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AliBrace: Hypnic jerks/muscle spasms since reinstatement


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Hi everyone! This is my first time posting on here. I’ll try to keep it as short and simple as possible. 

I was on Fluoxetine 40mg for about 10 years and quit cold turkey due to emotional blunting and decreased thought processing, it was negatively affecting my job and my life. I started experiencing delayed wd symptoms about 2-3 months after quitting (dp/dr, audio hallucinations at night, hives, flu-like symptoms, etc). I’ve since reinstated back on 10mg of fluoxetine (advised by my doctor) and it’s been about 12 weeks. The first few weeks were absolutely terrible but since then many of my symtoms have subsided except the jerking/muscle twitches. Since restarting, every night I experience intense hypnic jerks before transitioning into deep sleep. It’s extremely hard to get a full nights rest as my body jerks itself awake or I get adrenaline surges as soon as my body is relaxed and ready for sleep. I was taking 0.5mg of melatonin for about 4 weeks and it helped me so much, I was sleeping through the jerks with no interruptions, about 7 hours of full sleep a night. A few days ago the melatonin just stopped working and I haven’t slept the same since. The past 6 days or so have been so hard. I’m running on maybe 3-4 hours of sleep a night, if that if I’m lucky due to the jerking. I had one sleepless night and the jerking just went through the roof and it’s been ongoing since then. As soon as I’m sleep deprived my jerks get worse and it’s an endless cycle. I tried supplementing to possibly help with my sleep (ashwaganda, cb2 oils, l-theanine, magnesium) but nothing seems to be helping. I’ve taken Dayvigo for the last two days as I was desperate for sleep and needed something to function.
Has anyone else experienced this since reinstating and did it improve? I know I’m not completely stable yet on the 10mg but since starting most of my symptoms have subsided expect for the jerking and audio hallucinations before falling asleep. I never experienced hypnic jerks prior when I was on an even higher dose and for a longer period. Should I decrease my dose? My doctor is telling me to get off of it as she’s concerned about tardive dyskinesia. I’d like to see what others may have to say first before making any changes.
Any advice is greatly appreciated!
Thank you for taking the time to read this. 

September 26th 2015 - October 16th 2015: Seroquel 25mg (bedtime) / Fluoxetine 20mg 

October 2015 - Stopped taking Seroquel 25mg , continued on Fluoxetine 20mg

November 2015 - March 2015: Fluoxetine 20mg 

March 2015 - Fluoxetine 40mg (increased dose - estimated time as I can't completely recall exact month of switch)  

April 2015 - September 2023: Fluoxetine 40mg (stayed on fluoxetine 40mg for approx 9 years) 

September 2023 - October 2023: Off and on Fluoxetine 40mg (doctor told me to take every other day to make it 30mg) 

November 2023 - Fluoxetine 40mg (started taking 40mg again but sporadically) would forget dosages

December 2023 - March 2024: Nothing (ct Fluoxetine 40mg) 

March 12th 2024 - Fluoxetine 20mg 

March 22nd 2024 - Present: Fluoxetine 10mg (decreased dose to 10mg March 22nd 2024) 

 

 

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  • getofflex changed the title to AliBrace: Hypnic jerks/muscle spasms since reinstatement
  • Moderator Emeritus

Hello, and welcome to SA.  We are a volunteer-run community of people who have been or are getting off of psychiatric drugs.  First let me give you some basic information, and ask you for more information about your drug history.  

 

Can you please give us specific information in your signature about your drug history for all drugs and supplements you are on and have been on, especially for the past 18-24 months?  Please only give us drug names, dosages, and dates, as best you can remember, in a list format.  Please read the link below for instructions.  

 

How to List Your Drug History in Your Signature

 

Here is some important information about how these drugs actually work.  This explains why we get symptoms from going off of these medications, and why it's so important to taper slowly and carefully, and be very cautious about changing our doses: 

 

How Psychiatric Drugs Remodel Your Brain

 

It sounds like first of all, your nervous system was in withdrawal from abruptly stopping your fluoxetine.  If you read the first post of the link I just gave you, you will see why it is hard on the nervous system to do a cold turkey.  Your CNS (central nervous system) became destabilized.  Once this happens, our brains tend to become sensitized to the drug.  We call this kindling.  

 

Post Withdrawal Nervous System Hypersensitivity - Kindling

 

Then, when you were put on 20 mg, then down to 10 mg, it was too much, and you probably had an adverse reaction to this.  It may be that 10 mg is still too high of a dose for you.  

