robcbar1: Suffering after 20 years of SSRI

[nz11]

Greetings Rob

Sorry  no one has replied all day.

I feel bad for you that you have taken another drug and still found no relief.

I'm not a remeron expert but its generally accepted that ad dependency can occur at a month. My feeling is it could be closer to benzo time frames of about 2 weeks especially with a sensitized cns 

It will then need to be tapered. imo you could be on the door of dependency now.

Its very unpredictable what will happen. so expect the unexpected. 

If you want off  my feeling is why taper for longer than you've taken the drug. However not sure if this approach has been told to the cns.

If the cns is an unhappy camper you will have to try to find a nondrug way to self sooth. 

 

The way I see it you could get off in three ways.

1. assume no dependency then CT it. You will have to resolve to absorb the fallout if any.

2. assume dependency so try a small say quarter reduction and see how you go after a week.

3. Go to half for a week and then one quarter for a week then off. That will be one month exposure in total.

 

I'm sure you can think up more variations to these three.

 

It looks like going on and off all these different drugs has made you hypersensitive to neurologically active drugs and so the potential for paradoxical reactions is high.

 

Good luck with your decision.

nz11

 

[robcbar1]

Quick update to whoever is reading my story (sadly I don't think too many people are)...

 

The Remeron (7.5mg) made everything markedly worse, especially the derealization and tinnitus.  I stopped taking it a week ago and have been sleeping better with 1.25mg of melatonin before bed.  The derealization has toned down a bit but the tinnitus is still quite strong.  I am still taking 5mg of Lamictal although I'm not sure if it doing much of anything.  So what next?  It's very difficult to suffer day in and day out.  I have two young kids and my wife needs me to be a part of the family. 

 

The worst symptoms at this point are derealization, dizziness, tinnitus, shaking/agitation/restlessness (akathesia?), and general feeling of not "being here" or alive.

 

I keep telling myself that this too shall pass.  I am in this for the long haul, but man it's torture.     

 

Any insight would be much appreciated.  I hope everyone is coping and healing.   

[Littlegrandma]

Hi Rob

i wish I had words of wisdom for you. Sadly, I don’t. I just wanted to say I am thinking about you and sent a prayer up for you. 

 

Are you off off everything except the lamictal? 

 

I am suffering the same side effects after a small taper of lexapro 2 wks ago. Saturday was one of the best afternoons I’ve had in 8 mo. Yesterday everything went to hell. My dp/dr never let up, but Saturday I was calm and able to go in public and hold a conversation. Last night I needed help getting upstairs. Sorry you’re suffering. If there wasn’t stories by you and others of these side effects, I would have been in the ER last night and other nights also. 

It sure is torture!! But this too shall pass.   

 

I hope your day gets better. 

xx Lg

[powerback]

2 hours ago, robcbar1 said:

Quick update to whoever is reading my story (sadly I don't think too many people are)...

 

The Remeron (7.5mg) made everything markedly worse, especially the derealization and tinnitus.  I stopped taking it a week ago and have been sleeping better with 1.25mg of melatonin before bed.  The derealization has toned down a bit but the tinnitus is still quite strong.  I am still taking 5mg of Lamictal although I'm not sure if it doing much of anything.  So what next?  It's very difficult to suffer day in and day out.  I have two young kids and my wife needs me to be a part of the family. 

 

The worst symptoms at this point are derealization, dizziness, tinnitus, shaking/agitation/restlessness (akathesia?), and general feeling of not "being here" or alive.

 

I keep telling myself that this too shall pass.  I am in this for the long haul, but man it's torture.     

 

Any insight would be much appreciated.  I hope everyone is coping and healing.   

Hi Robcbar1 welcome ,don't worry about if anyone is reading your thread or not ,its good for you to vent anyway ,I'm always at it .

Reading through your thread just now ,you've had quite the journey .

Start reading and re reading the coping techniques and symptoms and self-care section   ,the power of our minds to send us into a panic and tailspin is ferocious.

 

This is by no means a judgement on you ,but its panic that's bringing you to hospital and all they do is medicate and send you home ,I have been desperate for relief some days  but knowing meds wont make a difference has forced me into learning different ways .

please listen to the mods .I'm also in protracted withdrawl and mostly suffering lately .

you are a good member to have from what I've read ,your not  taking this lying down ,your fighting and exhausting your resources .we can learn so much from one another .

none of us wanted   into this situation but we have to fight and never give up .

Take care .

PB

[Cheeky]

Hey Rob, 

I'm following your thread and I think your doing great. You not alone buddy in feeling like this. its just so dam hard the mental torture but the good thing is you will heal , it just takes time.

[robcbar1]

On ‎01‎/‎29‎/‎2018 at 12:50 PM, powerback said:

Hi Robcbar1 welcome ,don't worry about if anyone is reading your thread or not ,its good for you to vent anyway ,I'm always at it .

Reading through your thread just now ,you've had quite the journey .

Start reading and re reading the coping techniques and symptoms and self-care section   ,the power of our minds to send us into a panic and tailspin is ferocious.

 

This is by no means a judgement on you ,but its panic that's bringing you to hospital and all they do is medicate and send you home ,I have been desperate for relief some days  but knowing meds wont make a difference has forced me into learning different ways .

please listen to the mods .I'm also in protracted withdrawl and mostly suffering lately .

you are a good member to have from what I've read ,your not  taking this lying down ,your fighting and exhausting your resources .we can learn so much from one another .

none of us wanted   into this situation but we have to fight and never give up .

Take care .

PB

Thanks PB.  So cool of you to chime in.  March will be 2 yrs. since abruptly stopping Lexapro (on it for 13 yrs.) but I followed it up with Zoloft for a few months and then trialed a bunch of others.  So I really don't know when my official "clean" date is.  In other words, I'm wondering if my WD from mainly Lexapro or do the others that followed it play a part?  I guess I really don't care at this point.  I literally have good hours and bad hours, like intraday windows and waves.  But I'll take any relief I can get.  I see you're making progress on your ven reduction.  Keep up the good work.  I'm here if you ever need to vent.    

