Hey everyone,

I can't believe I'm here tonight to share my story with more clarity I had compared to the last six months from coming off my medications.

I have been on escitalopram (lexamil) from 2017 - 2026 and stopped taking 5mg on March 13th.

While taking the medications I gradually developed severe emotional blunting, lack of libido, loss of attraction and connection and a range of physical symptoms. I've associated it with stress and as it got gradually worse it took me a long time to suspect my medications.

I've tapered from 40mg to 5 mg in a course of 4 months. I felt strange for the first two weeks with each taper and always stabilized.

I was on day five on 5mg of lexamil and I've been using 50mg Quetiapine for a while which I don't hold the exact date. I went to my appointment and it was said that I can just stop the 5mg which I did. This was the 13th of March.

The first three days were normal and on the 4th day I started getting brain zaps, sensory overload, light sensitivity and the list goes on and I have been logging each symptoms from that day up until today.

My sleep and nervous system became severely destabilized, I've experienced wide spread burning sensations upon waking up after being a little active the previous day, my muscle rigidity guarding got increased, stretching produced flare ups which caused me to lay awake at nights and my nerves felt like there was an electrical current running through it, quetiapine didn't help and neither did pregablin which I need to add to the signature, pins and needles, poor stress tolerance, DP/DR and a profound loss of pleasure and reward.

I was prescribed venlor (Effexor/venlafaxine). I took it three months after being off 5mg lexamil(lexapro/Escitalopram) because I was desprate to make the symptoms go away. One week 75mg and then straight to 150mg. I need to add this to the signature

I felt a strong serotonin activation which was the same feeling I experienced with the increase to 30mg Lexamil and then later 40mg lexamil and I thought this is not right and why didn't I bring it up before.

When I reach 150mg it brought a whole new onset of symptoms which include

• an intense inner sense of restlessness approximately 2 - 3 hours after taking the medication,

• pulling the lip

• flaring of the nostrils

• Running to the toilet frequently

• Worse libido which I didn't thought was possible

I tapered down back to 75mg and then lowered the beats by eye sight and I stopped.

That brought a new onset of symptoms

• Feeling tension building up and jerking the body

• Worse tinnitus

• Worse head pressure

• The list was so long and it felt like one global diffused state.

Long story short I went to a different psychiatrist and explained my symptoms and they've put an emphasis on the nerve related issues I've been experiencing. I walked out with a prescription which was pregablin, melatonin and lamictamal which I was highly afraid of at this point as I don't know what was going on and my suspicion stayed with the medications. I took it again out of desperation and I wish I didn't. It was not as severe but I logged it and sent it through to the psychiatrist and I was taken of lamictal and stayed on pregablin 150mg and I'm almost down to 10mg or so today.

The wide spread pain and burning sensations have mostly disappeared. With constant Mobility/flexibility and massage therapist (Physiotherapist) my muscles have softened up considerably.

Month five since off Lexamil was the first time I experienced a window. It was short lived and the wave would take over which is when the severe light headedness started acting up, tinnitus, head pressure, intolerance for external input, etc which is calming down as I'm reaching month 6 now.

I'm not sensitive to supplements but I doubt they are actually helping

• Lion's mane

• NAC

• OMEGA 3 Fish Oil

• Magnesium Glycinate

• Vitamin B1, B6 and B12

• Co-enz

• Vitamin D and K

• And ivermectin (someone suspected long covid but I doubt it)

It has been a bizarre journey and what kept me going was Journaling and comparing it each week. I would see a small improvement in one area and I took it as a positive sign.

Positive changes

• Less intense headaches

• Low but better stress tolerance

• I can crave food or soda

• Flexibility increased

• Pins and needles are less intense

• Exercise tolerance is increasing

• Windows are increasing and I'm going out and doing more even if it's small tasks

• Burning sensations upon waking up is gone

• Etc

When a wave appears I've noticed

• Headache

• Muscle soreness

• Disconnection from others and myself

• You tend to wonder about reinstating (which is getting less frequent)

• You wonder if you have missed an underlying neurological condition (less frequent today)

• Sensitive to screens (not as bad as it use to be)

• Etc

What is persistent is the emotional blunting, connection/attraction and insomnia which I suspect has to do coming off quetiapine last month.