 

On 6/9/2024 at 4:44 PM, AliBrace said:

The first few weeks were absolutely terrible but since then many of my symtoms have subsided except the jerking/muscle twitches.

Can you please expound on this?  What were your specific symptoms, other than the jerking,  in the first few weeks of your reinstatement to 10 mg fluoxetine?

 

When I see your drug history, I will be able to advise you about how to help yourself in this situation.  

Please do not private message me.  Only tag me for urgent questions about tapering and reinstating - thank you.  

 

***Please note this is not medical advice.  Discuss any decisions about your medical care with a doctor who understands psych meds and how to withdraw from them, if you can find one.

 

Lexapro   Started Apr 15 2010 - 10 mg;  started taper August 2017, recent taper info: Apr 2 '20  0.18 mg; Jul 16  0.17 mg, Aug 23  0.16 mg, Oct 7  0.15 mg, Nov 8 - 0.14, Jan 16 '21 - 0.13, Feb 7 - 0.12, Feb 22 - 0.11, Mar 26 - 0.10, May 21 - 0.09, June 15 - 0.08 Aug 16 - 0.07, Oct 6 - 0.06, Nov 21 0.05, Dec. 17 0.04, Jan 14 '22 0.03, Feb 19 0.02, Apr 18 0.01, May 15 0.005,  Jul 8, 0.00.  Psych Drug Free as of July 8, 2022!!  Woohoo!!!

other meds: Levothyroxine 75 mg

magnesium in small amounts at 4 AM, before bed

suppl AM: fish oil, flax oil, vit C, vit E, multivitamin, zinc

suppl 8 PM: magnesium 350 mg, extended release vitamin C, melatonin 2 mg

 

Paxil 2002 - 2010, switched to Lexapro 2010 

Trazodone 50 mg. 2002 - 2019, fast tapered in 2019 

Xanax 0.5 mg as needed 2002 - 2019, up to 3x weekly 

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  • Moderator Emeritus

Here is our thread about hypnic jerks and muscle spasms.  

 

Muscle Spasms, etc.

Please do not private message me.  Only tag me for urgent questions about tapering and reinstating - thank you.  

 

***Please note this is not medical advice.  Discuss any decisions about your medical care with a doctor who understands psych meds and how to withdraw from them, if you can find one.

 

Lexapro   Started Apr 15 2010 - 10 mg;  started taper August 2017, recent taper info: Apr 2 '20  0.18 mg; Jul 16  0.17 mg, Aug 23  0.16 mg, Oct 7  0.15 mg, Nov 8 - 0.14, Jan 16 '21 - 0.13, Feb 7 - 0.12, Feb 22 - 0.11, Mar 26 - 0.10, May 21 - 0.09, June 15 - 0.08 Aug 16 - 0.07, Oct 6 - 0.06, Nov 21 0.05, Dec. 17 0.04, Jan 14 '22 0.03, Feb 19 0.02, Apr 18 0.01, May 15 0.005,  Jul 8, 0.00.  Psych Drug Free as of July 8, 2022!!  Woohoo!!!

other meds: Levothyroxine 75 mg

magnesium in small amounts at 4 AM, before bed

suppl AM: fish oil, flax oil, vit C, vit E, multivitamin, zinc

suppl 8 PM: magnesium 350 mg, extended release vitamin C, melatonin 2 mg

 

Paxil 2002 - 2010, switched to Lexapro 2010 

Trazodone 50 mg. 2002 - 2019, fast tapered in 2019 

Xanax 0.5 mg as needed 2002 - 2019, up to 3x weekly 

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@getofflex 

Hi there, thank you for your response. I'm still trying to navigate through this website, so I'm finding some things confusing. Am I able to edit my original post so I can add the things you've asked me to include? or do I have to make a new post? 

Also, thank you for linking those, I will have a read through them. 
Regarding my cold turkey/withdrawal experience, I think you're definitely correct in regards to my brain becoming sensitized. Also, my nervous system is probably in shock from all the moving around I'm assuming. What you've stated seems to make the most sense. No doctor seems to have answers for me and have asked me to just discontinue the drug out of fear the jerks will become permanent. Or they have prescribed me several other drugs to try and combat the jerking.