[robcbar1]

On ‎01‎/‎29‎/‎2018 at 6:19 PM, Cheeky said:

Hey Rob, 

I'm following your thread and I think your doing great. You not alone buddy in feeling like this. its just so dam hard the mental torture but the good thing is you will heal , it just takes time.

You rock cheeky.  Thanks for this.  The aloneness and boredom is a killer.  I just bought a guitar in hopes to divert some of my attention away from this dreadful experience.  How is your journey going thus far? 

[powerback]

1 hour ago, robcbar1 said:

Thanks PB.  So cool of you to chime in.  March will be 2 yrs. since abruptly stopping Lexapro (on it for 13 yrs.) but I followed it up with Zoloft for a few months and then trialed a bunch of others.  So I really don't know when my official "clean" date is.  In other words, I'm wondering if my WD from mainly Lexapro or do the others that followed it play a part?  I guess I really don't care at this point.  I literally have good hours and bad hours, like intraday windows and waves.  But I'll take any relief I can get.  I see you're making progress on your ven reduction.  Keep up the good work.  I'm here if you ever need to vent.    

Thanks rob ,its quite the pain alrite.

I was doing alot of thinking while out for a walk today and im not coping not working regularly so I even thought about the dreaded up dose to 37.5 mg,theres a chance of regular work and im agonising over what to do ,you know yourself how it works,if I have to leave the work because of symptoms ive let someone down,this is simply not understood .

Take care and be safe

[Cheeky]

9 hours ago, robcbar1 said:

You rock cheeky.  Thanks for this.  The aloneness and boredom is a killer.  I just bought a guitar in hopes to divert some of my attention away from this dreadful experience.  How is your journey going thus far? 

The guitar sounds like a great idea, any detraction helps. I"m going okay taking this journey on the slower side, I need to work full tome so I need my sanity. I'm one off the unlucky ones that I can only do a micro tapper 2% drops. slow and steady for me, I'm listening to my body.

[robcbar1]

Hello SA friends – As I sit here trying to work (from home), I’m fighting a nasty 3-month wave and wondering if I will ever get better.  I think I will, but like many of you who have been through it, it’s not very convincing when you literally feel like you’re dying.  As you’ll see in one of my previous posts,  I recently completely a two week program at a hospital in Boston to understand if there is anything that can help my situation.  And like many of you have said, there is no magic pill or cure-all...except time.  Lesson learned.  I continue to take 5mg of Lamictal but not sure it’s doing much of anything.  Would love to hear anyone's take on whether Lamictal helped them or if it's best to be 100% drug free.  I've only been taking it for 3.5 weeks...if I stopped would I need to wean?   

 

Anyway, I continually harp on my “Top 3” symptoms…derealization, nervous system dysfunction, and insomnia.  These are the symptoms, among dozens, that bring me to my knees.  One at a time would be somewhat tolerable but when all three are in full effect, I can barely function.

 

The derealization and insomnia equally suck but I’m really struggling with autonomic nervous system dysfunction.  I have extreme sensitivity to sound, light, and motion.  I need to wear ear plugs around the house and I feel like a vampire in sunlight.  I get acid-like waves of adrenaline if I try to relax or lay down, which prevents me from being able to do any kind of mindfulness or meditation.  I can’t drive and long rides make me car sick.  My body freezes in fear whenever I try to leave the house.  I’m unable to walk into a store because my body locks up in terror.  Stimulation of any kind sends me to pieces.  It’s not agoraphobia as I’m not consciously thinking about it or identifying a fear, it’s more of a visceral reaction from deep in my body.  Thanks autonomic dysfunction!    

 

So my questions for anyone reading this...

• Are my nervous system issues an extreme case or is this par for the course?  How do you cope with it?
• Do the sensitivities to sound, light, and motion tend to resolve slowly over time or do they tend to vanish in a window? 
• My wife keeps telling me to push through the fear but I’m wondering if that will only prolong the healing of my nervous system.  In other words, if I push too hard, will my system push back even harder (making my symptoms worse)? 

Any thoughts would be much appreciated.  Thanks. 

 

PS – I’m also open to any supplement suggestions.  I’ve scoured SA and it looks like Omega 3 and magnesium are the only ones universally approved.  I can’t take Omega 3, for some reason it make me anxious.  Mag and melatonin help a lot.   

  

[robcbar1]

On ‎11‎/‎05‎/‎2017 at 9:57 AM, baroquep said:

Hi Robcbar1, have you considered reinstating a very small dose (i.e., lowest dose possible to reduce withdrawal symptoms) of an antidepressant to see if that might help calm your withdrawal symptoms?  Lexapro unfortunately is one of the most potent antidepressants on the market today and very difficult to withdrawal from.  Because it is so potent, it is imperative that you taper off of this drug cautiously.  Judging from your withdrawal history signature, your doctor tried to cover up withdrawal from Lexapro with Zoloft and Celexa which simply exacerbated your symptoms. 

It's not entirely clear how you discontinued Lexapro or the other antidepressants.  Could you please answer a few questions:  

 

Did you increase the dose of Lexapro through August 2015 and March 20166 and then switch to Zoloft?  

When Zoloft made thing worse were you switched  to Celexa?  How did you discontinue Celexa?  

You mention Prozac, Effexor and Cymbalta as well ... when did you take these drugs?  When did you stop?  

Are you completely antidepressant free as of today's date?  

What is your current symptom pattern?

Without having a clear picture of what has been going on with you between November 2015 and January 2017, as well as where you are right now, it will be impossible for us to suggest a plan on how to help you get back on track.  If you can answer the questions above, and update your withdrawal history signature, we will be better able to look at your history and make recommendations.  

 

Account Settings – Create or Edit a signature

 

I'm attaching a link on reinstatement so that you can familiarize yourself with what you can expect and the benefits and risks associated with attempting to reinstate.  Because it looks like you have been off of antidepressants since January 2017, you will want to note that under those circumstances reinstatement may not work for you though in my opinion, it is certainly worth a shot if you have not experienced any positive signs that you are heading toward healing since January.  

