JamesF: reinstating and stabilizing sertraline after 2 withdrawal nightmares

[JamesF]

Toxic sleep is where you wake up feeling even worse than when you went to sleep.

 

Common symptoms include an intensification of anxiety, fatigue, jitteryness, weakness, disorientation, vertigo, etc, upon waking up

 

For me, naps are impossible and toxic sleep still happens very often. It seems to have something to do with the waking and falling asleep mechanism being disrupted. Some posters on other forums have theorised it has something to do with cortisol, but I haven't seen evidence for any theory yet... but more important than theory is improving it

 

Has anyone found a way to improve this or stop it happening? 

 

During withdrawal I developed a dread of sleeping due to waking up feeling worse - not good - so would really like to see more improvement here.

 

Jay

[ChessieCat]

Here are SA's topics:

 

Sleep Hypnosis, Guided Meditations, Calming Videos

Sleep problems - that awful withdrawal insomnia

[kesh]

Hi. In case you weren't aware, one of your symptoms has a name: akathisia. I get it snd it's hell.

[JamesF]

Thank you @RachelSusan, @kesh and @ChessieCat

And yes I think it's "akathisia", intense inner restlessness. It's something I've struggled with on the drugs as well as off them. It really comes to attention when you need to sit still and do some mental work, and everything in your body is resisting that stillness.

I was in a pretty good routine until a recent diazepam cut disrupted my sleep. Now it's a bit upside down and I've had to cancel various appointments due to exhaustion. 

Current goal is simply to reset my sleep pattern to normal and develop healthier attitudes around it, rather than dreading it or fearing not sleeping.



Lots of friends have reached out to me and tried to arrange things, but it's been a long time since I was able to say yes. I'm very grateful for their kindness, but also sense there is limited patience for a sick person who has to cancel things and usually doesn't answer calls. I'm sure it comes across as being disinterested, or unreliable. There's also the sense that friends would think it psychological, psychosomatic, self-induced, etc, due lack of experience with this, so I haven't explained much to anyone but a few friends really.

 

I just say I have chronic fatigue - but that doesn't really touch on the 95% of suffering during withdrawal, all the disorientating symptoms and the ones that are hard to describe like parasthesias. Then of course, there's also the negative judgements around psychiatric medications, the taboo. I don't like participating in this silence around it, but equally it's just too much hassle to make others understand when they have beliefs or lack of experience.


I think there's also some suffering in wanting to be perfectly understood or empathised with. And that this need can lead to a feeling of isolation and frustration with others for not appreciating exactly what you're going through. I want to let go of this need to be understood. How many of us try to have compassion towards others to the same degree we would like compassion ourselves? I certainly think a lot of the volunteers here who tirelessly check in on people here fit that description

I think the right attitude is something like - we will never be perfectly understood or appreciated by another, so we can develop acceptance for that too. Equally, we can have gratitude to our own suffering and experiences because it allows us to have a deep compassion with others and a perspective on how truly precious life is.

 

The suffering from any physical illness - be it SSRI withdrawal, or more serious/terminal illnesses, is always mental. Symptoms cause anxiety. Pain causes anxiety. Not knowing if you will recover causes anxiety. We have a direct window into all of this, so our scope of compassion extends far beyond this small corner of the internet. We know what it is like to be ill, and we know how we would have wanted to be supported and empathised with when we were. And even if we didn't get exactly the support we needed, that's something we have a unique ability to return to others to reduce their suffering

Just some thoughts

Jay





 

[DaveB]

On 1/22/2018 at 12:48 AM, JamesF said:

 

 

Overall I'm trying hard to remember the symptoms I used to have which have now faded a lot.

 

- There were many weeks where I could not leave the house, now I am able to walk 15 mins most days.

- I used to wake up with extreme weakness and internal trembling, this has largely stopped. Just some twitching left.

-Tinnitus has reduced significantly

- I used to have to eat immediately upon getting up, otherwise I would feel severely ill. This has improved and now I can sometimes last an hour or two.

-I used to feel extremely intolerant to light, to noise, heat, cold, emotional stressors of any kind. Now I don't have much of a problem with temperature regulation. Noise is overwhelming but I am no longer confined to my room. Light is generally ok. Emotional stressors, I can now watch a bit of TV without much issue if I have slept - before, it would be way too stimulating and scenes with negative emotions would trigger profound crashes identical to physical exertion.

- I completely lost my sense of being goal directed (in a daze of suffering), now I am able to work with my mind quite a few hours a day when I've slept.

- During my worst crashes I used to feel absolutely desperate and fearful. It was easy to be convinced I was dying, my body seemed to be failing and hypersensitive to absolutely everything. Rest was impossible. I ended up in emergency several times. I desperately  contacted various ddoctors. I had no idea how to relieve suffering. Now, crashes can still happen but I seem to return to baseline more quickly and there is less fear during them.

- My physical condition was causing me to obsessively monitor and research my own health. I'd measure heart rate, blood sugar, temperature. I continually felt very slowed down, cold, like I was grinding to a halt. I'd try to find small ways to improve any and every aspect of it. Feeling so ill made me totally obsessive about trying to fix the problem. Or at least, understand the problem.... Now, relief of physical symptoms has caused me to stop measuring and monitoring and just trust in the process of getting better.

-I seem to be able to handle low potency multivitamins now. Supermarket brands. This is really good, because I was becoming deficient in a few things from being housebound and hypersensitive to substances. I used to have profound stress reactions and anxiety when taking these same multivitamins. I think this is probably a good sign of stabilisation.

-Feeling more hopeful that there is a future where I have more freedom to do what I want. For a long time I felt totally imprisoned by my condition and uncertain if relief would ever come. Now, there is a great distance to cover to get back to being functional but I can see that I'm heading in the right direction.

 

--------

 

Had 3 days of relatively good sleep (4.5+h stretches). Unfortunately a bit of a crash today where I'm struggling to sleep due to agitation and twitching. Since im awake I'm posting  this. I think might be due to diazepam  withdrawal, or just a natural wave of overall recovery. 

 

I've been taking diazepam twice a day in half doses and this seems smoother. Before, I'd notice a distinct fatigue / nauseous feeling soon after my dose. Likewise, I'd notice that it would be hard to sleep either too soon or too long after my daily dose. Twice a day seems to improve all this and reduce the peaks and valleys.

