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The Windows and Waves Pattern of Stabilization


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Hi @Sonia009 and @Onmyway for the quick replies, really helpful thanks.
 

It helps to be reminded that it gets harder the smaller the dose. After 3 years I often reach the point of thinking surely this will get easier soon and then boom another even more intense wave. They’re getting worse if anything. 

 

Sonia thanks for the offer of talking I may take you up on that!

History of depression and anxiety. Symptoms of PTSD. 1998-1999 Venlafaxine 2006-2007 Prozac.2013-15 Sertraline 50mg. 2015 cross-tapered to citalopram 20mg. 2015-2021 Citalopram 20mg (brief increase to 30mg for 2/3 months in 2019). 01/2021 Dropped from 20mg to 10mg, back up to 20mg til June. 25/6/21 stopped CT. Started 50mg 5htp after a week without citalopram in the hope this would balance out my serotonin levels. After 3 days increased to 100mg 5htp. 11/7/21 Stopped 5htp with the intention of reinstating citalopram at 1mg. 16/7/21 Reinstated cit at 1mg. 2/8/21 Increased dose to 2mg. 28/11/21 10% reduction to 1.8mg.

8/12/21 2mg 6/1/22 1.8mg 10/2/22 1.6mg 13/5/22 1.5mg 4/6/22 1.55mg 4/7/22 1.4mg 4/8/22 1.25mg 1/11/22 1.1mg 3/3/23 1mg 18/4/23 0.9mg 2/6/23 0.8mg 4/10/23 0.7mg 11/11/23 jumped off @0.7mg started on 5htp 200mg -400mg, L-Theanine, and L-tyrosine 200mg. 25/11/23 came off 5-htp, l-tyrosine and l-Theanine. 24/12/23 went on 7.5mg mirtazapine. 27/12/23 stopped mirtazapine & reinstated citalopram @.35mg. 1/1/24 increased to 0.5mg. July 14, 2024 0.49mg. July 16 0.47mg. July 21 0.5mg. PTSD diagnosis October 2023. 11/11/23 started EMDR therapy for PTSD. Multiple attempts to taper off citalopram. Vegan/vegetarian, otherwise healthy lifestyle. Other medications; combined HRT. Other supplements; magnesium glycinate, vegan omega3. Completely OFF caffeine (since July 21). Finding it difficult to completely give up alcohol but starting from 14th July 24 will be trying my utmost to abstain. Main symptoms; crushing depression, anhedonia/emotional anesthesia, irritability, rage, anxiety/fear, intrusive thoughts, cognitive fog, inability to focus, restlessness and some insomnia

 

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18 minutes ago, Kat66 said:

Hi @Sonia009 and @Onmyway for the quick replies, really helpful thanks.
 

It helps to be reminded that it gets harder the smaller the dose. After 3 years I often reach the point of thinking surely this will get easier soon and then boom another even more intense wave. They’re getting worse if anything. 

 

Sonia thanks for the offer of talking I may take you up on that!

@Kat66 Any time, no problem. I know how frustrating and debilitating this is. Take care.😊

 

2008 10 mg Citalopram, 2.5 mg bendroflumethiazide

2021 reduced Citalopram over three years,2023 5.2 mg Citalopram for approx. 1 year

Sept 2023 taken off Citalopram and bendroflumethiazide , put on Amitriptyline 10 mg and Ramipril 2.5 mg 

October 2023 taken off Amitriptyline and Ramipril put on Propranolol 10 mg

October 2023 put on Losartan 25 mg 

November 2023 taken off Losartan on Propranolol 10 mg 

December 2023 now on 2.5 mg bendroflumethiazide + Citalopram 0.5 mg.

February 2024, taken off bendroflumethiazide, on bisoprolol 1.25 mg

February 2024, taken off bisoprolol, on ramipril 1.25 mg + 0.5mg Citalopram, stopped ramipril. June 2024 0.45 mg Citalopram. July 204 0.4 mg. ( nothing else).

 

 

 

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Hey all, quick question. Is it pretty normal to have new symptoms show up in waves and old ones go away? 

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@SouthernMan yes... quite the rollercoaster isn't it. 

