Roserdl: withdrawing from Zoloft - need advice about reinstating to taper or stay off

[Roserdl]

Final note before signing out again

 

One. Deeply appreciate the work people put on the site to help others.  I have found though coming here is often not helpful when in recovery.  I was taking the timelines of recovery (based on six pages of recovery stories in over a decade which have been posted on this site) as gospel.  It wasn't until I talked to several coaches whom have long term experience working with 1000s of people as well as meeting various other people on boards to get a broader context.  I was told (pleaded with) NOT to take the stories on the boards as any indication of how I will recover.  One coach (whom has working with thousands) states she has repeatedly seen people with complex histories heal within one to two years (or less).    And, seen people with perfect tapers have longer timelines (obviously taper well, this is not to scare the taper people, a good taper is smart, do it).  I wanted to note the two complex histories I know personally, one healed in two years with marked improvements at one year (CT Paxil, concurrent benzo taper and did some big NO NOS), the other at a year. Both on over 10 years with prior CT.   They had horrible symptoms (yes,taper) true, but they were healed within a time period most probably would consider they could endure.  

  I am putting this in because I know there are people here who are suicidal and looking at these stories as the sole guidance is not going to tell you ANYTHING about how you individually heal.   People should know according to Baylissa Fredrick, symptom intensity is NOT correlated to duration.  There are a couple of new communities which have formed inner compasss by Laura Delano and compassionfocusedhealing.com by Baylissa Fredrick.   Good for support - inner compass is strong for networking for support among members.  Baylissa is VERY compassion focused and kind, and she has experience with over 15,000 individuals.   Forums can be dangerous in general in w/d because you have NO idea the full story (I was relayed by one coach that very often in cases approaching years and years there were other things going on NOT put in public comments.   I wouldn't even read this stuff if I had to do it over again.  Knowing that the expected outcome is healing and everyone's timeline is different is enough to get on with.  No other story is going to tell you anything about you.   If you are new here, be careful with where you go and what you take in because it can be very hard to shake.   Good luck everyone. 

 

Also beware melatonin, I was trying very low dose melatonin to extend my sleep and it made me dysphoric. I was taking it at higher doses but after two nights of extreme dysphoria with a dose as low as 1.5, I realize it was driving extreme ideation.  If you are finding extreme depression or s.i.  and taking melatonin,you might want to experiment to see if it is hurting.   Mine was so bad it could have killed me. 

[Kat66]

I must admit I don’t get a lot from reading the success stories for that precise reason. Everyone is different. I take on board the overall message that we all heal…eventually, but the longer I’m on this journey the more I tend to just try not to compare my path to that of others too much. One of my traits is too much comparing; why aren’t I feeling any better yet at this point etc etc and that’s not good for my mental health. 
 

Big hug @Roserdl xx

[Roserdl]

HELP!  I never tag the mods.  This is an emergency.  

 

Ok.  I am very near to the end of my rope and entirely giving up.  It has become all consuming and far more than I can cope

 

Situation.  Tapered off Zoloft again from late May to Mid September.  Did better with drops from August on.....making slow improvements.   I was dropping several mg a week and in September I was still not doing great but ideation was a few times a week for short periods (not 24/7 with searching for means)) and I was able to go out and do basic functions and even get a little faint laugher in evenings with feeling)

 

I took it that my body really had rejected the reinstatement, so I went off.  I should have immediately reinstated a few mg when I started to get unrelenting dysphoria but I had a few weeks of this when I started to taper so I thought it would even out in a month or so but it hasn't.  I know how stupid this was - so no need to point it out.  

 

My question.  My last drop off was 3 mg.   I was wondering:

 

-because I had evidence of kindling and improvements with drops, would it be a complete exercise in futility to reinstate a few mg to see if it levels out the severe ideating torture depression?

 

-I was doing alight in September on doses in the lower spectrum (even with the fast drops), so does that mean my body didn't entirely reject the drug and it wasn't completely kindled?  So a few mg may have some effect

 

- Since I have had such bad side effects at higher amounts (it toasted my vision when I was at higher doses and I felt more disconnected and depersonalized) is it possible to try something like a small dose of Prozac or another SSR or would this be riskier?

 

@RachelSusan

 

- Or since I am now eight weeks out just try to get through this extreme part (I don't know if I can, its the crazy ideation you get with new withdrawal - should this settle in a bit?

 

@Frogie

 

I have such problems with control and lack of acceptance which have really harmed me in this process.

 

@getofflex

 

I realize no one can know for sure what would happen with a reintroduction, I was just wondering if you think it would be worth trying at all - or a very low dose of different SSRI.  Or there is any chance this will settle out enough so that I have the ability to go on.....right now I don't feel I will be able to....

 

Many of my original symptoms did not return. I did have increase in heart palpitations and huge anxiety jolts and heart racing upon first awakening but this has markedly settled down and a few rounds of deep breathing stop it in five or ten minutes.  The main symptom is off the charts depression and neuro-emotions that can be hardly suppressed and intrusive thoughts.  Physically I am still improving with increased body sensation, sexual stuff coming on line and digestion.  But, I have terrible intermittent brain burning and face burning.  