Quetiapine (Seroquel)

• I came off it last month when my dose ran out

• I need to check my logs but I think that is when I experienced my sleep becoming shorter

• 2 - 4 hours of sleep

TLDR

• Medication dosage increased over the years as their effects worn out

• More adverse effects stacked ontop of another

• I tappered too fast and experienced brain zaps, sensory overload

• Bad experience with new medications

• Nervous-system has calmed down where I can now experience windows

• Emotional numbness, loss of connection/attraction, fragmented sleep still present.

I'm starting to loose focus. I felt like I started off well and as I went on I lost concentration and motivation.

What I want to leave you with is that it does get better. Small steps. Be kind to yourself in this process. You deserve healing.

Welcome to the forum!

 

This is a volunteer-run, community forum aimed at helping those who are tapering and/or experiencing difficulties with psychiatric medications and withdrawl syndrome. We are not medical professionals and cannot offer medical advice. We simply offer support and opinions which you could use as talking points with a medical provider knowledgeable in withdrawing off psychiatric medications.

 

Please familiarise yourself with the forum rules and the disclaimer located here: Guidelines

 

Please make sure your signature is kept up to date with your drug history. This will allow members to see some basic information about your drug history and situation so that they may help you best. Information on how to do this is located in the FAQs section above, but here is a direct link: Update Signature

Once this is done, future posts made by you will have this signature turned on by default. For this reason please keep it clear but condensed as possible.

Please use the format outline here Preferred signature/drug history format

I'm so sorry to read about the tough time you've had recently you will find plenty of support here for sure.

9 hours ago, Nicolaas said:

Hey everyone,

I can't believe I'm here tonight to share my story with more clarity I had compared to the last six months from coming off my medications.

I have been on escitalopram (lexamil) from 2017 - 2026 and stopped taking 5mg on March 13th.

Glad you found us :)

9 hours ago, Nicolaas said:

While taking the medications I gradually developed severe emotional blunting, lack of libido, loss of attraction and connection and a range of physical symptoms. I've associated it with stress and as it got gradually worse it took me a long time to suspect my medications.

These are very common side effects and certainly the reason many want to come off these drugs.

9 hours ago, Nicolaas said:

've tapered from 40mg to 5 mg in a course of 4 months. I felt strange for the first two weeks with each taper and always stabilized.

When tapering, especially after long term use, we advise you reduce no more than 10% per month of your previous dose or follow a hyperbolic taper schedule, listening the body and adjusting as you reduce. Although this was a very quick taper, it is good you felt you stablised between drops.

Tapering Information

9 hours ago, Nicolaas said:

was on day five on 5mg of lexamil and I've been using 50mg Quetiapine for a while which I don't hold the exact date. I went to my appointment and it was said that I can just stop the 5mg which I did. This was the 13th of March.

It's common for doctors to not realise how potent these 'low' doses are, and suggest stopping them abruptly.

9 hours ago, Nicolaas said:

The first three days were normal and on the 4th day I started getting brain zaps, sensory overload, light sensitivity and the list goes on and I have been logging each symptoms from that day up until today.

A delay in onset of symptoms is common, sometimes it can be weeks before symptoms show.

9 hours ago, Nicolaas said:

My sleep and nervous system became severely destabilized, I've experienced wide spread burning sensations upon waking up after being a little active the previous day, my muscle rigidity guarding got increased, stretching produced flare ups which caused me to lay awake at nights and my nerves felt like there was an electrical current running through it, quetiapine didn't help and neither did pregablin which I need to add to the signature, pins and needles, poor stress tolerance, DP/DR and a profound loss of pleasure and reward.

9 hours ago, Nicolaas said:

I was prescribed venlor (Effexor/venlafaxine). I took it three months after being off 5mg lexamil(lexapro/Escitalopram) because I was desprate to make the symptoms go away. One week 75mg and then straight to 150mg. I need to add this to the signature

I am sorry to read. Once the nervous system is destabilised we see adding in new drugs often makes everything worse. We strongly advise against this.

9 hours ago, Nicolaas said:

I felt a strong serotonin activation which was the same feeling I experienced with the increase to 30mg Lexamil and then later 40mg lexamil and I thought this is not right and why didn't I bring it up before.

As I said before, when the system is irritated, more drugs just makes things worse. It's normal to go looking for relief and doctors are only too happy to hand them out, however it is not the way to recover from all this.