 

About reinstating and stabilizing to reduce withdrawal symptoms
What to Expect in Reinstatement (James Heaney article)

I just noticed that I never replied to this...sorry about that. 

 

Did you increase the dose of Lexapro through August 2015 and March 2016 and then switch to Zoloft?  After being told that the Lexapro “pooped out” I tried Prozac for two weeks in Oct 2015 (one week cross taper from Lexapro) and it made me very sick.  I went back to the psychiatrist and begged to go back on Lexapro to stabilize.  Then we played with the Lexapro dosage from 10 mg to 15 mg to 20 mg without any success…so I weaned down (over a month – too quickly)…and switched to Zoloft 25mg in March 2016.      

 

When Zoloft made thing worse were you switched  to Celexa?  Zoloft was funny.  It helped with anxiety, mood, and sleep but made the derealization much worse.  I stopped in Aug 2016 and didn’t try Celexa until Oct 2016.  I felt horrible and went to my PCP…the theory was that Celexa may provide some relief since it’s a chemical cousin of Lexapro but it made me feel terrible.     

 

How did you discontinue Celexa?  

I took it for approx three months (Oct 2016–Jan 2016) and weaned over a month. 

 

You mention Prozac, Effexor and Cymbalta as well ... when did you take these drugs?  These were short trials on very small doses.  Prozac was 2 weeks in Oct 2015, Effexor was 4 days in Feb 2017, Cymbalta was 1 day in March 2017.  

 

Are you completely antidepressant free as of today's date?

I tried Remeron 7.5mg for sleep several weeks ago.  First couple days were Ok but then I reacted badly to it.  I stopped taking it after 13 days.  The only thing I take now is 5mg of Lamictal which I started on 1/8/18 (not sure if it’s doing anything).  I have not taken an SSRI since March 2017.      

 

What is your current symptom pattern?

Steady derealization, dizziness, unstable moods, insomnia, and anxiety since stopping Lexapro in March 2016.  All meds I’ve tried have made these symptoms worse.  Two huge waves at the start of Nov 2017 and another post holidays in December 2017 brought on the worst symptoms yet – severe sensitivity to sound/light/motion, akathisia, strong derealization, agitation, depression, anxiety/panic, no appetite, can barely leave the house.

[powerback]

17 hours ago, robcbar1 said:

Hello SA friends – As I sit here trying to work (from home), I’m fighting a nasty 3-month wave and wondering if I will ever get better.  I think I will, but like many of you who have been through it, it’s not very convincing when you literally feel like you’re dying.  As you’ll see in one of my previous posts,  I recently completely a two week program at a hospital in Boston to understand if there is anything that can help my situation.  And like many of you have said, there is no magic pill or cure-all...except time.  Lesson learned.  I continue to take 5mg of Lamictal but not sure it’s doing much of anything.  Would love to hear anyone's take on whether Lamictal helped them or if it's best to be 100% drug free.  I've only been taking it for 3.5 weeks...if I stopped would I need to wean?   

 

Anyway, I continually harp on my “Top 3” symptoms…derealization, nervous system dysfunction, and insomnia.  These are the symptoms, among dozens, that bring me to my knees.  One at a time would be somewhat tolerable but when all three are in full effect, I can barely function.

 

The derealization and insomnia equally suck but I’m really struggling with autonomic nervous system dysfunction.  I have extreme sensitivity to sound, light, and motion.  I need to wear ear plugs around the house and I feel like a vampire in sunlight.  I get acid-like waves of adrenaline if I try to relax or lay down, which prevents me from being able to do any kind of mindfulness or meditation.  I can’t drive and long rides make me car sick.  My body freezes in fear whenever I try to leave the house.  I’m unable to walk into a store because my body locks up in terror.  Stimulation of any kind sends me to pieces.  It’s not agoraphobia as I’m not consciously thinking about it or identifying a fear, it’s more of a visceral reaction from deep in my body.  Thanks autonomic dysfunction!    

 

So my questions for anyone reading this...

• Are my nervous system issues an extreme case or is this par for the course?  How do you cope with it?
• Do the sensitivities to sound, light, and motion tend to resolve slowly over time or do they tend to vanish in a window? 
• My wife keeps telling me to push through the fear but I’m wondering if that will only prolong the healing of my nervous system.  In other words, if I push too hard, will my system push back even harder (making my symptoms worse)? 

Any thoughts would be much appreciated.  Thanks. 

 

PS – I’m also open to any supplement suggestions.  I’ve scoured SA and it looks like Omega 3 and magnesium are the only ones universally approved.  I can’t take Omega 3, for some reason it make me anxious.  Mag and melatonin help a lot.   

  

Hi rob sorry your suffering so much ,I'm in quite the hell lately myself ,your the first member ive seen post about wearing earplugs around the house ,I'm the same ,I constantly have either earphones plugged into my phone or the ear protection you'd see on building sites  on me ,I'm terrified of being near the nurtibullet without  protection ,its like a violent horrible fear of now ,the missus knows now not to use it while I'm around with protection  .

I can remember the day a year and a half ago when my nervous system snapped and couldn't bare the noise anymore .

Take care and we keep up the fight and find answers also .

[Littlegrandma]

1 hour ago, powerback said:

Hi rob sorry your suffering so much ,I'm in quite the hell lately myself ,your the first member ive seen post about wearing earplugs around the house ,I'm the same ,I constantly have either earphones plugged into my phone or the ear protection you'd see on building sites  on me ,I'm terrified of being near the nurtibullet without  protection ,its like a violent horrible fear of now ,the missus knows now not to use it while I'm around with protection  .

I can remember the day a year and a half ago when my nervous system snapped and couldn't bare the noise anymore .

Take care and we keep up the fight and find answers also .

Hi rob

sorry you’re suffering this hell. You’re top 3 symptoms are 3 of my worse, when I’m not in the middle of a taper. Then for 2-3 wks there are symptoms so horrific, indescribable. 

But it’s kinda funny PB you mention the nutribullet. When I use my ninja several times a day, the noise and feeling of it about sends me over the edge. One of the worse culprits tho, is the automated train horn 1 mi down the road. I can hear it from my house but if I’m driving and happen to get stuck at the gate, the sound is torture. 