Worst symptoms by far are the depression and ideation which no amount of coping skills or mindfulness is touching...

 

@ChessieCat

 

[getofflex]

I'm finding your drug signature confusing.  You say 

 

"January 2021 went off Zoloft 25 mg and supplemented with Fish Oil/L Theanine/L Tryptophan to keep up Serotonin level

zoloft taper 100 t0 25mg over one year. concerns of vision heart side effects jumped at 25

went off in January "  

 

Please be more concise and specific.  Just list the drug name, and then the specific date, as best you can remember, along with each dose increase or decrease.  See Kat66's signature above for an example of how to post your drug history.  Leave out descriptions, symptoms, etc, only put the drug name, dosage, and date.  Don't say "off for 3 weeks", indicate the specific dates as best you can remember.  

 

I don't understand the following: 

 

"February 12 2022- either med reaction/serotonin toxicity with Zoloft mix other serotonin natural supplements"

 

I don't understand the following.  Again, state the date, instead of saying "over the next 2 months" please.  

 

"Over next 2 months re instated  Zoloft to 65mg but extreme kindling at 65 with vision loss."

 

Edited November 14, 2022 by getofflex

[Roserdl]

I will try to get this in later to signature but here is a more concise hx for mods - ty - above post document current emergency. TY

 

@Onmyway

Here is the recent relevant history

 

On and off Zoloft 20 years 

 

Most recent 2018 Zoloft january 150 mg:

 

Summer 19 150 mg zoloft to 100 mg

 

March 2021: 100 mg (off for three days, reinstated depression)

 

November 2022 50 mg

 

January  15 : 25 mg (about a week)  then OFF

 

Started taking serotonin supplements -

 

Reinstated after about two weeks to 50 mg (depression)

 

February:  Started having serotonin syndrome symptoms - high blood pressure, paralysis - told to start and then stop zoloft multiple times due to contradicting doctors opinions about symptoms being from withdrawal or serotonin syndrome 

 

Klonopin: .25 mg took about eight total doses in the entire months of February - discontinued

 

Stopped all supplements (l-theanine, gabba, l tryptophan, 5http)

 

When tried 50 mg violently ill - throwing up, akathesia, depression, anhedonia depersonalization, lost 30 lbs, horrible digestion issues, near total body numbness....

 

Off drug from mid February to March 1:

 

Slow reinstatement titrated up to 50 mg April

 

Up to 65 mg May

 

Symptoms improving through May (body sensation increase, PSSD improves, sleeping more, digestion issues resolve, akathesia goes away, body sensation increase, depression improves but still there with hopelessness, dp/dr goes away, anhedonia awful but regained ability to cry and experience horrid emotions - total blunting gone, and chronic suicidal ideation, neuroemotions)

 

Other meds tried:

Mirtazapine: 3.5 mg for six weeks for sleep, not every night,Mid March  stopped end of April

 

In March: two hospitaliations

- one dose of Zyprexa - bad reaction - stopped. .5mg

-one dose of Abilify - bad reaction stopped 2mg

-melatonin up to 5 mg - stopped due to dysphoria

Very occassional benadryl for sleep - 25 mg

 

Supplements: Fish oil, magnesium, b vitamins (D/C), MCT oil (D/C), Vit, C, D, and Cytokine suppress

 

May updose 65mg Zoloft results in near total fuzzing of vision - 

 

Reverse taper begins

 

End of June  Zoloft 45mg

End of July Zoloft 35 mg

End of August Zoloft 25 mg

September 16: OFF - doing better on date of last drop

 

Improvement or holding steady with Zoloft drops from August to September: more functional, depression less, vision massively improves, slight emotional feeling returning, slight increase in motivation, able to perform some tasks, start cooking a little  - did not worsen during this time

 

One week later severe depression and suicidal ideation ensue- didn't reinstate due to improvement with drops

 

November 14:   TODAY

 

Many original symptoms still gone,do not return:

Current symptoms:

Extreme constant S.I.

 

Severe depression

 

Heart palpitations (calming down)

 

Anxiety upon awakening (calming down)

 

Sleep (ironically can fall asleep on own for first time this happens without melatonin or magnesium/lemon balm tea but sleeping less.  Three to six hours broken sleep

 

Neuro-emotions on steroids: grief, rage, fear, anxiety, resentment

 

 I think that should give a clearer history - I will try to cut it down in the signature

 

 

@getofflex

 

 

[getofflex]

Roserdl am currently in a wave and dealing with major stress factors  and cannot deal with this big long post. When you can give me a concise drug signature as requested I’ll see if I can try to help you.  

Edited November 14, 2022 by getofflex

[getofflex]

You may want to click on the three dots in the upper right hand corner of your post an issue report so that one of the other mods could also help you.

[Roserdl]

@getofflex

 

Very sorry you are in a wave.

 

@Santino

 

I actually updated the drug signature.  It is just there are a lot of details which do not fit in there but I will keep it really short here

 

2018 Zoloft 150

 

March 2021 Zoloft 100 

 

November 2021 Zoloft 50 mg

 

January - 25 mg one week - completely off second week

 

I was on serotonin supplements.  This seemed to induce serotonin syndrome but the drs argued so we don't know, but resulted in dose changes.  So I had a lot of rapid dosing changes in February - off two week and then:

 

I tapered up to 65 mg with improvements - tapered down off in September (the best month I had at the lowest dose) & then crashed

 

There were a few one dose tries of other meds not tolerated.  Remeron for 6 weeks sleep.  Dsyphoria with melatonin.  

