattened by an antidepressant.  My sleep is weird, too - I've built my life around my weird sleep, and it's frustrating - I'm not awake at the same time as businesses, my day gets cut short by my strange sleep cycles.  But I keep trying, and have hope that someday I will be more productive than I am now.

 

I'm sorry that you feel this is turning into a PP sort of thing - but I guess what I'm saying is don't give up!

 

That you are breathing means there is more right with you than wrong with you in this moment.  - Jon Kabat Zinn.

 

I acknowledge that I am a different tree after I was broken and bent - but I'm trying to find the sun, I'm trying to take in helpful nutrients, I'm trying to stretch my limbs and be the best tree I can be - even though I have places which were bent and broken by the drugs (and surgeries, in my case).  

 

I'm not blaming anyone.  I'm sharing what I feel is valuable information, about how to do it, how to make it work. I have to believe in these things, techniques, efforts - because when I stop believing, I give up. 

 

I agree with you that it's not just "positive" and "negative," but there are undercurrents of subconscious could be addressed.  The face often matches the subconscious talk, but not always.  There are sometimes self-defeating programs underneath - and it's not a cake-walk, it's not easy, to just reach in and find them and remove them.  Sometimes the negative is a powerful force for healing.  As I like to say, "embrace the demons, put them to work!"

 

CS again:

Asking if someone is investing in being a chronic patient is an extremely condescending statement.

 

I was talking about my own journey, my own quest for "unpatienting" myself.  My own quest for "undiagnosing" myself.  And in sharing that journey, I apparently hit a button for you.  It was my hope, in sharing that, to shake things up a little, to tell my story in the hopes that others could find something similar in their own stories.  I think it is an important point. 

 

Who will I be, when I am no longer "Jan in Pain?"  or "Jan, Exhausted?"  Can I identify with that woman? Can I visualize what that is like?

 

 

 

In summary, there seems to be the assumption that if someone is still struggling after several years, they haven't tried hard enough to get well.

Asking if someone is investing in being a chronic patient is an extremely condescending statement.

hello JanCarol,
 
when i begin my taper, i was in paxilprogress,
after 11 months i finished taper
and read on board the testimonies
 
i tried to help newbies as i was helped,
and repeat what were the rules, we are better at 18 months, at 3 years all is fine, 
 
and if we are bad its because we do not work with Claire's Weekes book of stress fighting, we do not made cognitive therapy, it is our fault
i repeat this to newbies during maybe 2 or 3 years off
we even speak about stroke as example
i trusted the moderators
as at 3 years i was not healed, i put a better look on testimonies and discover:
the people who were success were all 2 years on drug, 5 years, very few 8 years
but people who were more than 10 years dissapear and no more come often, no success written
i have taken 13 years med
i began to analyze the testimonies more closer all over the web, espescially from people who took more than 8 and better 10 years, and in same time had several friends from boards, speak with...
 
this is to tell you that after 3 years we can have new opinions
 
and since, i am very careful about what i read on boards
 
(sorry for my english)
if you really have chronic fatigue syndrome fibromyalgia, it is very nasty, i have it
 
 
friendly

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compsports

Sorry Shep, I forgot to thank you for your last post.

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Trichotomous

I've read brain damage listed as a possible (likely?) side-effect of stopping antidepressants cold-turkey.

 

I did just that. Heck, I made two large decreases in dosage: one in 2007 and the final one in 2014. And then I read about brain damage.

 

So I want to know what brain damage we are talking about, specifically.

 

Turns out I never had the chronic depression I was diagnosed with (after just one hour!), but chronic anxiety. And I may be loaded up with PTSD.

 

Something unfortunate has been happening to me over the past couple years. I am struggling with language. I mangle words. I forget words. I slur. I forget names, even those of people I've known for years, all the time.

 

Never used to do this. I talk all the time. It's the largest part of my job. I've always prided myself on my communication skills. Now, I'm in trouble.

 

I don't know that this is the brain damage I've read about here. Otherwise, my intellectual capacity seems undiminished. The symptoms come and go. It may all be related to chronic fatigue, as I've not slept well in a couple years. It may be symptomatic of anxiety, which gets triggered by some of the nastier aspects of my job. The language problems and forgetfulness are worse during times of stress, particularly at work. In fact, this usually to happen at work, or when my counselor gets me riled up by having me recall what a craptastic life I've had. It does happen when I am just damn tired.