If I'm kindling, does that mean I no longer have a shot at reinstating? I wouldn't know where to start with tapering down from where I am now. What would you suggest? Would lowering my dose to 9mg maybe make a difference and if not would I slowly keep lowering until I notice a difference? It all seems so confusing. 

Responding to your comment regarding what I stated in my post "the first few weeks were absolutely terrible but since then many of my symptoms have since subsided except the jerking/muscle twitches". When I went back on my medication after 3-4 months of completely stopping the 20mg and switching to the 10mg, I experienced several side effects. These included, anxiety, depression, ocd (intrusive thoughts), depersonalization/derealization, panic attacks, dizziness, emotional blunting, confusion and insomnia to name a few within the first 7-9 weeks. I'm in my 12th week now on the 10mg and I'm still experiencing a bit of dp/dr (mostly lifted), some anxiety, insomnia and muscle jerking during the day and when falling asleep. I never experienced the muscle jerking throughout the day when reinstating, only at night. Now its progressed throughout the entire day. 

I'm not sure if this is how I respond to posts on here, if not please advise. I am using a laptop as I find it easier then using my phone. 

 

Thanks

September 26th 2015 - October 16th 2015: Seroquel 25mg (bedtime) / Fluoxetine 20mg 

October 2015 - Stopped taking Seroquel 25mg , continued on Fluoxetine 20mg

November 2015 - March 2015: Fluoxetine 20mg 

March 2015 - Fluoxetine 40mg (increased dose - estimated time as I can't completely recall exact month of switch)  

April 2015 - September 2023: Fluoxetine 40mg (stayed on fluoxetine 40mg for approx 9 years) 

September 2023 - October 2023: Off and on Fluoxetine 40mg (doctor told me to take every other day to make it 30mg) 

November 2023 - Fluoxetine 40mg (started taking 40mg again but sporadically) would forget dosages

December 2023 - March 2024: Nothing (ct Fluoxetine 40mg) 

March 12th 2024 - Fluoxetine 20mg 

March 22nd 2024 - Present: Fluoxetine 10mg (decreased dose to 10mg March 22nd 2024) 

 

 

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  • Moderator Emeritus

Please do not tag me.  I am following your thread, so I will already be notified when you post on your thread.  Thank you.  

On 6/13/2024 at 4:22 PM, AliBrace said:

Am I able to edit my original post so I can add the things you've asked me to include? or do I have to make a new post? 

Please make a new post.  Also, please recheck the years on your drug signature.  The last 3 lines say "2023".  Did you mean to say 2024?  Please correct this. As an online forum, we can only go by the information you give us, and it must be correct and accurate for us to give you the proper help.  Thank you.  

 

On 6/13/2024 at 4:22 PM, AliBrace said:

Also, my nervous system is probably in shock from all the moving around I'm assuming.

Not sure what you mean by "all the moving around I'm assuming".  Please explain.  

 

On 6/13/2024 at 4:22 PM, AliBrace said:

If I'm kindling, does that mean I no longer have a shot at reinstating?

Didn't you already reinstate to 10 mg?  I'm confused by your statement above.  

 

No problem, you are doing fine in your manner of posting.  If in fact you have been on the 10 mg fluoxetine since March 2024, I think it would be safe for you to reduce to 9 mg of fluoxetine now.  Let's try that, and see if your symptoms lessen.  I may very well be that 10 mg is still too high of a dose for at this time.  As we go on and off and back on drugs, our systems tend to become sensitized.  We call this kindling.  

 

Post Withdrawal Nervous System Hypersensitivity - Kindling

 

Please stay on the 9 mg for at least 4 weeks, to give your nervous system and chance to adjust to this lower dose.   Be sure you do not miss any doses!  Skipping doses is very bad for your nervous system, and will cause lots of problems, and worsen your symptoms.  Your doctor gave you bad advice by telling you to skip doses in the past.  Measure your doses carefully and be precise, and take it every day at the same time of day each day.  This will help you stabilize and feel better.  Avoid alcohol completely, as well as other mind altering drugs and substances.  

 

Here is some more basic information.  

 

 

This helps you understand what withdrawal syndrome is: 

 

Video on Recovery from Psych Drugs

 

Windows and Waves Pattern of Stabilization

 

 

Tapering is best done extremely slowly, and we generally taper by 10% of the current dose no more than once every 4 weeks, so that the reduction becomes exponentially smaller.  This is for the future, after you stabilize.  

