JamesF: reinstating and stabilizing sertraline after 2 withdrawal nightmares

[JamesF]

Introduction:

Hi everyone.  I signed up because I found a great deal of useful information here. Thank you all for sharing your accounts too. Similar stories show we are not alone, while successful ones show that there is hope despite how severe and destabilizing withdrawal can be. 

I'm starting this log to track my progress in achieving some stability. Eventually I hope to withdraw slowly and successfully from SSRIs, but am in no rush to do so after withdrawal experiences. 

In a way it's also inspired me to start this log because I'm possibly one of the more severe cases (at least the ones I have read so far). Protracted withdrawals have led me to be totally non-functional and housebound with severe anxiety, severe insomnia and severe fatigue for two periods totally over a year. Beyond this, I have lost much more time struggling to keep afloat and trying to recover from these periods of intense suffering, instability and hypersensitivity. I understand what it's like to feel your nervous system is totally fried beyond repair.

I say all this not to be dramatic, but as something someone in a similar situation might take inspiration in reading one day in the future, when I eventually recover. 

An outline of my history with SSRIs is as follows:
 

• 2008: Started 30mg Citalopram
• 2014: Tapered down Citalopram over 6 months and discontinued 02/2015
• Severe withdrawals peaked after 6 months. Totally housebound.
• 09/2015: Sertraline 100mg started to mitigate withdrawals.
• 2016: Tapered down Sertraline over 1 year ending 03/2017
• Severe withdrawals peaked after 4 months until present date 10/2017. Totally housebound. 
• 10/2017: Reinstated Sertraline 5mg in an attempt to mitigate withdrawals

Unfortunately, both times during withdrawals, Doctors have also thrown valium and zopliclone at me several time to try to rectify my insomnia. Zopliclone for 2 months from 07/2015 and Valium for 4 months from 06/2017 until present date 10/2017. I accepted because I felt no other option beyond reinstating SSRIs. Both times, these drugs created severe rebound anxiety and likely intense tolerance/withdrawal symptoms of themselves. This made the situation even more unclear, but given the low doses I suspect the effects are limited compared to protracted SSRI withdrawal. I am currently taking 1mg valium per day and remaining there to keep things stable while I reintroduce sertraline. 

Symptoms:

During both withdrawal periods, my symptoms have been extreme. Both times, I tapered off relatively slowly, although clearly not slowly enough. I felt relatively functional for 1 month~, then quickly deteriorated to being housebound after 5 months the first time in 2015, and after 4 months in 2017. I probably should have learned my lesson by now. Descriptions of a hypersensitized nervous system do the symptoms some justice, as do similar descriptions of benzo withdrawals in the "Ashton Manual". I have dealt and am now dealing with:
 

• Extreme anxiety. Characterised by an extremely physical, gnawing and unremitting agitation. At worst (which is often), it feels like my entire body is filled with a corrosive acid that's burning me from the inside. This feeling combined with others like fatigue/weakness simply gives the feeling of being on the verge of dying. But unlike a "panic attack", it does not come in waves, but instead remains constant generally. It is worst upon waking in the morning, and even worse if I attempt to have a nap in the day then wake up. 
• Insomnia. Extremely interrupted sleep. Physically, my body can be extremely tired, yawning, yet sleep does not come. The wired anxiety feeling described above does not diminish during tiredness. So I just lay there enduring it until somehow, at some point, I might fall asleep for a short while. I can invariably tell how long I will remain asleep based on the state in which I go to sleep, and this creates some dread for the awakening into a worse state that will come. Typical sleep stretches are 1.5 or 3 hours at best. Although I often lie there unable to sleep for the entire night with anxiety simply worsening the more tired I get. A very vicious and cruel cycle. If I wake up once, the stressful awakening reaction it produces ensures I will not manage to go back to sleep. So I generally get "one attempt" at a reasonable stretch of sleep. 
• Fatigue. Truly chronic fatigue, I believe the above 2 factors are what underlies this, although it's hard to know. My body feels extremely fragile and weak at all times. Often it feels like it's barely there at all, like it has simply flashed out of existence in a strange kind of dizziness/numbness. I spend long periods feeling like I will simply collapse at any moment and have no real faith that my bodily will continue to function when feeling like this. I feel very unwell after minor physical exertion. Walking a few hundred meters to the post box leads to a feeling of dizziness and stress that it will take a long time to return to baseline from. Often, I can't even manage to leave my room. All this leads to being very restricted and housebound. This is one of the worst symptoms, simply because it takes away the ability to engage in so many other activities that are positive for health and recovery: e.g. exercise, work, and so on. 
• Generalised hypersensitivity. Sounds, light, temperature variation, vitamins, minerals, foods that are different to normal, very light exertion, very light psychological stress (e.g. maybe a war movie), not eating for a relatively short period, waking up and many more. Most definitely no caffeine or alcohol. All of these will tend to create a big stress reaction and a crash that will take time to recover from. I feel like the balance of my nervous system is exceedingly delicate and that anything will throw it off. This leads to having to be incredibly gentle and cautious of anything that might upset it. 
• Misc symptoms. Above is likely the worst, but other more minor symptoms include things like frequent loss of appetite, loss of concentration, loss of positive feelings, social withdrawal, and so on. I see these as results of the above primary symptoms. 

 

It is perhaps worth noting here that these symptoms never existed prior to SSRI usage and discontinuation. The initial reason for starting them was depressed mood. 

Current status:
 

I don't wish to go too much into my history. It's outlined above and covers 9~ years of SSRI use. But this time I started sertraline 100mg~ in September 2015 after experiencing all of the symptoms above. The Doctor said to try it, so I did. I think I felt worse for 2 months before somehow finding a slightly greater stability. But this was not without side effects like a sense of being very stimulated (when being more restful was what I needed), and some strange ones like waking up with nose bleeds every morning. It did not feel healthy. 

After 3 months or so, I decided to reduce @ 10% per month to see if I could alleviate these side effects. I wasn't entirely convinced whether sertraline was even having a positive effect, since the improvement was 50% at best. At a dose of around 20mg is where I attained the most stability I have had in the last 2.5 years. Apparently sub-therapeutic doses according to medicine, but the right balance for me. I suspect this to be a mixture of alleviating SSRI withdrawals while minimizing SSRI side effects, rather than a positive effect of sertraline of itself. 

I then continued to reduce the dosage, over a year in total, thinking it would be healthy in the long run to get off, and doubting the therapeutic effect of such low (<20mg) doses anyway. 

Close to being off sertraline completely in 03/2017, things started to fall apart and gradually deteriorated until I had to leave my occupation and be totally housebound by 07/2017. It's all seems like quite a blur really. It happened very quickly and for some reason I had faith that I could simply ride it out and recover. But this did not happen. Instead, things got progressively worse up to the current date. 

Reinstating Sertraline: 

As a result, and due to reading information about withdrawals and reinstating, I see no other option than to reinstate a low dose of sertraline. I would give anything right now just to be slightly more stable and able to leave the house, even if this meant high dose SSRIs. The issue is, when you're in a delicate balance already, taking anything new or old represents a significant impact on that balance. It's hard to know what will help and what will destabilise further, which leads to a lot of apprehension about taking anything. 

I started with 5mg per day one week ago. This may be too low to have a therapeutic effect, so my current intention is to increase it by 5mg every 2 weeks until returning to the level at which I was most well, approximately 20mg.