 

Jay

 

Looks like you are making great progress, good job! Stay the course and you will pull out of it. I am a fellow Zoloft WD sufferer trying to stabilize now on Paxil (long story). Just wanted to stop by to let you know I am rooting for you!

[RachelSusan]

Jay,

Your post really resonated with me. Thank you for articulating so beautifully what I could not put into words. It made me want to weep but also rejoice to be reminded that people here understand. Thank you so much.

Rachel

[JamesF]

Will respond to above when feeling a better.

 

Feeling truly horrific today. Went to bed last night and woke up after half an hour feeling horrific. The longer that first stretch of sleep, the better for me. The shorter it is, the more "toxic" the sleep is and the longer that toxic feeling lasts throughout the day. I'm at about 95% as bad as I've ever been today. Not sure why. I haven't been here in months. 

 

I feel totally rancid. Jittery, depersonalised, deep ache behind my eyes, impending doom. Just going to have to survive until tonight when hopefully a better sleep "resets" it. I feel like a scared animal again.

 

It feels frustrating that small triggers like a bad sleep can thrust me into this state still. Although generally I seem to come out of the bad states more quickly. 

 

Anyway enough doom and gloom. Just wanted to document a particularly bad day

 

[DaveB]

On 1/31/2018 at 6:10 AM, JamesF said:

Will respond to above when feeling a better.

 

Feeling truly horrific today. Went to bed last night and woke up after half an hour feeling horrific. The longer that first stretch of sleep, the better for me. The shorter it is, the more "toxic" the sleep is and the longer that toxic feeling lasts throughout the day. I'm at about 95% as bad as I've ever been today. Not sure why. I haven't been here in months. 

 

I feel totally rancid. Jittery, depersonalised, deep ache behind my eyes, impending doom. Just going to have to survive until tonight when hopefully a better sleep "resets" it. I feel like a scared animal again.

 

It feels frustrating that small triggers like a bad sleep can thrust me into this state still. Although generally I seem to come out of the bad states more quickly. 

 

Anyway enough doom and gloom. Just wanted to document a particularly bad day

 

 

Sometimes it is good for both you the poster to get these frustrations out, as well as readers like me to see that other people have real crap days too, even though they also reinstated and are holding. Sometimes I see the drug pamphlets saying 4-8 weeks and you will be better and wonder if I am the only one who doesn't get back to normal in the recommended time-frame. So I guess what I am trying to say is sorry you had a really bad day, but thank you for sharing as it gives some perspective for others like me.

[JamesF]

2 hours ago, DaveB said:

 

Sometimes it is good for both you the poster to get these frustrations out, as well as readers like me to see that other people have real crap days too, even though they also reinstated and are holding. Sometimes I see the drug pamphlets saying 4-8 weeks and you will be better and wonder if I am the only one who doesn't get back to normal in the recommended time-frame. So I guess what I am trying to say is sorry you had a really bad day, but thank you for sharing as it gives some perspective for others like me.

Hi Dave, completely agree. I've had to force myself to get on the computer sometimes, because at my worst it's too much to look at a screen and think and type. But I've done it both to document this reinstatement for others, and so I can read and remember it. 

Months in severe withdrawal really do have a funny way of disappearing into some kind of memory black hole - so it will help to read over all this before making any decisions in future. 

When I was describing my experience to someone in real life, I mentioned that that my unwell self doesn't know my well self, or vice versa. This meant in the sense that when healthy and everything is fine, we literally don't have the ability to remember (or re-experience) such a state of suffering. And likewise, in the depths of withdrawal, we can't recall what it was like to be healthy and functional. 

This leads to talking about withdrawal as if it were a strange distant dream, and somehow, not quite your experience, even though you lived it for months. I believe this may be similar to patients with PTSD, where a hallmark symptom is that they talk about the traumatic event without emotion in their voice. Possibly because it is too painful for the mind to re-experience fully. But also because you need to be in a similar physiological/psychological state to be able to re-experience it. 

In the sense that it is hard to communicate, it is also hard to remember fully. I definitely want to remember never to return to such a dark place of suffering. 

 

 

On the subject of reinstatement. I drew a quick chart to show my experience. It mirrors the degree of symptoms/suffering over time after I reinstated. It's not exact but it's pretty close: 

As you can see,  things got worse  before getting better. 

Secondly, despite a trend of improvement there have been occasional spikes of intense symptoms reminiscent of my worst months.

These spikes have generally been triggered by a bad nights sleep, exerting myself too much, or an "impact" of some kind e.g. doing too much in a day or eating some food that's out of date. 

The difference lately has been that I have more resiliency - I'm much faster to bounce back to baseline after a particularly bad day. Before, I'd take a "hit" of some kind and be stuck in that state for weeks, whereas now I might be there a day or two. 




As another general point, I want to mention something I noticed when signing up and first reading this forum. This is that the language often here seems to colour members interpretations of what may happen during reinstatement. Lots of terms like "adverse reaction", or "kindling reaction", or "paradoxical reaction" and so on are frequently used. It would have been very very easy to interpret the intensification of symptoms I experienced during reinstatement as an "adverse reaction". And if I had done so, I would have abruptly stopped and consequently not known that I would have improved. 

I believe this language exists in part due to the principle of harm reduction that is advocated here. This is absolutely a good thing. 

On the other hand, I also believe that on message boards such as these, it's natural for interpretations to be biased and for this to be reflected in language. This is not a good thing. 

 

I think there are many reasons for this, but it's primarily because most people are here because they are suffering, because they want to reduce their suffering, and because they want to reduce the suffering of others. Unfortunately, with so many suffering people in one place, experiences and advice tends to be on the negative side. That is to say, the people that heal or reinstate successfully aren't incentivized to sign up here or to continue posting. Whereas the ones that continue to suffer are. 

 

Likewise, those who are likely to spend a lot of time here have probably seen the worst in their lives, and the worst that can happen in the lives of others. Reading endless threads and personal accounts of suffering colours ones interpretations and the things they are likely to post and advise. There's an incentive to forewarn another member about something bad happening before it does. This is done out of concern, to stop them living the same suffering.  And they may well be right and may help the member reduce their suffering. But usually the advice we give is heavily coloured by our own experience of the worst case scenarios that compelled us to post here, rather than of all possible experiences.

