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stellablue: Paxil taper/symptoms


stellablue

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Dear All,

 

Could use some help. Started my 4th attempt to withdrawal from Paxil Dec 2019. Basing my taper off Horowitz 2019 and Ruhe 2019 Lancet Psychiatry papers...so I've been doing decreasing by 10% receptor occupancy every 4 weeks (or longer depending on the symptoms). Some of the symptoms have been pretty awful but usually after a month or so on that dose, the symptoms seem to fade into the background and my body/brain normalizes. This has substantially better than my first 3 attempts..so I'm still hanging in there. The psychiatrist I was seeing could only offer my addictive meds to prescribe once I hit withdrawal symptoms .. so I've been navigating these waters with instinct, counseling, yoga, meditation, and acupuncture. I have not found another Dr or RN or other to help guide..still looking in the DC area.

 

I'm reaching out because I'm starting to feel scared. Roughly 2 months ago I had a 4-5 hour long panic attack triggered by CBD/THC (will never try that again) and potentially a dose reduction (0.05 mg to 0.025 mg liquid Paxil) (or could have been triggered by vacation .. who knows). Prior to that I had been okay (stable window). I don't know if that tripped some wires in my head or what, but a few days later I started to have insomnia. And this insomnia has been shape shifting over the last 2 months. Started out as 'light sleeper', waking up in the middle of the night a bunch. Then it was - woke up and couldn't get back to sleep. Now I've entered the can't fall asleep, mixed with waking up every few hours or less and some times I don't sleep at all...just depends on the night and if there's any smell of stress in my life. I'm pretty sensitive to supplements..my insomnia seems indifferent to them (and at this point I think it's psychological, i.e., if I don't take my vitamins or do a bath or some other ritual - I may not be able to fall asleep). Currently on a multivitamin, CBD 10 mg + probiotic, Lactium 167 mg, and Magnesium 120 mg. I can't take Omega fatty acids in any form (blood pressure drops dramatically, swelling in my feet) and I've stopped taking B6 and B12 because I'm concerned that could be messing with my sleep too (I was taking those in the daytime). My blackout curtains, eye mask, daily yoga, meditation, breath work and journaling seem to only go so far with sleep - I'm so thankful I have these tools but man I'm starting to get concerned about how much sleep I can go without and still be sane (and functional). My insomnia scares me because for the most part, I don't get tired or sleepy (no sleep pressure). If it were up to my body some - it feels like it would just keep going day after day without sleep if I didn't keep trying. The lack of sleep is affecting my emotional state, my relationships, and pretty much everything (I'm sure I don't have to explain to you all). I have some other symptoms besides insomnia too but they are rather small in comparison when it comes to impact on my quality of life..so I'll spare the details.

   

I have read as much as possible on this website and the beyond meds website about sleep/insomnia causes and things that may help. But I'm just not sure what to do anymore...this is what has brought me to finally post here, to seek the wisdom of the room. I've been holding at this dose since the chronic insomnia started, not sure whether I should try going up to previous dose, keep holding, try more supplements.  I'm apprehensive at best about seeking advice of a psychiatrist who is unexperienced at this. Again, if anyone knows anyone on the east coast.. I'd appreciate it.  I went through a bunch of the names listed here and the Mad in America provider directory. Unfortunately, some I found had frightening reviews (e.g., Doc told a patient God gave them PTSD for a reason), were outside of scope, or were outside of budget (~10-20K out of pocket a year). 

 

Any insight, encouragement, or suggestions welcomed. 

 

With gratitude,

     

  

Edited by ChessieCat
added spacing

Early days foggy. Started on prozac 1997, then switched to zoloft, then paxil.

On Paxil for 20+years.

4th time trying to withdrawal from Paxil (2011 cold turkey, 2015 10% dose reduction every 2-4 weeks, 2017-2018 way slower..7 months). The 2018 taper, I got to 0 mg but 3 weeks later suffered GI, panic attacks, suicide ideation/psychosis..reinstated to 10mg Paxil.   

2019 Dec paxil 10 mg (starting dose) stepping down by 10% receptor occupancy (RO) ~every month with liquid Paxil depending on symptoms: 4-Dec 5 mg (50% RO), 1-Jan 2020 3.4 mg (40% RO), 29-Jan 2.2 mg (30% RO), 29-Feb 1.75 mg, 14-Mar 1.3 mg (20% RO), 28-Mar 0.94 mg, 18-Apr 0.74 mg, 25-Apr 0.56 mg (10%)  

Below 0.5 mg.. decided to make larger step downs: 16-May 0.32 mg (5% RO), 27-Jun 0.2 mg, 8-Aug 0.1 mg, 13-Sept 0.05 mg (0.5% RO), 11-Oct 0.025 mg (0.25% receptor occupancy), 17-Aug 2021 0.05 mg (0.5% RO) and holding

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  • ChessieCat changed the title to stellablue: Paxil taper/symptoms
  • Moderator Emeritus

Hi stellablue and welcome,

 

It's hard to know for sure, yet you may have been tapering a little fast, and that has caught up with you, or still recovering from the CBD/THC. 

It looks like your last taper from from .05 to .025 mg of Paxil was one of 50%.

What we recommend, the harm reduction approach(which also utilizes some of the ideas from Horowitz and Ruhe), is a 10% taper from your previous dosage, rather than a straight linear dosage reduction.

