Erimus: my introduction and journal

[Erimus]

Hello everyone. I started a taper on 15th January. It’s been pretty disastrous, intense akathisia in my arms and brain zaps have tortured me the last 2 days.

 

The first drop I did was 50 -> 49mg on 15th Jan 2024. Everything seemed okay so I did another drop from 49 -> 48mg on 22nd Jan 2024. Evidently this is too much and has caused chaos.

 

Im going to return to 49mg and see what happens over the next few weeks. Feel deflated and demoralised.

[HelenR]

@Erimus so sorry to hear that you are struggling in your taper. Maybe a 5% reduction would be better and a long hold in between.

I admire you for trying, I am yet too bad to start another taper.

[Erimus]

2 hours ago, HelenR said:

@Erimus so sorry to hear that you are struggling in your taper. Maybe a 5% reduction would be better and a long hold in between.

I admire you for trying, I am yet too bad to start another taper.

My first drop was only 2%. I should’ve waited longer between drops, but hindsight is a wonderful thing. 
 

It’s hard because I am also experiencing windows and waves of protracted withdrawal. Differentiating between that and now tapering is difficult. My nervous system is dependent on a drug which is bad for it. There’s no easy solution, I only know I can’t stay on this drug any longer.

 

Ideally I would know how much I could drop by, and how often. 

[HelenR]

@Erimus oh 2% is very low. It amazes me how such a tiny decrease can have such a massive effect on the nervous system. Well you have found out what your body can cope with so holding a lot longer between drops seems the way to go. Fingers crossed you can get back and restart again.

[Erimus]

Gone straight back to 50mg instead of 49mg. This experiment has been a disaster. The decreases made me violently ill and it was only worsening each day. Not sure how I move forward from this. The medication makes me sick being on it, and even more sick trying to come off. Can’t see how I get off it without some sort of intervention from another drug at this point. My nervous system is damaged beyond belief.

[HelenR]

@Erimus I'm so sad for you. You are stuck between a rock and a hard place. I've read that even doctors/psychiatrists can't help us as we all react so differently to these drugs. I really can't explain the sympathy I have for you. What the heck are you supposed to do???

It's a gamble to try other medication and it takes a brave person to try. My heart goes out to you.

[Erimus]

Extreme nausea, akathisia and brain zaps this morning

[HelenR]

@Erimus

I'm so lucky not to get brain zaps , I get electric shocks under my arm pits. The nausea is just as bad, I get that constantly anyway with my gastritis. I can't take any meds for gastritis either as it sends me spiralling.

Do you find eating little and often will help. I eat every 2 hours due to the weakness. I don't hold onto vitamins very well as my stomach doesn't absorb much but by approx 7pm in the evening I seem to calm down a bit only to wake every 2 hrs with severe shaking and anxiety. Oh my goodness sometimes I think we must be stronger than we feel to actually survive this trauma.

[Erimus]

My digestive system has been pretty solid for over a year @HelenR. In early withdrawal I struggled to eat at all. I also have gastritis issues that existed pre-psychiatric medication. I take 10mg omeprazole for the time being, I tried coming off completely but it wasn't possible with the sertraline causing havoc. I was on 40mg 2 years ago so definite improvement there.

 

Just the sertraline that is the bane of my existence. I need to regroup and reassess things in a month or two. It's easy to formulate irrational plans in the heat of the moment, the important thing is not acting on them.

[Catina7]

Hello fellow Mentor @Erimus!  I've read some of your posts and feel sad that you've suffered so much.  One day you're going to be looking back on all of this because it WILL be behind you.  You have shown incredible courage, patience, and persistence despite having to deal with such awful symptoms.  You have to keep going because one day someone else will be exactly where you are now, and your experience will be their survival guide.  Keep going....we're all rooting for you!  

 

Catina ❤️

[Erimus]

Thank you @Catina7.

[Erimus]

I've just been weighing a load of my 50mgai sertraline tablets, and the scales give out readings from 156mgpw to 162mgpw. The first average I took before starting on 15th Jan was 162mgpw.

 

My first "drop" to 159mgpw, and second "drop" to 156mgpw, both fall into the remit of the fluctuation in pill weight. Surely that means my body won't have actually registered any change, unless the act of crushing and weighing alters the absorption of the drug.