 

As far as this brain damage associated with stopping antidepressants, what am I looking for?

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AliG

T. Just look for the recovery.The brain has amazing healing qualities and if you focus on them rather than thinking/ looking for the damage you will be far better off in the long run. Positivity has a very real effect and it will serve you well to focus on that and disregard the rest of the negative noise that sometimes can drown out the gains that can come during and after withdrawal.       

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greyed

I'm an all or nothing person when it comes to this. As someone who was exploring his mental potential, taking the ADs before I learned about damage killed all motivation.

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Trichotomous

Yes, but I still want specifics. From this article, are the second phase of withdrawal symptoms indicative of the "brain damage" I question?

 

http://www.cchrflorida.org/ssri-withdrawal-effects-are-brutal-and-long-lasting/

 

Am I looking at the tardive akathisia described below:

 

https://www.madinamerica.com/2013/08/ssri-discontinuation-is-even-more-problematic-than-acknowledged/

 

I know my doctor never mentioned what would happen if and when I quit Paxil. I know other doctors denied and trivialized side effects I described while I was on Paxil. The kickbacks doctors receive from pharmaceutical companies must be fantastic and conscience-easing.

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Jennifer78

To me a success story is when you are mentally well again and living with happiness and joy.

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ProzacWasCreatedBySatan1

My buddy that got on his ssri a month before I did, is symptom free :) both of us having adverse reactions he was on zoloft, I was on prozac. He stayed on his a little over 2 months, I stayed on 3 to 4 months. He has been 100% for about a month, I have been hitting 2 week long windows with only some minor communication issues, and waves of depersonalization that only last about 1-2 days at most. I'd say 70% of the time I'm happy and I mean actually happy. I guarantee in the next 6 months to a year I will be writing my 100% success story :)

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ProzacWasCreatedBySatan1

We have both been in WD a little over a year. It's amazing how far we have both come, we both had horrible depersonalization, brain zaps, and probably about 40 other symptoms. I feel lucky that it only lasted a year.

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JanCarol

I just found this on Beyond Meds:

 

Brain Injury from Psych Drugs

 

Where GiaK says:

 

There is an unfortunate belief in some parts of critical psych communities that says that the brain injury that many of us sustain as a result of psychiatric drug use and withdrawal is permanent and irreversible. That we cannot heal from it. 

 

I too find this repeated talk about permanent brain injury to be extremely unfortunate as well as irresponsible. It’s clear to me that many of us not only heal but transform into something healthier and more whole than we ever were before psych drugs. 

 

bold emphasis is mine.

 

There are many outcomes for everything always… I can imagine anyone hearing about permanent brain damage in the throes of the aftermath of a nasty withdrawal believing that it will be completely hopeless and futile to even try to get better…all of us feel that way in any case…to be told that we will be permanently injured in such a state may very well be a death sentence. I am serious about that. It’s a reckless thing to say given it’s simply not true across the board. People need to KNOW they can get better.

 

A comment from a reader (probably from Mad In America - MIA) named Alex:

 

Neuroplasticity is vital in this healing, and that is a limitless process, a game-changer. There is no predicting the future, but we can influence our own in the best way by staying open to all possibilities.

He continues:

 

Had I believed this bull**** about permanent damage, it wouldn’t have been just about me. There are many of us who would have been affectedly adversely by this pessimistic version of reality.

We have a choice–keep hope alive, or kill it. It not only affects the person in question, but absolutely everyone around them, and their extensions, filtering in the community, then society, then the world. Think about how this ripples….

 

Edit of expletive is mine - MIA has different language policies to SA.  

 

This sums up very firmly what I believe and preach (yes, preach) about "damage."

 

Yes, it's hard, yes you are different on the other side.  But we are always healing. 

 

I expect to still be healing in 10 years.  And that expectation may be all the difference in the world, the very reason for my hope.

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JanCarol

***Topics Merged*** Trichotomous had started a thread called "What Brain Damage" which is now folded into this discussion.

