What does "fully healed" mean?

[Jemima]

Osk..how do you know some people don't recover?

 

I'd like to ask that question as well.  This sort of comment is very discouraging to people who are still in withdrawal and if it isn't based on facts, they are being needlessly upset. I've never read, anywhere, that there are some people who don't recover from AD withdrawal.  The human brain is an amazing organ that can heal itself, given enough time.

[oskcajga]

 

Osk..how do you know some people don't recover?

 

I'd like to ask that question as well.  This sort of comment is very discouraging to people who are still in withdrawal and if it isn't based on facts, they are being needlessly upset. I've never read, anywhere, that there are some people who don't recover from AD withdrawal.  The human brain is an amazing organ that can heal itself, given enough time.

 

 

I should edit my comment to say that some people don't recover for a very long time.  As someone who's currently going through a very difficult period of my life, I tend to exaggerate from time to time.  I suppose I just see that some people on the forums are still suffering 5-10 years after stopping the medication.  That alone is pretty discouraging.  For all intents and purposes, this is pretty close to "not recovering" from a human's time-perspective.  That's a really really long time. 

 

I do apologize if I discouraged anyone.  If I were to amend my statement, I'd say that while it's theoretically possible (and in my opinion likely) that some small fraction (say 1-5%) of all people who go through horrendous withdrawals or adverse reactions don't fully recover, 100% of people get substantially better, and some large fraction (say 95%) of people do fully recover.  I don't think anyone knows if 100% of people do recover.  Is there any evidence for that?  If there's evidence for the fact that 100% of people, given enough time, fully recover, then I sincerely apologize for spreading false information.  I really do. 

 

I have a very hard time just saying "100% of people will fully recover" when the term full recovery isn't really very easy to define.  How do people know if they're fully recovered?  Maybe they're 95% recovered and just feel fully recovered?  Full recovery is an extremely difficult term to define, and as such, it makes it hard to imagine that every ounce of who I was before these medications is going to fully return.  If you would like me to withhold my opinions that fully recovery may not be fully possible, I can do that if it makes people happy.  I don't want to push someone over the edge.  I've always sort of been someone who likes to just know how it is.  I'm the sort of person that doesn't like being told that full recovery is possible, but I appreciate them not just being "fakely" optimistic and superficial.  I think there's overwhelming anecdotal evidence that 100% of people substantially improve over several years, and that MOST people don't even get into protracted withdrawal in the first place.  I haven't read anywhere that full recovery is ALWAYS possible - and for someone who's been going through this for a long time, I sort of appreciate realizing that this might never go away 100% - I may not be able to play instruments like I used to, or write complex stories or do calculus or be a top rate academic at premier institutions like I was able to before the medication.  These higher order functions are very fragile, and I'm not sure if they come back completely. 

 

In my opinion, I think what these drugs do to the brain is sort of like what happens when you prune a tree - it takes away most of the foliage and then it takes a long time for that tree to recover to its previous state.  By altering the original struture of the tree, however, the original form is almost never fully achieved.  It's some new and functional form, but the original form isn't fully achieved.  Biological systems are very fragile and complex - but they do demonstrate an ability to recover with time.  One little example of this is recovery from benzodiazapines.  there's something called the "kindling effect" as I'm sure that you're aware.  In this situation, someone who has recovered from benzos are not actually recovered, because in reality their neurons are now more readily adaptable and upon a subsequent exposure, their brain now reacts more profoundly the second time around.  This demonstrates that a long term change in the functioning of the neurons has taken place after exposure to the drugs - they may feel fully recovered, but structuraly and functionally, their brains now behave differently.

 

I feel like we're all sort of like pioneers in the field of psycotrophic medication effects here on communities like SA.  No one in science is going to get a grant funded to study the long term effects and recovery rates of psycotrophic medication.  At least not with the current clout that pharmaceutical companies hold over the data that enters into the journals in this country.  The data and success stories on websites like SA are all the world has to help us through this experience.