2016-twice weekly for a couple months-oxazepam 10 mg sleep/ 2020-22-once a week 3.75-7.5 mg for sleep/20 yr+ Paroxetine/ Dec2018-May 2022 20 mg/ May 2022 30mg/2022.07.28-2022.08.24 30mg to 0mg/ August 24-29 2022 10mg Prozac/2022.11.28-2022.12.04- 5mg Paroxetine/Dec 5&6/22 10mg Paroxetine/ Dec 8&9/22 10mg Prozac/ 2022.12.07 to 2023.07.01 5mg Paroxetine

TAPER 23.07.02-58mgpw/4.9mgai/ 23.07.21-4.8 mg/23.07.28-4.73 mg/23.08.04-4.65 mg/21.09.23-4.58 mg/27.10.23-4.56 mg/5.12.23-4.54 mg/2.1.24-4.52 mg/9.1.24-4.51 mg/17.1.24-4.49 mg/26.1.24-4.47 mg/6.2.24-4.46 mg/19.2.24-4.44mg /4.4.24-4.43mg/28.4.24-4.4mg/5.5.24-4.39 mg/19.5.24-4.36 mg/2.7.24-4.34 mg/9.7.24-4.32 mg

8am-probiotics/9am-paroxetine, 200mg mag bisglycinate/ 1000mg Vitamin D/5pm-75 mg DGL/200mg calcium citrate/0.25 mcg melatonin nightly

"... your strength will be in keeping calm..."-Isaiah 30:15

I am not a medical professional just your peer. The suggestions I give are based on personal experience and/or the well documented experience of others.

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5 minutes ago, SouthernMan said:

Hey all, quick question. Is it pretty normal to have new symptoms show up in waves and old ones go away? 


Yes, absolutely normal, I’ve had new symptoms appear two years after my last dose.

Oct 2018 - Jun 2020: 10 mg per day generic Escitalopram in pill form.

Jul 2020 - Aug 2020: Switched to 9 mg per day of Cipralex drops to aid tapering.

Sep 2020 - Oct 2020: Taper to 8 mg.

Nov 2020 - Dec 2020: Taper to 7 mg.

Jan 2021 - Feb 2021: Taper to 6 mg.

Mar 2021 - Apr 2021: Taper to 5 mg.

May 2021 - Jun 2021: Taper to 4 mg.

Jul 2021 - Sep 2021: Taper to 3 mg.

Sep 2021 - Jan 2022: Taper to 2 mg.

Jan 2022: Stopped taking altogether.

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Yeah in this wave the mental symptoms aren't as bad, but still there. It started with the ear ringing, head pressure and turned into a vertigo ordeal. Now its just dull headache, twitching all over, tinnitus, and i feel like im constantly on a boat and moving...... 

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Still struggling almost 17 months off. It’s so frustrating and scary. The anxiety and low mood is scary. 

17 years on 150 mg Effexor.

started taper to 75 mg October 29, 2022

went to 37.5mg December 20, 2022

0 on January 27, 2023

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This is my tracking of severity of symptoms, bare in mind that this doesn't tell about the type of symptom as they are constantly changing and new ones come and go all the time, for me mostly physical but also mood dysregulation which most often goes hand in hand with the physical symptoms.

Also, my perception of how I feel is biased in the chart, a "good day" is merely relief from symptom severity and to a normal person might be considered a bad day, and so far I haven't been totally free of symptoms, more like a good day is where I am functional and comfortable enough to do things without much complaint. 

I would reserve the "beaming days" on the chart for when I feel totally normal, which has not happened yet. I was sure my symptoms were going down hill and more unbearable than before, and the graph shows this is the case in the last month with objectively less good days than the past month or so.  Just for context, my awful days I am completely bed ridden, unable to do anything, barely can go to the toilet, won't eat or drink and feel like I should be in hospital with the excruciating pain and other neurological symptoms.

 

daylio_share.thumb.jpg.f676ade135050cbfcddeb3ed90dd7d9d.jpg
 

Late 2014-Early 2015 started Lovan SSRI for weakness, fatigue and severe SD. Severe side effects. CT

2015- multiple SSRIs and SNRI (type?) Anger and side effects. CT

2015- Agromelatine  6 months- No effects CT

2016- Present Moclobemide. Partial response without major side effects. 

2017- 2017- Added Sodium Valproate- No effects just hair loss. CT

2018- Antipsychotic. (type?) No effects. CT. 

2018- Latuda Antipsychotic. 6 months. No effects. CT. 

2019 Jan- Rexulti. Massive improvement no major side effects.  2mg dose.

September 2020- Sudden severe SD after a number of years of being mostly fine and jerky sleep/wake transitions + severe sleep paralysis, injuries to face during sleep, blunt emotions, brain fog, little motivation.

August 2021- Rexulti concluded as likely cause. Begin taper over 8 weeks. Delayed severe neurological (almost entirely autonomic) WD symptoms in late November 2021 after being symptom free. 

Reinstated and taper Rexulti @ 0.25mg Jan 2022, 0.125mg May, August 0.0625mg, November 26th 0.03125mg, Feb 27th 2023 0.0158mg, May 22nd 0.0mg. Finally!