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JanCarol

And I will address Trichotomous' concern.

 

Yes, but I still want specifics. From this article, are the second phase of withdrawal symptoms indicative of the "brain damage" I question?

 

http://www.cchrflorida.org/ssri-withdrawal-effects-are-brutal-and-long-lasting/

 

Am I looking at the tardive akathisia described below:

 

https://www.madinamerica.com/2013/08/ssri-discontinuation-is-even-more-problematic-than-acknowledged/

 

I know my doctor never mentioned what would happen if and when I quit Paxil. I know other doctors denied and trivialized side effects I described while I was on Paxil. The kickbacks doctors receive from pharmaceutical companies must be fantastic and conscience-easing.

 

 

CCHR has an investment, as a Scientology front group, in keeping you afraid, of needing their services.  Most of CCHR's material is fear based, to drive you to their product, Auditing and Scientology.  

The other article, by Stuart Shipko - may be the one that Giak is referencing in Beyond Meds. 

 

There is also a discussion of how SA disagrees with Shipko in principle, here:  Shipko Controversy

 

I think that people are challenged by the geologic time frames that healing require, and unable to accept small victories like improved cognition, or better sleep, or improved digestion - there are a million tiny ways someone might be Better - but if you get stuck on looking at "what is worse" you get caught in this "damage" trap which can be, as Alto said above, a self-fulfilling prophecy.

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hacilar

I appreciate Shep's response to Compsports. 



After years of the same waves and windows pattern, and doing my *ABSOLUTE BEST* to be 'open' to eventual healing, and being sick to death of 'positive thinking' and the implied victim blaming, not only in regards to PAWS, but as a world view, I am relieved to see others who buck that meme.  It is what it is.  In Barbara Ehrenreich's book, "Sunnysided", she concludes that those who are by nature cynical or 'negative' (as some call us), are in fact far more realistic than those who religiously resist the darker sides of things. 

 

I feel that it is healthier, *for me*, to go ahead and feel those 'negative' feelings...to sit with them, for as long as *I* need to, because inevitably, the situation will change.  Windows happen.  But now, in the midst of yet another wave, the thought of the rest of my life being like this is very discouraging.

 

ps I don't know how to edit out the "Quote" box...sigh:(

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Cressida

I have been sent a post about Hacilar reacting badly to a Tin of sardines (mod note:  please see this post). That suggests to me he may be sensitive to histamine . I followed a low histamine diet and it really put me on the right road. 2 years after I started to follow a low histamine diet I am so much better and my histamine sensitivity much reduced . It broke the windows and waves pattern allowing my body to heal. I do sometimes have slight exacerbation s lasting a matter of hours in response to various triggers. Suggest you go on. benzo buddies post withdrawal recovery section and look at their 4 stages of healing resource to give you hope. Doesn't matter that you haven't taken benzo s neither had I but process /symptoms same . You can't positively think yourself out of illness otherwise our hospitals would be empty. It's finding that thing for you that allows your body to heal if you are stuck in PAWs. I couldn't have believed two years ago my life would be transformed so hang in there.

Edited by ChessieCat
added mod note

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hacilar

"I have been sent a post about Hacilar reacting badly to a Tin of sardines."

 

hacilar has never in her life ate a tin of sardines; I'm not sure what you're referring to..sorry

 

Monica C has backed off on her views about histamines.  I've already altered my diet radically, and in that I can't even think or read well right now, to figure out tricks or to understand processes is beyond my abilities.

 

I used to be smart, and my brain does come back online now and then, but to founder over comprehension while reading technical articles is a huge blow.  This must be what it's like for some dementia sufferers as they fade...

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Jennifer78

I think this topic takes all the hope from us who are trying to stay positive that this depression and anxiety etc will heal even if we did a cold turkey from long time med use! It sounds like maybe we should of just stayed on the meds. What's the point if we have brain damage? I agree with another poster who said this topic could literally be a death sentence to some of us who all we have is hope that we will heal!