 

All my posts are just my opinions, and my opinions are based on my observations and my knowledge (what ever remains of my knowledge, that is - after the medication did away with much of it).  I deeply care about the wellbeing of this community, and think we need a great deal more support than we are getting from the public.  Many folks who have issues with medications are in a very bad way - and need very strong support to get through the process.  It's a wonderful thing that this website exists and is willing to help people out.

 

Love and hugs.

[bluebalu86]

I can't live with the thought that I may never fully recover. It's soul crushing  

[a99]

oskcajga : so when you say full recovery may never happen do you mean the structural changes in the brain and not how the person feels ?

It would be much less cruel to know that  someday I will feel the same way before the drug and get my memory and cognition back even if it's with a "different " sensitive brain !

[a99]

oskcajga - can you please answer my  question from your point of view ?

[oskcajga]

oskcajga : so when you say full recovery may never happen do you mean the structural changes in the brain and not how the person feels ?

It would be much less cruel to know that  someday I will feel the same way before the drug and get my memory and cognition back even if it's with a "different " sensitive brain !

 

To be honest, I don't know what will happen.  But I can share my thoughts on your case, just in a general way.

 

I think that full recovery is a dubious prospect, just because it's difficult to gauge what full recovery really means.  It's important to recall that the vast majority of people who stop taking this medication will experience a nearly full recovery.  If you think about it, most people don't even get protracted withdrawal.  Like my analogy with the tree, maybe the structure is subtly different, but they're functioning exactly the same as before the meds. If you look at how wounds on the body heal, it's never 100% like the original tissue - but it's close enough.   I don't really know much about nerve regeneration, etc, especially with the brain - but I imagine that neurons heal in a similar fashion.

 

Odds are in your favor that, given enough time, you'll feel the way you used to before you got off the medication.  On the other hand, I think there's also a decent chance that your central nervous system may not operate the same way as it used to in certain respects.  For example, you may not be able to use any drugs, drink alcohol, and may have to be very careful when taking medication.

 

In my own case, I'd be perfectly satisfied with a "recovered enough" scenario, where I was able to feel mostly normal, even if a bit damaged in certain aspects.  I've been like this for over 2 years now, and haven't been on a single ssri for about 2 years - and my body is still operating fundamentally differently now than it did at the beginning of all this. 

 

So I think that there's reason to be optimistic about your prognosis, but based on the stories I've read, it's probably going to take a while.

 

The symptoms associated with SSRI discontinuation seem to be most consistent with neuropathy, rather than a simple receptor downregulation that occurs when you take drugs (e.g., drug tolerance).  If you read through this NIH article, a lot of the symptoms of neuropathy described here are consistent with many of the symptoms described on this website.   You will see a section that indicates toxic drugs can cause neropathies.  That would be most consistent with my experience.  I think that if you gauge your prognosis in terms of neuropathy, rather than something like drug tolerance (i.e., classic withdrawal) you might have a better idea of what to expect.  Thankfully, it does seem to heal, or there wouldn't be success stories around the web.

 

http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

[apace41]

Osk,

 

It's an interesting philosophical debate as to "what is fully healed?" I would rephrase your viewpoint (with your indulgence) to see if it resonates with you and, perhaps, is less "soul-crushing" for others.

 

I think your point is that the neuroplastic changes that occur during the withdrawal process (and thereafter) are simply an unknown and will vary from person to person based on myriad factors, some that are controllable and some that are not. As new pathways form in the neuronal regeneration process, one can logically surmise that when it is all said and done we will be "different". Better and worse are qualitative judgments that, in many ways, are so subjective as to be meaningless. Some of us may well not like ourselves as much after withdrawal but we will have the ability and the need to adapt to who we are after withdrawal. Some of us, especially given the strength it takes to get off the drugs, will like ourselves even more after withdrawal. And, undoubtedly, some of us will be content with who we are after the process. It is important to remember that time will pass while we fight our fights and we would have seen differences in ourselves without the drug withdrawal effects.

 

At the end of the day, you put all the factors into a blender, mix it all up, and, to my way of thinking, after a period of time that differs for all, you WILL be able to conduct a happy, meaningful and fulfilling life after withdrawal is over. You will be different but you can still be a great version of yourself.