 

Sometimes there's the potential for improvement too. And sometimes things can get worse before they get better. 

I believe reinstatement is one area where there's a lot of confusion in the interpretation of symptoms, and the language that colours that interpretation. 

From my reading and understanding, my opinion is that intensification of symptoms during reinstatement is generally down to:

 

1) Normal onset effects of an SSRI, which happen during first usage or during reinstatement. It takes a while for bloodstream levels to result in metabolic, structural and functional changes in the brain. 
2) The introduction of a psychoactive substance to a hypersensitive and fatigued CNS. It could be any substance, not just the SSRI. I think a metaphor would be something like the body reacting to anything like an intruder, until it has enough of it to realise that it's helpful rather than hurtful.

3) Starting at too high of a dosage, which may represent too large of an impact for the hypersensitive/fatigued CNS to adapt to. 

 

I also think that it's a pretty good rule of thumb that it will probably take about as long to stabilize as the time one spends worsening in withdrawal. That seems to mirror my experience so far. 

 

In this regard, I think there's also a misinterpretation that reinstatement should immediately alleviate symptoms. Perhaps it might if you are a few weeks out and there have been no physiological changes in the brain. But after a long time out, say 3 - 12+ months, I think it would definitely take a while.

 

 

SSRIs produce a whole host of changes in the brain. In modern neuroscience, the theory that they simply increase serotonin is very outdated and has been disproven as a direct cause of why they work. After reaching a constant blood concentration, SSRIs have downstream effects of many  neural structures, metabolic and functional areas of the brain. It extends way beyond serotonin. Some of these changes can be mapped and take months. 

 

 

I also think it should take even longer if the person has experienced quite intense withdrawals, since the body may be fatigued and have a limited capacity to produce these changes. 



Also to update this log.... Symptoms are generally improving, with small waves here and there. I'm sleeping an average of 5-6 hours in a row now. This is phenomenal compared to the 1.5 hours max of fragmented, shallow, toxic sleep that was my daily reality before christmas.

I generally wake up with a feeling of slight restlessness, but nothing close to the sheer extreme shotgun hole in the chest feeling of emptiness and extreme anxiety that was my everyday experience a few months ago.  I'd say on average, I'm 50% better. The remaining 50% is still very dysfunctional and limited, but days are no longer 24 hour endurance marathons of extreme suffering. I can get through them. 

Jay

[JamesF]

On 15/02/2018 at 9:09 PM, Longestroadhome said:

I just wanted to say that I love the way you write. I agree wholeheartedly with what you said. From my experience reading this Site most people who choose to reinstate seem to do well. I understand this is not always the case. If withdrawal symptoms are making life unbearable then choices need to be made. I have seen many people in extreme distress just vanish from the site and I have been left wondering if they were too scared to admit that they wanted to reinstate. 

 

Thank you, I appreciate it. 

 

Yes definitely, I feel a lot of suffering members rule out reinstatement for many reasons. For example; 

 

- Interpreting short term worsening of symptoms as a sign of an "adverse" or "paradoxical" reaction, when it's natural to have onset symptoms. Then abruptly ruling out the idea that it might stabilise or improve.

 

- Starting reinstatement too high, having a bad experience, then ruling it out as a whole when low dose may have been an option

 

- Not reinstating for fear of what may happen, partially due to the many bad accounts here and the general hypersensitivity to all substances during withdrawal

 

- Emotional investment in all the time spent suffering and sacrificing during withdrawal. I think this is an incredibly powerful reason many don't reinstate. It was my major reason. If reinstating, the suffering may seem to have been for nothing. I really struggled letting go of this. But 1) time spent suffering should never justify continuing to do so 2) when choosing to discontinue, we don't have complete knowledge of what may happen over the following months/years, so shouldn't blame ourselves and can only know the wisdom of our choices  in hindsight 3) reinstating to a low dose is still progress 4) The experience gives valuable wisdom for the next attempt

 

- A simple and irrational dislike of being on the medication. Even though life on it can be happier, more functional, and so on, there's a significant power to get off it. Why? For what? There are some rational reasons. But usually the short or long term fears or health risks are greatly exceeded by suffering and chronic stress in withdrawal. For instance, I imagined I would recover a greater depth of emotion/feeling after withdrawing. It was the opposite, withdrawal itself was so traumatic that it shut down my ability to feel anything positive - something that had been relatively intact while on the drugs. I think it's really easy to idealise some fictitious self that will emerge off the medication, but how much evidence do we have for it, really? Or are we simply using it as a device to rationalise our suffering?

 

- A multitude of other reasons, including the downsides of online communities. E.g. the community social pressure of the forum to encourage you to wait it out and not go back on. Like a band of withdrawers at sea in a ship, keep rowing, we're all in this together, we'll make it... even though everyone has a different psychiatric history, a different set of symptoms and a different timeline of healing (some may even have some irreversible damage). So these pressures can sometimes encourage us to ignore our own best choices.

 

 

 

_________

 

I had a few bad nights of insomnia this week, which disrupted my sleep pattern. I'm currently feeling a bit symptomatic which I think is down to poor quality sleep this week. My goal is to get back into a solid sleep cycle and stick to it no matter what. 

 

Overall, I'm sleeping better, and having much less anxiety than I previously did. My biggest struggle is still fatigue. I'm still finding short walks difficult and am relatively housebound. Exertion still seems to make me crash and become symptomatic, although on the positive side I do seem to "bounce back" far quicker. 

 

My current challenge is to gradually build my activity and keep a solid routine, while being sensitive to energy management and not setting myself back by crashing.

 

I also wonder how much of my current symptoms like fatigue are due to the negative effects of the lifestyle caused by withdrawal, rather than withdrawal itself. For instance, I didn't see the sun for many months when I was incredibly hypersensitive to light, and this in turn can cause many problems like vitamin D deficiency. Inactivity in itself, can also make a person fatigued and unhealthy. In a way I'm hoping this is the case, because then it gives a route for improvement beyond just reinstatement and stabilisation.

 

I was thinking earlier... that I often feel like a prisoner who has come out of years of solitary confinement. During my worst months, I was confined to a dark room and couldn't do much other than try to survive, reduce stimulus and pray for sleep to come. All the normal patterns of life faded away during this period, but now it's time to restablish them in order to further heal. 