Taper Moclobemide March 2022 from 300mg to 150mg, August 75mg (last reduction too harsh, moving to 10% per 3, 4 or 5 weeks) 12th Oct 22  67.5mg, 11th Nov 60.18mg, 11th Dec 53.65mg, 2nd Jan 2023 48.035mg, 23rd Jan 2023 42.8mg, 13th Feb 39.033mg, 20th March 34.85mg, April 19- May 17 rather rapid slide method from 31mg to 19mg (approx 10% weekly). Hold 19mg to May 31st, 17.5mg to 15th June, Split dosing 9mg x 2 twice daily 1 at 5pm and 1 at 7:30pm. Helped with the severity of the adverse reactions and can be mixed with next dosing to allow a slide period. July 11th,  9mg + 7.5mg. July 18th 2 x 7.5mg,  Aug 18th 7.5mg + 6mg, Aug 25th 6+6mg, Sep 23rd 5.25+5.25mg, Oct 27 CT. Drug free!

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Does anyone know if it’s normal to not have any windows? I had a very very severe adverse reaction to Lexapro 3 months ago and I keep waiting for “windows” but they never come. It makes me feel like my case is different and I won’t actually recover. My symptoms are severe dizziness and head/eye pressure, muscle twitches and muscle jerks when trying to sleep. I’m suffering so bad. 

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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12 hours ago, Celeste1990 said:

Does anyone know if it’s normal to not have any windows? I had a very very severe adverse reaction to Lexapro 3 months ago and I keep waiting for “windows” but they never come. It makes me feel like my case is different and I won’t actually recover. My symptoms are severe dizziness and head/eye pressure, muscle twitches and muscle jerks when trying to sleep. I’m suffering so bad. 

Unfortunately I don't think it is uncommon.  You have the hypnic jerks too?

Sertaline- tried 50 mg beginning of June 2023. Caused hyperreflexia.  So stopped after one dose. Tried several smaller doses that month.  Had burning and twitching so just stopped. 

Lexapro

June of 2023' 2.5 mg for two weeks 

July of 2023 5 mg for two weeks

July of 2023 7.5 mg for 2 weeks

August to mid September 10 mg

Mid September reduced to 7.5

October to October 15 reduced to 5

October 15 to October 30 reduced to 2.5 

October 30-off

 

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10 minutes ago, Farm24 said:

You have the hypnic jerks too?

I do and it’s so awful, I’ve been awake since 2am. I’m losing so much hope that I’ll ever get better. I can’t live like this but I have a 2 year old so I can’t die. But sometimes the pain is so bad I think about leaving my child without a mom which I know is so selfish but I just can’t take it. I spend my entire days sobbing. I don’t know what to do

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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12 hours ago, Celeste1990 said:

Does anyone know if it’s normal to not have any windows? I had a very very severe adverse reaction to Lexapro 3 months ago and I keep waiting for “windows” but they never come. It makes me feel like my case is different and I won’t actually recover. My symptoms are severe dizziness and head/eye pressure, muscle twitches and muscle jerks when trying to sleep. I’m suffering so bad. 

 

 

 

22.10.2020 sertraline (50 upped to 100mg for two months) and pregabalin (150mg for half year)

2021 mirtazapine (30mg for some months), amitryptyline (cascading dose but doctor took me off it before reaching five tablets), olanzapine (5mg), lithium (this one I reacted to terribly as well, maybe due to my Hashimoto disease)

2022 duloxetine, reboxetine, venlafaxine (all unsuccessful attemps stopped after one day with no side effects following days, only reboxetine pushed through with one box)

2023 mainly bupropion (150mg stopped after few weeks, 300mg stopped after few another weeks, 150mg stopped after few months) until IAR, buspirone (5mg) tried for 3 days 

autumn 2023 - 150mg bupropion daily,

12.12.2023 - bupropion stopped,

16.12.2023 - 100mg sertraline,

18.12.2023 - 150mg bupropion,

19, 20 & 21.12.2023 - 150mg bupropion & 5mg buspirone,

Nothing ever since 21.12.2023, but 25mcg levothyroxine since around summer 2023 until 10.07.2024 for Hashimoto disease (non-psychiatric drug)

 

First wave: 18.07.2023; immediate adverse reaction to sertraline and first CNS crash: 16.12.2023: late onset protracted withdrawal from bupropion: 13.04.2024; currently still in acute phase of PAWS as of July 2024

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3 hours ago, Celeste1990 said:

I do and it’s so awful, I’ve been awake since 2am. I’m losing so much hope that I’ll ever get better. I can’t live like this but I have a 2 year old so I can’t die. But sometimes the pain is so bad I think about leaving my child without a mom which I know is so selfish but I just can’t take it. I spend my entire days sobbing. I don’t know what to do

My hypnic jerks have gotten a lot better this last month.  