 

And then, at the lower dosages, many do find it best to even go slower, or do just a microtaper(less than 10%, off the previous dose)

 

Sorry for the wait for approval of your first post.  And I am going to get you started today, and give you some of the basic links to information now.

 

Thank you for getting your signature done!

 

The 10% taper recommendation is a harm reduction approach to going off psychiatric drugs.
And again, the 10% taper decrease is based on each previous dose.  And then good long HOLDS are encouraged if symptoms arise, or become very difficult.  That is often a sign to slow down, and allow the nervous system to adjust, or regain balance.
 
 
 
 
You've mentioned the panic setting in, and insomnia as well that has crept in.  Are you experiencing any further WD(withdrawal) symptoms?
It sounds like you have already developed some great coping skills, and I'm sure we might find you some more to look at.  We have a whole Symptoms and Self Care forum, which you can find on the Main Page, or Home Page, it's the 4th one down.  Start with some of the top pinned topics there.  And then we can help link you up to some topics, as well.
 
 
 

When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made.  The CNS likes stability. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur. And sleep is really important during withdrawal.

 
On 12/13/2020 at 7:10 PM, stellablue said:

Currently on a multivitamin, CBD 10 mg + probiotic, Lactium 167 mg, and Magnesium 120 mg. I can't take Omega fatty acids in any form (blood pressure drops dramatically, swelling in my feet) and I've stopped taking B6 and B12 because I'm concerned that could be messing with my sleep too (I was taking those in the daytime).

 
We've had mixed results from members trials of CBD and THC, and do have a topic on it: Cannabis, marijuana, hashish, THC, and CBD(cannabidiol) or Hemp oil
It's a bit of a mix of experiences and substances, but there are some great posts in there.  Look for the ones by Altostrata and JanCarol too- they put a nice report from Consumers Reports in there. 
Some do find B6 to be stimulating, or any of the B vitamins.  I've done well with sublingual B12 for years now, and do take it at bedtime.  I've never gotten a measurement or level done......yet it works well for me.  I do usually keep some handy as well......for just in case, but have not needed any in the daytimes for a very long time now.
 
And, we don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system.   Best to stick with single ingredient supplements too.

 

Omega-3 fatty acids (fish oil) 

 

And then when starting or adding anything new, it is best to just make one change at a time, and start low in dosage, while observing.  That way one can know exactly what might be causing any new symptoms or worsened symptoms.

 

The rule of 3KI's, simple, slow,stable

 

Are you on any other medications right now?

 

And that's not real unusual that you haven't been able to find a doctor or practitioner who has good reviews, and a good grasp of WDsyndrome.  There is, however, a lot happening, more in the UK than the US, or so it seems to me, as far as discussions/focus groups, and new guidelines for taking people off AD's, as well as more education around WD.  I'm glad you've found the MIA site too.  Altostrata, this sites founder has done a huge amount of work in this area too.

 

And okay, longest welcome post ever?? B)  Welcome aboard.  You don't have to read everything linked right now, but will have some links to refer back to.

 

This is your introduction/journal page where you have now introduced yourself to the community, you can ask questions here regarding your tapering, give updates, and just keep a record of your journey.  And again, apologies for the wait......busy times on site here.

 

Love, peace, healing, and growth,

moderator manymoretodays(mmt)

 

 

 

 

 

Edited by manymoretodays
more links, googly eyes

Late 2023- gone to emeritus status, inactive, don't @ me, I can check who I've posted on, and I'm not really here like I used to be......thanks.

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016.  And.....I quit smoking 11/2021. Lapsed.  Redo of quit smoking 9/28/2022.  Can you say Hallelujah?(took me long enough)💜

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider.  My success story:  Blue skies ahead, clear sailing

 

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Thanks manymoretoday.. I revised my signature to add a bit more info about my journey.

I was doing lowering my dose by increments of 10% receptor occupancy from 5 mg to ~0.5 mg. Once I got to 0.5 mg, I started to do larger dose reductions because I was already below 1.0mg. I just didn't know when to finally make the leap to zero. So the doses keep getting closer and closer to zero, but I don't know how long to continue tapering versus stopping completely. I don't know if I should wait for no symptoms (stabilization) before going to zero or just keep infinitely creeping towards zero if the symptoms are 'tolerable'. I also don't know what the threshold is for tolerable versus not okay/need to go back up to my last dose (sleep is super important but it seems almost all of us here have struggled with it). I guess ideally I would hold here until all symptoms subsided and then repeat that until I reach zero (or 0.0001 mg?). 

 

Withdrawal symptoms I've had this taper include:

Insomnia; hypersensitivity to stress, light and noise; irritability; anxiety; joint aches and pains; runny nose; hot flashes (especially related to anxiety, bad mood); hot, swelling and throbbing  feet.   

The only other medication I'm on right now is for my thyroid: levothyroxine. Other that, as I mentioned above (Magnesium, Daily vitamin, CBD, probiotic, lactium). 

Thanks so much for the welcome, thoughts and links!

Early days foggy. Started on prozac 1997, then switched to zoloft, then paxil.

On Paxil for 20+years.

4th time trying to withdrawal from Paxil (2011 cold turkey, 2015 10% dose reduction every 2-4 weeks, 2017-2018 way slower..7 months). The 2018 taper, I got to 0 mg but 3 weeks later suffered GI, panic attacks, suicide ideation/psychosis..reinstated to 10mg Paxil.   