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btdt
On 2017-5-25 at 2:23 AM, Cressida said:

I have been sent a post about Hacilar reacting badly to a Tin of sardines (mod note:  please see this post). That suggests to me he may be sensitive to histamine . I followed a low histamine diet and it really put me on the right road. 2 years after I started to follow a low histamine diet I am so much better and my histamine sensitivity much reduced . It broke the windows and waves pattern allowing my body to heal. I do sometimes have slight exacerbation s lasting a matter of hours in response to various triggers. Suggest you go on. benzo buddies post withdrawal recovery section and look at their 4 stages of healing resource to give you hope. Doesn't matter that you haven't taken benzo s neither had I but process /symptoms same . You can't positively think yourself out of illness otherwise our hospitals would be empty. It's finding that thing for you that allows your body to heal if you are stuck in PAWs. I couldn't have believed two years ago my life would be transformed so hang in there.

It could be however reacted to the tin of fish has a problem with Vit D... I have for a very long time now... or the tin... I no longer eat food from tin cans not ever. 

 

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btdt
On 2017-5-27 at 4:30 PM, hacilar said:

"I have been sent a post about Hacilar reacting badly to a Tin of sardines."

 

hacilar has never in her life ate a tin of sardines; I'm not sure what you're referring to..sorry

 

Monica C has backed off on her views about histamines.  I've already altered my diet radically, and in that I can't even think or read well right now, to figure out tricks or to understand processes is beyond my abilities.

 

I used to be smart, and my brain does come back online now and then, but to founder over comprehension while reading technical articles is a huge blow.  This must be what it's like for some dementia sufferers as they fade...

I am surprised Monica has changed her mind on this but I am not up to the research to see why. If you could say in a sentence or two I would appreciate it.

 

" I can't even think or read well right now, to figure out tricks or to understand processes is beyond my abilities."  I have spent much of the last 10 years in and out of this state and know it well. 

 

This whatever it is is this process is ever changing... what works at one point does not work in the next stage it does not follow a linear path.  The brain does not work on a linear path either so I guess this is why healing is not linear. I just wish it was not so confusing and complex. It is tricky to get my sea legs if and when I do it never lasts... not for 10 years anyway.  

Some things get better and stay better new things come... that is my take on it tho I may not be joining the dots of things that I do not think are connected because I don't know exactly how the brain works... I do know it is not what science expected... or that is my present impression of past reading. 

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hacilar

As someone mentioned somewhere earlier--as our process undulates and flows over the years, our tolerances and sensitivities shift and change.

 

It could be that I misunderstood Monica on her site, but there's a disclaimer at the bottom of the 'histamine' topics where she walks back her emphasis on staying away from certain foods.

 

I know I can't tell for the life of me if I truly am 'gluten sensitive' or whether or not staying away from grains has served me at all.  I know I still do not dare eat chocolate or drink caffeinated beverages.  I'm considering testing the limits on B vitamins which previously revved me up horribly.

 

We *are* all different.

 

Sorry about scaring folks, but how does it serve the body of knowledge to deny the facts so we don't 'scare' people?

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apace41
28 minutes ago, hacilar said:

Sorry about scaring folks, but how does it serve the body of knowledge to deny the facts so we don't 'scare' people?

 

It definitely does not serve "the body of knowledge" as that is something that, in order to be worthwhile, must be open to all different opinions.

 

It can, however, damage "the body of the reader" in that some people, with a highly sensitized CNS, will react adversely to being sent into fight or flight over the fear of "what if I don't heal."  

 

In my mind, however, the solution is for those people to not read a sight that is titled "do you believe in chronic damage?"  Clearly, based on that title, there will be discussion around a topic those people feel uncomfortable about.  Rather than censoring this thread it is really incumbent upon the members to self-censor in my opinion.

 

Best,

 

Andy

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btdt

As for body of knowledge Grace E Jackson has a couple of books if anyone is in a healing state where they may be able to understand it and they are of the mind that there is some damage and would like to find out what the damage is in order to heal it... her books or seeing her would be my first suggestion.  If she were in my country within my travel restrictions I would certainly see her. 

 

At some point there may be enough of us who have long term damage to start a satellite site I actually expect to see such a site in the future as either part of SA or completely separate.  The problem with such a site would be only those who have such damage would be interested in it and most if not all may be too damaged to actually run such a site.  Kind of a catch 22 like the one I live in when on meds... too dense to know your dense... so you don't do anything about it and the damage blossoms. Still I do expect it maybe with the help of parents kids of people damaged if not the actual people themselves but I am always optimistic that some will heal well enough to actually put something together... where there is life there is hope.

