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Gertie: Too fast taper off 50mg Zoloft a little over 3 months ago - considering reinstatement

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Gertie

HI everyone - thank God I just found you!

 

My 19 year old daughter has been on 50mg Zoloft (sertraline) since 2008.  This summer we tapered her off over a 6-week period (which unfortunately I now know was WAY too fast).  She did great, no issues, until last week, almost EXACTLY 3 months later.  Withdrawal symptoms of fatigue, dizziness, syncope, headaches, falling, nausea, stomach pain have been coming and going for 5 days straight.  She's missed two days of school during mid-terms.  It started on the day she got her period so at first I attributed it to that.  Then I thought maybe she had the flu.  Then I thought she was overwhelmed with her first semester of college.  Never dawned on me it was the sertraline.  But when it hit her hard again last night I stayed up all night researching and once I came across this board and read the intro pages I KNEW that's what we are dealing with. It seems to be getting worse each day.  I feel horrible that I didn't research more before doing the taper.   I stupidly trusted her Dr.

 

Now that we are close to a week past the 3-month mark, I'm thinking I need to immediately try reinstatement to see if it will help.  I have a call into her Dr. to call in an Rx, because we used all of hers up when she tapered off.  Since it's a Sunday of a holiday weekend I'm not too hopeful, and am considering taking her to Urgent Care to see if we can get an Rx there to get started today.  I also think he won't believe that these symptoms have anything to do with the sertraline.

 

Based on my reading here I'm guessing that if we try the reinstatement, I would start her at 1mg and leave it there for 1 week?  If symptoms improve, leave it there, but if they don't,  maybe move to 1.5mg?  

Does that sound right?

 

But if she seems worse then do I taper off for about a week, or faster or slower?

 

I'm just sick this is happening to her - I feel totally responsible and like a horrible parent.

Thank you all so much for being here to help those of us who come after you.

 

Edited by Shep
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Gridley
On 11/10/2019 at 11:56 AM, smkroll said:

Based on my reading here I'm guessing that if we try the reinstatement, I would start her at 1mg and leave it there for 1 week?  If symptoms improve, leave it there, but if they don't,  maybe move to 1.5mg?  

Does that sound right?

 

But if she seems worse then do I taper off for about a week, or faster or slower?

 

Welcome to SA, Gertie.

 

Yes, start at 1mg.  It takes about 4 days for a dose change to get to get to full state in the blood and a bit longer for it to register in the brain, so in around a week you should have an idea of whether 1mg is working.  As you said, if symptoms improve, leave it there.  If they don't, you could go to 1.5.  If she's worse, stop immediately.
 
For symptoms to kick in at the three-month mark is remarkably common.
 
You seem to have a good handle on the topic, but here's a link on reinstatement:
 
About reinstating and stabilizing to reduce withdrawal symptoms. -- at least the first page of the topic
 
Here's a link specifically about Sertraline, including how to obtain the small doses you'll need (liquid Sertraline, making your own liquid, weighing with the AWS Gemini-20 scale, available on Amazon.
 
 
Good luck!.  We're glad you found your way here.
 
 
 
 

 

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Gertie

Thank you so much for the reply!

 

Just hung up from her Psychiatrist.  We haven't been to him in over two years - started having her developmental pediatrician monitor her Rx instead, but have not received a return call so I reached out to him.  Super grateful he was willing to return a call to an old patient on a Sunday, but frustrated at the conversation.

 

He is calling in an Rx for 50mg sertraline - wants to put her right back up on her old dose.  I asked if we could at least start with 25, but no.  Said he knows about the hype of Antidepressant Discontinuation Syndrome, but in all his years he's never seen it, so wasn't willing to discuss it with me.

 

So I'm going to break the 50mg in 1/2, then dissolve that 1/2 in 25ml water to make 1mg/ml doses.  

 

He wants to see her this week, and she refuses to lie to Drs so I'm scared he will be angry when he finds out I am only giving her 1mg.

 

Really appreciate your time and help.

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Altostrata

Welcome, Gertie.

 

If I were you, I'd phone him back and make a firm request for liquid sertraline so you can titrate up. Any doctor can prescribe these drugs. If this psychiatrist isn't any help, you could leave a phone request for your GP or pediatrician to do it.

 

Very few doctors, including psychiatrists, know anything about psychiatric drug tapering or withdrawal, much less low-dose reinstatement. If they did, this site would not exist. I look forward to the day that they do.

 

I would not see this psychiatrist, he sounds like a dinosaurian jerk.

 

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Gertie

Is it ok to ask follow up questions here?

If so, I have one!

 

I started my daughter on 1mg sertraline yesterday at 3:00pm.   Made a liquid solution of 1mg/ml by cutting his stupid 50mg Rx in 1/2, then dissolving that 25mg in 25ml water.

 

About 3 hours later she noticed her headache was much reduced, and she felt hungry for the first time in days.  Ate her whole dinner without stomach pain.  By bedtime she was starting to feel more dizzy, weak and stronger headache again - but stomach still felt better.  Today she still feels crummy, but not as bad as yesterday before that first dose.