2019 Dec paxil 10 mg (starting dose) stepping down by 10% receptor occupancy (RO) ~every month with liquid Paxil depending on symptoms: 4-Dec 5 mg (50% RO), 1-Jan 2020 3.4 mg (40% RO), 29-Jan 2.2 mg (30% RO), 29-Feb 1.75 mg, 14-Mar 1.3 mg (20% RO), 28-Mar 0.94 mg, 18-Apr 0.74 mg, 25-Apr 0.56 mg (10%)  

Below 0.5 mg.. decided to make larger step downs: 16-May 0.32 mg (5% RO), 27-Jun 0.2 mg, 8-Aug 0.1 mg, 13-Sept 0.05 mg (0.5% RO), 11-Oct 0.025 mg (0.25% receptor occupancy), 17-Aug 2021 0.05 mg (0.5% RO) and holding

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  • Moderator Emeritus

Hi stellablue,

 

And thank you so much, for attending to questions.

And you sound really well versed in doing a more harm reduction approach to WD.

 

Huge congratulations on getting down now to .025 mg now.

 

And yes, sometimes the lower the better, with the getting to the final jumping off dose.

The following link may help:

Ollie, Ollie Oxen Free, Managing the Endgame taper

and it looks like brassmonkey is considering this ^, still a work in progress.  I really think you'll get a lot out of it though, as brassmonkey also did a taper of Paxil.

 

And absolutely, at least in my opinion, no real reason to rush to the finish line.

And I may just link you up to brassmonkey's SuccessStory and another who completed a Paxil taper........for inspiration!  B)

areillab 20th Anniversary of Freedom

another Paxil survivor for you ^, who also kept PaxilProgress going for many years too.

Tao of the Brassmonkey

 

And keep us updated too, ask any or all questions, right here is often the best for that, at first........and best for your Holidays too.

 

L, P, H, and G,

mmt

Late 2023- gone to emeritus status, inactive, don't @ me, I can check who I've posted on, and I'm not really here like I used to be......thanks.

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016.  And.....I quit smoking 11/2021. Lapsed.  Redo of quit smoking 9/28/2022.  Can you say Hallelujah?(took me long enough)💜

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider.  My success story:  Blue skies ahead, clear sailing

 

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  • 3 weeks later...

Manymoretodays,

 

Thank you so much. I am so appreciative to this community and all the shared experience and support. 

 

The "Managing the Endgame Taper" post is extremely helpful and thanks for the reminder that's there's no rush. 

 

Will keep you posted. Wishing everyone a safe and blessed new year. 

 

With hope and gratitude,

stellablue

 

 

Early days foggy. Started on prozac 1997, then switched to zoloft, then paxil.

On Paxil for 20+years.

4th time trying to withdrawal from Paxil (2011 cold turkey, 2015 10% dose reduction every 2-4 weeks, 2017-2018 way slower..7 months). The 2018 taper, I got to 0 mg but 3 weeks later suffered GI, panic attacks, suicide ideation/psychosis..reinstated to 10mg Paxil.   

2019 Dec paxil 10 mg (starting dose) stepping down by 10% receptor occupancy (RO) ~every month with liquid Paxil depending on symptoms: 4-Dec 5 mg (50% RO), 1-Jan 2020 3.4 mg (40% RO), 29-Jan 2.2 mg (30% RO), 29-Feb 1.75 mg, 14-Mar 1.3 mg (20% RO), 28-Mar 0.94 mg, 18-Apr 0.74 mg, 25-Apr 0.56 mg (10%)  

Below 0.5 mg.. decided to make larger step downs: 16-May 0.32 mg (5% RO), 27-Jun 0.2 mg, 8-Aug 0.1 mg, 13-Sept 0.05 mg (0.5% RO), 11-Oct 0.025 mg (0.25% receptor occupancy), 17-Aug 2021 0.05 mg (0.5% RO) and holding

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@brassmonkey or anyone else who's gone to zero after a slow taper ... did anyone continue to experience symptoms after zero? I just read this paper and am freaking out that things could get worse and stay bad for a long time after hitting zero:

 

Hengartner, M. P., Schulthess, L., Sorensen, A., & Framer, A. (2020). Protracted withdrawal syndrome after stopping antidepressants: A descriptive quantitative analysis of consumer narratives from a large internet forum. Therapeutic Advances in Psychopharmacology. https://doi.org/10.1177/2045125320980573

 

Last time I tapered (over 6months/jumped off at 2.5 mg/didn't know what I was doing), I only had symptoms emerge 3 weeks after reaching zero. And they were so bad I reinstated meds. This time I did an even slower taper (1 year and still going) in hopes that I would not experience such difficulty after hitting zero. This time  symptoms emerged below ~2 mg (waves and windows)    

 

Could use some hope..

Early days foggy. Started on prozac 1997, then switched to zoloft, then paxil.

On Paxil for 20+years.

4th time trying to withdrawal from Paxil (2011 cold turkey, 2015 10% dose reduction every 2-4 weeks, 2017-2018 way slower..7 months). The 2018 taper, I got to 0 mg but 3 weeks later suffered GI, panic attacks, suicide ideation/psychosis..reinstated to 10mg Paxil.   