9 hours ago, Nicolaas said:

When I reach 150mg it brought a whole new onset of symptoms which include

• an intense inner sense of restlessness approximately 2 - 3 hours after taking the medication,

• pulling the lip

• flaring of the nostrils

• Running to the toilet frequently

• Worse libido which I didn't thought was possible

I tapered down back to 75mg and then lowered the beats by eye sight and I stopped.

That brought a new onset of symptoms

• Feeling tension building up and jerking the body

• Worse tinnitus

• Worse head pressure

• The list was so long and it felt like one global diffused state.

Reducing the dose would have been helpful as you found out, reducing the hypersensitivity you were having, unfortunately WD is still a factor and stopping completely has added to the problem.

9 hours ago, Nicolaas said:

Long story short I went to a different psychiatrist and explained my symptoms and they've put an emphasis on the nerve related issues I've been experiencing. I walked out with a prescription which was pregablin, melatonin and lamictamal which I was highly afraid of at this point as I don't know what was going on and my suspicion stayed with the medications. I took it again out of desperation and I wish I didn't. It was not as severe but I logged it and sent it through to the psychiatrist and I was taken of lamictal and stayed on pregablin 150mg and I'm almost down to 10mg or so today.

The wide spread pain and burning sensations have mostly disappeared. With constant Mobility/flexibility and massage therapist (Physiotherapist) my muscles have softened up considerably.

Ok, well I think it is probably best you hold that dose for a while, stopping it completely may make things worse.

It's good reducing the dose down has made things much better for you,

9 hours ago, Nicolaas said:

Month five since off Lexamil was the first time I experienced a window. It was short lived and the wave would take over which is when the severe light headedness started acting up, tinnitus, head pressure, intolerance for external input, etc which is calming down as I'm reaching month 6 now.

Its very positive you have had a window, this is common in WD, healing from this is very non linear, but the window is a good sign this process has started already for you.

9 hours ago, Nicolaas said:

I'm not sensitive to supplements but I doubt they are actually helping

• Lion's mane

• NAC

• OMEGA 3 Fish Oil

• Magnesium Glycinate

• Vitamin B1, B6 and B12

• Co-enz

• Vitamin D and K

• And ivermectin (someone suspected long covid but I doubt it)

We have given you some information about supplements below, some are sensitive, some are not. Generally we advise against taking them.

Medications, Supplements and Other Substances in Withdrawal

9 hours ago, Nicolaas said:

It has been a bizarre journey and what kept me going was Journaling and comparing it each week. I would see a small improvement in one area and I took it as a positive sign.

Positive changes

• Less intense headaches

• Low but better stress tolerance

• I can crave food or soda

• Flexibility increased

• Pins and needles are less intense

• Exercise tolerance is increasing

• Windows are increasing and I'm going out and doing more even if it's small tasks

• Burning sensations upon waking up is gone

• Etc

When a wave appears I've noticed

• Headache

• Muscle soreness

• Disconnection from others and myself

• You tend to wonder about reinstating (which is getting less frequent)

• You wonder if you have missed an underlying neurological condition (less frequent today)

• Sensitive to screens (not as bad as it use to be)

• Etc

I think recording things can be helpful, especially as it allows you to see your progress.

9 hours ago, Nicolaas said:

What is persistent is the emotional blunting, connection/attraction and insomnia which I suspect has to do coming off quetiapine last month.

Quetiapine (Seroquel)

• I came off it last month when my dose ran out

• I need to check my logs but I think that is when I experienced my sleep becoming shorter

• 2 - 4 hours of sleep

Very likley, Seroquel is often taken for sleep. You may consider reinstating a low dose of this, it might help you recover your sleep while you heal a bit.

Reinstating an Antidepressant

We can help suggest a dose if that is something you would consider.

9 hours ago, Nicolaas said:

TLDR

• Medication dosage increased over the years as their effects worn out

• More adverse effects stacked ontop of another

• I tappered too fast and experienced brain zaps, sensory overload

• Bad experience with new medications

• Nervous-system has calmed down where I can now experience windows

• Emotional numbness, loss of connection/attraction, fragmented sleep still present.

Think you've summed it up well. It's good you noted the drugs stopped working for you. We call this tolerance/poop out. Often the only route here is getting the dose down. I suspect this was the start of all your issues.

Tolerance or "poop-out" or Tachyphylaxis

 

10 hours ago, Nicolaas said:

'm starting to loose focus. I felt like I started off well and as I went on I lost concentration and motivation.

You did just fine, and thank you for sharing.