 

I'm taking this as a positive sign.  I read where it says here that "A slight immediate improvement is a good sign, this probably will progress as the drug ramps up to steady-state over a week."

 

However, I also read somewhere on here (which unfortunately now I cannot find again) that doing a reinstatement 3 months out will hopefully help reduce symptoms, but not completely alleviate them.

 

So my question is, after a week at this 1mg dose, if her symptoms are improved but not alleviated, how do I know if we want to keep her at 1mg, or try to increase to 1.5mg?

 

 

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Altostrata

It will take at least 4 days for the drug to reach steady-state in her bloodstream. She should be feeling more stable as time goes on. I'd give it at least a week.

 

1mg is a very small amount, it could be that she might do better on a little more -- but you'd be surprised how often these very low-dose reinstatements are enough.

 

Please tell your daughter to stop worrying. If it works, it works, and the signs are excellent that it will work. Please ask her to be patient.

 

Why is she taking the other drugs?

 

(Please confirm you want to use your present screen name.)

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Gertie

OK thank you.  She's now starting feel worse, about 30 minutes after her 2nd dose (around 4:15pm), which is scaring me.  Increased headache and nausea.  Opposite of what happened yesterday.  Could be because she took it on an empty stomach even though I brought her a snack to take it with?  She was already feeling nauseous and headache BEFORE taking it (hence not eating the snack), so it's hard for me to know.

 

She's on the other meds because 3 years ago she was diagnosed with a rare genetic neurological disorder called Hereditary Spastic Paraplegia (HSP).  It is related to ALS and has symptoms similar to MS.  She is basically missing most of a gene that produces a protein her CNS needs to talk properly to her muscles.  Her symptoms appeared hard and fast and needed management - she suddenly was unable to walk.  We started off trying to manage them with cannabis oil, and had some decent results but they were temporary.  So a year into her diagnosis we wound up eventually deciding to go the pharmaceutical route to improve her quality of life.  Those two meds have helped tremendously with her HSP symptoms and aren't something I anticipate she will ever be able to wean off of, barring gene replacement therapy as a future cure.

 

 

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Altostrata

Perhaps she would do better with only one 1mg dose per day. I'd give it a week, please let us know how she's doing.

 

Please clarify your screen name preference.

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Gertie

Yes she's currently on 1mg so I will just continue with that for a week and check back in.

 

I sent a message to She per the instructions in the warning I received to change my screen name.

 

Thank you for all of your help.

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Gertie

 

One-week update and a few questions.  

 

First, I want to say that my daughter is currently doing so much better.  I started the 1mg sertraline reinstate on Sunday afternoon, and we are continuing that protocol.  At day 4 she had about a 60% or so improvement in symptoms.  It continued over the next 3 days, and I'd say she now feels about 80% better than she did one week ago.  I cannot thank you all enough.  Really.

 

Second, @Altostrata, I wound up in an argument on the phone with her psychiatrist and told him we would not be returning.  So as of now I am managing this by myself, and will begin searching for someone who understands what we are really dealing with.   I loved your comment above about him being dinosaurian. 🙂

 

Third, I just want to say thank you to all of you Administrators and Moderators for what you are doing to help all of us.  I have spent the past week reading non-stop and learning from your information and other people's stories on this site.  I have gone back through my daughter's medical and medication history, and I'm truly angry and disgusted with all of the many many many doctors, psychiatrists, neurologists, etc we have seen, all of whom overlooked the timing of her POTS, HSP(Hereditary Spastic Paraplegia) and other neurological symptoms with changes in her Zoloft dosages!!!  I now believe she probably never needed to be put on Amitriptyline to help with nerve pain for her HSP - I think it was all due to a delayed reaction to Zoloft changes made several months prior.  Yet another drug we will most likely need to help her taper off from in the future. ARGH!  But one step at a time.  If I’ve learned anything here it is not to change anything else while tapering.

 

And now for my questions:

 

1.  I am making a 25mg/ml solution by dissolving 25mg sertraline in 25mg water.  I’m making it, using it that day and 3 following days for a total of 4 doses, then tossing the rest and starting over.  Is it possible in those 3 days that some of it can evaporate?  I haven’t seen much on here about that.  If so it would mean my solution is becoming more concentrated over the 3 days.  I know how important consistency is, so I’m a bit worried about this.

 

2.  Along with that would be the idea of the liquid sertraline.  However I’ve read stories of people who make the switch and have waves for a bit.  Since we are already at such a low dose, should I be messing around with that?  This poor kiddo is in her first semester of college trying to keep her grades up while dealing with all of this and I’m trying to keep her symptoms minimized as best I can.   Is it okay to keep dissolving the pills and just keep diluting with more and more water as we taper?

 

3.  As of right now she has daily mild waves of dizziness, nausea, headaches, tremors, tingling/burning, along with pretty moderate steady fatigue and flares in the nausea and headaches at times.  So it's manageable enough that she can get to school, etc.  I read and understand that reinstatement is not to eliminate symptoms but to reduce them.  Therefore I am assuming I just keep her at 1mg for the next 3-4 weeks?  And if she doesn't stabilize here (ie: things get worse) would I consider updosing to 1.25mg or something like that at that time?