 

 Why Taper by 10% of my Dosage  

 

Tips for Tapering Fluoxetine

 

Please do not private message me.  Only tag me for urgent questions about tapering and reinstating - thank you.  

 

***Please note this is not medical advice.  Discuss any decisions about your medical care with a doctor who understands psych meds and how to withdraw from them, if you can find one.

 

Lexapro   Started Apr 15 2010 - 10 mg;  started taper August 2017, recent taper info: Apr 2 '20  0.18 mg; Jul 16  0.17 mg, Aug 23  0.16 mg, Oct 7  0.15 mg, Nov 8 - 0.14, Jan 16 '21 - 0.13, Feb 7 - 0.12, Feb 22 - 0.11, Mar 26 - 0.10, May 21 - 0.09, June 15 - 0.08 Aug 16 - 0.07, Oct 6 - 0.06, Nov 21 0.05, Dec. 17 0.04, Jan 14 '22 0.03, Feb 19 0.02, Apr 18 0.01, May 15 0.005,  Jul 8, 0.00.  Psych Drug Free as of July 8, 2022!!  Woohoo!!!

other meds: Levothyroxine 75 mg

magnesium in small amounts at 4 AM, before bed

suppl AM: fish oil, flax oil, vit C, vit E, multivitamin, zinc

suppl 8 PM: magnesium 350 mg, extended release vitamin C, melatonin 2 mg

 

Paxil 2002 - 2010, switched to Lexapro 2010 

Trazodone 50 mg. 2002 - 2019, fast tapered in 2019 

Xanax 0.5 mg as needed 2002 - 2019, up to 3x weekly 

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Hi @AliBrace! I’m so sorry you’re dealing with this. I’m having the same problem from an adverse reaction and I know how awful it can be. Have you tried magnesium? That has helped lots of people with this. For me it’s hard to tell if it had an effect because the severity of my jerks varies night by night but it might be worth a shot. 

2012-2013 - 5mg Lexapro

2015-2016 - 5mg Lexapro

(the above are approximate dates but each time i was taking it for at least 6 months)

April 6, 2024 - one 10mg dose Lexapro and immediate adverse reaction 

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  • 2 weeks later...

So sorry about the tag, I was unaware. Thank-you so much for your response. I apologize for the delay, I have been struggling badly with insomnia for the past couple of weeks and have been off all forums and Facebook groups in the meantime. I was curious if the insomnia could also be related to reinstating? It has seemed persistent for the last 3 months, since my reinstatement began. Some small improvements but only with the help of melatonin here and there. Seems to be quite stagnant. 

 

Regarding the taper, I haven't made any moves yet as I'm trying to figure out which approach I would like to take (either making a liquid form or measuring the powder). I haven't quite decided yet. I think I'm also just really nervous about making the jump as I'm worried my insomnia and other symptoms will intensify. I will take your suggestion though and decrease as soon as I have figured out which method I'm most comfortable with. I have been told using the Gemini 20 is the most reliable scale for tapering, is this correct? 

If I do chose to make my own liquid, will this effect my esophagus or throat? I have acid reflex, so I'm concerned it may trigger it. Is it possible to dissolve the 9mg powder in a full water bottle to dilute it? Sorry for all the questions, I just want to make sure I don't mess this up. I will take a look at the links you have provided me. 

 

When I stated "moving around" I meant jumping from different significant dosages rather quickly after cold turkey. For example; my doctor reinstating me at 20mg after 3 months of being off cold turkey before I decreased it to 10mg a week later as the symptoms I was experiencing were so severe. 

 

Regarding your other response about reinstating, yes I am currently on 10mg. I believe what I meant was; is stabilizing possible after reinstating even though I'm experiencing these adverse reactions? I know no one can predict this, only time will tell. I just wasn't sure if others have experienced adverse reactions and they've settled over time. 

 

Could the hypnic jerks be associated with kindling? If so, would I just continue to taper even though I'm experiencing an adverse reaction? or would it be best to come off? I don't want it to become permanent. 

 

Again, thank-you for your quick response, I will do so. I apologize again for all the questions, I'm still learning and I find all this information to be quite overwhelming. I appreciate your patience. I will make the changes to my signature; I did indeed mean to put 2024 and accidentally typed 2023. 