 

But it's very hard. It really feels like learning to walk again. Withdrawal generated a lot of psychological fear about exerting myself in many ways, and it feels like a layer of sludge I have to carry and work through. I suppose this is the same as any trauma. I've often felt I have a type of PTSD from this all. Withdrawal is a strange trauma though, because although it wreaks havoc upon the mind and body in a similar way, we have no single event to point to. There is no memory, no specific moment of emotional overwhelm that could be worked with specifically and healed. Instead, there are just months of monotonous suffering and overwhelm, with the same effect.

 

The consequence is that a lot of PTSD-like loops get established, but there is no clear therapeutic way to work through it. But the body seems to keep the score of the trauma, and returning to life is a huge challenge. All there is to do is carry on.

 

I'm just kind of waiting for my body and mind to kick in, to be normal again. In the past, I've been very high functioning and successful, but it seems bizarre to even imagine this now. It feels like putting together a 1001 piece Jigsaw of the previous life I lived without much effort at all. 

 

I have a sense that there is meaning in this process though. That somehow, in transcending difficult and traumatic experiences we are endowed with a kind of power of spirit. Maybe this is in compassion and kindness towards others, maybe this is simply gratitude for a completely ordinary life, or maybe it reveals itself quite mysteriously somewhere further down the line in our choices of life and work.

 

Either way, I have faith that the power of this experience is not lost in a void, and that it will somehow infuse life with more meaning and richness.

 

Jay

 

[samanthaelizabeth]

3 hours ago, Longestroadhome said:

- A simple and irrational dislike of being on the medication. Even though life on it can be happier, more functional, and so on, there's a significant power to get off it. Why? For what? There are some rational reasons. But usually the short or long term fears or health risks are greatly exceeded by suffering and chronic stress in withdrawal. For instance, I imagined I would recover a greater depth of emotion/feeling after withdrawing. It was the opposite, withdrawal itself was so traumatic that it shut down my ability to feel anything positive - something that had been relatively intact while on the drugs. I think it's really easy to idealise some fictitious self that will emerge off the medication, but how much evidence do we have for it, really? Or are we simply using it as a device to rationalise our suffering?

Yes, I agree with you.  I think I am having an idealized view of coming off of Zoloft.  I'm not sure that it's in my best interest to do so.  I do think I have been over-medicated for years as I pushed my doctor to raise the dose because it wan't working fast enough.  If I had been patient and not wanting to get back to my normal life of working, pursuing...I would have eventually come out of my drug induced depression. I am going to try and lower my dose, however I am very afraid of the consequences of doing so, and certainly not going to subject myself to years of suffering just to prove a point.  I do think the people on this board are very helpful and do know more than doctors do about AD'S, it's just unfortunate that there is even a board like this because doctors don't know.  I hope they stop prescribing this medicine to people but that will probably never happen in my lifetime, there is too much money involved.

[DaveB]

4 hours ago, Longestroadhome said:

Yes, once again I agree with what you shared. 

 

The hardest thing for a or a lot of people who have suffered terrible withdrawal symptoms for months is the fear of failure. Yet at what cost? A tiny reinstatement may give them their life back. But the fear of it having an adverse affect makes the decision a hard one. Just yesterday I considered reinstating to a higher dose myself! The past five months have been awful and the thought of continuing that way was more than I could bear. But then I reminded myself that I felt dreadful at 10mg after dropping from 15 and dreadful at 5 after dropping from 10....so where could I go? Eventually withdrawal symptoms settled and the new dose became my ‘normal’. The last cut is taking much longer to stabilise. Thank God I woke with a window and a clearer mind!

 

From memory when I started lexapro it was pure hell for the first four weeks. I was started off on 5mg and I felt like someone had knocked me over the head with a hammer. When the psych told me to increase to 10mg I nearly hit him ( should have!) I could barely function at 5mg how did he think I would cope with 10. But by week five the start up symptoms had lessened and I ended up on 25mg in a short space of time. 

 

I also believe this experience will will not be lost in a void. We are to use it in some way for good. Keep writing.... your words are powerful and encouraging 👍👍

 

Just stopping by to tell you both I agree 100% with you. I HATE being on these drugs, but now that I have seen what can happen when you play around with different kinds and doses, I will take the drugs. I will at some point attempt to taper off the Paxil (I would like to get off the Zyprexa as soon as I can, but again I am not going to rush it) but I am in NO hurry. Life is too short to waste time on withdrawal and all the horrible things that go along with it. 

[samanthaelizabeth]

2 minutes ago, Longestroadhome said:

I have read many threads here and they tell horrific  stories about withdrawal. I am so grateful that I have withdrawn ‘MY’ way, even though that was based purely on ignorance! I knew that the drugs had to be tapered slowly but that was about it. My initial cuts were too big and I remember being aware of some nasty withdrawal symptoms which made me decide to stay at the new dose for a long time. In doing that I basically came from 25mg down to 5mg with few issues. It was only once I hit 5mg that my problems began. It has taken me ten years to go from 25mg to 2mg! I must win the record for the longest drawn out taper 🤪 but who cares..... I have lived life during that time! Not bed ridden, not unable to function. Yes, I hate these drugs and wish I was off but at what cost? Some of the stories here are enough to make me want to take another ten years to get off 2mg!

Wow!  ten years?  my taper is going to go very, very slowly.  I love life and don't want it disrupted.  It might take me forever to get down to even 150 but I don't care! I want off also, but at what cost? Not worth it to me!  Just going to try to get down to 150 at least.  I like the way you think!

[neroli]

Hello James

 

I'm reading your thread with interest - I'm in a similar situation to you.  Trying to stabilise on "new" drugs that I've been on for about a year now and desperate to get off them but any reduction creates quite a kick-back.  I'm also not super-mobile with lead legs and fatigue.  Don't know if I'll ever get back to some form of "me".  I also experience horrid symptoms if I take a nap in the day, or just can't keep my eyes open and drop off, they're sort of like a bus has hit me.  And I've developed tinnitus, made worse sine I've been on the new cocktail.  I'll keep on reading your thread to see how you are going.  My story is here 

 

[JamesF]

Most members here will definitely have experienced waves of intense anxiety or panic attacks during withdrawal. 

Almost everyone here will have also tried various techniques or methods to reduce this anxiety in order to suffer less. I'm aware there are various techniques stickied in threads here, but I would love to know what everyone has personally found most useful. A survey if you like. 