 

I long for sunlight, but being in it even with dark glasses is very hard to take. It feels as though it’s burning holes through my eyes. 

 

Just wanted  to say I’m thinking of you guys and you’re not alone with these symptoms. But I know they won’t be forever.  Take care.  Lg

[JamesF]

Hello Rob, sorry for your suffering. 

I just want to tell you that your descriptions sound exactly like what I went through, so you're not alone. I also started as a teenager and was on for ~10 years in total. Our stories sound very similar. I believe we have such a tough time because we started young, and that taking SSRIs as the brain is developing changes its architecture and metabolism in a way that is not simple to reverse. 

 

You can read my thread with a description of my symptoms in the first post here: 

 

 

Quoting your post above here in normal text. My quick responses are in bold: 
 

 

Hello SA friends – As I sit here trying to work (from home), I’m fighting a nasty 3-month wave and wondering if I will ever get better.  I think I will, but like many of you who have been through it, it’s not very convincing when you literally feel like you’re dying.  As you’ll see in one of my previous posts,  I recently completely a two week program at a hospital in Boston to understand if there is anything that can help my situation.  And like many of you have said, there is no magic pill or cure-all...except time.  Lesson learned. 

I've been here, and similarly convinced I was dying. I felt utter desperation for solutions. I bought all kind of contraptions, medications. I paid for expensive consultants. I was sent to hospital via ambulance several times where they tried to find out what was wrong and suspected numerous things,  like adrenal crisis, which all led to dead ends. It's the long term effects of SSRIs. 

 

Anyway, I continually harp on my “Top 3” symptoms…derealization, nervous system dysfunction, and insomnia.  These are the symptoms, among dozens, that bring me to my knees.  One at a time would be somewhat tolerable but when all three are in full effect, I can barely function.

 

The derealization and insomnia equally suck but I’m really struggling with autonomic nervous system dysfunction.  I have extreme sensitivity to sound, light, and motion.  I need to wear ear plugs around the house and I feel like a vampire in sunlight.  I get acid-like waves of adrenaline if I try to relax or lay down, which prevents me from being able to do any kind of mindfulness or meditation.  I can’t drive and long rides make me car sick.  My body freezes in fear whenever I try to leave the house.  I’m unable to walk into a store because my body locks up in terror.  Stimulation of any kind sends me to pieces.  It’s not agoraphobia as I’m not consciously thinking about it or identifying a fear, it’s more of a visceral reaction from deep in my body.  Thanks autonomic dysfunction!    

All this sounds identical to what I have experienced. Acid-like waves of adrenaline is a good description. I had to hide away in the dark and avoid all stimulus. Even watching TV was way too much for me. Meditation as I used to do it was also too stimulating for me, as you mention. And yes it's not conscious fear, it's just the nervous system on high alert. Of course, explaining it doesn't help the suffering. I found this hard to describe to people too. And also hard to make them understand the suffering and intensity. 

I will say though, that a very low energy style of meditation is possible. If you are trying to summon up focus or maintain a certain posture or expend energy in any way, this is the wrong approach. Instead, there can be a very gentle surrendering/accepting of the sensations occurring in the body. I used to think internally "let it all come". In a sense, relaxing as the field of experiencing and not resisting anything that might arise. Likewise, you can internally observe if you are bracing, tensing, contracting in response to uncomfortable sensations - then gently soften these areas a little bit. You could imagine the sensations as a very upset small infant, who's in pain or crying, and you're very gently holding it within a towel, soothing it. In the same way, uncomfortable sensations can be gently held, softened around. The key is that rather than expending energy to enter some meditative state, instead, you're letting go of the energy invested in trying to resist what is already happening. 

I found I was doing a lot of "bracing" against uncomfortable sensations, and that this was taking up a lot of energy. I would also do things like pace around to try and distract myself. I had a realisation that I did not actually suffering less when I was tensing up or pacing around or distracting myself. Instead, it was about the same or more. So when I consciously did nothing to resist, when I softened, surrendered, did absolutely nothing - things were obviously still intense, but I was no longer expending energy on resisting what was happening. It's not a radical solution and route out of suffering, but for me trying to adopt this allowing, non-resisting approach seemed to help the exhaustion side of things. It's exhausting to keep on battling. I had to give up the war. 

 

So my questions for anyone reading this...

• Are my nervous system issues an extreme case or is this par for the course?  How do you cope with it?

I believe our experiences are relatively extreme compared to what most people go through. I was totally nonfunctional and stuck in a room. I believe this is due to starting young and long term usage. I also believe switching medications a few times or unsuccessful withdrawal depletes some energy or resiliency in the body. That is to say, we take some hard hits and have less of a buffer for future ones. 
 

• Do the sensitivities to sound, light, and motion tend to resolve slowly over time or do they tend to vanish in a window? 
   

Everything got worse for me over time until I reinstated, but that might not be your experience.

• My wife keeps telling me to push through the fear but I’m wondering if that will only prolong the healing of my nervous system.  In other words, if I push too hard, will my system push back even harder (making my symptoms worse)? 

I don't think pushing is the right approach. I tried this, I pushed and pushed. The result was that I kept on crashing. I think you can push through ordinary fear, situational fear, psychological fear. But this is not the same, it's a burned out nervous system. Pushing myself when in that state led to overstimulation - inevitable worsening of insomnia, more exhaustion and intensification of symptoms. I think the right approach is gentle - it does as much as it can at any particular moment but is sensitive to overdoing it. 

However, I will say that when you have been in this state for a long time as I was, it's easy to develop ordinary psychological fear about things you can do. For instance, I developed psychological fear about short walks or low intensity activity. Some component of this was justified, because exertion led to symptoms. But another component was the fear of expectation of what might happen. I think sensitivity must be developed that discriminates between what the body can actually do and fearful expectations. 
 

Any thoughts would be much appreciated.  Thanks. 

