XJessieP: hoping to get some clarity

[XJessieP]

I just wanted to post my history and recent dosing changes so that people can perhaps get an idea of what is going on.

 

I was polydrugged for several years and my GP took me on and off a couple of SSRI’s CT after being on them for a few of years. I was briefly given benzodiazepines but didn’t stay on them long and stopped them CT. I was taken on and off Mirt^azip^ne which I had some sort of adverse reaction too (CT again). This has all happened since about 2014. I can’t remember exact dates as I didn’t log any of this. 

 

So I was put on Se^tral^ne in 2016 ish my dose was quickly raised to 50mg. I had some adverse effects but I was still able to live a semi-functional life. I stayed on this drug the whole time whilst my GP took me on and off the above abruptly ^

 

So now for the sertra^^ne changes. I did all of these cuts and changes whilst still in adverse reaction and withdrawal from the other meds. I do actually have most of these logged on a note as I started to feel something wasn’t quite right. So here goes:

 

August 2020

 

Cut and hold from 50mg to 45mg using cheap scale from Amazon. Only waited 3 weeks then did another large cut to 36mg. Waited a month or so this time and went down to 34mg. Waited a month and in November 2020 went down to 32mg. Got a very severe wave of akathisia shortly after this (within weeks). But didn’t listen to my body and continued cutting and on January 2021 I cut to 30mg. Within a month I could not cope it was like all the prior withdrawals from other drugs and these cuts caught up with me so I spoke to my GP who said to updose back to full dose. I was scared to do this so I went back up to 43mg which did help actually once I’d adjusted a little. I was slowly improving and I should have held for much longer there I feel. Then it gets even worse 😖

 

GP says as last taper failed, to try every other day tapering so I took my dose one day and not the next then I would not take it for 2 days then take it on the third day. As you can probably guess already, this did not work so back up to higher dose of 46mg this time and things felt even less stable at 46mg than they did at 43mg the time before, I guess because I made so many changes and my nervous system was screaming stop? So my GP this year (2022) decides to cut my dose by a tiny amount which sent my nervous system NUTS. I had never reacted that poorly to a decrease ever before! Especially not that small. Then my GP decides to make a further 23% decrease but scrap the every other day taper. I felt absolutely awful on this reduction so attempted to increase my dose but this seemed to not help this time and may have even made me feel worse however I didn’t give it long enough to kick in so it may have just been ongoing severe withdrawals that I attributed to the increase? Before an increase would resolve the severe stuff within days but this time it felt different. So now I’m holding at a reduced dose of 40mg but I am not stabilising in any way. My nervous system is screaming at me every day.

 

What would the advice be here? To go back up and wait to level out? What if that doesn’t work? To hold here for many months until things calm some?

 

Edited August 23, 2022 by ChessieCat
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[XJessieP]

Need some advice after so many drug and dose changes

 

I just wanted to post my history and recent dosing changes so that people can perhaps get an idea of what is going on.

 

I was polydrugged for several years and my GP took me on and off a couple of SSRI’s CT after being on them for a few of years. I was briefly given benzodiazepines but didn’t stay on them long and stopped them CT. I was taken on and off Mirt^azip^ne which I had some sort of adverse reaction too (CT again). This has all happened since about 2014. I can’t remember exact dates as I didn’t log any of this. 

 

So I was put on Se^tral^ne in 2016 ish my dose was quickly raised to 50mg. I had some adverse effects but I was still able to live a semi-functional life. I stayed on this drug the whole time whilst my GP took me on and off the above abruptly ^

 

So now for the sertra^^ne changes. I did all of these cuts and changes whilst still in adverse reaction and withdrawal from the other meds. I do actually have most of these logged on a note as I started to feel something wasn’t quite right. So here goes:

 

August 2020

Cut and hold from 50mg to 45mg using cheap scale from Amazon. Only waited 3 weeks then did another large cut to 36mg. Waited a month or so this time and went down to 34mg. Waited a month and in November 2020 went down to 32mg. Got a very severe wave of akathisia shortly after this (within weeks). But didn’t listen to my body and continued cutting and on January 2021 I cut to 30mg. Within a month I could not cope it was like all the prior withdrawals from other drugs and these cuts caught up with me so I spoke to my GP who said to updose back to full dose. I was scared to do this so I went back up to 43mg which did help actually once I’d adjusted a little. I was slowly improving and I should have held for much longer there I feel. Then it gets even worse 😖