 

I took fish oil and that triggered an entire night of them. Then an iron supplement did the same.  Stay away from supplements for sure. 

Sertaline- tried 50 mg beginning of June 2023. Caused hyperreflexia.  So stopped after one dose. Tried several smaller doses that month.  Had burning and twitching so just stopped. 

Lexapro

June of 2023' 2.5 mg for two weeks 

July of 2023 5 mg for two weeks

July of 2023 7.5 mg for 2 weeks

August to mid September 10 mg

Mid September reduced to 7.5

October to October 15 reduced to 5

October 15 to October 30 reduced to 2.5 

October 30-off

 

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2 minutes ago, Farm24 said:

My hypnic jerks have gotten a lot better this last month.  

That is so great to hear, so happy for you! I hope you see more signs of healing and are able to catch up on your sleep. Also wanted to tag @AliBrace, she’s struggling with hypnic jerks too and I’m hoping seeing it get better for someone else helps give her hope too. 

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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@Celeste1990 thank you Celeste for tagging me in this! Gives me hope🤍 

I haven’t found a lot of people on here other then a couple that are also suffering from hypnic jerks reinstating, very very scary but keeps me going knowing I’m not the only one. So sorry @Farm24 that you are also experiencing these, they are quite literally terrible. 

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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On 7/7/2024 at 10:01 AM, Celeste1990 said:

Does anyone know if it’s normal to not have any windows? I had a very very severe adverse reaction to Lexapro 3 months ago and I keep waiting for “windows” but they never come. It makes me feel like my case is different and I won’t actually recover. My symptoms are severe dizziness and head/eye pressure, muscle twitches and muscle jerks when trying to sleep. I’m suffering so bad. 

 

From what I have read and been told on here, the absence of windows/waves and a more progressive linear recovery is far more common with adverse drug reactions as oppose WD syndrome which is more associated with windows and waves.

But it is also important to be aware that the first several months can be so severe that there is no windows or waves at all, but rather progressive worsening before you plateau out and start to slowly trend up and eventually the symptoms start to breakup into tiny glimpses of windows, eventually they become evident as familiar windows and waves.

I had this, my symptoms rapidly got worse for the first 5 months (8 months if you include when I first started to reduce my med) at least I would say before I experienced some breaking up of symptoms and this breaking up into tiny windows was completely abrupt and unexpected. At the time I knew little on what was happening to me and only just figured out the drugs were to blame.

I also just went though a large wave that felt more like the window/waveless nature you describe and the worst one in almost 3 years, I just got a window starting today after probably 3-4 weeks of pure hell 24/7 after having 1-2 day waves at most for the last year.  So you can have have these windowless periods start long after having normal windows and waves long after touching any med.

 

Late 2014-Early 2015 started Lovan SSRI for weakness, fatigue and severe SD. Severe side effects. CT

2015- multiple SSRIs and SNRI (type?) Anger and side effects. CT

2015- Agromelatine  6 months- No effects CT

2016- Present Moclobemide. Partial response without major side effects. 

2017- 2017- Added Sodium Valproate- No effects just hair loss. CT

2018- Antipsychotic. (type?) No effects. CT. 

2018- Latuda Antipsychotic. 6 months. No effects. CT. 

2019 Jan- Rexulti. Massive improvement no major side effects.  2mg dose.

September 2020- Sudden severe SD after a number of years of being mostly fine and jerky sleep/wake transitions + severe sleep paralysis, injuries to face during sleep, blunt emotions, brain fog, little motivation.

August 2021- Rexulti concluded as likely cause. Begin taper over 8 weeks. Delayed severe neurological (almost entirely autonomic) WD symptoms in late November 2021 after being symptom free. 

Reinstated and taper Rexulti @ 0.25mg Jan 2022, 0.125mg May, August 0.0625mg, November 26th 0.03125mg, Feb 27th 2023 0.0158mg, May 22nd 0.0mg. Finally!

Taper Moclobemide March 2022 from 300mg to 150mg, August 75mg (last reduction too harsh, moving to 10% per 3, 4 or 5 weeks) 12th Oct 22  67.5mg, 11th Nov 60.18mg, 11th Dec 53.65mg, 2nd Jan 2023 48.035mg, 23rd Jan 2023 42.8mg, 13th Feb 39.033mg, 20th March 34.85mg, April 19- May 17 rather rapid slide method from 31mg to 19mg (approx 10% weekly). Hold 19mg to May 31st, 17.5mg to 15th June, Split dosing 9mg x 2 twice daily 1 at 5pm and 1 at 7:30pm. Helped with the severity of the adverse reactions and can be mixed with next dosing to allow a slide period. July 11th,  9mg + 7.5mg. July 18th 2 x 7.5mg,  Aug 18th 7.5mg + 6mg, Aug 25th 6+6mg, Sep 23rd 5.25+5.25mg, Oct 27 CT. Drug free!