I've managed to get some small relief using meditation, tapping, and simple acceptance or non-resistance. But during the most intense waves of anxiety - I've never managed to get relief more than about 10%. So I'm still very much looking for techniques/therapies that might be a greater short term help. 


What have you found most useful to reduce anxiety in the short term? What's your go-to technique when feeling like this?

 

[Callie]

I've tried exercises from a book entitled DARE. I've tried breathing exercises. I've tried counting while visualizing the numbers. Now, I'm just saying to myself "this is just a bodily sensation, and it will dissipate." The problem I have is that a technique will only work for so long, and then the anxiety ramps up to a higher level that makes the technique fail. I have insomnia, and the intense anxiety strikes me in the middle of the night. No doubt, this is a tough one for me.

 

Prayers,

 

Callie

[ChessieCat]

I have found that taking magnesium helps to take the edge off my anxiety.  Several times I have stopped taking it and my anxiety increased.  Once I restart it lessens.  Some members have found that dissolving magnesium in water and sipping throughout the day helps.  Also foot soaks help some:  Magnesium

[Gridley]

Try the feet on the wall yoga pose for anxiety.  I've found it very effective.  Look at GiaK's second post in this link:

 

Yoga for calming (very simple poses can help greatly) - Symptoms and ...

[Hibari]

I have found L-Theanine very helpful for anxiety.  I take either 100mg or 200mgs as needed up to 3x per day. 

[neroli]

On 2/20/2018 at 12:17 PM, Longestroadhome said:

I am glad that these stories have helped you. If you look through the success stories there are a few that stand out to me because they decided to reinstate before withdrawing at a slower pace. I will try to find them and link them. 

Please do, Longestroadhome

[JamesF]

Have felt very unwell the last few days.

 

Not sure what's going on with me. I've had a few symptoms almost continually and intensely for the last 3 days or so

 

- Feeling of profound weakness and exhaustion. Been unable to leave the house and was previously walking every day most of January.

- Lots of skipped heart beats. I woke up a few times last night to a big thud in my chest, gasping and me feeling extremely anxiety, thumping my own chest as if to start my heart again. Don't know if this is anxiety or what. It's very frightening.

- Very strong derealization and dizziness. Perception feels like it's juddering. I feel super spaced out and unreal.

- Loss of body sensation and whole body numbness. This is also very frightening. Sometimes I literally can't feel my body at all and have to concentrate really hard to feel some slight pressure in my feet.

 

I don't know what's causing this. I felt like I was stabilizing up to last week.

 

Could it also be benzo withdrawal and/or tolerance... Or even side effects of the benzos themselves? I have no idea.

 

I almost continually feel like I'm going to faint or simply flash out of existence. During heart symptom I get catastrophic thinking that I'm about to die of sudden death from some undiagnosed heart condition or even heart weakening from the last 8 months of hell and houseboundness. 

 

I'm consciously aware that it's probably withdrawal and anxiety causing all of these symptoms. But right in the thick of it when my body is numb, I'm dizzy, spaced out and skipping heart beats, it's incredibly hard to shrug the idea and fear that I'm on my way out.

 

The last few days, I've almost felt totally hopeless about recovery due to these persistent chronic fatigue type symptoms. Insomnia and agitation have generally improved but the fatigue hasn't diminished at all yet.

 

 

This is a bit of a hopeless post when things have generally been looking up, but wanted to express it and record this wave.

 

Take care all. Sorry I haven't had the energy to read and respond to your kind words. ☹️

 

Jay

[ChessieCat]

1 hour ago, JamesF said:

Loss of body sensation and whole body numbness. This is also very frightening. Sometimes I literally can't feel my body at all and have to concentrate really hard to feel some slight pressure in my feet.

 

I have occasionally had this happen.  It has only happened when I am lying in bed in a morning.  Because I have seen it mentioned on SA I doesn't scare me now and I just wait a bit, not sure how long, and try and relax and breathe and then have to concentrate on moving.

[DaveB]

19 hours ago, JamesF said:

Have felt very unwell the last few days.

 

Not sure what's going on with me. I've had a few symptoms almost continually and intensely for the last 3 days or so

 

- Feeling of profound weakness and exhaustion. Been unable to leave the house and was previously walking every day most of January.

- Lots of skipped heart beats. I woke up a few times last night to a big thud in my chest, gasping and me feeling extremely anxiety, thumping my own chest as if to start my heart again. Don't know if this is anxiety or what. It's very frightening.

- Very strong derealization and dizziness. Perception feels like it's juddering. I feel super spaced out and unreal.

- Loss of body sensation and whole body numbness. This is also very frightening. Sometimes I literally can't feel my body at all and have to concentrate really hard to feel some slight pressure in my feet.

 

I don't know what's causing this. I felt like I was stabilizing up to last week.

 

Could it also be benzo withdrawal and/or tolerance... Or even side effects of the benzos themselves? I have no idea.

 

I almost continually feel like I'm going to faint or simply flash out of existence. During heart symptom I get catastrophic thinking that I'm about to die of sudden death from some undiagnosed heart condition or even heart weakening from the last 8 months of hell and houseboundness. 

 

I'm consciously aware that it's probably withdrawal and anxiety causing all of these symptoms. But right in the thick of it when my body is numb, I'm dizzy, spaced out and skipping heart beats, it's incredibly hard to shrug the idea and fear that I'm on my way out.

 

The last few days, I've almost felt totally hopeless about recovery due to these persistent chronic fatigue type symptoms. Insomnia and agitation have generally improved but the fatigue hasn't diminished at all yet.

 

 

This is a bit of a hopeless post when things have generally been looking up, but wanted to express it and record this wave.

 

Take care all. Sorry I haven't had the energy to read and respond to your kind words. ☹️

 

Jay

 

Shoot sorry Jay! Sounds like a wave, I am sure it will pass soon. I am with you though, I hate that just when I feel I am getting stable, something like this always comes along to make me doubt everything. 

[wildchild93]

Love the part about toxic sleep, I can totally relate to that. Some mornings, my symptoms feel better when I don’t sleep at all the night before than when i get a good nights sleep. It’s the strangest thing. 

[wildchild93]

On 2/25/2018 at 3:34 PM, JamesF said:

Could it also be benzo withdrawal and/or tolerance... Or even side effects of the benzos themselves? I have no idea.