 

Now off 8 weeks

 

I think that is about as simple as I can make it - the drug signature is updated with doses and specific dates.

 

The question:  Should I try a small reinstatement at a low dose or has it been too much time, too much on and off?  I am not expecting it to fix me but perhaps take away S.I. 

 

I wasn't trying to make it complicated - I just wanted to have all the info you might need.  I'm sorry.

 

I have tagged other mods and per getofflex request reported posts, much fuller details are above.  Thank you

 

I have a liquid so I can do really low doses,so that is not an issue with weighing pills

 

 

[Roserdl]

@shep

 

Tagging admins, I didn't in my report post, I don't really know how to do this....

 

@manymoretodays

 

See posts above

[manymoretodays]

Hi Roserdl,

Okay Roserdl.  On the emergency, and your feelings of SI, and if you really cannot make it on your own, or may feel close to harming yourself in any way.  You do need to reach out on the ground.  Call someone.  Please.  We are just not equipped.  We are an internet forum.  So please, for all of us, and all humanity call someone.  We care.  You matter.  Just click on the right upper arrow, and read the first post.  Then you also may find resources as far as who you could call in this topic below.  And adding in you might try 988, it's new- no geotracking, they've spent a lot of time on this for use in the States.  You can text there too.:

4 hours ago, Roserdl said:

The question:  Should I try a small reinstatement at a low dose or has it been too much time, too much on and off?  I am not expecting it to fix me but perhaps take away S.I. 

 

You are referring to the Remeron(mirtazapine) above?  You say you have a liquid of something, there is no drug name given though.  And it sound like mirtazapine(Remeron) was your last drug???  The portion I quoted is confusing without drug names given or dates.

 

4 hours ago, Roserdl said:

January - 25 mg one week - completely off second week

 

I was on serotonin supplements.  This seemed to induce serotonin syndrome but the drs argued so we don't know, but resulted in dose changes.  So I had a lot of rapid dosing changes in February - off two week and then:

 

I tapered up to 65 mg with improvements - tapered down off in September (the best month I had at the lowest dose) & then crashed

 

There were a few one dose tries of other meds not tolerated.  Remeron for 6 weeks sleep.  Dsyphoria with melatonin.  

 

Now off 8 weeks

 

And this ^, is all in the year of 2022, I take it. 

So you are now off Remeron??  That's not even in your signature in 2022.

 

And you are not taking any drugs or herbal supplements or anything now?  And okay, I do see your supplements listed.  Are any of those new additions to your regimen?

 

Anything recently that could have thrown you into chaos?  Alcohol, drugs, new herbs or supplements.  Situations.  What are your symptoms of WD at this time.  I do see and acknowledge SI.  What else.  Help us out here. When you can, when you can......

We are not a instant advice, do this and you will be fine type site.......of course we'd love to help, and will if we can.  After gathering enough information.

 

Hang in there Roserdl.  And I hope my response does not overwhelm.  I am just trying to clarify and then cover all the possibilities.  Before making suggests.  Other than Hang on, Call and connect with someone on the ground/in your area, stay safe, try some non-drug, non-supplement coping with someone on the ground- breathing, 4-7-8(you'll find it on youtube), try a couple things even,  and remember your reasons to live.  I can give you one good one-  so you will see more healing, sometimes we have to wait, but it's often worth it.

 

Here is a portion of your signature now, and I'm going to add in lavender what would help us with that, to know what you are referring to:

2021: March off Zoloft 3 days, reinstate  ?for depression- Zoloft 75 mg Summer of 21

November 50 mg Zoloft

2022- January 25 mg ? Zoloft - off mid January - Reinstated 50 mg last week of January

Stop Zoloft again due to potential serotonin syndrome ? when

March resume zoloft - titrate from 0 to 65 until May (bad reaction at high dose, reverse taper- what is a reverse taper, I think we are used to using the term taper for when one tapers down in dose strength, that "reverse taper" just isn't clear to me what that refers to, you could just say tapered down?  I think) from late may to 9/16; OFF ZOLOFT so this is when that taper down to off occurred, the time frame

Supplements:  MCT oil, vit d & C, magnesium, fish oil, cytokine suppress. lions mane

 

Where is the Remeron(mirtazapine) in your signature.  I saw it in 2019, but nothing recent.  In you narratives it sounds recent, so get that clear and in the signature if you are at all up to doing that.

 

It's not as hard as it seems. 

Use AccountSettings/signature/updates/edits to get there quickly.  Work out on paper how you will edit it, and then type it in.  Don't forget SAVE when done, on the lower left

Edited November 14, 2022 by manymoretodays
more, oh my gosh......and just edited again

[manymoretodays]

Roserdl,

I know that was very long.  My response above. 

So.....take your time with signature update/edits, or answering any questions.

Meantime, please update for us when you can.  Concerned.