 

ps

Every site that covered this topic in the last10 years has had a thread that discussed this topic it never gets any sea legs as the proof is always missing or too hard for us to understand... It would seem that getting a handle on Grace and her body of work would be the place to start... this is still far beyond my abilities 

some links to look at if you happen to be one of the people who would like to look

 

Drug-Induced Dementia: a perfect crime (9781438972312): MD Grace ...

This item:Drug-Induced Dementia: a perfect crime by MD Grace E. Jackson Paperback $40.00 ...Rethinking Psychiatric Drugs: A Guide for Informed Consent by MD Grace E. Jackson Paperback ..... This is a courageous book by Dr. Jackson.

[PDF]What Doctors May Not Tell You About Psychiatric Drugs Grace E ...

psychrights.org/Drugs/DrJacksonUCELecture(UK)09.06.04.pdf
  1.  
  2.  
by WD May - ‎Related articles
Sep 6, 2004 - Grace E. Jackson, MD ..... drugs was George Crane (you can read about him in a bookby Sheldon Gelman - he's actually an attorney who ...

Drug-Induced Dementia: A Perfect Crime - Author House

www.authorhouse.com/bookstore/bookdetail.aspx?bookid=SKU-000265309
  1.  
a perfect crime By Grace E. Jackson, MD ... A first-of-its-kind resource for patients and clinicians, thebook integrates research findings from epidemiology ...

Grace E. Jackson (Author of Rethinking Psychiatric Drugs) - Goodreads

www.goodreads.com/author/show/207192.Grace_E_Jackson
  1.  

Grace E. Jackson is the author of Rethinking Psychiatric Drugs (4.40 avg rating, 5 ratings, 0 reviews, published 2005) and ... Grace E. Jackson's Books. Grace E.

 

IF YOU HAPPEN TO BE NEW TO THIS STARTING HERE IS A MISTAKE... IN MY OPINION... THE FIRST 5 YEARS THIS WOULD NOT HAVE BEEN AN OK TOPIC FOR ME ...tho I will admit I read many things like this in those 5 years... they cost me some of my peace or potential peace that was my prime objective and a major part of healing to the extent I am.  It takes a long time in a peaceful state or as best you can get to peace for the body to heal the early stages of this.  

 

So if you are new there are many things to learn and do in this stage... leave this to those who made it out of the first stages... and take good care of yourself. 

I wish you all peace

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Hellbutrin

I was just feeling a little disheartened by the disparity between how many people post on this site and how many write success stories. I know that this could mean that people just don't want to return to the site because the memory of withdrawal is so painful for them once they've recovered. But it's also scary knowing that another reason for the lack of success reports could be that people have a really difficult time healing and more often times than not it takes YEARS to heal. I've been off for 6 and a half months and I'm still dealing with brutal mental symptoms, and it's discouraging that when I REALLY need to read reports from people that have recovered, and I end up reading the same 5 stories that I've already read hundreds of times. Is it possible that some people just DON'T heal from this and we need to learn to live with the new circumstances that we've been dealt? I know this post is a little depressing, but I could really use some encouragement. Thanks to any of you that can provide feedback and/or reassurance. 

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Downbutnotout

.  What really amazes me are the people really suffering who are finding the bright side. A lot of people on here experience windows.  Have you had any of those? Maybe it’s an attitude thing. I keep waiting for a window. After reading through your posts it looks like you’ve had consistent waves and windows. So, you’ll probably be just fine. I’d be happy if I was in this type of pattern.  And you can cry? Wow. 

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MiguelFreeman
4 hours ago, Hellbutrin said:

I was just feeling a little disheartened by the disparity between how many people post on this site and how many write success stories. I know that this could mean that people just don't want to return to the site because the memory of withdrawal is so painful for them once they've recovered. But it's also scary knowing that another reason for the lack of success reports could be that people have a really difficult time healing and more often times than not it takes YEARS to heal. I've been off for 6 and a half months and I'm still dealing with brutal mental symptoms, and it's discouraging that when I REALLY need to read reports from people that have recovered, and I end up reading the same 5 stories that I've already read hundreds of times. Is it possible that some people just DON'T heal from this and we need to learn to live with the new circumstances that we've been dealt? I know this post is a little depressing, but I could really use some encouragement. Thanks to any of you that can provide feedback and/or reassurance. 