10 hours ago, Nicolaas said:

What I want to leave you with is that it does get better. Small steps. Be kind to yourself in this process. You deserve healing.

Thank you for the positive message, it's really appreciated.

Asides from considering a small RI of Seroquel, I would hold everything you are currently taking now for the foreseeable future and then once you feel more stable carefully reduce any remainly doses, one at a time listening to your body as you go.

For the minute it's all about stablity. We call this WD normal, this where your symptoms are mild so 1-3/10 for a sustained and reliable period of time.

Perhaps you could update your signature with a list of doses you are currently taking as it's not clear to me from reading you post?

In the mean time this is what I would do if I were you:

 

-Stay Hydrated 

 

-Eat a good clean whole food diet, avoiding processed foods and sugars.

 

-Stay away from caffeine, alcohol and antihistamines and any other psychoactive substances.

 

Supplements are to be avoided initially, as they often irritate our nervous systems. Try to get your nutrition through food.

 

Down the line, you may wish to introduce Fish Oil and Magnesium. Those who can tolerate them have found them calming to the nervous system. Be careful try one at a time and start low and see how you get on should you choose to try them.

 

A daily walk is very important as much as you can manage, if you can manage it. Gets you your fresh air and Vitamin D does wonders for your mind!

 

You are very welcome here and I hope you find the site supportive.

Hey, thanks for the quick response. I did not expect that.

I'm currently just taking pregabalin and forgot last night's dose as I don't feel any importance towards it. Tbh it did not help at all especially when the symptoms were at its peak. I've already decided not to try different medications again.

I'll look into Seroquel reinstatement and the link provided. I used 25mg the past few months.

I don't know if it is worth it to RI the lexamil as we don't have liquid form in my country and I've been off of it for a few months now.

It's been 6 months since I stopped lexamil at 5mg and 2 months since I stopped venlor. I'm glad I've written it down as my memory has been poor the past 5 months.

I'm not bed bound anymore which is a nice change. Waking up in the morning is still strange I would give it a 5/10.

I've always been an active person which with it came clean diet with occasional cheat meals, drinking at least 2L of water daily.

I've been walking for a while now. I started at 1.6km, increased it to 3.3km, increased it to 6.6km and 8km today.

I felt like dying when I went for a walk in the beginning. No panic, no anxiety it just felt like there was no soul left but I kept on walking each day.

On the other hand yesterday was a good day.

Went outside and did a KB workout. The training is low reps, slow eccentrics, plenty of rests between sets. Initially started with 12kg. My plan is to do weight training 3 times a week now and see how I respond to it.

I stretch lightly before bed almost each night. At the start it brought no relieve but recently it feels like it is calming me down somewhat and the aches and pains have gone from 10/10 to 5/10.

Went for a walk with our dog.

I felt present for the first time.

Today I just became a little more withdrawn but no complete shutdown or flare up from the previous symptoms. The muscles start to ache more during this wave but I would give it a 6/10 as I'm functional.

Just 2 months ago I was mostly surviving and seeing where I am today gives me hope.

I saw a video once about protracted withdrawal and skipped it. Then later I clicked it and thought what is the chance that this would truly happen. Took the advise of a fast taper and things spiraled out of control quickly.

I caught myself venting too much so instead I'll list what I'm thankful for.

What am I thankful for:

• For cool weather

• For the practical support

• For brief moments of normallacy

• For functioning better

• For increase ROM

• For increase of stress tolerance

• For someone who listens

• For this community

• For the few doctors bringing it to the publics attention

• For people speaking up about this

Thank you, I'll update you when I start Quetiapine on a lower dosage and see what I can do with lexamil liquid form as I'll probably start at 0.5mg.

I'll add the supplements to the signature.

10 hours ago, Nicolaas said:

Hey, thanks for the quick response. I did not expect that.

Pleasure, we have a pretty good turn around here, sometimes you have to wait a few hours but normally someone gets to it fairly quickly.

10 hours ago, Nicolaas said:

I'm currently just taking pregabalin and forgot last night's dose as I don't feel any importance towards it. Tbh it did not help at all especially when the symptoms were at its peak. I've already decided not to try different medications again.

You shouldn't stop a drug abruptly, this can make things worse for you. I am a bit lost what you are taking and what you are not. Your signature is also not clear.

Could you please read the guide I linked to you Preferred signature/drug history format

Then update in this format so we can better undestand you history and more importantly what you are taking now....