GP says as last taper failed, to try every other day tapering so I took my dose one day and not the next then I would not take it for 2 days then take it on the third day. As you can probably guess already, this did not work so back up to higher dose of 46mg this time and things felt even less stable at 46mg than they did at 43mg the time before, I guess because I made so many changes and my nervous system was screaming stop? So my GP this year (2022) decides to cut my dose by a tiny amount which sent my nervous system NUTS. I had never reacted that poorly to a decrease ever before! Especially not that small. Then my GP decides to make a further 23% decrease but scrap the every other day taper. I felt absolutely awful on this reduction so attempted to increase my dose but this seemed to not help this time and may have even made me feel worse however I didn’t give it long enough to kick in so it may have just been ongoing severe withdrawals that I attributed to the increase? Before an increase would resolve the severe stuff within days but this time it felt different. So now I’m holding at a reduced dose of 40mg but I am not stabilising in any way. My nervous system is screaming at me every day.

 

What would the advice be here? To go back up and wait to level out? What if that doesn’t work? To hold here for many months until things calm some?

 

Edited August 24, 2022 by ChessieCat
added Intro topic title before merging with intro topic and added spacing

[Altostrata]

Welcome, @XJessieP

 

My first advice would be to stop conferring with your GP about tapering. Your GP is clueless.

 

What exactly are you taking now, at what times o'clock and dosages?

 

What are your current drug-related symptoms?

[XJessieP]

On 8/27/2022 at 9:58 PM, Altostrata said:

Welcome, @XJessieP

 

My first advice would be to stop conferring with your GP about tapering. Your GP is clueless.

 

What exactly are you taking now, at what times o'clock and dosages?

 

What are your current drug-related symptoms?

yes GP is clueless! 
 

i am taking 40mg Sertraline in the evening at 9pm in pill form. 
 

my current drug related symptoms are numerous. 
terror, akathisia, no appetite, severe insomnia, shaking, feeling psychotic, severe muscle pain, fevers, GI distress, constant intrusive thoughts, the list is honestly so long and severe from all the years of different drugs and changing round. 

[Altostrata]

How do you feel after you take sertraline in the evening, compared to how you feel before you take it?

 

Did you always take sertraline in the evening? Suggest you move half a tablet to noon, with 20mg at 9 p.m. for a week, then move the other 20mg to noon, to take it all at noon. 

 

Please keep daily notes of times o’clock you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and your symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right. This can show if your symptoms are adverse effects from one of your drugs.

[XJessieP]

19 hours ago, Altostrata said:

How do you feel after you take sertraline in the evening, compared to how you feel before you take it?

 

Did you always take sertraline in the evening? Suggest you move half a tablet to noon, with 20mg at 9 p.m. for a week, then move the other 20mg to noon, to take it all at noon. 

 

Please keep daily notes of times o’clock you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and your symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right. This can show if your symptoms are adverse effects from one of your drugs.

it is all very random Alto. Sometimes I take the dose and I feel absolutely no different. 
sometimes I take the dose and a few hours later I feel worse.

 

why would moving it to 12 noon be advised? What is the purpose for this? 
 

My symptoms have no pattern whatsoever which suggests it’s dysregulation as opposed to an adverse reaction. As sometimes I get more stable days/periods. And when I cut my dose things always would get worse does not suggest Adverse as surely things would improve? 
 

Yep I can do some journals but there is absolutely no pattern so I think my CNS is trying to stabilise more than an adverse reaction here.

[Altostrata]

Sertraline may be interfering with your sleep. If you take it earlier, you may be able to sleep and this will help overall.

[XJessieP]

On 8/31/2022 at 12:00 AM, Altostrata said:

Sertraline may be interfering with your sleep. If you take it earlier, you may be able to sleep and this will help overall.

Good idea! Thanks 

[Altostrata]

Please let us know how you're doing.

[XJessieP]

On 9/2/2022 at 9:57 PM, Altostrata said:

Please let us know how you're doing.