 

Andy

[Altostrata]

Excellent discussion, everyone.

 

The way I look at it, the majority of people going off these drugs do fully heal.

 

In fact, medicine believes the majority have mild and transient withdrawal symptoms for a few weeks, and then are good as new. This may be true, or it may be that doctors tend to be blind to persistent withdrawal symptoms, patients don't know what's happening to them, and those that complain are declared "relapsed" so the whole thing is covered up.

 

However, we do see very gradual healing here among people who are aware they have withdrawal syndrome. That is one of the reasons this site exists, to document the progress of the condition. Healing can take a long time. It took me 9 years.

 

Over those years, people develop other health problems, including aging. Neurologically, one cannot step in the same river twice, so even if a person has a complete absence of withdrawal symptoms after a couple of years, he or she might feel somewhat different. The experience itself changes you, and then there is the passage of time as well.

 

The absolute "never" is always a problem, it's hard to follow people long enough to see if this is true. Neurological adaptation suggests that if the nervous system can be shifted one way by drugs, it can shift itself in the other direction as well -- it tends to return to factory settings.

 

Most likely, healing follows a normal curve, with those who cold-turkey with no withdrawal symptoms on one very narrow end, and those recovering over many years at the other very narrow end, with most people somewhere in the big bulge of the middle, recovering after some months or a couple of years.

 

So it's very extreme, and probably unnecessarily pessimistic, to say some people never heal. It is highly unlikely that anyone one person would be in that very tiny group, if it exists -- which we don't know.

 

It is better for the nervous system for the person to visualize healing rather than an unlikely disaster. Given neurological adaptability, constantly visualizing the worst can in this situation bring it about! You can be the author of your own fate -- as Henry Ford said: "If you think you can do a thing or think you can't do a thing, you're right."

 

Given the long, inconsistent recovery time, this condition teaches patience, acceptance, and being present. When you're suffering, there's no use in worrying about future disaster that may never come, you need to take care of yourself in the here and now.

[NoMeaning25]

Nicely said Alto.

 

Im 3 years completely medication free. I have seen little to no improvements. Its scary for some to hear this, but it does happen that people go years without getting better.

 

But people do eventually get better. Completely heal? I believe most do. But there are the exceptions unfortunately and i am terrified like anyone else that i fall within the minority of those who dont. I know of a few people thats 10+ years off not recovered. Who knows maybe they are drinking, taking other meds etc etc we dont know what they dont tell. I know of 2 benzo withdrawal ladies that are 15+ years off not recovered, Polenta is the ones name the other i have to look up.

 

Age has nothing to do with this syndrome or else i wouldve been recovered. I think stress has a major effect on recovery. Diet plays another role. 

[manymoretodays]

Bump.  And lol.......I was just thinking that the visualization was me being delusional..........so that part was good to read.

 

And going back to "original factory settings" but with a twist I guess is something to ponder now.  I am kind of out of words today.

[shamaan]

On the other hand, I think there's also a decent chance that your central nervous system may not operate the same way as it used to in certain respects.  For example, you may not be able to use any drugs, drink alcohol, and may have to be very careful when taking medication.

Is this just your opinion? Or is it based on something?

 

I think there will be structural differences of the brain after withdrawal , but i also think (hope) in the end , the brain will be stabilised again and work as before. Maybe differently , but it will...

[apace41]

 

On the other hand, I think there's also a decent chance that your central nervous system may not operate the same way as it used to in certain respects.  For example, you may not be able to use any drugs, drink alcohol, and may have to be very careful when taking medication.

Is this just your opinion? Or is it based on something?

 

I think there will be structural differences of the brain after withdrawal , but i also think (hope) in the end , the brain will be stabilised again and work as before. Maybe differently , but it will...