 

If what I've said is correct, that means that the symptoms I've experienced the last few days are merely part of the bigger protracted withdrawal experience. Seems too much of a coincidence, however.

 

Feel free to correct me if I am wrong, my brain is not currently at its sharpest. Thanks.

 

 

 

 

Edited January 24 by Erimus

[Erimus]

Apparently the scales are only accurate to 0.005g/5mg as well, so does that mean doing drops of 0.001-0.004gpw is pointless due to the inconsistency of measuring?

Edited January 24 by Erimus

[Erimus]

The plan going forward:

 

- Wait 1-2 months

- Switch to a homemade liquid suspension.

- Try again with a drop of 1%

[HelenR]

@Erimus that sounds like a good plan to go forward with. I wish I could have your positivity.

I'm being selfish as yesterday I managed to stay out of bed for a few hours and tackled a couple of home tasks. It was slow going but I had hope. Today I'm back to feeling awful as if yesterday never happened!!

Maybe it's a good sign as hoping that the odd few hours of functioning will turn into a whole day and so on.

I can't think of tapering until I get a few windows.

Well done for having a plan.

[Erimus]

You will stabilise @HelenR. Even if you don't feel great you will reach a point where you can commence a proper taper. You're still in a somewhat acute phase, whereby rational thinking is often absent. Just keep taking the same dose and soldiering on the best you can.

[HelenR]

@Erimus thankyou for giving me hope.

[Erimus]

In case you're wondering what psychiatry is like in the UK, this is the text message I received from a GP (General Practitioner) at my Doctors' Surgery regarding a referral to a psychiatrist.

 

 

For context: I've been in withdrawal for just under 3 years, and protracted withdrawal for over 2 years. In which time I've lost my job, career and physical health, never see my friends, rarely see family, and seldom leave the house due to physical pain.

 

It's absolutely criminal. This is why you have to take your health into your own hands, only you can be trusted to do what is best for your health and your future.

Edited January 30 by Erimus

[Catina7]

6 minutes ago, Erimus said:

It's absolutely criminal. This is why you have to take your health into your own hands, only you can be trusted to do what is best for your health and your future.

 

They have no idea the harm they cause with 1) putting people on these drugs and 2) not knowing how to get them off.   As you said, you definitely have to be your own healthcare advocate.  If I had tapered the way two mental health "professionals" had advised me to, I would not be alive today to type these words.

 

Keep hanging in there @Erimus...you're a valued member of this community.  -Catina ❤️

[HelenR]

1 hour ago, Erimus said:

In case you're wondering what psychiatry is like in the UK, this is the text message I received from a GP (General Practitioner) at my Doctors' Surgery regarding a referral to a psychiatrist.

 

 

For context: I've been in withdrawal for just under 3 years, and protracted withdrawal for over 2 years. In which time I've lost my job, career and physical health, never see my friends, rarely see family, and seldom leave the house due to physical pain.

 

It's absolutely criminal. This is why you have to take your health into your own hands, only you can be trusted to do what is best for your health and your future.

@ what a shocker!! There is no hope in the UK of anything changing. We are so under funded and a lot of doctors or psychiatrists are narrow minded. 

I was reading up about the effects of norepinephrine in the body. It's an eye opener but not one doctor would consider testing us for over activity as it's linked to withdrawals. I'm in constant fight or flight mode 24hrs a day with approx 3 hrs sleep a night.

Animals get better treatment than we do. I'm soooo angry!!!

[LukeUK]

1 hour ago, Catina7 said:

 

They have no idea the harm they cause with 1) putting people on these drugs and 2) not knowing how to get them off.   As you said, you definitely have to be your own healthcare advocate.  If I had tapered the way two mental health "professionals" had advised me to, I would not be alive today to type these words.

 

Keep hanging in there @Erimus...you're a valued member of this community.  -Catina ❤️

 

I'm in the UK and tapered more slowly than I was advised by my GP and frankly it damn near killed me and I often wish it had. The suffering is profound.

 

56 minutes ago, HelenR said:

Animals get better treatment than we do. I'm soooo angry!!!