 

L, P, H, and G,

mmt

Edited November 14, 2022 by manymoretodays
none

[Roserdl]

Here is the full post above with all relevant details, I know this is a bit long but it is a bit complicated, involves kindling, improvement with drops, and timeframe.  Last January and February were complicated with serotonin syndrome/withdrawal confusion and doses were changed rapidly during this time due to conflicting advice from doctors:

6 hours ago, Roserdl said:

I will try to get this in later to signature but here is a more concise hx for mods - ty - above post document current emergency. TY

 

@Onmyway

Here is the recent relevant history

 

On and off Zoloft 20 years 

 

Most recent 2018 Zoloft january 150 mg:

 

Summer 19 150 mg zoloft to 100 mg

 

March 2021: 100 mg (off for three days, reinstated depression)

 

November 2021 50 mg

 

January  15 : 25 mg (about a week)  then OFF

 

Started taking serotonin supplements -

 

Reinstated after about two weeks to Zoloft 50 mg (depression)

 

February:  Started having serotonin syndrome symptoms - high blood pressure, paralysis - told to start and then stop zoloft multiple times due to contradicting doctors opinions about symptoms being from withdrawal or serotonin syndrome 

 

Klonopin: .25 mg took about eight total doses in the entire months of February - discontinued

 

Stopped all supplements (l-theanine, gabba, l tryptophan, 5http)

 

When tried 50 mg Zoloft (after going off due to serotonin sydrome concerns) violently ill - throwing up, akathesia, depression, anhedonia depersonalization, lost 30 lbs, horrible digestion issues, near total body numbness....STOPPED Zoloft.

 

Off drug from mid February to March 1:

 

Slow reinstatement titrated up to 50 mg April

 

Up to 65 mg May

 

Symptoms improving through May (body sensation increase, PSSD improves, sleeping more, digestion issues resolve, akathesia goes away, body sensation increase, depression improves but still there with hopelessness, dp/dr goes away, anhedonia awful but regained ability to cry and experience horrid emotions - total blunting gone, and chronic suicidal ideation, neuroemotions)

 

Other meds tried:

Mirtazapine: 3.5 mg for six weeks for sleep, not every night,Mid March  stopped end of April

 

In March: two hospitaliations

- one dose of Zyprexa - bad reaction - stopped. .5mg

-one dose of Abilify - bad reaction stopped 2mg

-melatonin up to 5 mg - stopped due to dysphoria

Very occassional benadryl for sleep - 25 mg

 

Supplements: Fish oil, magnesium, b vitamins (D/C), MCT oil (D/C), Vit, C, D, and Cytokine suppress

 

May updose 65mg Zoloft results in near total fuzzing of vision - 

 

Reverse taper begins

 

End of June  Zoloft 45mg

End of July Zoloft 35 mg

End of August Zoloft 25 mg

September 16: OFF - doing better on date of last drop

 

Improvement or holding steady with Zoloft drops from August to September: more functional, depression less, vision massively improves, slight emotional feeling returning, slight increase in motivation, able to perform some tasks, start cooking a little  - did not worsen during this time

 

One week later severe depression and suicidal ideation ensue- didn't reinstate due to improvement with drops

 

November 14:   TODAY

 

Many original symptoms still gone,do not return:

Current symptoms:

Extreme constant S.I.

 

Severe depression

 

Heart palpitations (calming down)

 

Anxiety upon awakening (calming down)

 

Sleep (ironically can fall asleep on own for first time this happens without melatonin or magnesium/lemon balm tea but sleeping less.  Three to six hours broken sleep

 

Neuro-emotions on steroids: grief, rage, fear, anxiety, resentment

 

 I think that should give a clearer history - I will try to cut it down in the signature

 

 

@getofflex

 

 

 

My question can I try to reinstate small amount of Zoloft to stem off the extreme ideation and depression or given the above history and kindling at higher doses, would this just complicate a very complicated picture even more.  I have liquid prescribed Zoloft so it would not be hard to reintroduce small dose.  I am two months out now so I now that makes it even riskier after a lot of risky things.  I wouldn't even ask but I am struggling so much I am desperate.  TY.

 

@manymoretodays

 

Per safety question, I am trying everything I know to stay safe outside of going to hospital because they have made things worse in past and it is like being in agony in a prison.   I have been reaching out constantly to all kinds of supports 

 

 

@manymoretodays

 

 

 

 

[Roserdl]

And, I didn't see this above @onmyway

@manymoretodays

 

Recent chaos: Stress, daughter moved out, major support for w/d  Stopped Zoloft 2 months ago, thrown back into very severe depression/ideation state after achieving much calmer and stable state in August/September (why I dropped off, my body didn't seem to like the drug, but maybe it was just too high of a dose), coping skills are not holding so I end up sobbing and rocking for hours on ends sometimes which I know does not help, I do use coping skills but I'm exhausted because of the sheer intensity for so many months (September BEST month by far).  I take cold showers, walk, journal, distract, use coaching and online support groups, call family, breathing exercises

 

Thank you for being so kind Many More Todays.  I have begun believe I have made too many mistakes to heal and desperate as all the coping methods I use are having no impact.   I don't think I can out endure this and there is no help.  The thought of being in this level of pain for years is untenable. 