So far, it has been quite stimulating and has likely made my sleep even worse. I have had some of my worst days to date this week. I'd appreciate any advice as to whether this is simply the side effects of restarting the medication, or if it indicates that I should avoid it? My hunch is that one week is too early to tell and that discontinuing it would lead to an even more uncertain situation.

Anyway, I will end things there and update in the coming weeks as and when there are any changes. 

Lots of gratitude again to everyone here and I very much appreciate and insight or advice. 

James

 

[ChessieCat]

Hi James and welcome to SA,

 

It's great that you have already found helpful information on this site.  However, because we don't know what you have read, I will give you the usual links which we give to new members.

 

The first thing we ask is that your create your drug signature.  This will appear below every post you make.  This way we can see your drug history at a glance and not have to read back through your posts.  Please remember to update it whenever you make a change so it remains current.  The following explains the best format for your  signature:

 

 A request: Would you summarize your history in a signature - ALL drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly?

• Please leave out symptoms and diagnoses.
• A list is easier to understand than one or multiple paragraphs. 

• Any drugs prior to 24 months ago can just be listed with start and stop years.
• Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago)
• Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016.
• Link to Account Settings – Create or Edit a signature.

Once we have this information we will be better able to offer suggestions regarding your reinstatement dose.

 

It takes about 4 days for a change in dose to get to a full dose in the blood and a bit longer for it to register in the brain.  It is a good idea to keep daily notes on paper so that you can see improvements which you might not feel.  If you are feeling improvement it means that reinstatement is working.  The idea of reinstating isn't to get rid of your withdrawal symptoms completely but to bring them to a tolerable level.  It is better to increase by small amounts gradually  than to take too high a dose and possibly upset your CNS further. 

 

This is your own Intro topic where you can ask questions and journal your progress.

 

These are ones that I think will be helpful for you:

 

About reinstating and stabilizing to reduce withdrawal symptoms

Why taper by 10% of my dosage?

 

Tips for tapering off Zoloft (sertraline)

 

Tapering Calculator - Online

 

Dr Joseph Glenmullen's Withdrawal Symptoms

 

Keep Notes on Paper

Rate Symptoms Daily to Check Patterns and Progress

 

Brain Remodelling

Video:  Healing From Antidepressants - Patterns of Recovery

 

Non-drug techniques to cope

 

How do you talk to a doctor about tapering and withdrawal?

What should I expect from my doctor about withdrawal symptoms?

 

Windows and Waves Pattern of Stabilization

 

Stabilising After a Reduction - What Does That Mean?

Withdrawal Normal Description

[JamesF]

Thank you ChessieCat. I updated the signature. 

Wondering if anyone could advise me about reinstating, in terms of typical effects and when to up-dose. 

I tapered Sertraline from 50mg to 0mg over 14 months, January 2016 to March 2017. Withdrawals peaked in approximately June, and soon after I became totally housebound with severe anxiety, insomnia, fatigue. The typical pattern of hypersensitivity to any stimuli and feeling stuck in fight or flight. 

This past month, October 2017 symptoms were worsening. Or at least, being immobilised by symptoms led me not to be able to leave the house, exercise, work, etc, which produces a downward spiral over time. I have not experienced a typical "waves and windows" pattern that is described, instead, just increasing waves and fewer windows. 

On 22nd October 2017 I decided to reinstate Sertraline starting at 5mg. I think the dose I felt most well on during my time taking sertraline was around 30mg. Initially, reinstatement seemed to cause more agitation and reduced appetite. But now after 10 days, I think I am about the same as prior to reinstating. I think I probably need a higher dose to have an effect. 

What would be the most sensible rate to increase my dosage? Should I stretch it out or jump up to near 25mg where I was most well?

I'm thinking something like add 5mg every 10 days.. but this seems slow. I'd like relief from symptoms and I don't want to prolong it forever. It doesn't matter to me if I stay on it for a long time, I just want to minimise any possibility of an adverse reaction from reinstatement.

Appreciate any experiences, insight or advice.

[baroquep]

Hi JamesF,  I've attached below some of the links that ChessieCat provided for you in her earlier post and would encourage you to read all of these links so that you have a better understanding of the recommendations made by Surviving Antidepressants.  I have a feeling that titrating up to 30mg at this time is going to make your symptoms worse as when it comes to antidepressants, more is definitely NOT better (see reinstatement link below).  As well, your plan to reduce 5mg every 10 days is a recipe for disaster (baroquep misunderstood - please see baroquep's followup post) and suggest that you review the link "Why taper by 10% of my dosage?".   The reason you had so much difficulty in July/August 2015 and again in June 2017 was that you tapered off of the drug too quickly which resulted in you suffering from what is known as withdrawal syndrome.  When we have been on these drugs long-term, we are at a much higher risk of suffering from this syndrome as the brain has made adjustments over the years to functioning under the presence of the drug and when it is tapered too quickly, the central nervous system doesn't have adequate time to adjust to the changes which results in withdrawal.  Rest assured, under these circumstances, this is totally normal, but something we all try to avoid by planning our tapers carefully.  

 

Surviving Antidepressants recommends tapering by 10% of your current dose with at a hold of at least four weeks before your next decrease.  The 10% taper recommendation is a harm reduction approach to going off psychiatric drugs.  Some people may have to taper at an even more conservative rate as they are sensitive to even the smallest drops.

 

What is Withdrawal Syndrome?
Before you begin tapering what you need to know

 

I realize there is a lot of information to digest here but it is in your best interest to have a strong understanding of the protocols recommended here especially when the decisions you are making will affect your health and well-being.  If you have any questions or need further clarification, please post back here in your introduction thread and one of the moderators will get back to you to make a recommendation to help you get stabilized and able to safely taper off of Sertraline.  

 

On 30/10/2017 at 10:26 AM, ChessieCat said:

About reinstating and stabilizing to reduce withdrawal symptoms

Why taper by 10% of my dosage?

 

Tips for tapering off Zoloft (sertraline)

 

Tapering Calculator - Online

 

Edited November 1, 2017 by ChessieCat
added note about baroquep's misunderstanding

[JamesF]

Hi Baroquep. Thanks for your reply. 

Unfortunately I think you misread my original post or I wasn't clear enough. I'm considering increasing 5mg every 10 days, not decreasing. This is in order to find stability because anything is better than where I currently am, and reinstatement has worked in the past. I'm asking for advice about how to increase to a reinstatement dose that will alleviate symptoms, without triggering any adverse reactions in a hypersensitized nervous system. 

You are very right that I tapered too quickly and I'm very aware of this now, thanks to all the information on this forum. My last taper was 10% per 4 weeks, which was still too quick for me. This is because I followed the schedule rigidly rather than listening to the cues in my body. My intention now is to reinstate and achieve some stability. I would have been willing to ride out withdrawals, but they were getting worse as opposed to better over time. 

Why not increase slowly to 25-30mg and see if brings improvement? This is what the psychiatrist I've spoken to recommends. 5mg has not had a negative impact so far, just a neutral one, so I think I'm possibly not increasing enough. Or in a pharmaceutical context, not getting enough receptor occupancy at such a low dose. 

Reinstatement of SSRIs in the past did improve my symptoms, so maybe it's worth finding out through trial and error?