 

Sadly vets put cats and dogs on antidepressants. We do not understand how they work in people, much less animals and they lack the ability to verbalise their suffering.

 

 

 

@Erimus I have read your story, I hope the liquid suspension means that you are able to taper without inducing further symptoms, or at least that they are mild.

[Catina7]

2 hours ago, HelenR said:

I'm in constant fight or flight mode 24hrs a day with approx 3 hrs sleep a night.

 

I'm so very sorry!  I deal with a constant level of anxiety myself, and if I experience any stress I go into meltdown mode and have a hard time sleeping.  These drugs do such a number on our nervous systems.  I hope you stabilize soon!  Love, Catina 🌺

[HelenR]

6 minutes ago, Catina7 said:

 

I'm so very sorry!  I deal with a constant level of anxiety myself, and if I experience any stress I go into meltdown mode and have a hard time sleeping.  These drugs do such a number on our nervous systems.  I hope you stabilize soon!  Love, Catina 🌺

@Catina7 I'm the same. Even when the telephone rings my anxiety goes off the scale. I see you've been on a mixture of drugs over the years. That must be so hard for you to stabilise. I am also on 75mcg of Levithyroxine. I'm sure the thyroid problems don't help the situation.

Good luck in your taper. I'm holding off with mine as I'm too terrified to drop. 

[getofflex]

On 1/23/2024 at 12:36 PM, Erimus said:

I started a taper on 15th January. It’s been pretty disastrous, intense akathisia in my arms and brain zaps have tortured me the last 2 days.

 

The first drop I did was 50 -> 49mg on 15th Jan 2024. Everything seemed okay so I did another drop from 49 -> 48mg on 22nd Jan 2024. Evidently this is too much and has caused chaos.

Please put the above details in your drug signature to keep it up to date - thank you.  

 

I suggest that you wait at least a month between reductions.  Were you doing a micro taper?  I think in your case, you may need to taper super slowly.  

On 1/25/2024 at 5:30 AM, Erimus said:

The plan going forward:

 

- Wait 1-2 months

- Switch to a homemade liquid suspension.

- Try again with a drop of 1%

I strongly suggest that you listen carefully to your body, and hold at your current dose for as long as you need to.  You may need longer than 1-2 months.  In my taper, there were times I held 5 months, and then 9 months, and I'm very glad I did.  Wait until you are stable for several weeks before attempting another reduction.  Please read this: 

 

Stability

 

WD Normal

 

Psychiatrists everywhere are notorious for being clueless about how to get their patience off these drugs safely.  

 

Hang in there.  This is a tough journey, but we are here with you to support you.  

Edited January 30 by getofflex

[Erimus]

3 hours ago, getofflex said:

Please put the above details in your drug signature to keep it up to date - thank you.

It was in my signature, but after weighing my tablets again I realised I hadn't even made a reduction in dose. I had 49mgai = 159mgpw, but quite a lot of my tablets already weigh 156-159mgpw. So basically I changed nothing, and the taper attempt unfortunately coincided with quite a bad wave of the protracted withdrawal experience. These symptoms had been building in intensity even before starting the "taper".

 

3 hours ago, getofflex said:

Wait until you are stable for several weeks before attempting another reduction.

I don't ever feel stable. I have the protracted withdrawal as well as the adverse effects of sertraline. If I waited for stability it could be years before changing anything. I don't think I'm ever going to fully stabilise on this drug, my body doesn't want it but it is dependent on it now. There is no easy way out.

 

[getofflex]

15 hours ago, Erimus said:

I don't ever feel stable. I have the protracted withdrawal as well as the adverse effects of sertraline. If I waited for stability it could be years before changing anything. I don't think I'm ever going to fully stabilise on this drug, my body doesn't want it but it is dependent on it now. There is no easy way out.

I'm very sorry to hear this.  Then in this case, your best bet may be to go through with your plan as outlined above.  

[Erimus]

The brain zaps have never been as severe as they have these past 2 months. They’re like mini seizures that take control of your mind and body for a split second. I can feel them coming. They send my arms, legs and head into a spasm. On bad days I’m getting anywhere from 20-40 a day.
 

None of it makes any sense. Akathisia ramping up, brain zaps getting worse, all increasing over the last 1-2 months. I just feel like I’m getting worse. 
 