 

PS – I’m also open to any supplement suggestions.  I’ve scoured SA and it looks like Omega 3 and magnesium are the only ones universally approved.  I can’t take Omega 3, for some reason it make me anxious.  Mag and melatonin help a lot.   

 

I must have tried about 100 different supplements but did not find something that had a good effect. Epsom salt foot baths for magnesium seemed fairly benign. I think the most important thing is simply a very healthy diet with calorie excess. Plus extreme regularity of sleep times, eating times, medication times, etc. I think when you're hypersensitive and in a CNS burn out state, you want to decrease the amount of adaptive energy needed to adjust to any change. I think routine is the big daddy of kindness towards ones own body. 

 

Also...

Now for something a bit more controversial. I believe our histories are similar, and description of symptoms are similar too. I started as a teenager, was on 10~ years total, and had 2 major attempts at withdrawal. First time over around 6 months. The second time over around 18 months. 

The first time, I was off 6 months. The second time, 8 months. Both times I was off, things got progressively worse as time went on. All of my symptoms intensified and I became more and more desperate. I did not have a pattern of improvement to refer to. If you have improvement, maybe things are better in your situation. 

The only thing that helped me was reinstatement. I strongly believe the only way to remedy protracted withdrawal is to give the brain whatever it depended upon long term. I think in someone who started young, the brain has wired itself around a particular medication and possibly forgets how it would have otherwise functioned. For you, this seems to be lexapro(?)

I think it could be similar to the way bodybuilders taking steroids have a shut down of their natural testosterone. After a while, the cells producing testosterone actually start to die off, until there's a point where the innate hormone cannot be "switched on" again, and so the bodybuilders must take testosterone for life. Similarly, perhaps a degree of how we would have functioned/developed without the medication cannot rewire or switch back on. 

My controversial opinion is here that a lot of the language used on this forum leads to distorted perceptions of what may happen during reinstatement. When I first started reading threads here, I frequently came across terms like "kindling", "paradoxical reactions", "adverse reactions", and so on. These were in reference to members who had reinstated a medication for a few days and had an intensification of symptoms. The members framed the reaction as evidence that the medication would no longer work, or was possibly even injurious, then stopped it and suffered, believing that reinstating the drug was an option they had tried and ruled out. 

My experience was that reinstatement has worked twice. I was off for ~6 and ~9 months. Both times, I had an worsening of symptoms for several weeks before the balanced shifted to improvement. With appreciation for exceptions to this, I believe that generally, adverse reactions can happen because: 

 

1) the CNS is in a hypersensitive state, so any new substance (even if previously tolerated) will produce a reaction

2) there are onset effects to SSRIs when first taking them, so it seems likely this type of onset would also occur after a long interval off them.

3) people start too high and the nervous system has insufficient energy to adapt (whereas starting very low then gradually building up may have worked). 
 

If I had looked at the first few weeks of my reinstatement, and taken it as evidence of an "adverse reaction" or "paradoxical reaction" or that "the longer time you're off the drug, the less likely reinstatement is to work", and other phrases on this forum.... then I would have quit, carried on suffering, ruled it out as option and not known that it was possible to feel any better.  But after a few weeks to a month of worsening symptoms, things started to shift. This happened twice. I got out of hell twice after a long time off. I tried absolutely everything, including waiting it out, and nothing worked but reinstatement of a low dose.

Anyway don't regard this as a medical opinion or even representative of the opinion of this forum, because I think it's contrary to what most moderators here would tell you. But I felt compelled to share, because our histories and stories are so similar. 

Have you tried reinstatement of a low dose? What was your experience of it? What exactly did you do?
 

Edited February 13, 2018 by scallywag

[robcbar1]

Thank you James for this incredible insight.  If I'm understanding you correctly, you reinstated and have been slowly tapering since?  This March will mark 2 years off Lexapro (aside from several trials afterwards) so I'm hesitant to reinstate or try any other psyche meds.  I don't want to undo any progress I have made, as small as it may be.  How are you feeling?     

 

Edited October 17, 2018 by ChessieCat
removed quote

[Altostrata]

Hi, rob. What's going on with you and lamotrigine?

[robcbar1]

I’ve been taking Lamictal for 35 days @ 5mg (started at 2.5mg) and can’t figure out if it’s helping.  I don’t know whether it’s a coincidence but my derealization and tinnitus seem worse since starting.  Also, my mood is less stable which is the opposite of what the drug should do, no?  I did however have a good run of sleep and very little anxiety for a few weeks which may have been my nervous system settling down.  I cut my dose to 2.5mg late last week and it set me back big time.  The past three nights have been torture with akathisia, agitation, mood lability, terror, and insomnia.  This is exactly what landed me in the hospital last month so I don’t know what to do.               

[scallywag]

rob - in the lamictal topic you asked about how to taper gradually off it. A reduction of 50%, going from 5 mg to 2.5 mg, when you're having difficulty with symptoms is very likely to worsen them.  I'm sorry that you're going through this right now.

 

You say you made the change late last week. Please post the exact date you decreased and also add that to your signature.

 

Have you been taking notes of your symptoms? If not, please keep notes on paper of your symptoms and the times of your dose(s). This post has a useful format for a daily log:

Take notes of doses and symptoms.

 

I would encourage you to consider increasing your dose back to 5 mg for 2-3 weeks. During that stabilization period, we can assist you by explaining how to do a gradual taper by making liquid at home. After sufficient time back at the "old" dose, you could start a 10% taper. Please let us know your thoughts and questions about returning to 5 mg.

[robcbar1]

20 hours ago, scallywag said:

rob - in the lamictal topic you asked about how to taper gradually off it. A reduction of 50%, going from 5 mg to 2.5 mg, when you're having difficulty with symptoms is very likely to worsen them.  I'm sorry that you're going through this right now.

 

You say you made the change late last week. Please post the exact date you decreased and also add that to your signature.

 

Have you been taking notes of your symptoms? If not, please keep notes on paper of your symptoms and the times of your dose(s). This post has a useful format for a daily log:

Take notes of doses and symptoms.