2019 Dec paxil 10 mg (starting dose) stepping down by 10% receptor occupancy (RO) ~every month with liquid Paxil depending on symptoms: 4-Dec 5 mg (50% RO), 1-Jan 2020 3.4 mg (40% RO), 29-Jan 2.2 mg (30% RO), 29-Feb 1.75 mg, 14-Mar 1.3 mg (20% RO), 28-Mar 0.94 mg, 18-Apr 0.74 mg, 25-Apr 0.56 mg (10%)  

Below 0.5 mg.. decided to make larger step downs: 16-May 0.32 mg (5% RO), 27-Jun 0.2 mg, 8-Aug 0.1 mg, 13-Sept 0.05 mg (0.5% RO), 11-Oct 0.025 mg (0.25% receptor occupancy), 17-Aug 2021 0.05 mg (0.5% RO) and holding

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  • Moderator

Hi Stella-- welcome to SA. I'm sorry to see that you are starting to experience symptoms from your taper. We are going to need some more information on how your tapered and what symptoms you are feeling. Let's take this discussion over to your intro thread, that is the best place to ask  questions about your personal experience. It keeps all the information in one place so things don't get lost.

 

Brassmonkey

20 years on Paxil starting at 20mg and working up to 40mg. Sept 2011 started 10% every 6 weeks taper (2.5% every week for 4 weeks then hold for 2 additional weeks), currently at 7.9mg. Oct 2011 CTed 15oz vodka a night, to only drinking 2 beers most nights, totally sober Feb 2013.

Since I wrote this I have continued to decrease my dose by 10% every 6 weeks (2.5% every week for 4 weeks and then hold for an additional 2 weeks). I added in an extra 6 week hold when I hit 10mg to let things settle out even more. When I hit 3mgpw it became hard to split the drop into 4 parts so I switched to dropping 1mgpw (pill weight) every week for 3 weeks and then holding for another 3 weeks.  The 3 + 3 schedule turned out to be too harsh so I cut back to dropping 1mgpw every 4 weeks which is working better.

Final Dose 0.016mg.     Current dose 0.000mg 04-15-2017

 

"It's also important not to become angry, no matter how difficult life is, because you can loose all hope if you can't laugh at yourself and at life in general."  Stephen Hawking

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  • Moderator Emeritus

Hi stellablue,

I moved your last post back here to your Introduction, as it helps keep everything in context.

 

On 12/20/2020 at 7:56 PM, stellablue said:

Thanks manymoretoday.. I revised my signature to add a bit more info about my journey.

I was doing lowering my dose by increments of 10% receptor occupancy from 5 mg to ~0.5 mg. Once I got to 0.5 mg, I started to do larger dose reductions because I was already below 1.0mg. I just didn't know when to finally make the leap to zero. So the doses keep getting closer and closer to zero, but I don't know how long to continue tapering versus stopping completely. I don't know if I should wait for no symptoms (stabilization) before going to zero or just keep infinitely creeping towards zero if the symptoms are 'tolerable'. I also don't know what the threshold is for tolerable versus not okay/need to go back up to my last dose (sleep is super important but it seems almost all of us here have struggled with it). I guess ideally I would hold here until all symptoms subsided and then repeat that until I reach zero (or 0.0001 mg?). 

 

Withdrawal symptoms I've had this taper include:

Insomnia; hypersensitivity to stress, light and noise; irritability; anxiety; joint aches and pains; runny nose; hot flashes (especially related to anxiety, bad mood); hot, swelling and throbbing  feet.   

The only other medication I'm on right now is for my thyroid: levothyroxine. Other that, as I mentioned above (Magnesium, Daily vitamin, CBD, probiotic, lactium). 

Thanks so much for the welcome, thoughts and links!

 

Often, when getting to the 1.0 mg point, and then lower than that, it's usually best to do lesser dose reductions.

I quoted what you had listed for symptoms above.

 

When did these symptoms start?  After what dose?  And then when did the symptoms hit after the dose?

 

And then at present you are on a dose of .025 mg, is that correct?  And then you had dropped 50%, from .05 mg to .025 mg on the 11th of October, 2020?  And holding there.

 

Thanks stellablue, and I'll @brassmonkeyhere too, to weigh on in, when they get a chance.  So that we can evaluate if you might benefit at all from a updose and get some more input on an end dose for you too.

 

Thankyou brassmonkey. 

 

Best, L, P, H, and G,

mmt

Late 2023- gone to emeritus status, inactive, don't @ me, I can check who I've posted on, and I'm not really here like I used to be......thanks.

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016.  And.....I quit smoking 11/2021. Lapsed.  Redo of quit smoking 9/28/2022.  Can you say Hallelujah?(took me long enough)💜

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider.  My success story:  Blue skies ahead, clear sailing

 

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  • 1 month later...

@manymoretodays

 

My first post describes my symptoms and dose, but to briefly reiterate in Oct 2020 i lowered my dose from 0.05 mg to 0.025 mg. The day of the dose reduction, I had a panic attack as a result of taking CBD with THC (I never took this before and never will again). A week thereafter I started having insomnia. From Oct 2020 to today (Feb 2021), my sleep has gradually improved and become more regular. I am regularly getting 5 to 6 hours of sleep and sometimes more and then sometime there's a freak day I get none. Strangely whenever I wake up from sleep, my feet start to get hot and begin throbbing. Joint aches the week before my period have increased in the last two months.  Since I still have some symptoms, I am still holding at 0.025 mg. Overall, I am doing much better (symptoms are tolerable) but don't know when I should resume my dose reduction. I've never waited until I had zero symptoms to dose reduce before but I want to be cautious.. my sleep still seems fragile. My last post (Jan 11), I was less freaked out about the insomnia and more freaked out about what my life will look like when I do come go to zero (will there be more symptoms, worse symptoms?). I guess I was hoping for some reassurance that not everybody suffers with bad symptoms years after reaching zero.   