 

Edited November 1, 2017 by ChessieCat
removed quote

[baroquep]

Oh, I'm sorry, yes, I did misread your post ... well that certainly changes things   Am happy to hear that you've had an opportunity to get more information about what you were dealing with previously.  That said, I would still like encourage you to read the link on reinstatement and to caution you to titrate up slowly, maybe by 1.0 mg every 7-10 days rather than by 5.0 mg.  The goal is to reinstate only as much of the drug as is necessary to reduce withdrawal symptoms, these drugs are very strong even in small doses.  It may not be necessary for you to increase all the way back up to 25-20mg to get a bit of relief from your withdrawal.  I'm highlighting some the text from the link on reinstatement that I'd like to draw your attention to.
 

About reinstating and stabilizing to reduce withdrawal symptoms

• It takes at least 4 days for your body to fully register the addition of a neuroactive drug. Unless you have an immediate bad reaction, observe your symptom pattern for about a week to see if the reinstatement is helping. If you have an immediate bad reaction, reduce or stop taking the drug.
• After reinstatement, the amount of time needed to alleviate withdrawal symptoms (stabilizing) varies according to the individual. Relief can be felt immediately, after some weeks, or after some months.
• Once you feel withdrawal symptoms are reduced after reinstatement, give your nervous system time to stabilize before attempting dosage reduction. Think in terms of months, not days.
• Be patient after you reinstate. Reinstatement may not immediately eliminate all withdrawal symptoms. You may still experience waves of symptoms, which usually lessen as time goes on. Do not attempt to taper again until you feel symptom-free, or at least until your withdrawal symptoms are mild and tolerable.
• The dose needed for effective reinstatement varies according to the individual.

• Often a partial dose will relieve withdrawal symptoms. If, for example, you were taking 20mg Paxil and quit rapidly only a few days ago, 5mg or 10mg may be enough. Others find they need a higher dose.
• Start low to see what you need. You can always increase if necessary. If you've been off the drug for a month or more, many people can find relief from antidepressant withdrawal symptoms by reinstating as little as 1mg-5mg.

[JamesF]

Thank you again! 1mg per 7-10 days sounds just sounds a bit too slow for me really ... it could take months to get to an effective dose? I really need some resolution of symptoms because it's so debilitating right now. In this sense I'm very willing to overshoot the mark to feel better, even if it means a longer withdrawal. In fact I'm not even considering withdrawal right now.. just finding some stability. It's been really intolerable these last 3/4 months, I've barely been able to leave the house or sleep. I'd accept staying on this stuff indefinitely for now.

Above it says "It takes at least 4 days for your body to fully register the addition of a neuroactive drug", but then "Relief can be felt immediately, after some weeks, or after some months.". Is there a way of judging whether it's safe to keep increasing? 

My reaction to 5mg has been neutral, essentially the same as it was with 0mg. I'm not sure whether this is because I've only been taking it 9~ days, or if it's simply too low. And also, does a neutral reaction mean I can probably tolerate a higher dose, presumably an adverse reaction should happen more quickly?

It's just very frustrating to have to be so cautious... because the other side of this is obviously that a nervous system is in a very delicate balance, and there's a fear of making it more unstable. Contradictory advice too, the initial advice from the Psych was simply to start at 25 or 50 and he thought that 5-10mg simply "wouldn't hit the sides", but if I wanted to endure it I could. On the other hand, direct experience and people's experience in this community says... be gentle and cautious, don't disrupt what is out of balance. The problem with this obviously is that you might be inclined to stretch things out far longer than might be necessary to get relief. In terms of reinstating or titrating up anyway....  confusing....

Anyway enough confusion and doom and gloom....

Thank you again

 

Edited November 1, 2017 by ChessieCat
removed quote

[ChessieCat]

Just want to say that I agree with baroquep about not increasing by such large amounts.

 

You stopped sertraline in March 2017.  It isn't clear from your information in posts or signature what dose you last took.  Your brain will have made some changes during this time.

 

Please amend your signature to add the dose you last took instead of 0:  Jan 2016 to March 2017: Tapered Sertraline to 0 @ 10% per month. 

 

We have also been led to believe that there is such a thing as a "therapeutic dose".  This is a lie put forth by the pharmaceutical companies.  At SA we prefer "lowest effective dose".

 

With psychiatric drugs, changes we make are cumulative.  What worked for you before may not work again.  It is better to make small increases, but my thought is that it would be better to wait longer than 7-10 days.  I think 2 weeks would be better because it takes about 4 days for a dose change to get to full dose in the blood and a bit longer for it to register in the brain.  It is a good idea to keep daily notes on paper because you may be able to see improvement which you don't feel.

 

Keep Notes on Paper

Rate Symptoms Daily to Check Patterns and Progress

 

Dr Joseph Glenmullen's Withdrawal Symptoms

[ChessieCat]

5 minutes ago, JamesF said:

I'm very willing to overshoot the mark to feel better, even if it means a longer withdrawal.

 

6 minutes ago, JamesF said:

On the other hand, direct experience and people's experience in this community says... be gentle and cautious

 

The reason we are urging caution is because we have seen members become even worse when they have reinstated too high a dose.  And it's not that they get worse and then things improve.  Some of them have become worse and not been able to stabilise, and have to endure destabilisation, which can effect various parts of the body, as well as withdrawal.  Some of them become very sensitised where even some foods can cause problems.

 

So it's not simply a case of overshooting and then drawing back a bit.  It could destabilise you and it could possibly last for years.  We are trying to prevent this from happening to you.

[baroquep]

5 minutes ago, JamesF said:

Above it says "It takes at least 4 days for your body to fully register the addition of a neuroactive drug", but then "Relief can be felt immediately, after some weeks, or after some months.". Is there a way of judging whether it's safe to keep increasing? 

 

Some people may find relief immediately, for others it could take much longer.  The only way to judge whether it continues to be safe when you are increasing your dose, is to take it slowly so as not to destabilize your central nervous system further.  By increasing in small increments, you lessen your chance of having an adverse reaction.  As ChessieCat mentioned, your central nervous system has likely made some changes since you discontinued previously and in my opinion, 25-30mg is overshooting the target by a large margin.    

 

I'm sorry that this is not what you want to hear, but Surviving Antidepressants recommends a harm reduction approach to tapering and the same applies to reinstatement.  What you are aiming for is relief from your symptoms at the lowest possible dose so that you can function on a day-to-day basis.  I've been tapering (which is really up-dosing in reverse) and will have to say that most of the same rules apply either way.  I attempted to reduce slightly more than 10%, by a minuscule amount and I destabilized pretty badly, was off work for a week and it took me almost three months to start feeling back to normal.  

 

9 minutes ago, JamesF said:

It's just very frustrating to have to be so cautious... because the other side of this is obviously that a nervous system is in a very delicate balance, and there's a fear of making it more unstable.

 

Yes, I do agree it can be frustrating, but it's best to be safe rather than sorry if you destabilize further by reinstating too high a dose.

[JamesF]

16 minutes ago, ChessieCat said:

Just want to say that I agree with baroquep about not increasing by such large amounts.

 

You stopped sertraline in March 2017.  It isn't clear from your information in posts or signature what dose you last took.  Your brain will have made some changes during this time.

 

Please amend your signature to add the dose you last took instead of 0:  Jan 2016 to March 2017: Tapered Sertraline to 0 @ 10% per month. 