[Roserdl]

If someone could answer.  I would start  today.  But not sure amount or if I should at all.   I am thinking 3 mg

[Roserdl]

I went ahead and reinstated 3mg of Zoloft - about half hour ago.

 

It didn't make me throw up like when I did too high a dose in February, so I will take that as a good sign.  I will watch over the next five days to see if I see any changes up or down.  But, to be honest, my symptoms are so severe and brutal it is going to be very difficult to attribute a change to Zoloft one way or another unless its something that is entirely new. 

 

I did this because I am very close to being hospitalized todayand I need to try something that may take the symptoms down enough for me to survive a day.   I know this won't work immediately but it could start to kick in within a week or so, so I will update the symptoms daily here to see any changes.

 

Right now my worst symptoms:

- severe face, brain burning

-suicidal ideation

-severe depression

-massive fear and anxiety loops

-emotional disconnect/anhedonia

-sleep issues 

 

lesser symptoms:

Continued weight loss (lost another five pounds this week)

skin crawling

cognitive issues (I am not terrible here, I can articulate a conversation but having a hard time staying engaged and following the thread, but I can do it.  In the evening, I sometimes can have long conversations with cousin about things other than withdrawal but only occassionally

Vision less clear

Floaters

Nerve pain and numbness in hands

 

Yesterday's symptoms:  Core symptoms were chronic through out day - did not really fluctuate much

Broken sleep - about 5 1/2 hrs

INTENSE Severe brain/skin burning, depression, s.i. during wake up at night and morning

crawling skin

Very little appetite  (did eat, digestion is working ok)  a bit of trouble swallowing sometimes but pretty minor

Pretty much continued this way way all day

Intrusive thoughts, anxiety, intense fear, hopelessness

 

Around 7 p.m. - took cold shower and worked hard to redirect - depression lessened, felt able to manage - felt as horrible as I felt it would be possible at that level to manage a day - symptoms lesser in evening - able to hold hour long conversation with daughter

10:30 sleep - woke up at 11 - 12 - 1 (up until 230) then up at 5:30  So 5 1/2 hours very broken sleep but better than nothing and the many days of no sleep or minutes of sleep I had last February - Woke with severe brain burning and all previous noted symptoms.  Worst symptom today is the burning. 

 

Took 3 mg zoloft - unsure of exact time - about half hour ago   -

 

 

 

 

 

[Roserdl]

@manymoretodays

 

Should I stop the reinstatement?  Was it too high?  Should I drop back to 1 mg?  

 

I am a desperate woman and my symptoms were so atrocious this morning I felt as if I don't get some assistance in reducing them I will die. But, it appears now that since I reinstated I won't be able to get better at all because I just did another big change and my body doesn't  react well to drugs. 

 

I didn't have an immediate bad reaction - just a weird metallic taste in my mouth.   

 

If I can't get better there is no point in doing this -

 

I am early enough in at one dose to adjust it down or stop if you think it is necessary

 

I would like your advice - I don't think I can get better anymore after so many changes too fast - at least when I was off before I was working towards a goal - each day my body was healing.  But, my body can't heal well on the drug, right?

 

 

 

[RachelSusan]

@Roserdl,

Please continue to check in with @manymoretodays before considering any change after 5 days. I am not saying that is your plan, I am just concerned about what I believe might possibly be another change.  I am concerned because I know what my thinking was like when I was in your type of situation. No finger pointing here, I support you. I know it is very hard to wait for relief and especially if relief does not come in 5 days, or 10 days.

1 hour ago, Roserdl said:

I know this won't work immediately but it could start to kick in within a week

After all the medication changes you have been through it may take a little longer.  As you know I want the very best for you as everyone else on this site does. 

 

Please continue to check in here. Keep in mind everyone here is a volunteer, so remember that a slow return on a question is not personal.  Just keep trying in that very kind way you have, much like you are doing now.

[RachelSusan]

@Roserdl My last post was made before I saw your post of a few minutes ago. Also @manymoretodays will not see the link you put in your most recent post.  Look at mine here, see it is in the blue, now look at yours, no blue.  You start by typing @manymore then when you see the drop down menu appear you click on that rather than continuing to type out the name. If it is working the name will appear in your message in the blue.

 

You are already second guessing yourself. 1mg vs 3mg.  Talk to Manymoredays.  Whatever dosage you pick please stick with it unless you get immediate adverse effects or a mod tells you differently. It is this changing that is so damaging to your body. Please please please please please.  Talk first to Manymore or to whichever moderator may help you. PLEASE. I think a small reinstatement is a good idea. I am however begging you not to keep making changes. I am begging you because I have been there. I have never been so direct and will not keep at it, it has been said.

[Roserdl]

I wasn't expecting it to kick in in five days but you can start to sometimes see a very gradual improvement to know if its going to work.  I am not thinking it will be much better in a week. 

 

@RachelSusan

 

It feels very much as if I have done too much wrong to get better or ever be normal again.   I tried very much just to bear the symptoms (I should have reinstated right away and I definitely should have stopped when I hit a better spot and just stabilized there for much longer before dropping again, I would have a much better chance of my body readjusting, stabilizing and then resuming a much slower taper.  