September 26th 2015 - October 16th 2015: Seroquel 25mg (bedtime) / Fluoxetine 20mg 

October 2015 - Stopped taking Seroquel 25mg , continued on Fluoxetine 20mg

November 2015 - March 2015: Fluoxetine 20mg 

March 2015 - Fluoxetine 40mg (increased dose - estimated time as I can't completely recall exact month of switch)  

April 2015 - September 2023: Fluoxetine 40mg (stayed on fluoxetine 40mg for approx 9 years) 

September 2023 - October 2023: Off and on Fluoxetine 40mg (doctor told me to take every other day to make it 30mg) 

November 2023 - Fluoxetine 40mg (started taking 40mg again but sporadically) would forget dosages

December 2023 - March 2024: Nothing (ct Fluoxetine 40mg) 

March 12th 2024 - Fluoxetine 20mg 

March 22nd 2024 - Present: Fluoxetine 10mg (decreased dose to 10mg March 22nd 2024) 

 

 

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@Celeste1990

Hi Celeste, thank you. I'm sorry you're also dealing with this. It can be very distressing. Was this also through reinstating for you as well? Are you still on the medication? 

Yes, I have tried magnesium, but unfortunately experienced adverse reactions from that as well. I guess my system is just very sensitive at the moment. I seem to be able to tolerate low doses of magnesium glycinate, but can't take it every night as it makes me dizzy, light headed and disassociated the next day. My jerks also vary nightly, but always seem to be there. I haven't experienced one night since reinstating without them, just the severity differs.

How long have you had them for if you don't mind me asking? Do they sometimes prevent you from falling asleep also? 

 

Thanks for your response!  

September 26th 2015 - October 16th 2015: Seroquel 25mg (bedtime) / Fluoxetine 20mg 

October 2015 - Stopped taking Seroquel 25mg , continued on Fluoxetine 20mg

November 2015 - March 2015: Fluoxetine 20mg 

March 2015 - Fluoxetine 40mg (increased dose - estimated time as I can't completely recall exact month of switch)  

April 2015 - September 2023: Fluoxetine 40mg (stayed on fluoxetine 40mg for approx 9 years) 

September 2023 - October 2023: Off and on Fluoxetine 40mg (doctor told me to take every other day to make it 30mg) 

November 2023 - Fluoxetine 40mg (started taking 40mg again but sporadically) would forget dosages

December 2023 - March 2024: Nothing (ct Fluoxetine 40mg) 

March 12th 2024 - Fluoxetine 20mg 

March 22nd 2024 - Present: Fluoxetine 10mg (decreased dose to 10mg March 22nd 2024) 

 

 

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6 minutes ago, AliBrace said:

@Celeste1990

Hi Celeste, thank you. I'm sorry you're also dealing with this. It can be very distressing. Was this also through reinstating for you as well? Are you still on the medication? 

Yes, I have tried magnesium, but unfortunately experienced adverse reactions from that as well. I guess my system is just very sensitive at the moment. I seem to be able to tolerate low doses of magnesium glycinate, but can't take it every night as it makes me dizzy, light headed and disassociated the next day. My jerks also vary nightly, but always seem to be there. I haven't experienced one night since reinstating without them, just the severity differs.

How long have you had them for if you don't mind me asking? Do they sometimes prevent you from falling asleep also? 

 

Thanks for your response!  

Hi Ali! Mine came from an adverse reaction to Lexapro. I had been on Lexapro years ago without an issues getting on or off it. But I started experiencing anxiety and tried to get back on at too high of a dose and it triggered a bad reaction. I only took one dose 3 months ago and I’m still struggling with symptoms. I’m not taking any medication currently. My jerks ebb and flow, some nights they’re worse than others but I get anywhere from just one or two to 30 jerks every night. And it’s definitely affecting my sleep! I can usually fall asleep no problem but they’ll wake me up and make it hard to fall back asleep. I’m honestly not sure if the magnesium helps me or not either. I hope it gets better for you soon!

2012-2013 - 5mg Lexapro

2015-2016 - 5mg Lexapro

(the above are approximate dates but each time i was taking it for at least 6 months)

April 6, 2024 - one 10mg dose Lexapro and immediate adverse reaction 

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  • Moderator Emeritus
On 6/27/2024 at 8:12 PM, AliBrace said:

I was curious if the insomnia could also be related to reinstating? It has seemed persistent for the last 3 months, since my reinstatement began. Some small improvements but only with the help of melatonin here and there. Seems to be quite stagnant. 

Yes, it could.  You could still be having an adverse reaction to the fluoxetine.  That was why I suggested reducing it to 9 mg in my prior post.  