 

We have also been led to believe that there is such a thing as a "therapeutic dose".  This is a lie put forth by the pharmaceutical companies.  At SA we prefer "lowest effective dose".

 

With psychiatric drugs, changes we make are cumulative.  What worked for you before may not work again.  It is better to make small increases, but my thought is that it would be better to wait longer than 7-10 days.  I think 2 weeks would be better because it takes about 4 days for a dose change to get to full dose in the blood and a bit longer for it to register in the brain.  It is a good idea to keep daily notes on paper because you may be able to see improvement which you don't feel.

 

Keep Notes on Paper

Rate Symptoms Daily to Check Patterns and Progress

 

Dr Joseph Glenmullen's Withdrawal Symptoms

Understood. The last dose I took was 2~mg for 2 weeks. I measured it all precisely using a jewellers scale. However, this is definitely not the last dose I achieved stability with. That came maybe 6 months at around 20mg. I'm also not entirely convinced my brain has adapted in the positive sense, because I have not seen any pattern of improvement over time. I remember the blog post that talks about increasing windows and decreasing waves... this was not my experience. Things pretty much only went downhill since I got lower than 20mg. And they went downhill from discontinuation to October, 6 months later. 

I agree that lowest effective dose is smart, and I know most of the receptor occupancy is really occuring in the first 20% or so of most standard therapeutic doses. IT was also my experience that a sub "therapeutic dose" of 25~mg was the most effective I was on. The higher amounts seemed far too stimulating. 

2 weeks also seems reasonable... what amount, in your experience, might it be sensible to increase after 2 weeks?
 

4 minutes ago, ChessieCat said:

 

 

The reason we are urging caution is because we have seen members become even worse when they have reinstated too high a dose.  And it's not that they get worse and then things improve.  Some of them have become worse and not been able to stabilise, and have to endure destabilisation, which can effect various parts of the body, as well as withdrawal.  Some of them become very sensitised where even some foods can cause problems.

 

So it's not simply a case of overshooting and then drawing back a bit.  It could destabilise you and it could possibly last for years.  We are trying to prevent this from happening to you.

How common would you say this is? I already seem to be very sensitive to various foods, supplements, drinks, etc... very delicate. I appreciate your concern. 

This happened to me last time too, the same pattern of sensitivities and intolerances, I have to say, reinstatement of  different SSRI (sertraline from citalopram bfeore) did stabilize me @ about 50mg. 

3 minutes ago, baroquep said:

 

Some people may find relief immediately, for others it could take much longer.  The only way to judge whether it continues to be safe when you are increasing your dose, is to take it slowly so as not to destabilize your central nervous system further.  By increasing in small increments, you lessen your chance of having an adverse reaction.  As ChessieCat mentioned, your central nervous system has likely made some changes since you discontinued previously and in my opinion, 25-30mg is overshooting the target by a large margin.    

 

I'm sorry that this is not what you want to hear, but Surviving Antidepressants recommends a harm reduction approach to tapering and the same applies to reinstatement.  What you are aiming for is relief from your symptoms at the lowest possible dose so that you can function on a day-to-day basis.  I've been tapering (which is really up-dosing in reverse) and will have to say that most of the same rules apply either way.  I attempted to reduce slightly more than 10%, by a minuscule amount and I destabilized pretty badly, was off work for a week and it took me almost three months to start feeling back to normal.  

 

 

Yes, I do agree it can be frustrating, but it's best to be safe rather than sorry if you destabilize further by reinstating too high a dose.

Yes understood...  thanks for your concern and caution. I am very destabilized at the moment so I understand. Totally off all work, exercise, etc, for 4 months. 

[baroquep]

You seem to have a very good understanding of these drugs and how they affect the central nervous system and am confident that you will make the best decision about how you should proceed from here.  Please keep us posted and let us know how you are doing.  

 

13 minutes ago, JamesF said:

I know most of the receptor occupancy is really occuring in the first 20% or so of most standard therapeutic doses. IT was also my experience that a sub "therapeutic dose" of 25~mg was the most effective I was on. The higher amounts seemed far too stimulating. 

 

15 minutes ago, JamesF said:

I already seem to be very sensitive to various foods, supplements, drinks, etc... very delicate. I appreciate your concern. 

This happened to me last time too, the same pattern of sensitivities and intolerances

 

What to Expect in Reinstatement (James Heaney article)

Sensitivity to medications and supplements

[ChessieCat]

26 minutes ago, JamesF said:

2 weeks also seems reasonable... what amount, in your experience, might it be sensible to increase after 2 weeks?

 

Keep notes of your symptoms (worsening/improving) and if you don't feel any or only a very small amount of improvement after 2 weeks please post your symptoms and we can assess the situation and make our suggestion based on that, rather than trying to predict.

 

Please amend your signature to add the dose 2mg instead of 0:  Jan 2016 to March 2017: Tapered Sertraline to 0 @ 10% per month.  Account Settings – Create or Edit a signature 

 

Also it is very important to be patient.  Even a careful taper produces time of discomfort and we need to sit with the discomfort and find ways to get through it, and not fight against it and further stress our CNS and worst of all panic and think that we need to do something to fix it (like increasing the dose or adding in something else) when we it is better to keep as calm as possible.   Do nothing IS doing something.  It is giving our brain the time and environment it needs to do what it needs to do.

 

Acceptance

 

Non-drug techniques to cope

[JamesF]

Hi everyone. 

This is an update 14 days into reinstating sertraline @ 5mg after 7 months off it. 
 

• Days 1-5 were absolutely terrible, I felt very stimulated and sleep became worse during this time. I hit what felt like breaking point a few times and called local mental health crisis teams. Insomnia and lots of internal trembling, like caffeine had been injected into me. Lots of weakness too. 
• Days 5-12 were similar to my baseline prior to reinstatement with a few nights of better sleep than usual. 
• Days 12-13 were slightly better than my previous baseline. 
• Day 14, I'm considering increasing my dose to 10mg today. 

It seems like I had onset symptoms due to the reintroduction of sertraline, but have now stabilised to a better place than before. 

I think if I had been paid too much attention to the negative experiences here, I would have thought these initial symptoms were destabilising my nervous system, making things worse in the long run, and been tempted to quit before 2 weeks.

But from a birds eye view, I think this can sometimes be a case of health anxiety making you scared of introducing anything in the case it might make things worse. It definitely can sometimes, and there's very good reason to be cautious. I have experienced this. But often these symptoms are simply frightening or disabling to experience, rather than explicitly life threatening. So sometimes it's worth carrying on to see if there is an improvement. Everyone is suffering and naturally quite scared of making things worse in this community, which directs the tone of the general dialogue towards one of extreme caution and extremely slow changes in dosage. This is the safest approach, but perhaps not the one that might minimise suffering in each individual case. 

For me 2 weeks of discomfort is well worth the chance at being functional again. Onset symptoms were to be expected during reinstatement, it's just that they felt somewhat extreme when I was already quite fatigued and hypersensitive. I am now very glad I continued. 

I am not encouraging others to do the same. But I have read many accounts of what seemed like encountering difficulties in a few days, then quitting out of fear, rather than giving it a fair trial. 

I will increase my dosage to 10mg in the next few days, when I'm more certain this new baseline is stable. 