I very much fear I have done about all I can do with Zoloft.   I took the 3 mg out of total desperation that if something doesn't calm the symptoms I won't survive.    I am not myself and see no hope.  I fully realize the damage of what I have done. 

I am utterly terrified and there is no help that actually helps.  I am in extreme physical and emotional agony and talking and breathing doesn't help.  If I didn't have anhedonia, it might be different because there is still external engagement with the world.     I call hotlines but how many times can you say the same things over and over again.  Hospitals don't help but that's where everyone tells you to go because that's all there is....I know I am no different than many others.   I have always tried to post positive things since I came back but my sufferings have been much much worse than in the threads. 

 

It seems like if I want to heal, I have to stop the drug.

 

I know I need to stay steady which is what I was trying to do when I was off, just not take anything and hope the extreme stuff would stabilize in a few weeks or months to be more bearable.   I couldn't take it another second so I popped the med again but it is likely not a viable solution.    I messed up way way too bad.

 

I am fully aware of my mistakes, there is nothing I can do and I am devastated I have done so much wrong I won't be able to get better.

[RachelSusan]

@Roserdl The majority of people here have made many huge mistakes while tapering, as have I.  I have experienced all the symptoms you have listed and more.

 

If reinstating a small dose helps you, why not?  I was off about a month perhaps a month and a half before I reinstated.  But I went back on at 12.5 and got way sicker.  Eventually with the help of the mods here I found my way. But I second guessed everything. I agonized at times over a .02mg change.

 

Yes you are in hell. There is nothing worse than this. But what you start to do now will impact the coming weeks.

 

You have already sent manymoredays a post so now you wait. If you don't hear anything my inclination would be to continue on as you are doing, based of course on my situation with Zoloft, but you have your own thoughts. If you truly want to stop the reinstatement do so and then wait until you heal naturally. You will heal naturally, it just takes a long time.  There also is no guarantee a small reinstatement will help, but if it takes the symptoms level down even a little bit it would be so much better. But whatever you decide, stick with it.

[manymoretodays]

Hi Roserdl,  Yes, I will be on the road and then taking care of family matters shortly.  So.  I do need to be brief with replies from my android.  I cannot do spacing, links, or quotes.  I do think that your idea of doing just 1 mg tomorrow is good.....given all your concerns and history.  Important after that to do same dose, taken at same time, every day.  Then try some Notes please.  Simple.  Date at the top.  Times on the left.  On the right.....and note times throughout the day and night for 24l hours.....on the right.....note drugs, supplements, by full name, and dose.  Then to the right....also note symptoms briefly- describe, so we can see objectively before and after your Zoloft and other, what is happening.

Edited November 15, 2022 by manymoretodays

[manymoretodays]

Yes.  Agree with RS.  4 to 7 days is good timing to expect, if any change in symptoms with reinstatement.  And....thanks for letting us know of situation change with your daughter and safety plan.  Awesome.  You got this I think.  Hold steady.  Report objectively with NOTES.  Even if done after the fact.  Use paper and pen.  Then post 24 hours at a time.  Breathe and any relaxation you can do.  Eat.  Outside for short exposure and even a 5 minute walk might help.  Just do it.  In your jammies if you have to.  Hug a tree.  Well....whatever speaks to you.  Okay.  Best. L, P, H, and G. mmt

[manymoretodays]

P.s.  just edited first reply.  Some grammar corrections.  Roserdl, you will improve.  Okay.  Believe it.  It's the darn neuroemotions and ruminating intrusive thoughts in your way.  We got you.  Carrying you along.

Edited November 15, 2022 by manymoretodays

[Roserdl]

@rachelsusan

 

@manymoretodays

 

Stopping reinstatement.  I immediately had loose stools and full blown near psychotic meltdown.

 

I won't take another dose

 

There appears to be nothing to help me and I fear I made it worse with the 3 mg rather than 1 mg

 

I don't think I can live through this intensity of symptoms.  It is by far the worse I have ever been (maybe that is not true as I have had many horror days)

 

I have nothing to help me now.  My one last hope of some relief is gone.

[conkaia]

21 hours ago, Roserdl said:

There appears to be nothing to help me and I fear I made it worse with the 3 mg rather than 1 mg

 

I don't think I can live through this intensity of symptoms.  It is by far the worse I have ever been (maybe that is not true as I have had many horror days)

 

I have nothing to help me now.  My one last hope of some relief is gone.

Hi I just wanted to say, hang in there.  You can and will get some relief; you just have to let your nervous system stabilise.  I agree with what others on your thread have said regarding sticking with whatever reinstatement you decide to make.  It might be that 3mg is too high, maybe the lower dose of 1mg would be more suitable.  However again, there's no guarantee and if you decide to reinstate 1mg, you need to give yourself time to stabilise on this.  WD is an absolute hell and the only thing that helps is the passing of time.  Stay strong, you're not alone.

[Altostrata]

On 11/14/2022 at 9:29 AM, Roserdl said:

End of June  Zoloft 45mg

End of July Zoloft 35 mg

End of August Zoloft 25 mg

September 16: OFF - doing better on date of last drop

 

It appears you went off 25mg Zoloft in mid-September. 