 

If you decide to switch forms of the drug (going from powder to liquid), I suggest you do this gradually, and do not also change your dose while you are transitioning from powder to liquid.  It's important to make only one drug change at a time (drug change being change in dose, change in form of the drug, change in manufacturers, etc).  This link will explain how:  

 

Cross Over From Tablet to Liquid

 

On 6/27/2024 at 8:12 PM, AliBrace said:

I have been told using the Gemini 20 is the most reliable scale for tapering, is this correct? 

I believe so.  Here is our topic on scales: 

 

Using a Scale

 

On 6/27/2024 at 8:12 PM, AliBrace said:

If I do chose to make my own liquid, will this effect my esophagus or throat? I have acid reflex, so I'm concerned it may trigger it

I don't see why it would.  Just to be cautious, stay in an upright position for 30 minutes after you take the liquid.  

 

On 6/27/2024 at 8:12 PM, AliBrace said:

Is it possible to dissolve the 9mg powder in a full water bottle to dilute it?

First of all, you will need to know how much of the active ingredient is in the powder.  A lot of the powder is filler, so 9 mg of powder will not be the same as 9 mg of the drug.  You will need to do some simple calculations to figure this out.   

 

1.  Calculate the average pill weight.  Weigh 10 pills on your scale.  Then, divide this number by 10.  This gives you the average pill weight. 

 

2. If your scale measures in grams, convert this to milligrams by multiplying this number by 1000.  This gives you your average pill weight in milligrams.  

 

3.  Divide your average pill weight (in mg) by the mg of the drug in the pill.  This will be the strength stated on the bottle.  

 

4.  To calculate how much powder you should take, multiply your new dose by the number you got in step 3, and this gives you how much powder you should mix in your bottle of water.  

 

Here is an example:  

 

1. Your bottle says fluoxetine 20 mg.  That means each pill contains 20 mg of the drug (active ingredient).  You weigh 10 pills, and the total is, say, 1 gram.  Divide this by 10 to get the average pill weight, and you get 0.1 gram.  

 

2. Multiply this by 1000 to get you average pill weight in milligrams, which is 100 mg.  

 

3. Divide 100 mg by 20 mg, and you get 5.  

 

4. To calculate your dose, multiply your new dose, say 9 mg, by 5, and you get 45 mg.  You should take 45 mg of powder to get your 9 mg dose.  

 

On 6/27/2024 at 8:12 PM, AliBrace said:

is stabilizing possible after reinstating even though I'm experiencing these adverse reactions?

You will not achieve full stabilization if you are having an adverse reaction, which I suspect you are.  To be certain you are, you should do a daily drug and symptom journal.  If you feel significantly worse in the 4-6 hours after you take your dose each day, then you are having an adverse reaction.  I suspect you are having both withdrawal and adverse reaction, so you may partially stabilize if you stay on the 10 mg for a while.  I believe since you have been on 10 mg for 3 months, you are probably safe to do a 10% reduction, after you have adjusted to the liquid as I described above.  

 

Here is an example of a daily drug and symptom journal: 

 

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 

 

On 6/27/2024 at 8:12 PM, AliBrace said:

Could the hypnic jerks be associated with kindling? If so, would I just continue to taper even though I'm experiencing an adverse reaction? or would it be best to come off? I don't want it to become permanent. 

They could very well be.  Kindling just means that your nervous system is sensitized, and prone to having an adverse reaction.  However, we don't suggest abruptly stopping a psych med unless the adverse reaction is very serious, as in liver failure or severe allergy.  If it were me, I would switch to the liquid, and then once you are stable from that, reduce down to 9 mg.  This could take several weeks, so please be patient.  

Please do not private message me.  Only tag me for urgent questions about tapering and reinstating - thank you.  

 

***Please note this is not medical advice.  Discuss any decisions about your medical care with a doctor who understands psych meds and how to withdraw from them, if you can find one.