Hi alto

its very very up and down 

I don’t know whether to updose or just hold here for a long time. What is advised after many rapid changes?

[Altostrata]

Those daily notes will help sort this out.

[XJessieP]

First daily note 01-09-2022

 

8am - hardly slept as every time I try to drift off to sleep akathisia wakes me back up abruptly. Horrific sensations within.

 

9am - still in bed wondering how on earth I’m going to get through today. Very sweaty, trembling and scared. Struggling to breathe. Intrusive thoughts going very fast. Feeling very suicidal.

 

10am - have breakfast. Boiled eggs. This increase symptoms. Burning all over.

 

11am - still in bed and very suicidal and scared.

 

12 midday- fallback to sleep to sleep briefly but am awoken to the most toxic feeling.

 

1pm - get up to try and brush teeth etc. 

 

2pm - have small amount of lunch. 
Intrusives still very strong and feeling very agitated, don’t know how to go on like this. 
 

3pm - try to get dressed. But so little energy, feel as though I’m dying or going to die. Trembling again, can’t breathe. Akathisia still there and terror too. Feet feeling like they’re being zapped

 

4pm - have a shower.

 

5pm - watch something on YouTube but cannot concentrate. All brain is saying is to end my life as never going to get better and you are doomed.

 

6pm - have dinner. Tinnitus Increases after eating. 
 

7pm - terror increases, very very bad wondering how to go on. 
 

8pm - stuck in bed in trembling terror so bad that I want to end it all. Vision almost completely goes, so fuzzy and blurred and then I have these dark tunnels that get larger - hard to explain. 
 

9pm - take sertraline dose. 
feeling a tiny bit calmer now (that started before the dose though).

 

10pm - watch something on tv.

 

11pm - eat a snack and fall asleep.

 

sleep quite well (this is variable)

 

[XJessieP]

Second daily note 02-09-2022

 

8am - slept quite well considering but the suicidal thoughts bombard my being even during sleep and waking. Also psychotic nightmares. Wake to immense muscle pain. Feelings of despair.

 

9am - symptoms continue to build , wonder how I’m going to keep doing this. 

 

10am - have food, boiled eggs and an apple with some sea salt, this doesn’t increase my symptoms this time. It seems to be very variable. 

 

11am - try to walk round in the back garden but too much for my body, body feels very weak and sick. Buzzing all over from trying to walk.

 

12 midday - talk to a friend on the phone but even this excites the nervous system and I start to tremble and become very agitated.

 

1pm - try to sit down in my bath tub but near impossible as so agitated.

 

2pm - have some food, no appetite at all have to force feed myself. Smoothie. 

 

3pm - intrusive thoughts that just do not seem to want to stop. How I’m doomed and hopeless. How I won’t stabilise. How I will have to give up and leave my cat.

 

4pm - still in bed. No motivation or joy or positive feelings at all. Feel like I’m going to die. Try to do some positive affirmations but makes no difference. 

 

5pm - try to sit in the garden but light too bright for system and feels like burning all over.

 

6pm - have food which does rev up system. Some vegetables and pork.

 

7pm - slightly calmer and watch tv but even weird things on tv send waves of doom through me.

 

8pm - still calmer.

but sudden severe head pain comes on.

 

9pm - take dose of sertraline 40mg in pill form.

 

10pm - very scared and suicidal from severe symptoms and don’t know how to keep going like this. 

 

11pm - watch positive video on how to re wire the brain. 

 

12pm - try to sleep but brain will not let me. 

 

1am - still lying in bed trying to sleep but no joy.

 

2am - finally fall asleep but awake again 1 hr later feeling so raw and scared.

 

3am - on phone feeling despair as cannot get a break from relentless suffering. Severe nausea and agitation building.

 

4am - very restless and internal despair.

 

5am - go to the toilet and have loose bowel movement.

 

6am - feeling very suicidal. Still very nauseous. Still in bed very scared.

 

7am - drift off for ten minutes to be awoken by toxic sleep.

 

[XJessieP]

Third daily note 03-09-2022

 

8am - slept quite deeply and feeling calmer this AM (seems to random and up and down). Nervous system very destabilised.

 

9am - flicking through things on phone in bed.