Stop the negativity you did (Pardon my french) A stupid taper of fewer than 2 months what are you expecting to feel good only after what 8 months or more? I Ct and had to reinstate and it took 3 months or more to stabilize and ion this drugs a lot less time than you 

+ i am doing a very slow taper (yes i am suffering like hell fighting suicidal feelings and depression ) but I refuse to give up and you shude refuse 2 , remember the older you are the longer it takes to recover especially on your circumstances pls be strong and let time do its thing I was like you wondering if I will be like this permanent but guess what I refuse to give up and I refuse to accept defeat and soo shude you  

I know we all suffer but I am sick of people already giving up I am 19 y old it shude be the older people in here to lift the young people because you guys have a lot more experience 

 

 

I am not here to offend you but pls don't give up and don't think negatively it will only keep you down 

Edited by MiguelFreeman
Forgot to add something

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Downbutnotout
9 minutes ago, MiguelFreeman said:

Stop the negativity you did (Pardon my french) A stupid taper of fewer than 2 months what are you expecting to feel good only after what 8 months or more? I Ct and had to reinstate and it took 3 months or more to stabilize and ion this drugs a lot less time than you 

+ i am doing a very slow taper (yes i am suffering like hell fighting suicidal feelings and depression ) but I refuse to give up and you shude refuse 2 , remember the older you are the longer it takes to recover especially on your circumstances pls be strong and let time do its thing I was like you wondering if I will be like this permanent but guess what I refuse to give up and I refuse to accept defeat and soo shude you  

I know we all suffer but I am sick of people already giving up I am 19 y old it shude be the older people in here to lift the young people because you guys have a lot more experience 

Good for you! You will do it. I’m glad you’re doing it now. 

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ChessieCat

If someone is doing well and getting on with living their life, coming back here is something that they probably don't even think about.

 

And of course in most instances it is the members who are suffering and need support who continue posting.

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Touchtheclouds87

I agree. I find it disheartening how few success stories I hear about. 

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Hellbutrin
23 hours ago, Downbutnotout said:

.  What really amazes me are the people really suffering who are finding the bright side. A lot of people on here experience windows.  Have you had any of those? Maybe it’s an attitude thing. I keep waiting for a window. After reading through your posts it looks like you’ve had consistent waves and windows. So, you’ll probably be just fine. I’d be happy if I was in this type of pattern.  And you can cry? Wow. 

Yes, I can cry, but it's out of sheer panic that brings me to break down. It's not really the cathartic type of crying that one exhibits when they are sad about something. I "cry" when I get to the point where I feel complete and utter despair at the thought of this being permanent and never feeling like at least a semblance of the self that I once was again. It all sounds so profound, but I don't really know another way to describe the total terror that I feel constantly. I know that some people refer to this as a chemical fear, and I guess I can liken my experience to this term. I just want to know if there's ever an end and if I will be one of the lucky ones that have to wait years for recovery because I was ignorant of the long term effects of a C/T.

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Hellbutrin
21 hours ago, Touchtheclouds87 said:

I agree. I find it disheartening how few success stories I hear about. 

I totally agree, it just seems so hopeless. All of the success stories that I read are from people that have been going through HELL for YEARS, which doesn't help when I consider my own possible outcome because of my C/T.

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Hellbutrin
22 hours ago, ChessieCat said:

If someone is doing well and getting on with living their life, coming back here is something that they probably don't even think about.

 

And of course in most instances it is the members who are suffering and need support who continue posting.

I understand, I know that I won't be one of those people that doesn't feel a need to come back once in recovery. I feel like it's our civic duty and responsibility to come back and provide hope to those people that were here for us during the darkest time of our life. This is all provided that I do recover, which I'm becoming increasingly more doubtful of the longer I go without experiencing ANY change in my symptoms. 

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