 

Lexapro   Started Apr 15 2010 - 10 mg;  started taper August 2017, recent taper info: Apr 2 '20  0.18 mg; Jul 16  0.17 mg, Aug 23  0.16 mg, Oct 7  0.15 mg, Nov 8 - 0.14, Jan 16 '21 - 0.13, Feb 7 - 0.12, Feb 22 - 0.11, Mar 26 - 0.10, May 21 - 0.09, June 15 - 0.08 Aug 16 - 0.07, Oct 6 - 0.06, Nov 21 0.05, Dec. 17 0.04, Jan 14 '22 0.03, Feb 19 0.02, Apr 18 0.01, May 15 0.005,  Jul 8, 0.00.  Psych Drug Free as of July 8, 2022!!  Woohoo!!!

other meds: Levothyroxine 75 mg

magnesium in small amounts at 4 AM, before bed

suppl AM: fish oil, flax oil, vit C, vit E, multivitamin, zinc

suppl 8 PM: magnesium 350 mg, extended release vitamin C, melatonin 2 mg

 

Paxil 2002 - 2010, switched to Lexapro 2010 

Trazodone 50 mg. 2002 - 2019, fast tapered in 2019 

Xanax 0.5 mg as needed 2002 - 2019, up to 3x weekly 

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Thank you for your response. 

I am trying to get my doctor on board with either filling a prescription for 9mg fluoxetine in pill form which I will bring to a compound pharmacy or having her fill one for the liquid. It's been a struggle though as she doesn't agree with this type of tapering method, it has been extremely frustrating trying to explain it to her. She is very rigid and clinical.

Regarding the link you sent about cross tapering over to liquid; does this mean I would have to get a scale and pill capsules anyways and measure out my pills to transfer over? Thanks. 

If I go the route of making my own liquid or having her prescribe it to me I will definitely try that. I don't believe I will get very far with her prescribing anything to me, she has told me several times she wants me off the medication all together due to my reaction. 

 

In terms of the dilution, I didn't realize how much went into it. I thought I could just break open my 10mg pill and drop the powder in 10ml of water. Thank you for that information! I will take that into consideration.

 

Fortunately, I don't feel worse after taking the medication. The only symptom I've really been experiencing is the jerking at night time. Sometimes I experience the jerking during the day which I hadn't previously but it isn't as aggressive as my night time jerks. The only reaction I seem to be experiencing is the jerking and insomnia. I have been journaling in a calendar book I purchased but it's not as specific as what you've stated. I will make sure to start including all of that information. 

 

Thank you so much again!

September 26th 2015 - October 16th 2015: Seroquel 25mg (bedtime) / Fluoxetine 20mg 

October 2015 - Stopped taking Seroquel 25mg , continued on Fluoxetine 20mg

November 2015 - March 2015: Fluoxetine 20mg 

March 2015 - Fluoxetine 40mg (increased dose - estimated time as I can't completely recall exact month of switch)  

April 2015 - September 2023: Fluoxetine 40mg (stayed on fluoxetine 40mg for approx 9 years) 

September 2023 - October 2023: Off and on Fluoxetine 40mg (doctor told me to take every other day to make it 30mg) 

November 2023 - Fluoxetine 40mg (started taking 40mg again but sporadically) would forget dosages

December 2023 - March 2024: Nothing (ct Fluoxetine 40mg) 

March 12th 2024 - Fluoxetine 20mg 

March 22nd 2024 - Present: Fluoxetine 10mg (decreased dose to 10mg March 22nd 2024) 

 

 

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Hi everyone,

I’ve posted here prior talking about my experience reinstating fluoxetine. I unfortunately experienced an adverse reaction like many of you when restarting. My doctor started me on too high of a dose (20mg) after being off it for several months, and not knowing better I followed her advise. The first few days were brutal. My anxiety was off the charts, I was crying daily, had heavy dp/dr and experienced hypnic jerks immediately upon starting up again. I talked with my doctor a week into the reinstation of the 20mg fluoxetine and asked for it to be decreased. She told me that I was very anxious and needed to increase my dose for 40mg (glad I didn’t do this). I talked her into decreasing my dose down to 10mg which seemed to alleviate the severity of some of my symptoms, but I still struggled for weeks as I tried to push through. I’ve now been on the 10mg for about 4 months. A lot of my initial side effects have since subsided (anxiety, numbness, crying spells, dp/dr, akathisia, agoraphobia, etc.) but the side effects that remain are insomnia and hypnic jerks upon falling asleep. Around the 9/10th week mark my insomnia seemed to improve and I was sleeping through most of the night with few jerks, but recently my sleep hasn’t been great. I keep waking up a couple times per night, only getting a couple of hours of sleep at a time (if that), with a total of maybe 4 hours of broken sleep. This is very frustrating as it takes me a while to fall asleep initially due to the jerking.