 

10am - have breakfast. Fruit cocktail with some nut butter on oatcakes.

 

11am - feel immense panic inside me and sensations of burning.

 

12 midday - calmer again. Try to clean my room a little but too much for my body so have to lie back down again. Trying to do anything revs me up severely. Burning and buzzing increases.

 

1pm - have a salad for lunch. Increases terror.

 

2pm - still in terror don’t know how to keep doing this.

 

3pm - terror died down a little bit. Try to watch something on my phone. Watching things seems to bring on random and strange intrusive thoughts and feelings of doom.

 

4pm - feeling a bit calmer. Visitors came round but not for long as can’t cope with many visitors.

 

5pm - visitors left. Try to make some tea but very exhausting. Have some chicken noodle soup.

 

6pm - have a very short walk but get very paranoid and have to come back.

 

7pm - sit down for a bit with my cat and ruminate on how broken my nervous system is.

 

8pm - snack and milkshake. Seems to make me feel worse.

 

9pm - take dose of sertraline 40mg

 

10pm - lie in bed and watch tv. Still brings on feelings of doom. Neuropathy in legs.

 

11pm - read some success stories and try to give myself a tiny bit of hope.

 

12pm - can’t get off to sleep.

 

1am fall asleep for a few hours. 

 

[XJessieP]

Fourth daily note 04-09-2022

 

8am - woke early to severe stomach cramps and sweats. Feeling very disoriented. Feelings of poisoning. 

 

9am - still in bed, so little energy and so exhausted. Feeling brain dead.

 

10am - try to listen to meditation but too agitated. Have food - bacon, eggs and some spelt bread.

 

11am - akathisia increases tenfold. Feelings of can’t go on.

 

12 midday - still akathisia. Have to call friend for support. Very depressed and suicidal.

 

1pm - very severe symptoms still. Attempt some food but unable to eat.

 

2pm - in bed holding on but feeling like I am going to have to do something bad.

 

3pm - still in bed. No energy to wash or dress. Feeling like I’m going to die and very hopeless. 

 

4pm - attempt to read something online but unable to. Someone tries to call me and brings immense panic through me. 

 

5pm - very severe akathisia now. Unable to cope at all. All nerves feel they are on fire.

 

6pm - try to eat a little but sets of symptoms even worse. Chicken and potatoes.

 

7pm - don’t know how I’m coping, feel totally consumed by sensations my nervous system is producing. Head feels like it will blow out.

 

8pm - severe.

 

9pm - take dose of sertraline 40mg in pill form. Still so very severe. Burning.

 

10pm - know I’m never going to be able to get rest like this. Total despair. 

 

11pm - calling for help but nobody to help me. Brain constantly telling me to updose or do something to help. 

 

12pm - feel like this is the end. Pain so severe I feel I could cut off my limbs.

 

don’t sleep.

 

[XJessieP]

As you can see it is all incredibly random. It doesn’t seem to be related to dosing which I’ve read suggests it is just pure destabilisation? 

[ChessieCat]

Please state the date, and include the time you take your drug/s and the dose you took.

[XJessieP]

43 minutes ago, ChessieCat said:

Please state the date, and include the time you take your drug/s and the dose you took.

Sure 

[XJessieP]

I have made all the alterations  

[XJessieP]

@ChessieCat do you have any comments or thoughts on what may be causing my current severity?

[Altostrata]

16 hours ago, XJessieP said:

akathisia wakes me back up abruptly. Horrific sensations within.

 

What are these sensations? You do not have them while falling asleep, correct?

 

15 hours ago, XJessieP said:

11am - akathisia increases tenfold.

 

What are these sensations? Are they worse after you eat eggs or bacon?

 

Are there times in the day that you feel better?

 

Do you feel better or worse after taking sertraline? 

 

Quote

July 2021 Updose to 46mg Feb/March 2022 ish?

 

Did you feel better when you were taking 46mg?

[XJessieP]

4 hours ago, Altostrata said:

 

What are these sensations? You do not have them while falling asleep, correct?

 

 

What are these sensations? Are they worse after you eat eggs or bacon?

 

Are there times in the day that you feel better?

 

Do you feel better or worse after taking sertraline? 

 

 

Did you feel better when you were taking 46mg?