 

On 11/14/2022 at 10:58 AM, Roserdl said:

Remeron for 6 weeks sleep.  Dsyphoria with melatonin.  

 

At some point, you took mirtazapine for 6 weeks. Did you cold-turkey off that? When did you last take it?

 

You tried taking 3mg Zoloft (?) again for 1 day, is that correct?

[Roserdl]

I'm off all psych drugs and not going to take anything else.  Given my propensity to change it will just keep it in a set place.

[Altostrata]

19 hours ago, Altostrata said:

At some point, you took mirtazapine for 6 weeks. Did you cold-turkey off that? When did you last take it?

 

[Roserdl]

Update.  Severe akathesia and intense pain in head.   Feels like neurological misfiring.  Burning sensation.   Constant inner restlessness.   Burning neuropathy 

[manymoretodays]

Hi there Roserdl,

Any improvement in the last 24 hours?

Anything that has helped?

Have you tried the weighted blankets yet? 

Weighted blankets and bed tents for restlessness, akathisia, insomnia, and anxiety

also:

Akathisia vs restlessness, anxiety, agitation

Paresthesia: pins and needles, numbness, tingling, burning sensations, aka neuropathy

 

I am sure hoping that you have found some, if even just a little relief since you last updated.  And sending healing.

Best, L, P, H, and G,

mmt

[Roserdl]

Update

 

TRIGGER WARNING

 

Hospitalization, I was very suicidal

 

Family does NOT get what is going on - calling family in hysterics saying I can't live anymore.  This is due to the akathesia and NOT depression.  This resulted in my sister hiring lawyers and attempting to force treatment.

 

I was in a psych ward and very unstable with no treatment.  I hadn't slept in many days so they dosed me with Haldol and Valium (twice) - First time I slept for twelve hours, the next time I felt worse.  STOPPED

 

I do not have it in me for a signature update but they kept trying me on multiple one dose of drugs.  The only drugs I took more than a couple times (most only once) were trazadone (I would say five doses, 25 mg) and ibupofen for head pain.  None of it worked.  It all made me worse. I went along because (I was beyond desperate and decided to give up, so I was desperate for any relief)....2.  it kept me from court with my sister threatening force injection of anti-psychotics.  I am out of the hospital, I seriously thought my family was going to battle for incarceration and I was begging them by the end to stop as I was getting sicker and sicker every day.  I stopped most drugs after about a week (I was in for 12 days)

 

I have VERY severe burning internal head pain.  It is calmer today after a couple of cold showers, still not great but it was awful yesterday and this morning.

 

I am not on Trazadone now as it was only five doses and it didn't make sense to do a long tape of a drug I was on for such a short time.  Ativan .5mg probably took 6 total. So no taper with that either as it was scattered an not more than that....

 

I wasn't really on anything to make it long term which is one of the few goals I met

 

I am very sick with burning pain in hands and feet, the inner restlessness and fear, but mostly its the head pain.   I hardly sleep.  I should have stayed on Zoloft and held for a long time like everyone said.  I was doing so well with drops, my guess is if I stopped even at a few miligrams I would be so much better now.  It makes me heartsick to lose all that work to be this ill now. 

 

I am thinking this is non recoverable. I don't read a lot of positive outcomes with akasthesia.

 

I thought very seriously about suicide this morning and came close to acting but did not.  Suicide is not easy and this experience has made me deeply believe in assisted dying for those with very severe chronic pain.   Anyone who spent ONE day in this pain would immediately go along.  I feel like I am being tortured when it is really bad.  I am just trying to stay calm now and it hasn't gotten to be the real intense pain.

 

Does anyone actually recover from this?

 

I am off meds again.

 

It was my full plan to stay off all the drugs and had I not been sent to the hospital I would have - I begged my partner not to call but he was convinced I was ready to act.  What is the point of saving me if it makes me non recoverable?  He regrets it, he sees that I have gotten worse.

 

There is actually a lot more to say about the hospitalization but I can say that the denial of this as a neurological injury and attribution of my desperate outreach from withdrawal symptoms rather than 'borderline personality disorder'.  I was officially diagnosed however with discontinuation syndrome, they just couldn't accept the scope and seriousness of that diagnosis. 

 

I can't believe I survived twelve days in there.  I had to stay calm to avoid being force injected and I had to make a LOT of decisions for larger goals (not getting put on a bunch more meds and NOT being forced to stay on unit for months on end). I am sure the meds I took will horrify people here but please remember, I was viewed as basically med non compliant and refused 90% of scheduled meds    These are the real world choices someone in a hospital crisis faces.  It is a sad fact that even S.A. will say go seek professional help and safety in the crisis, so please understand what happens when people are forced). 

 

I suppose I should note any positives as well.  I felt good enough to go outside and do a shot loop walk around.  Pain is better this evening.  Head pain I would say is the worst symptom.  To be honest, I did have a 10 hour break when it disappeared and today, it has been down or somewhat gone for several hours as well.  Akathesia is more extreme agitation and fear than the pacing,  when I lie down I do move my legs back and forth but I don't have the full blown pacing. 