 

 

 

I doubt you could find anything out there that would be an "outcome" study addressing whether people are more or less sensitized to coffee, alcohol and meds after some period of time off of SSRIs (or most other meds).  The bulk if the information that people use to make statements like the one that Osk made is based on posts on forums like this one.  Given that there is a very highly skewed population on such sites (people don't usually hang around if they aren't protracted in some way), and the posts are being made during the recovery and not some time afterwards (regardless of how long that takes), I don't think you can draw any conclusions about these kinds of things.  Anecdotally, however, there does seem to be a greater level of sensitivity of people as they go through the process.  Whether that translates to wanting a glass of wine 5 years out -- who can really say?

[Altostrata]

We do know that withdrawal syndrome indicates nervous system sensitization.

 

The fading of withdrawal symptoms indicates nervous system stabilization. Given the time gone by and the nervous system's history of distress, I would not expect anyone to be able to beat up one's nervous system like a healthy irresponsible 20-year-old with no history of such injury.

 

This condition teaches us to take care of ourselves and listen to our bodies, isn't that a good thing?

[a99]

If I can ask : what is really meant by stress ? and how does it affect recovery ?

 does it only slow  healing down or can it  stop the process ( recovery ) completely ? 

[Heart]

I have to jump in. This is a hypothetical discussion related to my personal situation. Although I am only 4 years out from being med free and 3 ½ years out from the start of protracted withdrawal, my first flagging symptom was the loss of any feeling of a buzz when drinking a glass of wine (or 2, or 3 – didn’t try anything more than that). And it wasn’t just the disappearance of the buzz, drinking any alcohol would also set me up for a doubling of that ugly, despairing blackness which happened that night, the next morning, and, many times, well into the next day. This was new, I had never experienced mood changes from drinking before. As a result, for a good 2 ½ years I was too frightened to touch a drop of alcohol, even as an experiment to see where I was at.

 

“Whether that translates to wanting a glass of wine 5 years out – who can really say?”

 

3 ½ years since the start of this symptom I now drink, on occasion. The change happened only a couple of months ago.

 

Before, I really looked forward to a couple of glasses of wine 2 or 3 times a week, and sometimes I had to watch myself that I wasn’t temped to drink that 3^rd glass which could be a bit rocky on my stomach the next day. I could get really happy on 2 glasses of wine, and also very chatty.

 

Now, I have no temptation to initiate drinking, or even a need for a 2^nd drink, but it’s good to be able to occasionally share 1 or 2 drinks with people I care about. The feeling is different, much subtler, like a hint of a warm smile in the back of my mind. That’s it – that’s all I get. Am I happy? Absolutely – it’s wonderful. I feel an awe that my own mind and body could create this feeling from the ashes. This is not an intellectual contemplation, I feel deep gratitude with each glass of wine I choose to consume. Perhaps in the future this feeling will fade. But, hopefully, I we be able to remember.

 

That doesn’t mean that things are perfect. Although I no longer have that feeling of direct correlation between drinking and black mornings, my nights and mornings can still be bad all on their own. Nights and mornings have not completely settled down. Still, I also see every glass as a calculated risk. Many drinks I turn down. This is all fine with me, and, I think, a healthier attitude than I used to have about drinking.

 

NoMeaning, I sincerely wish that you see improvement soon.

 

Can anyone else share firsthand experience?

[apace41]

“Whether that translates to wanting a glass of wine 5 years out – who can really say?”

 

3 ½ years since the start of this symptom I now drink, on occasion. The change happened only a couple of months ago.

 

 

Heart,

 

Thank you for adding your personal experience to the discussion.  I think that it is great that you are experiencing "mindful" wine consumption and feeling good about it.  If I had to guess, I would imagine that you won't have to be as careful going forward but that you probably will in any event.  We are all impacted and changed by this experience. 

 

Of course, as I stated in the earlier post, that is only my guess and nobody can know for sure how our CNS will react.

 

Andy

[bluebalu86]

This thread is making me lose hope... I can't continue if I know there is a chance I won't recover. 

[apace41]

This thread is making me lose hope... I can't continue if I know there is a chance I won't recover.

 

You will recover, Blue. Nobody can point to anything that says you won't recover. People speculate as to what might or might not happen and how it will happen. The brain is incredible and constantly molds and remakes itself. Take time, be patient and gentle with yourself, and keep your faith and belief. You will heal.