 

I would encourage you to consider increasing your dose back to 5 mg for 2-3 weeks. During that stabilization period, we can assist you by explaining how to do a gradual taper by making liquid at home. After sufficient time back at the "old" dose, you could start a 10% taper. Please let us know your thoughts and questions about returning to 5 mg.

Thanks Scally - I reduced to 2.5mg for two days last week and had severe rebound anxiety and akathesia.  I've since gone back to the 5mg dose for the past 4 days and praying that I stabilize.  I can't tell if the way I am feeling if part of a deep WD wave or from the Lamictal.  I'm so confused.   

[robcbar1]

On ‎02‎/‎13‎/‎2018 at 12:06 AM, Altostrata said:

Hi, rob. What's going on with you and lamotrigine?

Hi Alto - As I mentioned in my last post, I'm not really sure.  My derealization and tinnitus has been worse lately and I just don't feel right.  I cut the Lam dose in half (2.5mg) last week for two days to see if it would help.  Big mistake.  Huge rebound of extreme anxiety which led to akathesia (or something like it).  I've since gone back to the regular dose (5mg) and still feeling awful.  Severe derealization, tinnitus, agitation, anxiety, and low mood.  Since those are all WD symptoms, I've not sure if they are being exacerbated by the Lamictal.  I managed to get a few hours of sleep last night which is a win.    

 

 

[JamesF]

On 2/6/2018 at 7:03 PM, robcbar1 said:

Thank you James for this incredible insight.  If I'm understanding you correctly, you reinstated and have been slowly tapering since?  This March will mark 2 years off Lexapro (aside from several trials afterwards) so I'm hesitant to reinstate or try any other psyche meds.  I don't want to undo any progress I have made, as small as it may be.  How are you feeling?     

I reinstated 5mg, held then gradually upped the dose until I got more relief. I plan to hold indefinitely while I stabilize and recover my life and health (I was confined to a room for about 4 months in deep WD). Some years in the future I'll reduce incredibly slowly, but I've accepted now that I may well have started too young to feasibly reduce it to 0, so in future I just want to be on the lowest effective dose.

 

And quite frankly, life on the SSRIs has been better than any time in withdrawal, so what the heck. They're reportedly unhealthy long term, but I would say the stress and trauma of intense withdrawals are far more injurious to physical and emotional health. 

 

 

My first concern for you would be that you add medications to try and indirectly treat the WD symptoms (e.g. what has happened with Lamictal). 

This happened to me several times during my attempts at withdrawal. I was prescribed benzos and nonbenzos. Specifically, zopiclone and valium. I rationalised that this was treating symptoms while I recovered from the SSRIs in parallel. 

This was a bad idea, since the introduction of a new drug with a hypsensitive nervous system, fatigue, etc - led to fast dependency, tolerance and withdrawals comparable to the SSRI itself. Since they were different drugs to SSRIs too, they didn't even treat the symptoms much, while adding new side effects. It's taken me months to wean off valium now despite reinstating sertraline. 

 

 

 

My second concern for you would be your emotional investment in the time spent enduring withdrawal.

 

The reason I wanted to try something other than the SSRI during withdrawal was simply the large time investment in tapering, all those days measuring, all those extreme panic attacks I rode out in the hope I would heal, all those times I said no to friends because I considered withdrawal symptoms a temporary thing to ride out and declining the invites a necessary evil. Just, all the suffering I had endured during the discontinuation of 8 + months. I considered this a sacrifice, an investment, and I deeply wanted the suffering to be for a purpose. 

Unfortunately, this emotional investment and bias led me to take valium, which then led to more complications and suffering. It was complicated in the sense that I was no longer able to be precise about the cause of my symptoms - was it SSRI withdrawal, or valium side effects, or valium withdrawal or valium tolerance? Who knows?

It was suffering because it led to worsening fatigue, rebound anxiety, tolerance and a whole new withdrawal to contend with. 

 

All I know was, the new drug did not help alleviate withdrawal because it had a different psychopharmacology.

 

 

Going back, I think I would have reinstated earlier and just come to acceptance that time invested or time suffered does not or should not determine the right course of action when it comes to withdrawal or reinstatement. I think it's a dangerous game, where someone can make himself more and more unwell, just in order to feel that all the time spent unwell had been worthwhile or justified. 

 

So I reinstated, I gave my brain what it had relied upon for nearly a decade, and slowly but surely I got better. I'm now perhaps 60% better a few months after reinstatement and the trend is upward. I sleep 6 hours in a row most nights now. During the peak of my withdrawal, I was sleeping so little and so symptomatic that I could not leave my room or think straight. I had the same or similar symptoms to your description. All improved. So that's my success story.

I suppose I'm someone with a slightly pessimistic story - in the sense that I got worse and did not heal despite tapering very slowly and waiting for 9 months or so. And this is an issue with these forums, the people who recover don't often post or frequent these places. While the ones that continue to struggle do. So I just wanted to write some thoughts, and not steer you any particular direction. If you feel things are improving and you're functional, I wish you the best staying off these drugs.

 

But if you want to follow a similar path to me, I want to say that my previous attitudes and biases around reinstatement were both wrong and led to more complications in the introduction of new drugs and extended suffering. When I reinstated, I started healing. 

All the best and take care, 

Jay

[JamesF]

Just to say, I also messaged you some information and audios relating to meditation. Hope they help and take care. 

[robcbar1]

1 hour ago, JamesF said:

I reinstated 5mg, held then gradually upped the dose until I got more relief. I plan to hold indefinitely while I stabilize and recover my life and health (I was confined to a room for about 4 months in deep WD). Some years in the future I'll reduce incredibly slowly, but I've accepted now that I may well have started too young to feasibly reduce it to 0, so in future I just want to be on the lowest effective dose.

 

And quite frankly, life on the SSRIs has been better than any time in withdrawal, so what the heck. They're reportedly unhealthy long term, but I would say the stress and trauma of intense withdrawals are far more injurious to physical and emotional health. 

 

 

My first concern for you would be that you add medications to try and indirectly treat the WD symptoms (e.g. what has happened with Lamictal). 