Regards, James

[Prince1924]

Hi James, I wish you success in your up dosing of sertraline, so you can get some relief from WD symptoms.

 

However perhaps it would be best to consult with the moderators first, as it seems to me that it's too much of an up dose in one go. ie from 5mg to 10 mg?

 

They would be able to advise you on this. 

 

Good luck

 

 

 

 

 

 

 

 

 

 

[AliG]

Hi James. As you already know -  5mg updose at this time, is not what we would recommend as we choose a harm reduction approach and increasing by this amount risks destabilizing your nervous system. 

 

As it has only been 14 days, it would be preferable to hold for a while ~ fully stabilize, and then if you still want to updose at that point, perhaps you could titrate up slowly by small increments of 1mg. It might take a little longer but it will at least be in a safe, controlled way. There is every reason to be cautious, at this stage. I do hope you reconsider but ultimately it's your choice.

Please let us know what you decide.

[JamesF]

Hi all, I stayed at 5mg Sertraline for 22 days and decided to up dose to 10mg today.

The experience so far has been one of waves and windows, but perhaps increasing windows. Either way, I do not think I am any more unstable than prior to adding sertraline, so this is positive. It just may take me a little longer to reach a therapeutic dose and for neurological changes to occur, given the usual SSRI onset of up to 8 weeks. 

At worst I am having 1-2 hours sleep on a bad night, at best, a stretch of 5 hours. But these stretches of sleep happen perhaps once a week. Symptoms wise it is mainly feeling weakness and jitteryness right now. I'm currently housebound with the exception of very short walks when there's a window, which might occur once every 2 days. But it is easy to push too hard. Hoping this will all improve with more sertraline.

I'm choosing to jump to 10mg since it's a much smaller jump than from 0 to 5mg on the receptor occupancy vs dose relationship:


Reference: http://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.161.5.826

As in the graph, 0 to 5mg = 35%~ occupancy difference. Whereas 5 to 10mg = 18%~ (53% - 35%) receptor occupancy difference. Therefore, this jump should be about twice as easy to stabilize on than 0 to 5mg was. And 0 to 5mg was okay. 

I have also been holding steady on a dose of 1mg diazepam for the past 6 weeks. The reason for staying on is to hold everything constant and not add more withdrawal issues to the mix. I will not adjust this until finding a therapeutic dose of sertraline and having a more stable base to withdraw from it. It's regarded as the dose to jump off of in the benzo "Ashton Manual", or 0.5mg at lowest, so I'm expecting this to be reasonably smooth if I attain stability on Sertraline. 

[JamesF]

An update 7 days into a reinstatement up-dose to 10mg Sertraline, after holding 22 days on 5mg. 

Been feeling terrible the last few days. A very heavy, nauseating kind of tiredness combined with an inability to sleep. Sleep also seems toxic in the sense that I am waking up feeling worse than when I went to sleep. This is worse the more little chunks of sleep I have, and better if I can sleep in fewer. It is like the waking response is stressful to the nervous system, so the fewer times I go through it the better. 

The first day I up-dosed to 10 was probably my best day in 3 months. And I was very hopeful then that reinstatement was exactly what my body needed. But I've been feeling progressively worse each day this week, so I'm wondering if these are simply the onset effects I need to ride out. Part of the problem with being ill in this way is that you don't have certainty about causes or timelines. E.g. What is withdrawal? what is underlying? what is an onset effect? what is a side effect? what is biological? what is psychological (even if first caused biologically)?

I'm also considering going to a therapeutic dose fairly soon, around 25mg or possibly even 50mg. I realised I don't mind going on this stuff again and seeing if it will work at a clinical dose level. The reasons for this is essentially that it would be the only substance that makes sense to try, given that my brain is used to it and reintroduction would also alleviate withdrawal. 

I have also been holding on diazepam 1mg for 7 weeks now. Part of me is wondering whether this is contributing to how I feel. There may be issues with tolerance and side effects over time. For instance, it probably can't help with feelings of weakness and shakiness. Likewise, there's some reason to believe it might slow down adaptations or effects of SSRI introduction by inhibiting neurogenesis. Regardless, jumping off it is likely to produce more instability, so it seems much wiser to hold steady with it until on a therapeutic dose of sertraliine. 

Outside of medication, I've also read a few books on CBT for insomnia this week. It strikes me that it's very easy for these pharmaceutical causes to quickly become psychological problems. For instance, after sleeping so badly for so long, I definitely developed a fear of not sleeping (how to make it through the following day?). I also began to associate bed with anxiety, given that I stayed in it agitated and unwell trying to sleep. I also made a habit of getting up and eating in the middle of the night, since I perceived eating to sometimes diminish particularly intense symptoms. Possibly because it's simply less stressful for the body to have food in the stomach, rather than go into fasting mode. 

So even if psychological patterns around sleep were not the first cause, it seems really important to retrain them as best I can. Outside of sleep too, I also became very fearful of leaving the house due to episodes of profound weakness, dizziness, energetic crashes, etc. In some ways this is a sensible precaution of the body, but I'm certain fear can extend much further than it is necessary. Overall, recovery then seems two-fold: introducing the medication to stabilise neurochemically, and rehabilitating from all of the negative patterns that were established in withdrawal. But to do this slowly and gently, because expecting too much change is also unwise during periods of instability


If anyone's interested. The books I read on CBT for insomnia were very insightful. The most important principles I learned are as follows:

 

1. Get up at the same time every single day (after which you do not try to sleep again). 
2. No napping. 
3. If you're awake in bed more than ~20 minutes, get up and do a low exertion and low light activity such as reading. It's better to have an activity with a definite finishing point, like 100 pages of the book, or cleaning a certain room.
4. Return to bed on sleep cycles (every 90 minutes) or simply when feeling sleepy again. 
5. The same sleep window every day. E.g. 7.5 hours. It's not said within the CBT books, but within psychiatric drug withdrawal, I think it's good to be very gentle with reducing this window. For instance, allowing yourself 10.5 hours or even 12 hours within which you're allowed to sleep to start with, while you develop the other patterns on this list, then to very gradually reduce it to say 9 hours. Restricting sleep too much at the start can definitely cause a profound stress reaction, sleep deprivation or intensification of symptoms, which is definitely not what we want.In my case, I'll sleep for 1.5 or 3 hours, then won't be able to sleep again for many hours, so I'm keeping the window fairly large at the start then gradually reducing it. 
6. If you're spending significant time awake during this sleep window, reduce it by 30 minutes for a few weeks. Do this again until sleeping 90%+ of the window. But always keep wake time the same. Apparently 90% of insomniacs can significantly improve their condition simply by reducing their total time in bed. 
7. If you're spending all your time asleep during this sleep window, yet not feeling refreshed, increase it by 30 minutes for a few weeks. Stop if not sleeping 90%+ of the window. But always keep wake time the same. 
8. Fairly obvious sleep hygiene rules like no electronics or screens in bed or near bed time, no intense light, no strenuous activities prior to bed, etc. Whatever is associated with wakefulness needs to be totally removed from the room your sleep in.
9. Interrupt any rumination or negative thought loops! For instance, if you'd usually stay in bed becoming more anxious about not sleeping, slice through this loop by getting up and immersing yourself in another activity. On the other hand, positive thought loops can also be cultivated using techniques like affirmations (e.g. I sleep well throughout the night, it doesn't matter exactly how much I sleep, etc), EFT, hypnosis, etc. 
10. Have a relaxation routine you do every night prior to sleep. This can be hypnosis, meditation, a bath, some breathing exercises. The key is just that you do it every single day for at least a month so it has time to both work and be associated with winding down into sleep. On the other hand, trying lots of different techniques for only a few days would be negative, developing thinking patterns like "nothing works" when the truth is that it has not been given a fair trial. 