10 hours ago, Nicolaas said:

I'll look into Seroquel reinstatement and the link provided. I used 25mg the past few months.

Ok, let us know what you think, tbh we need to understand your full drug situation a bit better. Sounds like you have chopped and changed quite a bit.

10 hours ago, Nicolaas said:

I don't know if it is worth it to RI the lexamil as we don't have liquid form in my country and I've been off of it for a few months now.

I wouldn't RI everything you have taken. I only suggested you might consider a little of the seroquel as you said you think it effected your sleep coming off it. We can make up small doses with a DIY liquid from a tablet so it's no problems RI a small dose.

10 hours ago, Nicolaas said:

It's been 6 months since I stopped lexamil at 5mg and 2 months since I stopped venlor. I'm glad I've written it down as my memory has been poor the past 5 months.

Ok, take the time to write it in your signature as requested, much clearer for us to read quickly.

10 hours ago, Nicolaas said:

I'm not bed bound anymore which is a nice change. Waking up in the morning is still strange I would give it a 5/10.

That's good. and the symptoms more moderate which is a positive thing. When we see things improving like this we are always tempted to suggest not RI things and just keep all doses level for the short term at least. Best to ask here before making changes.

10 hours ago, Nicolaas said:

I've always been an active person which with it came clean diet with occasional cheat meals, drinking at least 2L of water daily.

Great to hear, good work.

10 hours ago, Nicolaas said:

I've been walking for a while now. I started at 1.6km, increased it to 3.3km, increased it to 6.6km and 8km today.

Excellent work! I love to walk too and I think it is great you can do this if it doesn't make things worse for you. Good distraction too.

10 hours ago, Nicolaas said:

I felt like dying when I went for a walk in the beginning. No panic, no anxiety it just felt like there was no soul left but I kept on walking each day.

You are clearly improving I would not rock that boat and keep those doses the same each day!

10 hours ago, Nicolaas said:

On the other hand yesterday was a good day.

Went outside and did a KB workout. The training is low reps, slow eccentrics, plenty of rests between sets. Initially started with 12kg. My plan is to do weight training 3 times a week now and see how I respond to it.

I stretch lightly before bed almost each night. At the start it brought no relieve but recently it feels like it is calming me down somewhat and the aches and pains have gone from 10/10 to 5/10.

Went for a walk with our dog.

I felt present for the first time.

:)

10 hours ago, Nicolaas said:

Today I just became a little more withdrawn but no complete shutdown or flare up from the previous symptoms. The muscles start to ache more during this wave but I would give it a 6/10 as I'm functional.

Waves and windows are a feature, this is mild though and nothing to worry about all completley normal.

10 hours ago, Nicolaas said:

Just 2 months ago I was mostly surviving and seeing where I am today gives me hope.

you have come a long way in a short time, very positive.

10 hours ago, Nicolaas said:

I saw a video once about protracted withdrawal and skipped it. Then later I clicked it and thought what is the chance that this would truly happen. Took the advise of a fast taper and things spiraled out of control quickly.

Yes, treat your nervous system like a baby. Small steps from a stable place.

10 hours ago, Nicolaas said:

What am I thankful for:

• For cool weather

• For the practical support

• For brief moments of normallacy

• For functioning better

• For increase ROM

• For increase of stress tolerance

• For someone who listens

• For this community

• For the few doctors bringing it to the publics attention

• For people speaking up about this

Good to recognise

10 hours ago, Nicolaas said:

Thank you, I'll update you when I start Quetiapine on a lower dosage and see what I can do with lexamil liquid form as I'll probably start at 0.5mg.

No, I wouldn't start anything on a lower dose, hold your doses where they are and let your body stabilise. :) You have been doing well, no need to change anything.

10 hours ago, Nicolaas said:

I'll add the supplements to the signature.

Perfect plus as I said please redo the signature to match our preferences.

Chippy

@Nicolaas

Welcome!

It sounds like a lot going on. That's pretty normal for newcomers around here 😆 I can't offer advice on how to handle your meds, but the first thing I was told years ago was to decide how I wanted to proceed and give it some time without changes to see where I'm at.

I was desperate and had made a bunch of changes rapidly, which isn't ideal.

I think that you are journaling about your symptoms is a huge asset. I used to do a daily withdrawal checklist(there's a link somewhere)and it helped me enormously. The symptoms that had seemed random were actually quite predictable when I looked at them from month to month.