Q1 - some nights I have the sensations so badly that I cannot sleep at all.

 

Q2 - yes they get worse after eating. 
 

Q3 - it’s all

completely random. There is zero pattern to my symptoms. No consistency whatsoever. 
 

Q4 - I feel neither better or worse after taking the sertraline. 
 

Q5 - yes when I updosed last year I felt much better very quickly.

 

this year I seem to have crashed so badly I don’t know what to do. I’m terrified I will die.

[Altostrata]

What are these sensations you describe as "akathisia"?

 

13 hours ago, XJessieP said:

Q5 - yes when I updosed last year I felt much better very quickly.

 

Perhaps you might updose to 41mg?

[XJessieP]

15 hours ago, Altostrata said:

What are these sensations you describe as "akathisia"?

 

 

Perhaps you might updose to 41mg?

Yes I could try that.

I am just worried about “kindling”. Will it be harder to down if I keep going up? Also worried it might make me worse.

 

akathisia immense agitation with severe terror

[Altostrata]

It is unlikely an increase in dose of 2.5% would cause akathisia.

 

What do you mean by "agitation"?

[XJessieP]

1 hour ago, Altostrata said:

It is unlikely an increase in dose of 2.5% would cause akathisia.

 

What do you mean by "agitation"?

ok it’s just I tried a updose a couple of times earlier this year as it had always helped in the past but this time it didn’t seem to help and even made me feel worse BUT I don’t know if it was just too big updose or ongoing wd’s that I linked to the updose?

what do you think?

 

agitation so bad you want to tear your skin off

[Altostrata]

On 9/11/2022 at 4:02 PM, XJessieP said:

ok it’s just I tried a updose a couple of times earlier this year

 

How much did you updose?

[XJessieP]

11 hours ago, Altostrata said:

 

How much did you updose?

Much more than 2.5% I think

 

 

[XJessieP]

11 hours ago, Altostrata said:

 

How much did you updose?

Do you think I’m going to survive this?

[Altostrata]

On 9/10/2022 at 2:28 PM, Altostrata said:

Perhaps you might updose to 41mg?

 

[XJessieP]

On 9/14/2022 at 2:34 AM, Altostrata said:

 

Looking at my history do you think it would be best to slowly updose then? 
 

I get scared it won’t work and I’ll be trapped.

 

but where I am right now doesn’t feel all too good

[ChessieCat]

Q:  What dose are you currently taking?

 

Your drug signature states 40mg since 4.8.22.

 

Alto has twice made the suggestion that you updose to 41mg; on the 9 September and two days ago.

 

If you are concerned about taking an extra 1mg, then you could try a smaller increase.

 

Edited September 15, 2022 by ChessieCat

[XJessieP]

47 minutes ago, ChessieCat said:

Q:  What dose are you currently taking?

 

Your drug signature states 40mg since 4.8.22.

 

Alto has twice made the suggestion that you updose to 41mg; on the 9 September and two days ago.

 

If you are concerned about taking an extra 1mg, then you could try a smaller increase.

 

this is correct. 40mg since 4/8/22.

 

im just worried updosing won’t work and I’ll be trapped? 

[Altostrata]

Quote

Updose to 46mg Feb/March 2022 ish? GP advises make tiny cut to test the waters system went nuts GP advised to do further 23% to 40mg holding at 40mg since 04/08/22

 

You felt better at a higher dose than 40mg, correct?

 

We often see updosing works, but we cannot promise it. If you don't want to do it, stay at 40mg. 

[XJessieP]

9 hours ago, Altostrata said:

 

You felt better at a higher dose than 40mg, correct?

 

We often see updosing works, but we cannot promise it. If you don't want to do it, stay at 40mg. 

Yes I felt much better than this on higher doses last year but I was nowhere near this destabilised back then. It seems the more destabilised the more likely updosing can be a bad move?  But still not at all well last year on this stuff  hence why I wanted to come off.

 

but this is so severe. Is this CNS destabilisation Alto? I’m so scared going up will fry my brain. But it won’t do that will it? Will this settle down?

 

it’s not a good idea to taper right now is it?

[ChessieCat]

9 hours ago, Altostrata said:

but we cannot promise it.