 

 

That's the crux of it. For me, I had the attitude that my sleep was simply awful due to pharmaceutical causes and withdrawal syndrome. But I can see now that behaviourally, I contradicted almost all of the rules above. I definitely lay there for hours trying to sleep, further associating restlessness and anxiety with bed. I definitely fear not sleeping. I definitely eat too close to sleep or in the middle of the night. I definitely used to remain in bed while reading or listening to something if I didn't sleep. I definitely have a varying wake time, bed time and sleep window. Some of these felt like being kind to myself (e.g. "I haven't slept at all, I'll try to get a few hours this afternoon), but I can see now that this just perpetuates an irregular or unhealthy rhythm. 

I don't think it is a complete solution, but if I can get even 10% improvement by following all of these rules, that would be a huge improvement. 

Hope that was helpful to anyone reading this too

Warm regards, James

[JamesF]

Came across an interesting study:

http://www.sciencedirect.com/science/article/pii/S0028390813001676?via%3Dihub
 

Quote

•Treatment with fluoxetine or diazepam reduces anxiety/depressive-like behaviour.

•Treatment with fluoxetine alone restores hippocampal neurogenesis.

•Treatment with fluoxetine alone increased hippocampal BDNF levels.

•Positive effects of fluoxetine are prevented by co-administration with diazepam.

 

 

Taking benzodiazepines directly inhibits the positive response to SSRIs. This could be something that's very relevant to many people who try to reinstate but are on benzos. 

I'm wondering if this is why I'm having a delayed response to reinstatement. I resinstated 4 weeks ago but I've also been holding steady on diazepam 1mg for the last 6 weeks. Perhaps a low dose such as this is enough to inhibit a positive response. If it's anything like SSRIs, small doses can have powerful pharmacological effects as measured by receptor occupancy.

If there's reason to believe that benzos can impair neurogenesis and neurological adaptations to SSRIs, then there's also some basis that using benzos can impair healing from SSRI discontinuation. 

This could apply to many people and determine the order it might be wisest to withdraw from multiple psychiatric drugs. 

 

Given all this, I'm thinking it might be a good idea to hold steady at my current dose of sertraline and taper off diazepam. 

[JamesF]

So far my reinstatement timeline has been:

• 23 Oct 2017 5mg
• 15 Nov 2017 10mg
• 23 Nov 2017 15mg

Every time I've increased my dose, I'm feeling slightly better.

I estimate symptoms are perhaps 50% better than before I reinstated sertraline now, which is huge. I am sleeping an average of 5~ hours of interrupted sleep through the night now, compared to just a few before reinstatement. The feeling of chronic exhaustion has reduced slightly due to improved sleep. I think this was key, because lack of sleep makes every symptom worse.

As well as this, the extreme anxiety awakening (or adrenaline flood) response I was getting multiple times in the middle of the night has diminished. I can blunt it fairly quickly by eating something, and often go back to sleep within an hour. In the past few months, if I awoke during the night it was a 3~ hour procedure of eating and relaxation exercises to bring myself back down again to a state where sleep might be possible. 

I've also been able to leave the house a few times this week and not feel terrible, something I've not been able to do in months. Hypersensitivity to noise and light has also decreased.  Small walks are also more comfortable than they were. 

My body also seems to be regulating temperature much better. There were several months during withdrawal where a very slight excess heat or  cold were absolutely unbearable. On a hot summers day I would be hiding in a bathroom crouched on the floor, a fan blasting at me and constant cold flannels to my face. Slight deviations from the optimal temperature made me feel incredibly physically nauseous. Likewise on colder days I had to get a triple duvet + blankets, or literally hide inside a blanket all day. Signs of a very poorly regulated nervous system I guess. Often my heart rate would be very slow and I'd be extremely cold, and feel like my body was literally grinding to a halt, which definitely amplified anxiety. It also led to lots of checking of my temperature and heart rate throughout the day, then concern when they inevitably were a lot lower than they should be. All this is better now, I feel warmer and I'm not checking much at all. 

Continuing symptoms are: Extreme shakiness/trembling when lying down or upon waking in the middle of the night. Easily hitting a fatigue wall if I exert myself too much or sleep too little, this results in heightened anxiety, less chance of sleep, hypersensitivity, trembling, etc. Feelings of weakness and dizziness. Feelings of unreality and depersonalisation. 


I'm thinking about upping to 25mg today. This is because I've felt more stable with each increase, and because jumping 15 to 25 is a much small % receptor change than 0 to 5mg on the graph I attached a few posts. My plan for now would just be to stabilise indefinitely on 25mg, then rehabilitate myself (ie get myself gradually building up walking, leaving the house, doing some work, etc).

 

During withdrawals things got so bad that I really did forget how to live a normal life, and I developed a huge amount of fear about ordinary things like going for small walks because they would intensify my symptoms so much. I see how it's necessary to start doing all these things again and rebuild a new attitude towards them.

 

[JamesF]

Wondering if any mods can give me some advice @Altostrata @ChessieCat @baroquep

4 days after my last reinstatement increase to 15mg from 10mg, I started getting tinnitus. This has increased in loudness every day since then and is especially intense at night, like very loud white noise on the radio. It started only at night and now I am noticing it in the day too. 

Previously, I had only experienced this at 100mg sertraline. It disappeared completely as I got to about 70mg or so. 

But now it seems to be occurring at a much lower dosage level. I'm a little confused as to whether this might simply be onset effects and the period of adjustment to the medication, or if I should take it as a sign that I'm taking too much and reduce the dosage level.

It's a symptom that could certainly drive you insane if it was persistent, so I want to be very cautious. Thank you 

[JamesF]

Also wondering if anyone could advise about how long to wait before reducing diazepam?

I think it might be wise for this to be my next step after stabilizing on sertraline. 

Since taking diazepam, it's only had a negative effect on me, causing paradoxical insomnia, agitation and significant rebound anxiety. I only remained taking this low dose of 1mg for the past 3 months out of fear of destabilising myself more while I was about to introduce sertraline. Studies also show (link a few posts above) that benzos directly inhibit any positive effect of newly introduced SSRIs in rodents, so there's another reason to get off. Perhaps reinstatement won't be fully effective until removing diazepam.

 

[JamesF]

I'm going to experiment with reducing diazepam to 0.5mg for a few days. 

My intention had been to keep it stable for a few weeks until I had more fully stabilised on Sertraline. However, I keep noticing that I feel worse after I take my daily dose of diazepam, more agitated, more trembling, more weakness. And also that the closer I take it to sleep, the worse my sleep is. 

Of course, this doesn't imply I won't feel even worse by not taking diazepam. But I think it might be the case that it's having a paradoxical reaction and worsening symptoms. Since the hours after taking it should otherwise probably be the time of day I feel best.

Either way, reducing it for a few days and seeing if there's any improvement should be insightful and relatively low risk. If there's improvement, I'll maintain it at 0.5mg for a while.