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53 minutes ago, AliBrace said:

@Celeste1990 thank you Celeste for tagging me in this! Gives me hope🤍 

I haven’t found a lot of people on here other then a couple that are also suffering from hypnic jerks reinstating, very very scary but keeps me going knowing I’m not the only one. So sorry @Farm24 that you are also experiencing these, they are quite literally terrible. 


I think I had something similar, jolts of fear with a shock like sensation and loss of autonomic control of my lungs (central sleep apnea, not obstructive) so I would also stop breathing when I got these jolts.  This was upon reinstatement as well iirc.  This lasted about 3 months before I could get any form of normal sleep.

Late 2014-Early 2015 started Lovan SSRI for weakness, fatigue and severe SD. Severe side effects. CT

2015- multiple SSRIs and SNRI (type?) Anger and side effects. CT

2015- Agromelatine  6 months- No effects CT

2016- Present Moclobemide. Partial response without major side effects. 

2017- 2017- Added Sodium Valproate- No effects just hair loss. CT

2018- Antipsychotic. (type?) No effects. CT. 

2018- Latuda Antipsychotic. 6 months. No effects. CT. 

2019 Jan- Rexulti. Massive improvement no major side effects.  2mg dose.

September 2020- Sudden severe SD after a number of years of being mostly fine and jerky sleep/wake transitions + severe sleep paralysis, injuries to face during sleep, blunt emotions, brain fog, little motivation.

August 2021- Rexulti concluded as likely cause. Begin taper over 8 weeks. Delayed severe neurological (almost entirely autonomic) WD symptoms in late November 2021 after being symptom free. 

Reinstated and taper Rexulti @ 0.25mg Jan 2022, 0.125mg May, August 0.0625mg, November 26th 0.03125mg, Feb 27th 2023 0.0158mg, May 22nd 0.0mg. Finally!

Taper Moclobemide March 2022 from 300mg to 150mg, August 75mg (last reduction too harsh, moving to 10% per 3, 4 or 5 weeks) 12th Oct 22  67.5mg, 11th Nov 60.18mg, 11th Dec 53.65mg, 2nd Jan 2023 48.035mg, 23rd Jan 2023 42.8mg, 13th Feb 39.033mg, 20th March 34.85mg, April 19- May 17 rather rapid slide method from 31mg to 19mg (approx 10% weekly). Hold 19mg to May 31st, 17.5mg to 15th June, Split dosing 9mg x 2 twice daily 1 at 5pm and 1 at 7:30pm. Helped with the severity of the adverse reactions and can be mixed with next dosing to allow a slide period. July 11th,  9mg + 7.5mg. July 18th 2 x 7.5mg,  Aug 18th 7.5mg + 6mg, Aug 25th 6+6mg, Sep 23rd 5.25+5.25mg, Oct 27 CT. Drug free!

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12 minutes ago, 6Eggs said:

From what I have read and been told on here, the absence of windows/waves and a more progressive linear recovery is far more common with adverse drug reactions as oppose WD syndrome which is more associated with windows and waves

Oh that is so good to hear, thank you so much for sharing that. Lately I’ve been feeling like all the stories healing doesn’t apply to me because I don’t have any windows so you just reignited my hope. 

 

9 minutes ago, 6Eggs said:

I think I had something similar, jolts of fear with a shock like sensation and loss of autonomic control of my lungs (central sleep apnea, not obstructive) so I would also stop breathing when I got these jolts. 

Yes I get that too! It’s often my muscles that will twitch or jerk but sometimes I will stop breathing in my sleep and wake up feeling like I’m suffocating. Which of course sends my adrenaline through the roof and makes it difficult to fall back asleep. I’m glad that went away for you 🙏 

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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@6Eggs oh wow, I haven’t experienced that. Mainly just jerks and surges of adrenaline that keep me from sleeping. I’m glad those eased up for you. Did you take anything to help you sleep or just pushed through on your own? Also, were you still on the medication during this time or did you get off?

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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On 7/8/2024 at 12:07 PM, AliBrace said:

@6Eggs oh wow, I haven’t experienced that. Mainly just jerks and surges of adrenaline that keep me from sleeping. I’m glad those eased up for you. Did you take anything to help you sleep or just pushed through on your own? Also, were you still on the medication during this time or did you get off?