 

I absolutely credit cold showers with still being here. I am taking four to six a day.  They usually help.  In fact, they always help because they calm things but don't always reduce the head pain.   My head just feels so tender inside and I feel weak and afraid.  After keeping it together in the hospital, it was exhausting and having to fight to stay out, I utilized a lot of energy for it.

 

Right now

 

Head Pain:  Six

Akestethia agitation/fear: Four

Shakiness/Tremoring/ Two

 

 

 

 

[arbor]

Dear @Roserdl  I'm so sorry you've had to go through this.  People who haven't been in w/d could never, ever imagine the torment.  People do recover and I believe strongly that you will too.  It may take everything you've got to endure, but you'll make it, and be glad you did.

I hold you in my heart,

Arbor

[Roserdl]

Symptom journal:

 

Miraculously, did go in and out of sleep last night several times. This lasted from around 8 (I think) until 3 - awake since then.   I would say half hour to hour sessions, maybe four/four and a half total. 

 

Woke up in extreme fear, had to take cold shower

 

Two cold showers today so far - both decreased head pain and resulted in slight lowering of anxiety symptoms. 

 

Fear has persisted throughout day.   Intensity has varied to extreme (upon first awakening - to distractable on computer, able to take short walk).  I feel myself start to doze but I am having a hard time relaxing into it, and fight it because my other symptoms are worse when I wake up.   I find it easier to relax in the evening.  

 

Pain in head has come down but its very tender.   Worst today at 7 - best at a 2 for short periods. 

 

Reduction in tingling and neuropathic pain in hands and feet.  Reduction in tremoring sensations in abdomen and legs.

 

Felt a lot of muscle contraction around lungs and neck earlier in day.  This has relaxed.

 

Not a lot of pain in body overall.  

 

Off all meds.  Feels like a calming down from the hospital. 

 

Forcing myself to stay calm is definitely decreasing pain symptoms so maybe if I can keep this up for a few weeks, the head pain will really level off.  

 

No appetite but eating organic greens and organic grass fed beef.  Avocados for fat. Fish oil is ONLY supplement which I can tolerate.  No magnesium except for what I get in mineral salt I drink in water. Eating HIGH fat, and HIGH protein.   May add TINY bit of MCT oil for fuel. 

 

Drinking a LOT of water to flush everything out. I think my head may have hurt this bad last spring but its hard to remember.   I am just staying very quiet.  Walking just enough to keep circulation going ok, spent some time in the yard.  

 

Not much of a hardship to stay off any meds as they aren't doing anything anyway and I have to report a net gain in stopping ALL meds including ibuprofen and tylenol.    I am not a huge pacer with this symptom.  I mainly move my legs back and forth like a cricket on coach.  

 

I'm pretty much conserving all energy.   I would say I am improved over when I came home from hospital with exception of the tenderness of head pain 

 

 

[Roserdl]

1 hour ago, arbor said:

Dear @Roserdl  I'm so sorry you've had to go through this.  People who haven't been in w/d could never, ever imagine the torment.  People do recover and I believe strongly that you will too.  It may take everything you've got to endure, but you'll make it, and be glad you did.

I hold you in my heart,

Arbor

 

Hey Arbor - thank you

 

I am feeling very discouraged because I can't seem to find very many akathisia success stories - I am crushed about the meds in hospital because before it I was getting definite windows (small but there) and functioning better.  I was getting suicidal so my partner called even though I told him it would just make things worse.   

I am not taking anything except fish oil and eating high protein and high fat.  If the pain would dissipate in my head I would feel a lot better but I guess I should not be surprised. I have had a brutal withdrawal from day 1.   I was doing so much better in September when still on a small dose of Zoloft, should have stuck around 6 mg and just held for a long time.  Too late now.  I was miserable then but that seems like good times.  My head didn't hurt nearly as much and I could semi function to drive to the store or take a few mile walk.  I am just walking the long driveway now.  

 

The only good things I can say is the tremoring is MUCH less, the burning in hands and feet has subsided and I am not on any drugs that require a taper (so not stuck on a med which makes it worse and having to taper months to try to get off). 

 

Pain is not as intense today, more a four or five than level 1000.   The cold showers do help thank god there is SOMETHING that I can do to  stem it off.  Sleeping upright helps too.  I hope I sleep tonight.  My brain could SO use the rest.  I am actually getting more sleep off everything, be it broken and it shorter stints.  I got like two on trazadone, my short stints get me over four.  I guess I am 'lucky' to have that as from what I read some people don't sleep at ALL.  

[RachelSusan]

@Roserdl  Hello Roserdl,

I'm sorry to read about what you went through and how you suffered.  The pain from withdrawal is indescribable. No one else can even begin to imagine what it is like. I firmly believe though that you will recover. While the days in withdrawal are very hard, you will do it one day at a time and you will make it through. It may take a lot for you to get through this but I know you will do so. Better days await you.

 

Sending my support.

[Lauren90]

Hi @Roserdl,

Just stopping in to say I’m so sorry for what you’ve gone through. I too suffer from akathisia from withdrawing from sertraline (zoloft) and am in an awful wave at the moment. My husband is currently out of town and I thought I was going to have to go to the hospital two days ago because the akathisia and subsequent panic was so bad. You can message me any time.