I think it's fantastic that you're getting out for a walk! I did it as much as I could force myself to, and I always felt better afterwards.

I think you're doing great. Please post often!

Welcome to the forum.

It's good that you're improving and are able to recognise improvements. I wouldn't reinstate older drugs nor add in new ones if you're improving over time, personally. It comes with significant risk.

We have a lot of members here who tried to speed up recovery, or seeking short term relief, who sorely regret significantly worsening themselves by introducing more drugs.

You're having good days, among the bad. You're improving over time. That's pretty much what you'd hope a reinstatement would do in the best case, as it's often not an instantaneous magic fix anyway. I don't see the value in jeopardising this.

Hey everyone!

Thank you for your replies.

I did not RI as I have had two nights where I slept five hours (big improvement) ,one night 3 hours and it seems to alternate and you can only enjoy the window when it arrives. Hopefully I can sleep my normal six - eight hours like I always did within a few months.

I had the best night in a long time a few days ago. I just laid and felt completely comfortable until I fell asleep. Being present was a huge milestone.

Two days later my cognitive function dropped and I had to look up multiple times how to make a single knot to setup up an ariel hammock. I reminded myself it will pass which it did.

I'm still not 100%, some nights I'm awake until 3am and wake up at 6am or 7am. It's easier to get out of bed, my body is sensitive but not as locked up as it use to be. Sometimes it feels like my legs want to give in without a clear loss of strength.

I've broken up my training to 2 - 3x weight training, 3 - 4x mobility work a week. Since I'm walking longer distances I'm not walking everyday.

I still feel exhausted at times such as today. This was after going to a neighboring town, attending a funeral, experienced a mild headache when people can't figure out how a gps work which I sorted out, helping out carrying goods at the store and just as we arrived at home the tiredness set in. I did not experience a crash like the first few weeks when I came off my meds.

I can watch TV with little background noise dominating my attention at times. I couldn't even enjoy TV a few months ago and while on the meds I was too blunted out to enjoy anything.

It took a few months to start having positive experiences. It came through briefly and not as clear. Sometimes I wondered if I'm imagining it and that's where journaling came in handy.

If I knew about tapering I think all of this could have been prevented or at least the experience would have been less chaotic. I wouldn't have been put on different medications which just worsened my symptoms. Less sleep distruptions, no new Dr's, less expenses, less overall stress.

In retrospect I should have seen this coming as I had brain zaps, sensory overload when I missed a single dose back in 2018. The symptoms went away within one or two after taking a missed dose. I did bring up the missed dosage and other symptoms up but it got skimmed over and never thought about it again.

A functional Dr recommended magic mushrooms. They thought I had long covid and ptsd. I saw that it reacts strongly on serotonin and I don't want anything that reacts strongly with serotonin. I don't even want a beer after this is over. This was shortly after I stopped venlor(effexor).

I've searched for Dr's specializing in AD WD where I stay. It came up empty. I don't think anyone knows about AD WD or discontinuation syndrome as I got slapped with different possible diagnosis. What I've logged and what they brought up overlaps but it's not the same thing.

During my time coming of Escitalopram I brought up that my NS is sensitive, that my baseline is completely different from my original baseline, I'm experiencing adverse effects etc, they did not know what to do. I think I composed myself fairly well while engaing but the crashes afterwards were the worst. The first psychiatrist of eight years said it was emotional guarding which did not sit well with me. It was completely different from what I've ever experienced.

They denied that SSRI's causes brain zaps etc and I couldn't even get to the worse symptoms. I remember saying "Then it's only just me." Which bothered me again. The venlor reinstatement made me break contact. I had too many new adverse effects and it came up 2 - 3 hours after taking the meds and I've repeatedly brought up things like emotional blunting, loss of libido, weird baseline etc.

Probably two weeks ago I was told by a GP that the nerve pain does not sound like a mechanical issue and that improvement means that it's less likely to be a neurlogical issue. Also all my blood tests came back normal. He discussed muscle tightness and rigidity that it could be due to inactivity or deconditioning. I've experienced this before I became inactive. It's more like my NS keeps my muscles contracted than the muscles are shortened. They did suggest RI but I've explained what I believed to be adverse effects and they didn't press further.

I've sent my case which supports AD WD / discontinuation syndrome. What they make of it now is in their hands, I'm moving forward from here. I know they wanted to help but it's outside their framework.