Just pushed through, I tried melatonin but reacted badly to it, that was the end of accepting more meds to deal with the WD symptoms. I had tried earlier on gabapentin for the excruciating nerve like pain, but a single pill of the lowest dose of that sent me to the hospital from panic like symptoms and repository difficult and as a paradoxical reaction it amplified the pain even more.

I still have this pain now almost 3 years on, but to be fair it came back with a vengeance only in the last few months after it being almost a non issue for the last few years. Funny how sometimes waves can bring in the same symptoms that went away long ago.

Last year I was quite bad at the end of my taper as a paradoxical reactions to the dose when taken got worse as I got lower with taper, I tried plain magnesium supplement as recommended on here, it made me have difficultly breathing and tingles and shivers surging down my back and extremely drowsy but it did get me through the few days dotted around my absolute worst at that time. It worked similar to vallium in the calming aspect but the side effects were freaky, that was half dose too.

I don't recommend anything as tempting as it is in my experience.

Late 2014-Early 2015 started Lovan SSRI for weakness, fatigue and severe SD. Severe side effects. CT

2015- multiple SSRIs and SNRI (type?) Anger and side effects. CT

2015- Agromelatine  6 months- No effects CT

2016- Present Moclobemide. Partial response without major side effects. 

2017- 2017- Added Sodium Valproate- No effects just hair loss. CT

2018- Antipsychotic. (type?) No effects. CT. 

2018- Latuda Antipsychotic. 6 months. No effects. CT. 

2019 Jan- Rexulti. Massive improvement no major side effects.  2mg dose.

September 2020- Sudden severe SD after a number of years of being mostly fine and jerky sleep/wake transitions + severe sleep paralysis, injuries to face during sleep, blunt emotions, brain fog, little motivation.

August 2021- Rexulti concluded as likely cause. Begin taper over 8 weeks. Delayed severe neurological (almost entirely autonomic) WD symptoms in late November 2021 after being symptom free. 

Reinstated and taper Rexulti @ 0.25mg Jan 2022, 0.125mg May, August 0.0625mg, November 26th 0.03125mg, Feb 27th 2023 0.0158mg, May 22nd 0.0mg. Finally!

Taper Moclobemide March 2022 from 300mg to 150mg, August 75mg (last reduction too harsh, moving to 10% per 3, 4 or 5 weeks) 12th Oct 22  67.5mg, 11th Nov 60.18mg, 11th Dec 53.65mg, 2nd Jan 2023 48.035mg, 23rd Jan 2023 42.8mg, 13th Feb 39.033mg, 20th March 34.85mg, April 19- May 17 rather rapid slide method from 31mg to 19mg (approx 10% weekly). Hold 19mg to May 31st, 17.5mg to 15th June, Split dosing 9mg x 2 twice daily 1 at 5pm and 1 at 7:30pm. Helped with the severity of the adverse reactions and can be mixed with next dosing to allow a slide period. July 11th,  9mg + 7.5mg. July 18th 2 x 7.5mg,  Aug 18th 7.5mg + 6mg, Aug 25th 6+6mg, Sep 23rd 5.25+5.25mg, Oct 27 CT. Drug free!

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I think I'm going through the 12 month wave. July of last year was when I went to zero. 1 month later is when I went into a full withdraw, I reinstated for a month and went back off. So I'm assuming this is the 12 month wave? Man it's a doosy, no sleep, horrible cortisol mornings, anxiety, ruminating thoughts loss of appetite. Anyone else get this? Hoping this won't last too much longer, already been 2 weeks

2012 july started prozac (i cant remember dosage)

2013 october tappered off prozac so i could switch to valafexine.

Nov 2013 started valafexine 37.5 day

Dec 2013 went up to 150 mg a day of valafexine (2-75s)

2020-started trazadone 1 50 mg

March 2022 - started tapper valafexine. I would take a 75 mg and cut 1/4 off of the second 75 mg tablet.

July 2023- completely off valafexine 

Oct 5th 2023 started 2 25s a day of valafexine Oct 9th went up to 100mg of valafexine a day

Oct 14 went down to 37.5 of valafexine.

Oct 21 started mirtazapine 15 mg and 2- 5 mg buspar

Oct 23 stopped valafexine

Oct 28 stopped buspar

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Hello, It’s been a long time since I’ve been on here. I’ve been reading on the website or a few hours, finding some valuable information, but needing more targeted support. Also at this point, I’m not sure what my signature line looks like.
Anyhow, here’s my current story. After 8 years of taking it, I’ve been off of Remeron/Mirtazapine for a month now. Tapering was slow over 3 years, because of bad experience about 10.5-11 years ago on other Rx, and before 0mg felt fine in terms of sleep. Last dose 1.875mg (1/4 of a 7.5mg tab).
Over the course of a month, my sleep has been horrible but my mood okay thankfully. I can sense some nervous system dysregulaton—heart palpitations at night probably from being so exhausted from not sleeping well consistently, dizzy/balance issues, blurry vision, brain fog, sensitive to people talking to fast or lots of commotion, and tinnitus which I can have anyhow—wonder how much is from 5G/EMF.