 

 

Early days foggy. Started on prozac 1997, then switched to zoloft, then paxil.

On Paxil for 20+years.

4th time trying to withdrawal from Paxil (2011 cold turkey, 2015 10% dose reduction every 2-4 weeks, 2017-2018 way slower..7 months). The 2018 taper, I got to 0 mg but 3 weeks later suffered GI, panic attacks, suicide ideation/psychosis..reinstated to 10mg Paxil.   

2019 Dec paxil 10 mg (starting dose) stepping down by 10% receptor occupancy (RO) ~every month with liquid Paxil depending on symptoms: 4-Dec 5 mg (50% RO), 1-Jan 2020 3.4 mg (40% RO), 29-Jan 2.2 mg (30% RO), 29-Feb 1.75 mg, 14-Mar 1.3 mg (20% RO), 28-Mar 0.94 mg, 18-Apr 0.74 mg, 25-Apr 0.56 mg (10%)  

Below 0.5 mg.. decided to make larger step downs: 16-May 0.32 mg (5% RO), 27-Jun 0.2 mg, 8-Aug 0.1 mg, 13-Sept 0.05 mg (0.5% RO), 11-Oct 0.025 mg (0.25% receptor occupancy), 17-Aug 2021 0.05 mg (0.5% RO) and holding

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  • Moderator Emeritus

Hi stellablue,

Oh, of course not......not everybody suffers with bad symptoms years after reaching zero.  Of course not. 

You can sometimes get a warped view or expectation, if you read too many of the seemingly desperate Introduction posts.

Head to the Success Stories.  And you'll see, even though, there are symptoms described sometimes years after.........I don't know that they are neccessarily "bad symptoms", and most of us learn how to cope, and keep moving forward, pause when we have to, but overall do just fine.

 

And yes, menstrual cycles can be tricky to work around.

 

I don't think you need an updose then, after reading your reply.  And I'm just not certain what to tell you for a jump off dose still.

You started at 10 mg back in December 2019, correct?  But this was after a possibly too quick(for you) taper on 2 previous occasions, with some scary symptoms of WD.

 

Me, if I were you, I don't think I would feel frustrated with holding now at .025 mg of Paxil.  And then you had the possible reaction to CBD in October too.  I think 6 months of a HOLD, would be optimal.  And I might resume tapering in April, granted that you are in good WD stability normal.

 

You know, if you look at it, I don't think that the 0.025 mg dose is preventing healing now, or readjustment of neuroreceptors and transmitters that the drug changed, which are throughout your nervous system and other systems.

I think it actually might be helpful to have that 0.25% of receptor occupancy right now.

 

Your thoughts? 

 

I know it doesn't do your symptoms justice, BUT, I think you are doing really well this time......with your taper and WD.

Maybe you can work on the celebration you'll have later, after another reduction or two, and then jumping off.  I was thrilled to be done with my drugs completely.......I think my celebration was more internal, than actually throwing myself a party or anything.  And just a few Waves since, and at this point, I don't really feel like rehashing or analyzing the darn Waves to death, although they do deserve a certain death or finality......oh no, B) Lol.  I'm not a violent person.

I also discovered that I had a certain relationship to the drug(s) too, that had developed over decades.  And that was different from all the physiology and other healing going on.  I mean I had learned from shrinks and others that I was so called "defective" and began to believe it, and really didn't think I COULD do life on my own.  So maybe that kind of "relationship" had to do with "undiagnosing" myself too.  I'm not claiming utter normality here either.......thank goodness for my quirks, and uniqueness.  Normal= setting on washing machine.  Drug(s) did not work for me, and made me sicker.  Simple as that.

 

Best, L, P, H, and G,

mmt

 

I'm guessing you've seen this, but will link you to it anyway:  Ollie, Ollie Oxen Free, Managing the Endgame Taper

And it's still being worked on, and it is difficult, as we have not, and may not be able to establish hard and fast guidelines for end doses.

You might be interested in this post too, it's around another drug, but Alto's explanation to that member:

https://www.survivingantidepressants.org/topic/16666-liaj-overwhelmed-by-the-deluge-of-information-but-no-real-answers/?do=findComment&comment=522481

2.5% of the original dosage, was the answer to that member, as to a jumping off dose

 

I think the CBD may have thrown you off, a bit too.  I mean now you know, that it's one of those things you are ultra sensitive too now.  There may be many.  So obviously, do only add one thing in the way of supplements, at a time, and start low, real low.

 

Have you been able to get going with Omega3's/ Fish Oil or Magnesium?  I referenced them in my first post to you, above.

 

Okay, thanks.

 

Edited by manymoretodays
elaboration, couldn't help it..... :-) additional

Late 2023- gone to emeritus status, inactive, don't @ me, I can check who I've posted on, and I'm not really here like I used to be......thanks.

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016.  And.....I quit smoking 11/2021. Lapsed.  Redo of quit smoking 9/28/2022.  Can you say Hallelujah?(took me long enough)💜

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider.  My success story:  Blue skies ahead, clear sailing

 

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  • 1 month later...

@manymoretodays, it is so good to read (and re-read your post). Thank you so much for the perspective and hope!!   