 

Edited February 3 by Erimus

[HelenR]

1 minute ago, Erimus said:

The brain zaps have never been as severe as they have these past 2 months. They’re like mini seizures that take control of your mind and body for a split second. I can feel them coming. They send my arms, legs and head into a spasm.
 

None of it makes any sense. Akathisia ramping up, brain zaps getting worse, all increasing over the last 1-2 months. I just feel like I’m getting worse. 

@Erimus oh my goodness that really is bad news. Do you think it's a delayed reaction from your last attempt at tapering? I guess the answer is "who knows'.  None of us have any idea of how we react to any reduction or increase in these vile drugs.

I'm getting different symptoms than I had last year, possibly mentally worse. I feel like jumping off my 5mg of citalopram just to see how I react but I stop myself in case it's a devastating decision.

I keep reading and re-reading success stories and it seems to me it's pot luck on how we react. Obviously it's been proved we have to go low and slow but how long do we suffer like this? I've now forgotten what my real life was like. I pushed myself to get out in the car with my partner. I didn't want to go but I'm trying to test the waters. Well firstly I was shivering and had jelly legs, heart was pounding and now I feel like I've got flu. Maybe I wasn't ready but I can't live my life stuck in the bedroom for too much longer.  I'm slowly losing hope now as this bad wave has been a whole two weeks with not a glimmer of letting up like it used to. 

My heart aches for your pain and everyone else.  Just keep posting and I look forward to seeing a ray of hope from you that you've had an improvement in the coming days.

[Erimus]

39 minutes ago, HelenR said:

@Erimus oh my goodness that really is bad news. Do you think it's a delayed reaction from your last attempt at tapering? I guess the answer is "who knows'.  None of us have any idea of how we react to any reduction or increase in these vile drugs.

I'm getting different symptoms than I had last year, possibly mentally worse. I feel like jumping off my 5mg of citalopram just to see how I react but I stop myself in case it's a devastating decision.

I keep reading and re-reading success stories and it seems to me it's pot luck on how we react. Obviously it's been proved we have to go low and slow but how long do we suffer like this? I've now forgotten what my real life was like. I pushed myself to get out in the car with my partner. I didn't want to go but I'm trying to test the waters. Well firstly I was shivering and had jelly legs, heart was pounding and now I feel like I've got flu. Maybe I wasn't ready but I can't live my life stuck in the bedroom for too much longer.  I'm slowly losing hope now as this bad wave has been a whole two weeks with not a glimmer of letting up like it used to. 

My heart aches for your pain and everyone else.  Just keep posting and I look forward to seeing a ray of hope from you that you've had an improvement in the coming days.

The taper was a non-event given some of my tablets weigh less than the capsules I’d made. These symptoms were building before that anyway. Eventually they reach a crescendo and you crash, before your nervous system reaches a new normal. Rinse and repeat this process over months and years and things are meant to improve, but I’m struggling to see much of that. 
 

In the 2.3 years since my last dose change I’ve seen lots of change, but not really any reassurance that I’m doing the right thing.

[HelenR]

19 minutes ago, Erimus said:

The taper was a non-event given some of my tablets weigh less than the capsules I’d made. These symptoms were building before that anyway. Eventually they reach a crescendo and you crash, before your nervous system reaches a new normal. Rinse and repeat this process over months and years and things are meant to improve, but I’m struggling to see much of that. 
 

In the 2.3 years since my last dose change I’ve seen lots of change, but not really any reassurance that I’m doing the right thing.

@Erimus how on earth can you continue like this. You've obviously got some inner strength and the will power to carry on.  If only we could predict the future but none of us dreamt we would get like this or we wouldn't have taken that first pill.

My only saving grace is that I'm eating. I don't feel I'm getting any nutrients and can't take supplements as too activating but I'm trying to keep my stomach happy at least. I refuse to lose as much weight as I did last year as I looked like a starving refugee. I'm losing a lot of hair though which is sad as that was always my coat of armour in many ways but I'm not going to fret too much as I'm not going out so no-one will see me.

Hopefully when the sunnier days arrive in the spring it will improve things and spur us on.