Accompanying the increased insomnia, my hypnic jerks have progressively gotten worse as now I’m experiencing adrenaline rushes. The jerks sometimes go on for hours and I’m unable to fall asleep due to this. I’m too scared to take anything for sleep as I made the mistake of doing that a couple of times and it seemed to make the jerking worse. I’m so sleep deprived and I’m at my wits end. This has truly been the hardest thing I’ve ever had to deal with in my life.

 

I’m beginning to think that maybe I should’ve stopped taking the medication as soon as the adverse reaction (hypnic jerks) and the others that accompanied it started. I’m worried I have made my condition permanent now and I will forever live with these jerks. I’m still on the 10mg because I’m terrified to decrease or move in dosage. Also, my doctor is unwilling to prescribe me a 9mg dose to slowly taper as she doesn’t believe in the hyperbolic tapering method. I’ve read through all the information on here regarding tapering and measuring out the powder myself, but I’m terrified I’m going to mess it up somehow and leave myself worse off. I’m finding this all very overwhelming. I’ve cried endlessly about it because I feel so stuck.

 

I’ve made it this far and feel clear mentally and I don’t want to disturb my progress or reset it by getting off, but I can’t live with these jerks anymore. I pushed through trying to stabilize for weeks hoping they would subside like my other symptoms, but they haven’t let up. Now they even affect me throughout the day which is very distressing.

I’ve been told to do slow taper starting at 9mg, but I’m wondering if it would maybe be best to just get off the fluoxetine entirely. I feel like it is poisoning my body, and my body is rejecting it. I’m just about ready to give up. I’m only 27 years old and I have never had a suic**** thought up until going through this experience and I’m really scared.

Is this permanent? If I get off cold turkey again are these going to continue for the rest of my life? I feel like I messed myself up forever because I chose to stay on them longer.

 

Please, I need some advise. I’m desperate and terrified. My doctor doesn’t know what to do for me, she’s diagnosed me as a hypochondriac and thinks I need to go on something else. I thought I would add I also suffer from severe ocd, that’s why I went on the medication in the first place.

September 26th 2015 - October 16th 2015: Seroquel 25mg (bedtime) / Fluoxetine 20mg 

October 2015 - Stopped taking Seroquel 25mg , continued on Fluoxetine 20mg

November 2015 - March 2015: Fluoxetine 20mg 

March 2015 - Fluoxetine 40mg (increased dose - estimated time as I can't completely recall exact month of switch)  

April 2015 - September 2023: Fluoxetine 40mg (stayed on fluoxetine 40mg for approx 9 years) 

September 2023 - October 2023: Off and on Fluoxetine 40mg (doctor told me to take every other day to make it 30mg) 

November 2023 - Fluoxetine 40mg (started taking 40mg again but sporadically) would forget dosages

December 2023 - March 2024: Nothing (ct Fluoxetine 40mg) 

March 12th 2024 - Fluoxetine 20mg 

March 22nd 2024 - Present: Fluoxetine 10mg (decreased dose to 10mg March 22nd 2024) 

 

 

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  • 2 weeks later...

Anyone experience hypnic jerks since reinstating? I’ve been reinstated back on 10mg of fluoxetine for about 4 months now. Most of my starting symptoms have slowly subsided but the jerking is still there and relentless. I’ve had them ever since restarting, but recently they’ve been really bad.…will this ever level out? I’m unsure of what to do at this point, I don’t know if I can hold any longer. Would getting off just be better? 
 

Please I really need some advice:(

September 26th 2015 - October 16th 2015: Seroquel 25mg (bedtime) / Fluoxetine 20mg 

October 2015 - Stopped taking Seroquel 25mg , continued on Fluoxetine 20mg

November 2015 - March 2015: Fluoxetine 20mg 

March 2015 - Fluoxetine 40mg (increased dose - estimated time as I can't completely recall exact month of switch)  

April 2015 - September 2023: Fluoxetine 40mg (stayed on fluoxetine 40mg for approx 9 years) 

September 2023 - October 2023: Off and on Fluoxetine 40mg (doctor told me to take every other day to make it 30mg) 

November 2023 - Fluoxetine 40mg (started taking 40mg again but sporadically) would forget dosages

December 2023 - March 2024: Nothing (ct Fluoxetine 40mg) 

March 12th 2024 - Fluoxetine 20mg 

March 22nd 2024 - Present: Fluoxetine 10mg (decreased dose to 10mg March 22nd 2024) 

 

 

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