 

One of my symptoms has worsened...ugh. I was having burning feet mostly at night. Now it's become much worse, not only do I wake with burning feet but now I get burning feet and pins and needles after standing a short while. Sometimes I feel burning now in my hands too. I thought initially they were linked to diet (I found out my histamine levels were high), but it now they are mostly triggered by standing or moving (and still persist asleep) and worsen with hotter weather. I've read the "Paresthesia: pins & needles, numbness, tingling, burning sensations, aka neuropathy" section. While it makes me feel slightly better I'm not alone and these are not likely due to MS or any other random underlying disease, I'm still rather frustrated. 

 

I've still holding at 0.025 mg (6 months)... and I'm starting to question if I should do anything different. Part of me wants to lower my dose and just get this taper over with (it seems some symptoms are inevitable), part of me wants to go up to my previous dose or try 5 HTP (though the former makes me feel defeated, like I'll never reach my end game), and part of me is too tired to change anything and just wants to stay here at 0.025 mg and try and make friends with my 'pins and needles and burning' feelings everyday. My only respite is to do yoga and meditate. Most days I run and walk as well, despite the feelings (I question if I should be kinder to my feet, it's just so hard not to do the things I'm normally use to doing). The sensations do seem to pass with time and then they creep up again (windows and waves throughout the day). I'm going to try acupuncture again this week. 

 

Crossing my fingers and toes acupuncture helps, and everyday I try to believe I am whole and healthy, that this too shall pass. 

 

 

   

 

 

Early days foggy. Started on prozac 1997, then switched to zoloft, then paxil.

On Paxil for 20+years.

4th time trying to withdrawal from Paxil (2011 cold turkey, 2015 10% dose reduction every 2-4 weeks, 2017-2018 way slower..7 months). The 2018 taper, I got to 0 mg but 3 weeks later suffered GI, panic attacks, suicide ideation/psychosis..reinstated to 10mg Paxil.   

2019 Dec paxil 10 mg (starting dose) stepping down by 10% receptor occupancy (RO) ~every month with liquid Paxil depending on symptoms: 4-Dec 5 mg (50% RO), 1-Jan 2020 3.4 mg (40% RO), 29-Jan 2.2 mg (30% RO), 29-Feb 1.75 mg, 14-Mar 1.3 mg (20% RO), 28-Mar 0.94 mg, 18-Apr 0.74 mg, 25-Apr 0.56 mg (10%)  

Below 0.5 mg.. decided to make larger step downs: 16-May 0.32 mg (5% RO), 27-Jun 0.2 mg, 8-Aug 0.1 mg, 13-Sept 0.05 mg (0.5% RO), 11-Oct 0.025 mg (0.25% receptor occupancy), 17-Aug 2021 0.05 mg (0.5% RO) and holding

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  • 4 months later...

@brassmonkey

@manymoretodays

@Altostrata

 

I don't think I can do this any longer. I am still at 0.025 mg of Paxil and holding (10 months). This dose reduction (or the accumulation of dose reductions over time) is pushing me beyond what I feel like I'm capable of tolerating. I have had insomnia for the last 10 months and its crushing me. I have don't have the energy to do things I use to love. I am frayed at the edges and don't have much stress tolerance. I've been highly reactive emotionally despite the daily mindfulness, yoga and meditation. My partner left me and the stress of him moving out brought on some strange dizziness, brain fog, or vertigo as well as diarrhea, lack of appetite, and thoughts of harm. I am so tired of not feeling like myself. I had been 'fine' on paxil (never up dosed for 20+ years). I feel like I have lost so many good things in life trying to taper off this medication. I don't want to lose another year or years of my life living this way. I just want my life back and want to resume taking my previous dose.

 

My psychiatrist (new) is trying to challenge me on this, she doesn't think the insomnia is related to the taper. She's bent on testing me for mold, lyme's disease, and etc. She wants me to try phosphatidylserine and up dosing. She doesn't think going back up on paxil is the answer. 

 

I felt bullied. All I want to do is go back up to my original dose and call it quits. This no longer feels like self love to keep putting myself through this torture. I have lost the 'why' to continue... Am I crazy to want my old life back?    

Early days foggy. Started on prozac 1997, then switched to zoloft, then paxil.

On Paxil for 20+years.

4th time trying to withdrawal from Paxil (2011 cold turkey, 2015 10% dose reduction every 2-4 weeks, 2017-2018 way slower..7 months). The 2018 taper, I got to 0 mg but 3 weeks later suffered GI, panic attacks, suicide ideation/psychosis..reinstated to 10mg Paxil.   

2019 Dec paxil 10 mg (starting dose) stepping down by 10% receptor occupancy (RO) ~every month with liquid Paxil depending on symptoms: 4-Dec 5 mg (50% RO), 1-Jan 2020 3.4 mg (40% RO), 29-Jan 2.2 mg (30% RO), 29-Feb 1.75 mg, 14-Mar 1.3 mg (20% RO), 28-Mar 0.94 mg, 18-Apr 0.74 mg, 25-Apr 0.56 mg (10%)  

Below 0.5 mg.. decided to make larger step downs: 16-May 0.32 mg (5% RO), 27-Jun 0.2 mg, 8-Aug 0.1 mg, 13-Sept 0.05 mg (0.5% RO), 11-Oct 0.025 mg (0.25% receptor occupancy), 17-Aug 2021 0.05 mg (0.5% RO) and holding

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  • Administrator

Paroxetine can be extraordinarily difficult to go off, particularly the last bit. You might add a little liquid citalopram, perhaps 0.5mg, to see if it helps. If it does, you may be able to drop the paroxetine and convert to citalopram, stabilize, and taper off from there.