It's reassuring to know it's mild what I'm experiencing today. I saw a few posts and there are several people going through AD WD, ones who have it way worse, experiences similar to my own, people who have recovered, people who have more windows than waves as they progress, people who fall back. The weirdest symptoms without any explanation. It's a fragile state to be in that needs to be managed.

I have followed accounts of people experiencing AD WD a few months ago but engaging still felt like it took a considerable amount of effort.

I'm way more talkative today and I think I'll bore people with more stories they've already experienced. It's just nice to get it out!

Today I was active, became tired, rested and recovered in a few hours. Taking it slow after the recovery. Reminding myself to be patient when a wave hits.

Hang in there!

@Nicolaas everything you've written further reinforces my belief that reinstatement would not be the right move for you.

I hope you continue to have better sleep more consistently, and improve further.

Hey

Just an update,

My sleep is still fragmented, I can fall back asleep luckily. It can take a while.

During the day I have somewhat more energy, I get bored and frustrated. There is not much to do when you've spent time figuring things out and lost contact with people.

I'm still keeping busy with training and walking. I'm going to see to reach out more and if I can keep busy with other activities that is not in the house.

I did lay down again and drifted between being awake and falling asleep for an hour. The energy came back again and I felt a little better.

Strongest signal that comes through is hunger. I had a moment when playing with the dog produced laughter which was great.

I think I'm in a wave right now. It's not as bad as it use to be but it's still uncomfortable. I try not to dwell on negative thoughts here and I'm going for walk.

I have so many new veins that surfaced on my claves since I started walking.

For anyone wondering about the quetiapine. First dose of 25mg worked wonders. Then it stopped. The cycle repeated with 50mg and 75mg. I was instructed to crush the pill and put it under my tongue for faster absorption. I did this for two weeks and it never made any difference. This was when I was still taking it.

@Nicolaas waves becoming less severe is another positive step.

When you say you're taking "approximately" 10mg of pregabalin, what does this mean exactly?

1 hour ago, Luke said:

@Nicolaas waves becoming less severe is another positive step.

When you say you're taking "approximately" 10mg of pregabalin, what does this mean exactly?

I've reduced the amount more or less to 10mg. I don't have anyway of measuring it accordingly. Finding a scale that could measure small amounts are hard to find.

3 hours ago, Nicolaas said:

I've reduced the amount more or less to 10mg. I don't have anyway of measuring it accordingly. Finding a scale that could measure small amounts are hard to find.

@Nicolaas it's important to be accurate with your dosing. Taking different amounts every day it can cause further nervous system damage. If you find it difficult to weigh 10 mg you can always switch to a DIY liquid: Preparing Doses for Tapering - Weighing & DIY Liquids

21 hours ago, Nicolaas said:

Finding a scale that could measure small amounts are hard to find.

Gem-20 scales are affordable and readily available.

As above, it's very much worth buying accurate scales such as those above and making sure that your doses are consistent.

It might make you feel considerably more stable, and if you taper it more in the future, this becomes critical for many people at lower doses.

On 9/17/2026 at 9:10 AM, Chippy said:

Gem-20 scales are affordable and readily available.

Hey,

We don't have Amazon or big warehouses available where I am. I'll need to import it which could take a while to arrive but I'll ask around for the time being.

Thank you

Just an Update

I'm sleeping five hours regularly which is a nice change. Stretching more without flare ups. Doing this consistently helped take away the deep aches within the muscles.

The waves are easier to spot. The first to go is concentration, feeling uncomfortable, tiredness setting in and pain building up followed with irrational thoughts. You often just have to wait it out and it goes away. This was constant in the beginning.

It's less overwhelming than it use to be but it stays uncomfortable. Some waves stay longer than others.

There are moments where I'm more talkative, doing more even where there is no reward or pleasure and resting when I wave comes up.

Best way to describe it is the boring stage. There are changes, it's not as chaotic anymore, waves come up and feels as uncomfortable as it usually is. Rinse and repeat.

On 9/19/2026 at 3:25 AM, Nicolaas said:

Hey,

We don't have Amazon or big warehouses available where I am. I'll need to import it which could take a while to arrive but I'll ask around for the time being.

Thank you

What ever you need to do. It is important to have some

2 hours ago, Nicolaas said:

There are changes, it's not as chaotic anymore, waves come up and feels as uncomfortable as it usually is. Rinse and repeat.

Sounds like progress to me. I relate with the 'boring' phase, just plodding along....