This happened to me several times during my attempts at withdrawal. I was prescribed benzos and nonbenzos. Specifically, zopiclone and valium. I rationalised that this was treating symptoms while I recovered from the SSRIs in parallel. 

This was a bad idea, since the introduction of a new drug with a hypsensitive nervous system, fatigue, etc - led to fast dependency, tolerance and withdrawals comparable to the SSRI itself. Since they were different drugs to SSRIs too, they didn't even treat the symptoms much, while adding new side effects. It's taken me months to wean off valium now despite reinstating sertraline. 

 

 

 

My second concern for you would be your emotional investment in the time spent enduring withdrawal.

 

The reason I wanted to try something other than the SSRI during withdrawal was simply the large time investment in tapering, all those days measuring, all those extreme panic attacks I rode out in the hope I would heal, all those times I said no to friends because I considered withdrawal symptoms a temporary thing to ride out and declining the invites a necessary evil. Just, all the suffering I had endured during the discontinuation of 8 + months. I considered this a sacrifice, an investment, and I deeply wanted the suffering to be for a purpose. 

Unfortunately, this emotional investment and bias led me to take valium, which then led to more complications and suffering. It was complicated in the sense that I was no longer able to be precise about the cause of my symptoms - was it SSRI withdrawal, or valium side effects, or valium withdrawal or valium tolerance? Who knows?

It was suffering because it led to worsening fatigue, rebound anxiety, tolerance and a whole new withdrawal to contend with. 

 

All I know was, the new drug did not help alleviate withdrawal because it had a different psychopharmacology.

 

 

Going back, I think I would have reinstated earlier and just come to acceptance that time invested or time suffered does not or should not determine the right course of action when it comes to withdrawal or reinstatement. I think it's a dangerous game, where someone can make himself more and more unwell, just in order to feel that all the time spent unwell had been worthwhile or justified. 

 

So I reinstated, I gave my brain what it had relied upon for nearly a decade, and slowly but surely I got better. I'm now perhaps 60% better a few months after reinstatement and the trend is upward. I sleep 6 hours in a row most nights now. During the peak of my withdrawal, I was sleeping so little and so symptomatic that I could not leave my room or think straight. I had the same or similar symptoms to your description. All improved. So that's my success story.

I suppose I'm someone with a slightly pessimistic story - in the sense that I got worse and did not heal despite tapering very slowly and waiting for 9 months or so. And this is an issue with these forums, the people who recover don't often post or frequent these places. While the ones that continue to struggle do. So I just wanted to write some thoughts, and not steer you any particular direction. If you feel things are improving and you're functional, I wish you the best staying off these drugs.

 

But if you want to follow a similar path to me, I want to say that my previous attitudes and biases around reinstatement were both wrong and led to more complications in the introduction of new drugs and extended suffering. When I reinstated, I started healing. 

All the best and take care, 

Jay

This is very interesting.  My situation is a little different in that I'm coming up on 2 yrs. in March since quitting Lexapro.  I've muddied the waters since then by trialing Zoloft and Celexa so I'm not sure if my brain would still "take" to Lexapro.  Furthermore, I was also in tolerance withdrawal (anxiety, panic, low mood) at the end of my Lexapro journey which is why I stopped in the first place.  Like you, I was and still am OK if I need to take an SSRI to function but nothing (and I mean nothing) has been remotely effective.  Everything I try, even non SSRIs, has made me ill.  So I'm in a really tough spot and I'm not sure If I have a choice besides suffering horribly. 

[Altostrata]

rob, exactly what times of day do you take your drugs, at what dosages? Do you have any symptoms that follow a daily pattern, if so, what are they and when do you have them?

 

Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Need times of day for all.

[robcbar1]

18 hours ago, Altostrata said:

rob, exactly what times of day do you take your drugs, at what dosages? Do you have any symptoms that follow a daily pattern, if so, what are they and when do you have them?

 

Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Need times of day for all.

How’s this? 

 

6 am – Wake up after 3-4 hrs. of broken sleep, usually shaking with anxiety

Tinnitus is strongest when I first wake up, waxes and wanes throughout the day

7 am – Take 5mg chewable Lamictal

9 am – Eat breakfast (sometimes I need to make myself eat)

Derealization builds in morning, worse at mid-day and early evening  

12-1 pm – Eat lunch

Agitation/akathisia usually kick in about this time and continues on an off throughout the day 

6 pm – Eat Dinner (sometimes I need to make myself eat)

9 pm  – 1 tsp Natural Calm magnesium drink

Tinnitus, derealization, and agitation seem a little better around this time 

10 pm – 1.25mg melatonin for sleep

11 pm – Usually fall asleep but wake up almost exactly one hour later, toss/turn until I fall asleep again for another hour or two. 

 

***Sensitivity to sound, light, motion, and pure fear over non-existent threats are ever present 24/7.    

[robcbar1]

19 hours ago, Altostrata said:

rob, exactly what times of day do you take your drugs, at what dosages? Do you have any symptoms that follow a daily pattern, if so, what are they and when do you have them?

 

Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Need times of day for all.

Alto, from what you know about withdrawal and the nervous system, is it possible that Lamictal could be setting me back in my recovery?  I wouldn’t think so, but I feel terrible right now.  I feel like it may have helped when I started a month ago, but I’m not sure about now.  I don’t know if this is just a bad wave or the Lamictal went paradoxical.  Aside from increased anxiety and agitation, my mood is very low.  It’s getting so bad, my wife may force me to go to the hospital, and I can't handle anymore drugs or setbacks in my progress.  Do you know of any resources in the Northeast that can help me sort this out?  Or even resources out West by you who can provide help via phone (Shipko?).  I am willing to do anything to get better.           

[ChessieCat]

On 04/10/2011 at 9:21 AM, Altostrata said:

For some people with a different variety of withdrawal syndrome, taking lamotrigine may not be the right approach.

 

Here are a few tips about using Lamictal that I learned from my doctor. I'm not an expert and I don't know how this would be applied to any particular person:

 

- Dosages are individual, need to be started at very low amounts, and slowly titrated up.