 

Fluoxetine is often used to substitute for paroxetine in these situations, but it has a long half-life, so if you get a bad effect from it, that could last for a while.

 

You can, of course, attempt to reinstate paroxetine. If I were you, I'd very carefully titrate up by tiny amounts.

 

If you don't like your psychiatrist, I would find another doctor. Few of them have a clue about paroxetine withdrawal syndrome, which is notorious, but any of them can prescribe these drugs, it doesn't have to be a psychiatrist.

 

See How do you talk to a doctor about tapering and withdrawal?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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@Altostrata Thank you! I am terrified of trying everything..can't imagine worse symptoms at the moment (hence the thought to just go back up to Paxil 10mg). It's been so hard to make a decision, trust my self or a doc.

 

The psychiatrist I saw recommended going in-patient or outpatient for intensive therapy. I'm terrified what they would do to my meds and if I would worsen in that environment. I'm also scared to take a leave of absence from work (will it make things worse). I just started to see a counselor and a sleep doctor for CBT-i.  

 

My symptoms have worsened with the relationship breakup. Being alone now, especially at night when the cortisol spikes and I start thinking/ruminating/worrying, is frightening. If I can make it until the sun comes up, things seem to be better then.

 

I just can't imagine living with symptoms for years waiting for it to pass. I don't know how people cope day after day. I feel like I am giving up years of my life and energy to this and I'm sure what I get at the end. I wish I didn't feel so hopeless about this process. 

 

Do you know of success rates getting off of citalopram (so scared of leaving known to go to unknown)?

 

Could you also tell me why the slow up titration with paxil? The last 2 times it was reinstated I was just given my original dose to restart (no titrating up). 

 

I am scared to go to a new psychiatrist, but I will message one today. Thank you for caring.  

 

BTW.. I did have one small success this spring. I was able to get rid of neuropathy by stopping my multivitamin. Spoke to two others not coming off psych meds who had the same experience. Hope that helps someone. 

 

 

Early days foggy. Started on prozac 1997, then switched to zoloft, then paxil.

On Paxil for 20+years.

4th time trying to withdrawal from Paxil (2011 cold turkey, 2015 10% dose reduction every 2-4 weeks, 2017-2018 way slower..7 months). The 2018 taper, I got to 0 mg but 3 weeks later suffered GI, panic attacks, suicide ideation/psychosis..reinstated to 10mg Paxil.   

2019 Dec paxil 10 mg (starting dose) stepping down by 10% receptor occupancy (RO) ~every month with liquid Paxil depending on symptoms: 4-Dec 5 mg (50% RO), 1-Jan 2020 3.4 mg (40% RO), 29-Jan 2.2 mg (30% RO), 29-Feb 1.75 mg, 14-Mar 1.3 mg (20% RO), 28-Mar 0.94 mg, 18-Apr 0.74 mg, 25-Apr 0.56 mg (10%)  

Below 0.5 mg.. decided to make larger step downs: 16-May 0.32 mg (5% RO), 27-Jun 0.2 mg, 8-Aug 0.1 mg, 13-Sept 0.05 mg (0.5% RO), 11-Oct 0.025 mg (0.25% receptor occupancy), 17-Aug 2021 0.05 mg (0.5% RO) and holding

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6 hours ago, stellablue said:

Could you also tell me why the slow up titration with paxil? The last 2 times it was reinstated I was just given my original dose to restart (no titrating up). 

 

Because from what we've seen, people whose nervous systems are sensitized by withdrawal often have bad reactions to "normal" dosages of drugs they've taken before. They find "normal" dosages are too strong. 

 

The advice you get here is from experience of hundreds, if not thousands, of people going off drugs. If we didn't see that people can go off citalopram, we would not suggest substituting with it. However, what we do see is that going off paroxetine can be extraordinarily difficult.

 

6 hours ago, stellablue said:

I just can't imagine living with symptoms for years waiting for it to pass. I don't know how people cope day after day. I feel like I am giving up years of my life and energy to this and I'm sure what I get at the end. I wish I didn't feel so hopeless about this process. 

 

I am sorry you are caught in the tragic reality of psychiatric drug withdrawal. It is a gigantic medical error and a hidden public health disaster. Every one of the people here is in the same boat.

 

6 hours ago, stellablue said:

BTW.. I did have one small success this spring. I was able to get rid of neuropathy by stopping my multivitamin. Spoke to two others not coming off psych meds who had the same experience. Hope that helps someone. 

 

Good to hear, because for 10 years, we have been telling people that the B vitamins in particular might cause odd symptoms.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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@Altostrata thank you so much for sharing info about the up titration and Citalopram!! I updosed from 0.025mg to 0.05mg. I am feeling much less scared and have contemplated holding here for awhile and see how things go (no big decisions yet). 

 

My nervous system is starting settle a bit with help of my friends, my coach and this community. Last night I got ~6 hours of sleep. Big breath out...

 

Thank you!!  

 

 

 

Early days foggy. Started on prozac 1997, then switched to zoloft, then paxil.

On Paxil for 20+years.