[JamesF]

9 hours ago, FSL said:

Hi JamesF!

 

The less you change dosages at this point the better. If you decrease the dose of diazepam your nervous system will have one more thing to have to adjust to. 

 

About the tinnitus it will eventually go away.

 

Invest your time in activities to relax your body and mind, and try a little exercise, even if it's a slow walk around the block. Solving puzzles or other mental activities can also help your mind distract itself.

 

About the medications as I said I would try to make it stable. And I mean waiting for at least a month.

 

I know the temptation of reducing this or increase that is huge but it's risky too. Please consider that.

 

FSL

 

 

 

You were right.

 

I took half my usual dose of diazepam yesterday and quickly descended into hell.

 

Was completely unable to sleep and extreme tinnitus and anxiety. Now I feel like I've "crashed" and set myself back many days, as well as ruined my sleeping pattern.

 

I see that even if taking it has a negative effect, instability has a far worse one.

 

The temptation to reduce was great. It felt like it might even be the right choice with the paradoxical reactions I was getting. I was too quick to dismiss wisdom here as soon as I could rationalise that it was a good idea.

 

I think there's bias here too because I really really want to get off diazepam, since I know it's highly dependence and tolerance forming, contributes to fatigue, and I know how much I've already suffered with SSRI withdrawals. 

 

But patience is also incredibly important. Since instability can trigger a spiral that takes far far longer to get out of than the time the body had a reduced dose.

 

Lesson learned.

 

I took the other 0.5mg half of my usual daily 2pm 1mg dose in the middle of the night and will resume as normal tomorrow. 

 

It was only a ~16 hour reduction so hopefully I'll get out of hell and back to my baseline fairly soon.

 

 

Thanks again for reminding me to stay stable and patient.

[RachelSusan]

Hi James,

I'm glad you found us but very sorry for the reason you are here.  I too am a Zoloft crash survivor that then had to reinstate, so I am following your posts with interest.  Based on the way you write and the research you do you are clearly a very intelligent person so I know you will find your way to relief. Please keep us informed as to how you are doing. People here care, also we learn from what others do, both the successes as well as times when they have to change course. I am rooting for you to find relief quickly and as painlessly as possible.

Rachel

[PoetJester]

hi James

 

i posted again on your symptoms and self care topic about food gorging.  i don't know if you had a chance to look at it.  it's a quite long post and rambling as i took seroquel the night before to sleep and felt like i had been given a blow to the head.  anyways, i hope you are having a tolerable day.

 

Derek

[JamesF]

On 12/11/2017 at 8:08 PM, FSL said:

yes at this point any change has to be minimal and well pondered. 

 

take care

Yes, noted.

 

 I stupidly still gave in to my need to change doses a tiny amount and went to 0.85mg diazepam. It's not as drastic a drop as the 0.5mg I tried to do, but it helps psychologically to feel like I'm getting somewhere... I say stupidly because even that 0.15mg drop was felt as a big impact on the system.
 

On 12/13/2017 at 4:20 PM, RachelSusan said:

Hi James,

I'm glad you found us but very sorry for the reason you are here.  I too am a Zoloft crash survivor that then had to reinstate, so I am following your posts with interest.  Based on the way you write and the research you do you are clearly a very intelligent person so I know you will find your way to relief. Please keep us informed as to how you are doing. People here care, also we learn from what others do, both the successes as well as times when they have to change course. I am rooting for you to find relief quickly and as painlessly as possible.

Rachel

Thank you Rachel. Can you post a link to your intro topic? 

Would be very curious to read more. How long were you on Zoloft (and other SSRIs?)

I wish that research and reading did have a big impact on finding relief. Of course knowing things like how to taper sensibly is important, but I definitely wore myself trying to find solutions in the past. I became psychologically quite desperate and obsessed with finding a clear solution to my woes. I wasn't necessarily healthy. It seems that more important is simply patience and acceptance. Trusting that the body and mind are healing. And accepting whatever may come as temporary storms. 
 

On 12/13/2017 at 7:29 PM, PoetJester said:

hi James

 

i posted again on your symptoms and self care topic about food gorging.  i don't know if you had a chance to look at it.  it's a quite long post and rambling as i took seroquel the night before to sleep and felt like i had been given a blow to the head.  anyways, i hope you are having a tolerable day.

 

Derek

Hello Derek,

I read through your post. Apologies that I did not have the mental energy to read or respond to any messages (on here and personally) when you first posted. 

I am sad to hear of your ongoing suffering and difficulty finding solutions. I know very well that worse than suffering is not knowing how to fix it, and not getting answers from medical professionals or any other source. Even psychiatrists, the professionals who prescribed the pills that led to the damage, do not themselves acknowledge withdrawal. And in the case they do, it is vastly minimised. 

Being unacknowledged in suffering and unaware of a clear solution gives a feeling of loneliness and despair nobody should have to go through.

Added to this of course, is the fact that family and friends will not understand, since it is so far from their experience of life. Likewise, a lot of this suffering is very internal and out of sight. There are no gaping wounds and you're not in hospital, so looking like you're reasonable well conceals the fact that you are not. 

I hope you find some solutions soon and that your body/mind may heal more this upcoming year.

Post a link to your intro topic and I will read it. 

[RachelSusan]

Hi James,

Find my story here:  http://survivingantidepressants.org/index.php?/topic/12649-rachelsusan-my-zoloft-story-on-off-reinstated-in-trouble/?hl=rachelsusan

 

I was only on Zoloft for about 5 to 6 months.  I went cold turkey in summer of 2016 and got physically very sick.  After I reinstated I got some relief but it took months and of course my doctor had me on a rather quick taper after reinstating.  I never really stabilized during that first period of time. I did finally stabilize at the end of 2016.

12 minutes ago, JamesF said:

I wish that research and reading did have a big impact on finding relief.

Your quote above is right on the money.  So very true.  We keep looking for that little piece of information that would fix everything, or at least I did. For me the best thing I did for myself was just stay at one dose until all the symptoms went away.  Prior to figuring that out I keep tapering then up-dosing just trying find some place I could land that would give me relief. Sadly I was also put on Gabapentin to try and help with the withdrawal. I will have to wean off of that eventually, but not until I'm done with the Zoloft.

 

At the moment I am stabilized however even using the safe guidelines suggested on this site I will have a return of symptoms now and then when I go too fast for me.  We each seem to have a difference tolerance for this sort of thing and I have found I need to go a little slower than even the advised guidelines. 

 

I hope for better days and quick healing for you.

 

RS

 

 

[JamesF]

As an update. 

I reduced Diazepam to 0.85mg on 12th December 2017. This was perhaps unwise, because it created significant sleep disruption.

 

Today was especially awful, I did not sleep at all until some time mid afternoon, when I had a brief and restless "toxic" nap. That's a term I stole from another forum (benzo buddies) because it perfectly describes this phenomena: a nap where you feel significantly worse for having had it. I woke up this afternoon trembling, nauseated, full of grating agitation and fear. The feeling I woke up with is still with me now, many hours later. Today was totally lost to suffering and I felt desperate to survive and keep my sanity all day.