Over this last month, I’ve probably had a little over a handful or two of good nights of sleep—which is obviously not good. I’m taking Mg glycinate 450-600mg, Ca Lactate 520mg, Omega 3 fish oil, 0.6-0.9mg melatonin, and tried Valerian or Kava— these last 2 with varying results, wondering why they are not more effective.

Valerian started out promising and seemed to stop working. Too much? Pooped out? Kava was a second choice after Valerian, didn’t seem to work and has done nothing—almost seems to be worse sleep on it. Things are progressively getting worse sleep-wise.
Note: I try to not take high doses of anything because my body is usually sensitive to meds/herbs. 
I'm contemplating going back on Remeron at 1/8 of 7.5mg because I need to sleep in order to function for myself, family, work. Where can I get support for this particular drug?  I cannot seem to find it.

Thank you, be well, and Namaste!

Current Rx: since 2000 Levothyroxine 25mcg; 6/2016-6/2024 recently off of Remeron, was at 22.5mg for approximately 5+years, gradual taper of cutting 15mg then 7.5mg pills into quarters over approximately 3 years, last dose 1.875mg on 6/14/24

>7/14/24 Reinstated at 0.9375mg< due to insomnia that was getting worse as the month progressed without any Rx. 

**Need help with withdrawal/tapering issues**

 

Past Rx synopsis: birth control (2000-2001) bad reactions, Paxil not great either (2001-2002/3), and other SSRIs, and SNRIs, benzos--not well tolerated at all, not on any of them for a long length of time, too many to mention of a merry go round of meds especially in 2013 (2012-2016)

Genetic 23andme testing: slow metabolizer/detoxifier of most drugs, caffeine not well tolerated (anxiety symptoms), some issues with methylation (no methylated B vitamins), estrogen dominance, and sulfur containing items. Wanting to learn more about how to work with mutated genes to improve mild fatigue and mild/moderate irritability

 

Love yoga, meditation, Ayurveda, somatic therapies, forest therapy, lovingkindness, keeping physically active, helping others, spending time in nature and with family and friends.

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On 7/10/2024 at 5:40 PM, missy27 said:

I think I'm going through the 12 month wave. July of last year was when I went to zero. 1 month later is when I went into a full withdraw, I reinstated for a month and went back off. So I'm assuming this is the 12 month wave? Man it's a doosy, no sleep, horrible cortisol mornings, anxiety, ruminating thoughts loss of appetite. Anyone else get this? Hoping this won't last too much longer, already been 2 weeks

I am experiencing something similar. I went to 0 last June, and the end of this June began a major setback for me. I had been having windows, although they were short some of them made me feel basically back to normal. now it's going on 3 weeks of complete fatigue and soreness all over with deep dark holes of anxiety and depression returning. Hopefully it lets up soon for the both of us!

Zoloft: About 4 months

            25mg October - November 2017. 50mg November 2017

            25mg December 2017 - January 2018. Quit cold turkey.

Zoloft: 2 weeks in November 2019. Quit cold turkey

Lexapro: About 3 years

          10mg July 2020 - January 2021.  7.5mg January 2021 - October 2021. 5mg October 2021 - November 2022

            Bumpy fast taper then reinstatement then taper again. Too fast and too unstable. November 2022 - June 2023. Quit.

Buspar: A couple weeks in January 2023

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27 minutes ago, Swordfish said:

I am experiencing something similar. I went to 0 last June, and the end of this June began a major setback for me. I had been having windows, although they were short some of them made me feel basically back to normal. now it's going on 3 weeks of complete fatigue and soreness all over with deep dark holes of anxiety and depression returning. Hopefully it lets up soon for the both of us!

Thank you so much for your response. Yes I am experiencing the exact same thing. Ugh I sure hope it ends  soon too. My windows come after 5pm, until then I'm so tired, sore and depressed. 

2012 july started prozac (i cant remember dosage)

2013 october tappered off prozac so i could switch to valafexine.

Nov 2013 started valafexine 37.5 day

Dec 2013 went up to 150 mg a day of valafexine (2-75s)

2020-started trazadone 1 50 mg

March 2022 - started tapper valafexine. I would take a 75 mg and cut 1/4 off of the second 75 mg tablet.