 

- He starts everyone out at 2mg or less. Because I was so hypersensitive, he started me on .5mg. He likes to give a dosage a try for 4 days to see how it works, get beyond initial wooziness, etc.

 

- The trick is to find exactly the right "sweet spot" for your nervous system. At one time, I started at .5mg, went up to 2.5mg, backed down again to 1mg, eventually settling at 1.07mg. In a second phase, I titrated up to 5.4mg. (I am currently tapering off.) Now, someone else's optimal dose may be 24.3mg or 38.2mg or 10.1mg.

 

- For someone with withdrawal insomnia, the "sweet spot" is a dosage at which sleep is increasing towards normal and side effects are negligible.

 

- Lamictal does increase GABA somewhat while decreasing glutamatergic transmission. However, the GABA system needs glutamate to make GABA so too much Lamictal will have a paradoxical effect -- you don't want to go too high.

 

- Signs that you're taking too much Lamictal: Queasiness or headache (or both), sleeplessness, agitation.

 

- Initial side effects can be wooziness, grogginess, sleepiness, lack of energy.

 

- To firmly establish the newly revived healthy brain patterns, expect to stay on the Lamictal for about a year. He has had patients who went off the medication and were fine, they didn't need to take it anymore.

 

- In severe withdrawal insomnia, deep sleep is the first to go and the last to come back. It's important because human growth hormone is secreted in deep sleep and it is physically and mentally restorative. When deep sleep returns, emotional numbing will lift.

 

[Altostrata]

On 2/14/2018 at 3:46 PM, Altostrata said:

rob, exactly what times of day do you take your drugs, at what dosages? Do you have any symptoms that follow a daily pattern, if so, what are they and when do you have them?

 

Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Need times of day for all.

 

rob, I really need the answer to these questions to give you any kind of assessment.

 

Dr. Shipko does not treat withdrawal syndrome.

[robcbar1]

51 minutes ago, Altostrata said:

 

rob, I really need the answer to these questions to give you any kind of assessment.

 

Dr. Shipko does not treat withdrawal syndrome.

Were my answers above not adequate?  I actually spoke to Dr. Shipko today.  He is a good man and speaks highly of you.      

[Altostrata]

I speak highly of Dr. Shipko. Did he have recommendations for your treatment?

 

Sorry, I missed your notes in http://survivingantidepressants.org/topic/16285-robcbar1-suffering-after-20-years-of-ssri/?do=findComment&comment=333907

 

It looks to me like the lamotrigine might be causing the derealization, etc. This indicates 5mg might be too much for you in the morning.

 

If it was aggravating the tinnitus, tinnitus would be worse after you take it, not earlier. It looks like your symptoms are reduced when the lamotrigine is partly worn off.

 

Therefore, I deduce a lower dosage of lamotrigine might serve you better. I might take 2.5mg at 7 a.m., move the other 2.5mg a couple of hours later progressively over several days until you're taking it at night.

 

Please keep careful notes as you move the split doses, how your symptoms change (I hope they do) will be very important.

 

[samanthaelizabeth]

On 1/23/2018 at 9:57 AM, robcbar1 said:

Paradoxical means the medication does the opposite of what it’s intended to do.  Ex. Xanax causing anxiety/panic instead of chilling you out.  

Hi Rob - have been on Mirt twice before and successfully tapered off with no problems- I used the soltabs to taper.  This time, for me it might be harder as I have been taking it for 6 years.

[robcbar1]

34 minutes ago, Altostrata said:

I speak highly of Dr. Shipko. Did he have recommendations for your treatment?

 

Sorry, I missed your notes in http://survivingantidepressants.org/topic/16285-robcbar1-suffering-after-20-years-of-ssri/?do=findComment&comment=333907

 

It looks to me like the lamotrigine might be causing the derealization, etc. This indicates 5mg might be too much for you in the morning.

 

If it was aggravating the tinnitus, tinnitus would be worse after you take it, not earlier. It looks like your symptoms are reduced when the lamotrigine is partly worn off.

 

Therefore, I deduce a lower dosage of lamotrigine might serve you better. I might take 2.5mg at 7 a.m., move the other 2.5mg a couple of hours later progressively over several days until you're taking it at night.

 

Please keep careful notes as you move the split doses, how your symptoms change (I hope they do) will be very important.

 

Thank you for replying!!!

 

Dr. Shipko basically told me to stick with the coping strategies on SA.  Since I can’t take benzos, his only other thought was Lamictal.  I may work with him via phone to help explain protracted withdrawal to my loved ones who are fed up with me.  “Tough love” definitely isn’t appropriate and it’s making me feel worse about the situation and myself.  

 

I agree with your assessment on the Lamictal.  So I’m clear, I’m not reducing the daily dose, just splitting it, correct?  My fear with splitting into two doses is that it could create a more steady state of symptoms vs. the brief windows I’ve been getting at night.  I wish there was an easy way to go back to 2.5mg daily without the horrible rebound that I felt last week when I tried it.  The power of this drug scares me.  How in God’s name can people take 400mg of this stuff???

[Altostrata]

Correct, split the dose. We'll see what it does as you gradually move the second dose later in the day. You must keep good notes.

 

If we find you're getting adverse effects from lamotrigine, we will figure out a way to reduce it while minimizing rebound.

[robcbar1]

38 minutes ago, samanthaelizabeth said:

Hi Rob - have been on Mirt twice before and successfully tapered off with no problems- I used the soltabs to taper.  This time, for me it might be harder as I have been taking it for 6 years.

My trial at 7.5mg only lasted 2 weeks.  The first few nights were ok but then the sleep wore off and it became too activating for me. I rolled the dice and CT’d because I wasn’t on it very long.  I’m not sure if it exacerbated my protracted WD because I felt horrible before, during, and after the trial.  

[robcbar1]

Just now, Altostrata said:

Correct, split the dose. We'll see what it does as you gradually move the second dose later in the day. You must keep good notes.

 

If we find you're getting adverse effects from lamotrigine, we will figure out a way to reduce it while minimizing rebound.

You’re too good to me Alto.  Thank you!!

[samanthaelizabeth]

Well i'm rooting for you!