 

Thanks for your help, and seriously God Bless You for creating this site.

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marconyc
On 11/10/2019 at 11:56 AM, Gertie said:

HI everyone - thank God I just found you!

 

My 19 year old daughter has been on 50mg Zoloft (sertraline) since 2008.  This summer we tapered her off over a 6-week period (which unfortunately I now know was WAY too fast).  She did great, no issues, until last week, almost EXACTLY 3 months later.  Withdrawal symptoms of fatigue, dizziness, syncope, headaches, falling, nausea, stomach pain have been coming and going for 5 days straight.  She's missed two days of school during mid-terms.  It started on the day she got her period so at first I attributed it to that.  Then I thought maybe she had the flu.  Then I thought she was overwhelmed with her first semester of college.  Never dawned on me it was the sertraline.  But when it hit her hard again last night I stayed up all night researching and once I came across this board and read the intro pages I KNEW that's what we are dealing with. It seems to be getting worse each day.  I feel horrible that I didn't research more before doing the taper.   I stupidly trusted her Dr.

 

Now that we are close to a week past the 3-month mark, I'm thinking I need to immediately try reinstatement to see if it will help.  I have a call into her Dr. to call in an Rx, because we used all of hers up when she tapered off.  Since it's a Sunday of a holiday weekend I'm not too hopeful, and am considering taking her to Urgent Care to see if we can get an Rx there to get started today.  I also think he won't believe that these symptoms have anything to do with the sertraline.

 

Based on my reading here I'm guessing that if we try the reinstatement, I would start her at 1mg and leave it there for 1 week?  If symptoms improve, leave it there, but if they don't,  maybe move to 1.5mg?  

Does that sound right?

 

But if she seems worse then do I taper off for about a week, or faster or slower?

 

I'm just sick this is happening to her - I feel totally responsible and like a horrible parent.

Thank you all so much for being here to help those of us who come after you.

 

Very sorry to hear that. When I was first put on Zoloft, I stayed on for about a year and the was told to taper over a 2-week period. I ended up on 150mg for another 16 years. Then I tried to taper again more slowly, but still pretty fast--maybe 6 months. I went really slowly from 150 to 100 and was doing great, so I dropped to 75 and then 50mg really quickly. I ended up on 200mg of Zoloft and 1mg of Abilify. Looking back, it's pretty clear to me that the withdrawal effects and too-fast tapers resulted in every increasing dosages of meds, and ultimately polypharmacy. 

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Altostrata

Sad to say, finding a doctor who will understand is very difficult. Dr. Stuart Shipko is in Pasadena.

 

Otherwise, your GP can prescribe the drugs you'll need, it doesn't have to be a psychiatrist.

 

Sertaline comes in a liquid by prescription, that might be easier for you. You'll have to refrigerate the DIY liquid in a tinted bottle; 4 days is a good limit. You'd use a smaller oral syringe to taper, or dilute the liquid.

 

For your daughter, there is no bumpy switch to liquid, the liquid sertraline is "new" to her system.

 

36 minutes ago, Gertie said:

As of right now she has daily mild waves of dizziness, nausea, headaches, tremors, tingling/burning, along with pretty moderate steady fatigue and flares in the nausea and headaches at times.  So it's manageable enough that she can get to school, etc.  I read and understand that reinstatement is not to eliminate symptoms but to reduce them.  Therefore I am assuming I just keep her at 1mg for the next 3-4 weeks?  And if she doesn't stabilize here (ie: things get worse) would I consider updosing to 1.25mg or something like that at that time?

 

You'll need to track her symptom pattern. If she gets progressively better over the next few weeks, she may not need an increase in sertraline.

 

Normally, there are ups and downs, see The Windows and Waves Pattern of Stabilization

 

Is she still taking baclofen? What times of day does she take her drugs, with dosages? Do her symptoms follow any daily pattern?  Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. You can post 24 hours of notes at a time in this topic, with a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right.

 

She needs to keep her drug schedule very, very regular. Inconsistencies can cause symptom flare-ups.

 

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Gertie

@Altostrata yes I am tracking her symptoms daily and keeping dosing times consistent.  Although each day is a bit different and continues to change as she starts to stabilize, there has been somewhat of a pattern that looks something like this:

 

8:00-9:00am wake up.  Feel a tad nauseous (2). Feel fatigued which lasts all day (7).

9:00am eat breakfast, take 10mg baclofen

late morning - dizzy/nausea or headache/nausea (was a 6-7 but now decreased to a 3).  Lasts for maybe an hour

noon - 2:00pm - eat lunch (depends on school schedule)

3:00 or 4:00pm - dizzy/nausea or headache/nausea (was a 6-7 but now decreased to a 3).  Lasts for maybe an hour

4:00pm - 1mg sertraline

6:00pm - dinner, feeling good, chatty

9:00pm - sometimes headache, but only on days doing homework on computer.  

10:00pm - take 10mg baclofen and 25mg amitriptyline

midnight - 1:00am go to bed.

 

Her baclofen and amitriptyline dosing schedules have been the same since it was prescribed in 2017.  No symptoms until withdrawal from sertraline.

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