I had very bad derealization while on benzos and coming off of benzos. Felt like I was walking through a cloud all day. For me, the benzo withdrawl derealization was a different kind of spacey feeling than the antidepressant withdrawl. That’s one of the symptoms that has improved the most for me since I’ve tapered off of klonopin. 

[JamesF]

5 hours ago, DaveB said:

 

Shoot sorry Jay! Sounds like a wave, I am sure it will pass soon. I am with you though, I hate that just when I feel I am getting stable, something like this always comes along to make me doubt everything. 

 

Thank you, hope so. What gets me sometimes is the emergence of new symptoms. I start wondering why? What's causing it? But I guess shifts in symptoms are just a natural part of the process and may even indicate healing. 

Especially when tired, I realise it's easy to forget about the symptoms that have diminished, while fixating on the new or unchanging ones. 

 

I'm going to try to work on deep acceptance and positive thinking about this all being part of the healing process.

 

23 hours ago, ChessieCat said:

 

I have occasionally had this happen.  It has only happened when I am lying in bed in a morning.  Because I have seen it mentioned on SA I doesn't scare me now and I just wait a bit, not sure how long, and try and relax and breathe and then have to concentrate on moving.

 

Yes it seems to be quite associated to lying down, although I had a few stretches the last few days where it lasted for hours.

 

It's interesting as a symptom because it's quite disorientating and strange, but not necessarily causing suffering. I find it easy to get triggered into a "where's my body gone?" fear/adrenaline response when this happens. But a few times I've managed to relax into my strange sensation-less body and it's not been too bad, just strange.

 

1 hour ago, wildchild93 said:

Love the part about toxic sleep, I can totally relate to that. Some mornings, my symptoms feel better when I don’t sleep at all the night before than when i get a good nights sleep. It’s the strangest thing. 

 

It's very weird. I think this is definitely related to benzos for me, although I also got it in a similar form with AD withdrawal. 

 

I never managed to find a totally clear pattern about what caused toxic sleep. I think the only things I noticed were;

1) naps in the day were either impossible or would cause a super toxic response, so better to only sleep at night

2) taking benzos closer to bed time seemed to increase the chance of this happening (high % benzo in the blood stream affecting sleep cycles ?)

3) the sooner my first awakening from sleep was, or the more "chunks" of sleep in a night, the more toxic the following day would feel. And that's no matter if I managed to a good amount in total or not... maybe sleep clears much more of the drug out of the blood stream than a waking state, causing withdrawals?... But that doesn't make much sense because for me the toxic feeling lasts all day and doesn't resolve after taking another dose... Or maybe benzos diminish something required for going into/coming out of sleep, like cortisol for instance, which they reduce a lot, so trying to sleep more means the body can't fully initialise some part of the sleep cycle? Who knows...

4) and just generally, the lower I've got the benzo dose the less toxic sleep seems to be. But it's still occuring quite often even on a dose under 1mg now. I guess it won't stop until I'm totally off it

 

Curious if you noticed any pattern?

 

45 minutes ago, wildchild93 said:

I had very bad derealization while on benzos and coming off of benzos. Felt like I was walking through a cloud all day. For me, the benzo withdrawl derealization was a different kind of spacey feeling than the antidepressant withdrawl. That’s one of the symptoms that has improved the most for me since I’ve tapered off of klonopin. 

 

Yes definitely has a different quality to it.... Hoping to taper off my last crumbs of diazepam soon and will be hoping this resolves

[DaveB]

On 2/26/2018 at 2:54 PM, JamesF said:

 

Thank you, hope so. What gets me sometimes is the emergence of new symptoms. I start wondering why? What's causing it? But I guess shifts in symptoms are just a natural part of the process and may even indicate healing. 

Especially when tired, I realise it's easy to forget about the symptoms that have diminished, while fixating on the new or unchanging ones. 

 

I'm going to try to work on deep acceptance and positive thinking about this all being part of the healing process.

 

 

Yes it seems to be quite associated to lying down, although I had a few stretches the last few days where it lasted for hours.

 

It's interesting as a symptom because it's quite disorientating and strange, but not necessarily causing suffering. I find it easy to get triggered into a "where's my body gone?" fear/adrenaline response when this happens. But a few times I've managed to relax into my strange sensation-less body and it's not been too bad, just strange.

 

 

It's very weird. I think this is definitely related to benzos for me, although I also got it in a similar form with AD withdrawal. 

 

I never managed to find a totally clear pattern about what caused toxic sleep. I think the only things I noticed were;

1) naps in the day were either impossible or would cause a super toxic response, so better to only sleep at night

2) taking benzos closer to bed time seemed to increase the chance of this happening (high % benzo in the blood stream affecting sleep cycles ?)

3) the sooner my first awakening from sleep was, or the more "chunks" of sleep in a night, the more toxic the following day would feel. And that's no matter if I managed to a good amount in total or not... maybe sleep clears much more of the drug out of the blood stream than a waking state, causing withdrawals?... But that doesn't make much sense because for me the toxic feeling lasts all day and doesn't resolve after taking another dose... Or maybe benzos diminish something required for going into/coming out of sleep, like cortisol for instance, which they reduce a lot, so trying to sleep more means the body can't fully initialise some part of the sleep cycle? Who knows...

4) and just generally, the lower I've got the benzo dose the less toxic sleep seems to be. But it's still occuring quite often even on a dose under 1mg now. I guess it won't stop until I'm totally off it

 

Curious if you noticed any pattern?

 

 

Yes definitely has a different quality to it.... Hoping to taper off my last crumbs of diazepam soon and will be hoping this resolves

 

How are you doing James? has your latest wave resolved itself yet? Hopefully you are doing much better!

[JamesF]

On 2/19/2018 at 3:16 PM, Longestroadhome said:

Yes, once again I agree with what you shared. 

 

The hardest thing for a or a lot of people who have suffered terrible withdrawal symptoms for months is the fear of failure. Yet at what cost? A tiny reinstatement may give them their life back. But the fear of it having an adverse affect makes the decision a hard one. Just yesterday I considered reinstating to a higher dose myself! The past five months have been awful and the thought of continuing that way was more than I could bear. But then I reminded myself that I felt dreadful at 10mg after dropping from 15 and dreadful at 5 after dropping from 10....so where could I go? Eventually withdrawal symptoms settled and the new dose became my ‘normal’. The last cut is taking much longer to stabilise. Thank God I woke with a window and a clearer mind!