July 2023- completely off valafexine 

Oct 5th 2023 started 2 25s a day of valafexine Oct 9th went up to 100mg of valafexine a day

Oct 14 went down to 37.5 of valafexine.

Oct 21 started mirtazapine 15 mg and 2- 5 mg buspar

Oct 23 stopped valafexine

Oct 28 stopped buspar

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Did anyone get good windows early on after a short acute phase, and then go back to acute for longer? 

May 2019 started lexapro 2.5 mg; 2020 went to every other day; 2021 beginning of Mar, tried to stop but had insomnia; Mar 30, 2021 reinstated 1.25 ev other day, WD symptoms, not enough

April 19, 2021 started liquid, .85 mg/day; May 1, 2021 .8 mg, May 6 .75 mg; June 6 .7 mg, June 20 .65mg, June 30  .6mg, Jul 24 .55 mg, Oct 17 .5 mg, Dec 5- .45 mg; Jan 26, 2022- 4mg,  April 18- .375 ; April 24- .35; April 29- .3; Jun 12- .25 mg; Jun 28- .2 lex; Sept- .15 mg, Nov .1- long hold, never got better

June ‘23- PPPD started 🙁, Jun- .09, Jul- .08, Oct- .07, Dec- .06, Jan ‘24- .05! 
Played around with my dose since Feb & became very unstable w/ extreme acute WD symptoms. Holding @ .06 since May 13.

Taking Magnesium, melatonin, & electrolytes 

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Yep, sort of.  For me, the acute stage only lasted (with waves/windows I may add) for maybe 6 weeks?  Then I was virtually symptom free for a few months, although this was probably the condition called drug/withdrawal spellbinding, then the WD symptoms hit really hard and all new symptoms at the 2 month point after I was med free and not in any symptom period that I was aware of, again maybe spellbinding effect.

I have had this 3 times, First time trying taper and CT the first med, then again but more mild and drawn out 18 months later after reinstatement and proper taper.  And now a 3rd time with very drawn out delay and long and intense symptoms, 4 months after a successful 20 month taper that was done pretty well from get go.  These delayed worsening is still my current state and started in early March and still going now, very awful!

This acute, relief then delayed WD is very common from all the posts on this thread. For a long time I thought it was the only one, but after being active on this thread for a while now I have learned all the stuff like this is very common and it does get better, this is usually the hardest part of the recovery because it can often be as bad, sometimes worse than the initial WD and is almost always sudden and delayed long after successful tapering off all drugs and is very long winded!

Late 2014-Early 2015 started Lovan SSRI for weakness, fatigue and severe SD. Severe side effects. CT

2015- multiple SSRIs and SNRI (type?) Anger and side effects. CT

2015- Agromelatine  6 months- No effects CT

2016- Present Moclobemide. Partial response without major side effects. 

2017- 2017- Added Sodium Valproate- No effects just hair loss. CT

2018- Antipsychotic. (type?) No effects. CT. 

2018- Latuda Antipsychotic. 6 months. No effects. CT. 

2019 Jan- Rexulti. Massive improvement no major side effects.  2mg dose.

September 2020- Sudden severe SD after a number of years of being mostly fine and jerky sleep/wake transitions + severe sleep paralysis, injuries to face during sleep, blunt emotions, brain fog, little motivation.

August 2021- Rexulti concluded as likely cause. Begin taper over 8 weeks. Delayed severe neurological (almost entirely autonomic) WD symptoms in late November 2021 after being symptom free. 

Reinstated and taper Rexulti @ 0.25mg Jan 2022, 0.125mg May, August 0.0625mg, November 26th 0.03125mg, Feb 27th 2023 0.0158mg, May 22nd 0.0mg. Finally!

Taper Moclobemide March 2022 from 300mg to 150mg, August 75mg (last reduction too harsh, moving to 10% per 3, 4 or 5 weeks) 12th Oct 22  67.5mg, 11th Nov 60.18mg, 11th Dec 53.65mg, 2nd Jan 2023 48.035mg, 23rd Jan 2023 42.8mg, 13th Feb 39.033mg, 20th March 34.85mg, April 19- May 17 rather rapid slide method from 31mg to 19mg (approx 10% weekly). Hold 19mg to May 31st, 17.5mg to 15th June, Split dosing 9mg x 2 twice daily 1 at 5pm and 1 at 7:30pm. Helped with the severity of the adverse reactions and can be mixed with next dosing to allow a slide period. July 11th,  9mg + 7.5mg. July 18th 2 x 7.5mg,  Aug 18th 7.5mg + 6mg, Aug 25th 6+6mg, Sep 23rd 5.25+5.25mg, Oct 27 CT. Drug free!

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