Factors I have identified that make toxic naps worse are:

• Sleeping relatively close to a dose of valium. The closer to the dose, the less refreshing, and even negative/toxic the sleep will be.
• Not eating before bed. This seems to lead to sleep interruption due to hunger, low blood sugar or possibly stress hormones that are raised during a fasting state.
• Sleep interruption for any reasons. E.g. changes in temperature, noise, light, etc. 

The most important thing for me is to make sure the first "chunk" of sleep I get is as long as possible. If I sleep 4.5h+ in the first cycle, things tend to be manageable the following day. If it's <3h, 1.5, or even about 0.5h the last 24 hours, it leads to a day of extreme suffering. Inevitably I'm unable to get back to sleep with agitation and exhaustion spiralling out of control until the next decent chunk of sleep happens. 

 

My sleep pattern is now completely disrupted and I'm letting go of the idea of being strict with it for now. Forcing myself to go to bed at a particular time seems unwise and could lead to more restlessness, waking up after a very short period with toxic effects, etc. I'm just going to wait until I feel like I can sleep for a decent amount, to follow what my body wants to do. 

 

On the positive side, I have had very brief windows (an hour or two) of feeling better than I have in about 6 months this past week. They have passed quickly. They have often passed and I've headed straight into hellish symptoms that are reminiscent of my worst possible days. But the windows have been there, which gives me a great deal of hope. 

It's beautiful and amazing just to have a reduction in the most hellish symptoms. It was so constant and unremitting for so many months, I completely forgot what life was like when you don't feel like you have to fight for your survival every moment of every day. 

I've been able to cook for myself almost every day, have gone for walks, except this temporary set back the last few days. Both would usually be completely impossible a few months ago. I was incapacitated. On an average day, I am perhaps 25% better than 2 months ago. During a window, I am perhaps 60-70% better. Although the 60% is still very dysfunctional.

The patterns of symptoms has also shifted. Trembling, exhaustion and agitation have reduced slightly overall. The very loud tinnitus I developed when reinstating sertraline has also slightly reduced over the last week, which gives me hope that it will stop or diminish to tolerable levels. 

On the other hand, some symptoms like headaches, nauseated feelings, cold intolerance, have increased or emerged. I assume this might have something to do with the onset effects of sertraline, or withdrawal effects of diazepam. I won't analyse it too much and will try to trust that they will improve as time goes on.


Note to self; When feeling good, I must remember to keep everything stable for at least a few weeks. Feeling good is rare and must be enjoyed, rather than seen as a reason to start changing doses. Every time I have attained some stability, I've given into the temptation to change something. It has been disruptive and I have not known how good I might otherwise have felt if I had left it. 

I liked an analogy someone on another forum made. He described attaining stability as gluing together a model aeroplane. After you have applied the glue, you must wait for it to set firmly before you move any parts of the aeroplane. Moving the plane during the drying process might lead  to wings or other parts breaking off, because the glue remains very fragile up until the point it is completely set. In a similar way, we must have the patience to wait until our nervous system is completely stabilised before changing anything.

[nz11]

33 minutes ago, JamesF said:

Feeling good is rare and must be enjoyed, rather than seen as a reason to start changing doses.

Great insight.

 

You sure are thorough in your record keeping

[JamesF]

Felt very hopeless today.

 

I didn't sleep and was unwell, so ended up being too exhausted to join my family for Christmas dinner. I had to try to sleep instead and ate a plate on my own later on.

 

Then, the simple activity of wrapping up presents really wore me out and made me feel super shakey and disorientated.

 

It's times like these it really hits home how limited I am. My SSRI withdrawal looks and feels like chronic fatigue, but way more unpredictable. It's very difficult to know it's not certain that id be able to join my family on Christmas day, and in general it feels awful to run out of the energy I'd like to use to make others happy. It probably seems selfish to friends and family a lot of the time, but the inner reality is that there's just not much energy to do more than try to survive sometimes. It's very hard to explain.

 

Things are tough because I'm not sure what's causing this latest blip. I had a pretty awful week and regressed a bit. I went from daily walks to mostly hiding away in the house and only being awake in darkness. My sleeping pattern is totally broken and I don't know how to improve it.

 

I assume 15mg sertraline is fairly stable by now. Perhaps this latest downswing has been caused by the reduction I made in valium. I'm not sure though, and a lack of clarity is a problem.

 

I'm also not sure how much of this has developed into psychological habits of anxiety and fear. When at my worst, I developed major anxiety about any exertion (since it made me feel ill or crash). I developed a lot of anxiety about both not sleeping (which made everything worse). And more strangely, anxiety about sleeping. I used to feel bizarre paraesthesias, whole body numbness, trembling, very low body temperature and slow pulse. It all gave me the idea that my body was shutting down and I'd die in my sleep. All the symptoms made this very convincing, it really did feel like I was on my way out.

 

It's also true that I've got used to inactivity, sleeping at odd hours, staying away from light, noise, and most other stressors. It's really really hard to return to a normal life. I'm not quite sure how to do it. I don't know how to get going.

 

I wonder to myself what would happen if I didn't have a home or the ability to stay safe. What if I had to work 16 hours day, or ended up on the streets, or had to provide for children? Would i be able to get on with it anyway, would I somehow summon the energy and healthier habits?

 

All the evidence seems to the contrary. I keep crashing on minor exertion. But I don't know. Maybe my current lifestyle is a product of the peak of my illness, but is simply not the way I am going to heal. I need to get myself going, to transition towards normality, normal rhythms and activities. I guess I just don't know how right now. I've spent 6 months hiding from the world, trying to survive and keep my sanity almost every hour of every day.

 

Jay

 

 

 

 

 

 

 

[JamesF]

Feeling more stable the last few days.

The very loud tinnitus that began on my last sertraline updose has also reduced perhaps 50%. A sign of nervous system stabilisation? 

The only change I've made is taking sertraline before bed as an experiment. I was previously taking it in the morning. I've slept better the last few days. Maybe this is helping. Dreams have certainly been more vivid. Or it could just be that diazepam withdrawal symptoms have diminished. 

Right now is the point I would usually dive straight into another dose reduction. But from the many bad experiences, I'll learn the lesson and maintain here for at least a week, there's no rush to the finish line. 

My current biggest problem to solve is returning to a normal sleeping pattern. The force of habit from so many months of nights without sleep, disrupted sleep, and sleep at odd hours is strong. I'm reading the CBT sleep book again to make sure I'm doing everything to maximise the chance of good rest. It seems key to get consistent rest. All of my symptoms are at least 50% improved after a decent nights sleep. 

[JamesF]

I've almost sorted out my sleeping pattern. I was sleeping at ridiculous hours due to symptoms, now I'm almost at a 10pm - 6am window. Going to do my absolute best to maintain this.

 

Sleep quality is incredibly important to healing. And regularity of sleep and waking times are among the biggest determinants of sleep quality.

 

Also, I took a multivitamin today and don't seem to have had a negative reaction. Previously I took them and felt extremely agitated. This seems to be a positive sign that my nervous system may be settling down.

 

Many symptoms, primarily centered around fatigue, are ongoing. Tinnitus had continued to diminish slightly. A very long way to go. But all in all, things are looking hopeful.

[RachelSusan]

James, great news about your sleep. You are so right about how important sleep is to healing. Congratulations.

Rachel 

[JamesF]

 

 

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

[RachelSusan]

Jay,

Thanks for posting.  I was wondering how you were doing.  It sounds like a lot of improvement.  Congrats.

RS