 

From memory when I started lexapro it was pure hell for the first four weeks. I was started off on 5mg and I felt like someone had knocked me over the head with a hammer. When the psych told me to increase to 10mg I nearly hit him ( should have!) I could barely function at 5mg how did he think I would cope with 10. But by week five the start up symptoms had lessened and I ended up on 25mg in a short space of time. 

 

I also believe this experience will will not be lost in a void. We are to use it in some way for good. Keep writing.... your words are powerful and encouraging 👍👍

Very glad to hear you're stabilizing on a low dose. The tiny doses were very hard for me to, about 5mg sertraline is where I hit a brick wall and didn't find stability, but I chose the wrong approach of getting off it quick since I thought I was close to the finish line. In future I'll be prepared to hold things steady for years, and hope you have the same gentleness of view.


Withdrawal is a cruel beast with no easy choices regarding reinstating or continuing with a very uncertain timeline. My emotional investment in the ~8 months I'd suffered in intense withdrawal was under the assumption that things would improve and that I would heal. When they didn't after 8 agonising months mostly confined to a room, I realised I still had no evidence that it would ever improve. No windows and no pattern - how long would I need to wait? 12 months, 24 months, years? Was this mythical life off the drugs I was waiting and suffering enormously for worth all  of these lost years? I'd like it to be worth it, but rationally it probably wouldn't be much different to life on a few crumbs of a small white pill, and certainly not worth the suffering. 

 

In this hypersensitive state, I found reinstatement as the only option left on the table. There was a huge weight to this choice as well. Starting again meant wiping clean those 8 months. Wiping clean the degree of healing that might have taken place, and wiping clean the possibility that I might have healed, had I waited just a little bit longer. Then reinstatement itself elicits a great amount of fear - will it work as it did before? will my exhausted body be able to take the impact when it's so so fragile? will things worsen, causing more suffering and time waiting to heal? I only took the pill when I felt I no longer had a choice, but I'm glad I did. 

 

Slowly slowly, stability seems to be coming closer. And although I'm still taking some crumbs of a white pill, the experience did teach a lot of vital lessons and some deep acceptance. 

 

 

I have no fixed timeline now. I don't even have an intention to be off the drugs, although it would be nice. I think clinging onto such an intention would make it hard to make the kindest choices for ones well-being, since it can lead to ignoring how you feel for the sake of an imagined future, which I think is an approach that almost never works.

 

On 2/19/2018 at 6:54 PM, samanthaelizabeth said:

Yes, I agree with you.  I think I am having an idealized view of coming off of Zoloft.  I'm not sure that it's in my best interest to do so.  I do think I have been over-medicated for years as I pushed my doctor to raise the dose because it wan't working fast enough.  If I had been patient and not wanting to get back to my normal life of working, pursuing...I would have eventually come out of my drug induced depression. I am going to try and lower my dose, however I am very afraid of the consequences of doing so, and certainly not going to subject myself to years of suffering just to prove a point.  I do think the people on this board are very helpful and do know more than doctors do about AD'S, it's just unfortunate that there is even a board like this because doctors don't know.  I hope they stop prescribing this medicine to people but that will probably never happen in my lifetime, there is too much money involved.

Glad to hear you agree with what I wrote samantha. I definitely think the idealized self of the drugs is something to let go off. It was a powerful incentive for me, but as I rushed there, I found I headed further away from it than I thought possible. It was a psychological narrative that, in part, made me willing to undergo brutal withdrawals. I'd even use evidence that it might be emerging to keep myself suffering. For instance, I observed that I was crying a lot in withdrawal, and didn't do this much while on the drugs. I rationalised I was gaining some kind of emotional richness, and consequently even used these negative emotions as a reason to keep going.

 

 

But in hindsight I think these were just ,mental stories, and what I interpreted as evidence of this ideal self emerging was a byproduct of suffering rather than improvement. I think it all came out of a psychological mechanism to rationalise my suffering as having been somehow worthwhile or for reason, because there's nothing more psychologically distressing than needless suffering. Having this view can protect oneself, it can give him some degree of dissociation from what's happening, some small meaning or hope. But the danger is equally that it is ill-informed and can convince one to go on suffering  needlessly, when it fact there is both no rational reason for it to continue. These mental stories also lead to an exaggerated demonisation of the pills, (something I've encountered a lot on this forum), which again may lead to choices that go against kindness to oneself and create suffering. And what's more important, well-being or clinging onto some attitude that the pills are the devil?  
 

On 2/20/2018 at 11:23 AM, FSL said:

This topic has a deep resonance with what I feel about all this wd process.

 

In my worst days, I was on 20mg of Lexapro and 6,0m of Bromazepan (benzo). I tried different approaches to wd and never succeeded. Slow, fast, changing medication... I tried every trick in the book and failed.

In one of my recent therapy sessions with my psychologist, I told her I had reduced the benzo. Se was so frustrated because she knew I was going to crash. And she was right.

 

I think one of the keys is acceptance. Most of us don't accept we have to take this drugs to function properly. I'm not advocating these drugs, God only knows what I would give to not have to take them, but.... I have. 

 

I'm happy at the point where I am. I take 2,95mg of Lexapro which is almost 10% of my original dose. If I carry on tapering I simply go crazy, I become dysfunctional because I just cannot tolerate wd symptoms anymore. I tried too many times and my CNS is so sensitized, I can't take it anymore.

 

 

So the pledge I made to myself is to be happy with this low dose. It's a dose below the "minimum recommended dose for therapeutic effect" so I know I'm just feeding my body of an addiction. So be it. Because what is the other option? Become bedridden? Losing my job? Upsetting my entire family? Being housebound? Having extreme anxiety further damaging my body? Not being able to exercise? Having intrusive thoughts? Tinnitus? Terrible Insomnia? Suicidal ideation?  And for what???? Is it guaranteed that I will recover from that? How long is it going to take? 2 years, 5, 10 ??? WD is in itself a big trauma to our nervous system, one that you may not ever recover from... So I say, WD completely? Trying again to come off? No thank you! 

 

Stay on a low dose, practice exercise, eat healthily and sleep as much as you can. Work wisely, and avoid long shifts. Be true to yourself and the ones that love you and you will be fine even on medication! That's my motto. 