 

Andy

[Heart]

Andy – thank you for what you wrote. However, I need to say that I don’t believe that mindfulness is exactly the right word since it takes no particular attention or effort on my part. I strongly feel it’s just a, straight out, gift.

 

Blue – I hope that my post did not come across as depressing. It was not my intention and I did not write it as something sad. I know that I will recover. I didn’t always feel it, but I am confident now. I also believe that you will recover.  Honestly.

 

[oskcajga]

Osk,

 

It's an interesting philosophical debate as to "what is fully healed?" I would rephrase your viewpoint (with your indulgence) to see if it resonates with you and, perhaps, is less "soul-crushing" for others.

 

I think your point is that the neuroplastic changes that occur during the withdrawal process (and thereafter) are simply an unknown and will vary from person to person based on myriad factors, some that are controllable and some that are not. As new pathways form in the neuronal regeneration process, one can logically surmise that when it is all said and done we will be "different". Better and worse are qualitative judgments that, in many ways, are so subjective as to be meaningless. Some of us may well not like ourselves as much after withdrawal but we will have the ability and the need to adapt to who we are after withdrawal. Some of us, especially given the strength it takes to get off the drugs, will like ourselves even more after withdrawal. And, undoubtedly, some of us will be content with who we are after the process. It is important to remember that time will pass while we fight our fights and we would have seen differences in ourselves without the drug withdrawal effects.

 

At the end of the day, you put all the factors into a blender, mix it all up, and, to my way of thinking, after a period of time that differs for all, you WILL be able to conduct a happy, meaningful and fulfilling life after withdrawal is over. You will be different but you can still be a great version of yourself.

 

Andy

 

This sounds about right.  So long as people don't go back on psych meds or confound their recovery by doing drugs or have an adverse reaction to another medical treatment - I definitely think that everyone will be able to lead a full and fulfilling life.   Even in those cases, I think recovery is still possible - but it's certainly going to be more complicated.

 

 

However, we do see very gradual healing here among people who are aware they have withdrawal syndrome. That is one of the reasons this site exists, to document the progress of the condition. Healing can take a long time. It took me 9 years.

 

Over those years, people develop other health problems, including aging. Neurologically, one cannot step in the same river twice, so even if a person has a complete absence of withdrawal symptoms after a couple of years, he or she might feel somewhat different. The experience itself changes you, and then there is the passage of time as well.

 

The absolute "never" is always a problem, it's hard to follow people long enough to see if this is true. Neurological adaptation suggests that if the nervous system can be shifted one way by drugs, it can shift itself in the other direction as well -- it tends to return to factory settings.

 

Most likely, healing follows a normal curve, with those who cold-turkey with no withdrawal symptoms on one very narrow end, and those recovering over many years at the other very narrow end, with most people somewhere in the big bulge of the middle, recovering after some months or a couple of years.

 

So it's very extreme, and probably unnecessarily pessimistic, to say some people never heal. It is highly unlikely that anyone one person would be in that very tiny group, if it exists -- which we don't know.

 

It is better for the nervous system for the person to visualize healing rather than an unlikely disaster. Given neurological adaptability, constantly visualizing the worst can in this situation bring it about! You can be the author of your own fate -- as Henry Ford said: "If you think you can do a thing or think you can't do a thing, you're right."

 

Given the long, inconsistent recovery time, this condition teaches patience, acceptance, and being present. When you're suffering, there's no use in worrying about future disaster that may never come, you need to take care of yourself in the here and now.

 

I can't really add anything to this excellent response.   I think that your point about the passage of time is very important for folks to read and consider.

 

There's definitely evidence demonstrating the utility of positive thinking and visualization for healing.  This is something I need to get back into.  When I was living alone it was somewhat easier to do.  It's tough very tough - I tend to focus on the negative more now than I have in the past.  So many not so great things have happened to me, physically, and in life, that I tend to focus on those rather than the positive. 