[getofflex]

3 hours ago, Erimus said:

The brain zaps have never been as severe as they have these past 2 months. They’re like mini seizures that take control of your mind and body for a split second. I can feel them coming. They send my arms, legs and head into a spasm. On bad days I’m getting anywhere from 20-40 a day.
 

None of it makes any sense. Akathisia ramping up, brain zaps getting worse, all increasing over the last 1-2 months. I just feel like I’m getting worse. 
 

 

According to your signature you haven't made any drug changes since September 2021, and have been on 50 mg of sertraline, and 15 mg of mirtazapine the past several years?  Is this correct?    If not, please update with all drug changes/dosage changes.   A drug change includes changing the dose, adding or stopping any drugs, changing the form (solid to liquid, or liquid to solid), the manufacturer, missing or skipping or varying doses, or changing the time you take your drugs. 

 

Have you been drinking an alcohol, or using any other mind altering substances?  Have you had major changes to your routine, undue stress, sudden or major weather changes, etc?  

 

How do you feel in the 4-5 hours after you take your drugs?  I would suggest that you do a daily drug and symptoms journal, to see if you are having an adverse reaction to any of your drugs.  Brain zaps are concerning, and show significant nervous system destabilization.  It is important to see if you are having an ADR (adverse reaction).  

 

Keep track of taking your drug, symptoms, eating, sleeping, etc.  Write the time on the left, and describe the event on the right.  Pay attention especially to how you feel before, and then after, you take your drug. Please do this for 24 hours, and post an entry in here for each 24 hour period.  Here is an example: 

 

January 31, 2023

6 AM woke with anxiety

8 am took 2.5 mg lexapro

10 am stomach is upset

10:30 am ate breakfast

11:35 am got a headache, lasted one hour

12:35 ate lunch

4 pm feel a bit better

5 pm took 2.5 mg lexapro

6 pm ate dinner

9:20 pm headache 

10:00 pm took 50 mg Seroquel

10:30 pm feeling dizzy

10:30 pm fell asleep 

2:30 am woke, took 3 mg Ambien

2:45 am fell asleep

4:30 am woke, but got back to sleep 

 

 

Edited February 3 by getofflex

[Erimus]

Restlessness has calmed somewhat but today the pain in my legs and feet is severe. The worst since 25th December 2023. I feel I have no choice but to begin a taper at the end of this month, this madness cannot go on. It feels like my body still demands 100mg and by taking 50mg each day I force it to contort into these insuferrable symptoms. I will never increase the dose of this drug, so my options are to hold or decrease. After 2.375 years holding, down seems like the only answer.

Edited February 7 by Erimus

[Erimus]

On 2/3/2024 at 8:34 PM, getofflex said:

Have you been drinking an alcohol, or using any other mind altering substances?  Have you had major changes to your routine, undue stress, sudden or major weather changes, etc?

 

I haven't consumed alcohol since the 9th of July 2020. I consume no caffeine and only drink water. Mind altering substances? Only the psychiatric drugs I take. No changes to routine, everything is done with military precision in an effort to limit symptoms.

[HelenR]

22 minutes ago, Erimus said:

Restlessness has calmed somewhat but today the pain in my legs and feet is severe. The worst since 25th December 2023. I feel I have no choice but to begin a taper at the end of this month, this madness cannot go on. It feels like my body still demands 100mg and by taking 50mg each day I force it to contort into these insuferrable symptoms. I will never increase the dose of this drug, so my options are to hold or decrease. After 2.375 years holding, down seems like the only answer.

@Erimus it does sound like the most sensible option to start tapering. You've had no respite for 2 years now.

I now it went badly the last time you dropped but it's either try again or carrying on suffering endlessly.  I understand it will be torturous for a while but the long term goal will be worth it. Wishing you all the luck for when you begin your tapering.

[Erimus]

Days like today you just want to stop the entire drug, the lure of no more pain is huge. I know better than this, though. I also know not all days are like today, just yesterday I was working on a few bits around the house, despite the pain.

[Catina7]

9 minutes ago, Erimus said:

I know better than this, though. I also know not all days are like today

 

Yes, you do @Erimus.  You will get some relief soon.  One day you will get through to the other side.  Treat yourself with some extra TLC today.  Put your arms around yourself and give yourself a hug because you deserve it.