 

Yes. Deep acceptance.

Both times I attempted withdrawal, I got to a low dose after which I never attained stability again. I went quite slow, 18 months. I waited almost a year. It just never happened. 

Who knows the reason for this. Perhaps they cause some irreversible effect that some people brains can't heal. Perhaps this is to do with starting young as I did, or taking them long term, or is even genetic and individual. Does the cause even matter? Definitely not if it leads to a feel of injustice, lack of acceptance and more suffering .... I think all that matters is practically, we tried, and it didn't work and now make the best choices based on this information. 

I'm happy to stay on a low dose too. Maybe forever. Who knows. I'm open and accepting of that possibility. I very much agree with what you wrote - there's the essence of deep acceptance and of not being caught in any particular view or ongoing attempt. And this sense of not being caught is very important - because it allows us to look directly and nakedly at our own health and make the kindest choices to ourselves. I also feel like "enough!" and just relaxing into the situation I find myself in. 

WD is definitely a trauma. I believe it's very similar to PTSD in the sense that it is an experience that cannot be tolerated. I also believe that many people here that consider themselves to still be suffering from AD withdrawal may be healed from the original effects of the pills, but are now in fact suffering from the trauma and established stress cycles / sensitisation of withdrawal. If you're in a state of overwhelm for weeks, months, or years, it leaves it's mark on the body and the mind. It won't simply dissipate. These wounds are quite deep and need to be healed with understanding, kindness and skill. Even after reinstating, I know I have a long healing process ahead of me. But I've accepted this, and know that the slow route of patience and self compassion is the most direct route. 

And yes, the effect on others too. For many of us it's not worth it for ourselves, but certainly not for the effect on others, friends and family. I'm young enough not to have any children yet, and to not have any large responsibilities (although I left several when I became ill). Perhaps this youth was a bad thing in the sense that it gave me few reasons not to risk descending into a deep, dark hole. If I have children in future, I can't imagine taking the risk of withdrawal again, it's just not worth it knowing it might impact them. Or for instance, the risk of knowing we might have limited time with those we love, and being in regret that we spent some of that precious time handicapped by withdrawal. It just doesn't seem worth it any more really. 

In some ways, acceptance of this is very hard. But from the perspective of simple kindness towards oneself and others, acceptance seems very easy. 
 

On 2/20/2018 at 6:35 PM, neroli said:

Hello James

 

I'm reading your thread with interest - I'm in a similar situation to you.  Trying to stabilise on "new" drugs that I've been on for about a year now and desperate to get off them but any reduction creates quite a kick-back.  I'm also not super-mobile with lead legs and fatigue.  Don't know if I'll ever get back to some form of "me".  I also experience horrid symptoms if I take a nap in the day, or just can't keep my eyes open and drop off, they're sort of like a bus has hit me.  And I've developed tinnitus, made worse sine I've been on the new cocktail.  I'll keep on reading your thread to see how you are going.  My story is here 

 

Hi neroli, thanks for reading my thread and for saying hello. I'll read your introduction soon... 

Just from what you wrote briefly here, I'd urge you to be totally okay with holding for a long while and to not be so desperate to get off. Reduce so gradually that it never compromises your health and well-being. Then not only will this lead to a more enjoyable life in the present, but the well-being you preserve will accelerate your healing process long term.

Hoping you are feeling better today and will read your story soon. Take care 

 

1 hour ago, DaveB said:

 

How are you doing James? has your latest wave resolved itself yet? Hopefully you are doing much better!

Better today thank you. The bizarre derealisation tunnel vision and body numbness has reduced a bit. I guess it was just another wave, and sometimes new/different symptoms are to be expected while all the brain rewiring is happening. 

Hope you're well too 

I don't know about you, but a good sign of a window for me seems to be that I actually have the energy to write here, so things are looking positive again.

Jay

[ChessieCat]

Please update your signature whenever you make a change so that it remains current and the mods can see your drug history at a glance and not have to read back through your two topics.  Thank you.  Account Settings – Create or Edit a signature

[neroli]

On 3/1/2018 at 7:43 AM, JamesF said:

Just from what you wrote briefly here, I'd urge you to be totally okay with holding for a long while and to not be so desperate to get off. Reduce so gradually that it never compromises your health and well-being. Then not only will this lead to a more enjoyable life in the present, but the well-being you preserve will accelerate your healing process long term.

Thanks, James.  I'm taking a much gentler approach to tapering.  I did reduce 0.5mg of Diazepam this week and suspect the weepiness/depression and extra fatigue were a result.  I'll hold for a few weeks to stabilise.

 

Fatigue and lead legs are a big problem for me - and I feel caught in a Catch 22, because Citalopram caused fatigue and weakness (though not as bad as it is now) and now I'm on Escitalopram and Nortriptyline - so I have no idea if the legs/fatigue will resolve, or whether the present drugs are doing it.  But I know I can't taper fast without significant detrimental effects.  By the way, the legs were getting weaker during the period I was off any meds. - it was a horrible few years going through big waves that seemed to get worse.  It was a huge decision to go back on meds. again, and I just wish I could have ridden out the huge wave that hit me - but looking back on my records from last year, I see that I was in 24/7 anxiety for over a month (not "normal" anxiety, it was a chemical anxiety on which no relaxation/CBT/visualisation had any effect whatsoever.  I did try it) and I felt as though I had no other option than to go on meds. to see if they would stabilise me.  Unfortunately, that included the benzo, which is what I'm trying to gradually taper.  I"m 50% better than I was last year, when I was non-functional, I can at least work part-time now.  It's a hard road, though, there hasn't been a day when I haven't had to deal with the current symptoms.

 

Oh, and acceptance?  Well, good if you can get there - I'm still so angry and in disbelief that this has happened to me through prescriptions medications and the denial by the medical community that it can be caused by medications, that acceptance is a fleeting butterfly that passes by...it will be some time before I can "accept" the "new" me - the one that is semi-disabled and has a severely limited life....

[DaveB]

How are you doing James? Has your latest wave passed?

[DaveB]

Haven't heard from you for a while James, how goes it?

[DaveB]

Jay going on about a month with no update...you are starting to scare me bro. You doing ok?

[curiousnootropics]

James... how are you today mate?