 

Anyways, thank you everyone - this is a very interesting discussion.

 

Love and hugs.

[manymoretodays]

"neuronal regeneration process" and "new pathways".

 

I would cringe if I had to go back to my 20's.  I am thinking hopefully mid thirties or so is where my regeneration lands........at least mentally/emotionally/cognitively.  Physically.....just pushing 50 would be fine with me being super cautious and not "overindulging" too much.

 

I kind of want  a nice chilled glass of wine now.......but.........the moment of ahhh would be superceded by the aftereffect of depression.  Got enough of that on board right now.  Passion tea.....luke warmish.......=perfect.

[apace41]

 

I would cringe if I had to go back to my 20's.  I am thinking hopefully mid thirties or so is where my regeneration lands........at least mentally/emotionally/cognitively.  Physically.....just pushing 50 would be fine with me being super cautious and not "overindulging" too much.

 

 

Would be great if as "compensation" for going through this crap you got to pick and choose and assemble the "you" that you get to be once you are through the withdrawal process, huh?  I think I'd opt for the following:

 

• Wisdom and experience of my 50's
• Drive and desire for achievement of my 40s
• Energy and commitment of my 30s
• Physique and recovery time of my 20s, and...
• Hairline of my teens!

LOL.  Fun game to play.

 

Would that it were so easy.

 

Good additions to the thread Osk and Manymore.

 

 

Andy

[manymoretodays]

Today for my wish list of where my brain/emotions land:

 

A little bit of that "beneficial hypomania" from time to time that I can just call on up at will.

 

hahahahaha

 

Tis a fun game. 

 

I've also often felt that I am really just a poor black girl from the ghetto.......hard to explain.

 

But if at all possible I would like to change my skin color to just a little more "cafe" colored.  Especially in the summertime. 

[manymoretodays]

I am going to try and pretend that I am fully healed somehow today.  It's a push but........maybe this is the best it is going to be for awhile.  If I could just stay out of thought mind..........

[JanCarol]

Awesome discussion.

 

In my experience, the drugs partly made me who I am today.

 

Through the ring of fire, an initiation of pain, suffering, and iatrogenic damage - I am a better, more considerate person.  But through the ring of fire, I will never be able to "train to peak fitness in a month" like I used to, I will never haul a 30 pound backpack into the bush and sleep by a mountain stream again.  I'm not likely to ever stay up through the night waiting for the meteor shower.  

 

On the converse, I am less likely to put my desires before others needs.  I am less likely to nag and b**** and moan about my viewpoint.  I am more likely to be grateful for what I have instead of longing for what I don't.

 

I WILL ALWAYS have iatrogenic damage - most of which is not drug related (but what I submitted to on the drugs was removal of 3 major endocrines: ovaries, thyroid, and parathyroid).  I will never get them back.  I have some permanent damage, and I know of others who have permanent neurological conditions from the drugs.  But better, much better, than the deep fog of druggedness.

 

I will never be what I was.  And in many ways, this is a good thing.

[manymoretodays]

Awesome discussion.

 

In my experience, the drugs partly made me who I am today.

 

Through the ring of fire, an initiation of pain, suffering, and iatrogenic damage - I am a better, more considerate person.  But through the ring of fire, I will never be able to "train to peak fitness in a month" like I used to, I will never haul a 30 pound backpack into the bush and sleep by a mountain stream again.  I'm not likely to ever stay up through the night waiting for the meteor shower.  

 

On the converse, I am less likely to put my desires before others needs.  I am less likely to nag and b**** and moan about my viewpoint.  I am more likely to be grateful for what I have instead of longing for what I don't.

 

I WILL ALWAYS have iatrogenic damage - most of which is not drug related (but what I submitted to on the drugs was removal of 3 major endocrines: ovaries, thyroid, and parathyroid).  I will never get them back.  I have some permanent damage, and I know of others who have permanent neurological conditions from the drugs.  But better, much better, than the deep fog of druggedness.

 

I will never be what I was.  And in many ways, this is a good thing.

 

Thank you Jan Carol.  That was beautiful!