4th time trying to withdrawal from Paxil (2011 cold turkey, 2015 10% dose reduction every 2-4 weeks, 2017-2018 way slower..7 months). The 2018 taper, I got to 0 mg but 3 weeks later suffered GI, panic attacks, suicide ideation/psychosis..reinstated to 10mg Paxil.   

2019 Dec paxil 10 mg (starting dose) stepping down by 10% receptor occupancy (RO) ~every month with liquid Paxil depending on symptoms: 4-Dec 5 mg (50% RO), 1-Jan 2020 3.4 mg (40% RO), 29-Jan 2.2 mg (30% RO), 29-Feb 1.75 mg, 14-Mar 1.3 mg (20% RO), 28-Mar 0.94 mg, 18-Apr 0.74 mg, 25-Apr 0.56 mg (10%)  

Below 0.5 mg.. decided to make larger step downs: 16-May 0.32 mg (5% RO), 27-Jun 0.2 mg, 8-Aug 0.1 mg, 13-Sept 0.05 mg (0.5% RO), 11-Oct 0.025 mg (0.25% receptor occupancy), 17-Aug 2021 0.05 mg (0.5% RO) and holding

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6 hours ago, stellablue said:

I updosed from 0.025mg to 0.05mg. I am feeling much less scared and have contemplated holding here for awhile and see how things go (no big decisions yet). 

 

That's good. It's possible if you stay at this level for some months, you will be able to reduce Paxil again.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Hi @Altostrata.. can I ask about holding?

 

My main wd symptom is insomnia which started after my dose decrease (Oct 2020). 

 

If I were to stay at this dose for a few months, would I be looking for my insomnia to resolve? Is that how I would know if I could reduce Paxil again?

 

With gratitude,
Colleen

 

 

Early days foggy. Started on prozac 1997, then switched to zoloft, then paxil.

On Paxil for 20+years.

4th time trying to withdrawal from Paxil (2011 cold turkey, 2015 10% dose reduction every 2-4 weeks, 2017-2018 way slower..7 months). The 2018 taper, I got to 0 mg but 3 weeks later suffered GI, panic attacks, suicide ideation/psychosis..reinstated to 10mg Paxil.   

2019 Dec paxil 10 mg (starting dose) stepping down by 10% receptor occupancy (RO) ~every month with liquid Paxil depending on symptoms: 4-Dec 5 mg (50% RO), 1-Jan 2020 3.4 mg (40% RO), 29-Jan 2.2 mg (30% RO), 29-Feb 1.75 mg, 14-Mar 1.3 mg (20% RO), 28-Mar 0.94 mg, 18-Apr 0.74 mg, 25-Apr 0.56 mg (10%)  

Below 0.5 mg.. decided to make larger step downs: 16-May 0.32 mg (5% RO), 27-Jun 0.2 mg, 8-Aug 0.1 mg, 13-Sept 0.05 mg (0.5% RO), 11-Oct 0.025 mg (0.25% receptor occupancy), 17-Aug 2021 0.05 mg (0.5% RO) and holding

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  • Administrator

Has your sleep pattern changed since you updosed to 0.05mg Paxil? Do you feel any effects from it?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Forgive me as I didn't read through the entire post but skimmed though it. You mentioned mindfulness which is a good to help cope with random thoughts but my question is are you getting enough natural sunlight? As far as the supplements you're taking are you taking them in the morning, afternoon, night? 

 

I recall when I took  super B complex at night, I'd be to wired to sleep. The only supplement I took at night was magnesium citrate at night. 

 

Whatever you do try to avoid any electronic devices when in bed, so no smart phones, tablets etc. Those will wreak havoc on your sleep.

 

Are you still practicing mindfullness? Don't stop, try to do it each day. You can do it while your working, walking, cooking. It's helps and help me tremendously during my taper.

 

Just remember your taper isn't a race, don't feel you have to get off as quick as possible. Take your time even if it takes you longer than some others, everyone is different. When I lowered to the next dose is when I started feeling more stable, sleep was getting better but remember you will have times when you feel it just won't get any better like you are now. You will get better!!!!

Taken paxil for over 15 years probably closer to 20.

Tapering since Oct 2013 from 10mg Gemini 20 scale thanks to BrassMonkey!

Oct 6, 2013 9.2 mg Nov 27 8.6mg Feb 2 2014 7.8mg March 16 7.4mg March 30 7.0mg May 18 6.2mg July 6 5.8mg Sept 7 5.4 Oct 19 4.8 Dec 14 4.6 Feb 8th 2015 4.2mg Mar 22 3.8mg May 10 3.4mg July 19 3.2mg Sept 6 2.8mg Nov 8 2.5 mg Dec 27 2.3 Feb 14 2016 2.0 Mar 19 updosed to 2.5mg May 4 2.4 June 12 2.2mg July 31 2.0 Sept 11 1.7mg Nov 13 1.5mg Jan 22 2017 1.3mg Mar 19 1.0mg April 20 0.8 June 0.7 Aug 0.6 Sept 0.5 Oct 0.4 Nov 0.3 Dec too low to weigh so I'm eyeballing it the rest of the way!!  2018 Feb 10 finally stopped !!!!! Keeping fingers crossed!!!!!!

Its' 2022 now and feeling good after 4 years of being off Paxil. Continue to stay active with a positive attitude and getting plenty of sun.

 

Current Supplements: Multi-Vitamin, D with occasional K2, C, Super B Complex, Magnesium, Zinc, Fish OIl, Lecithin, E, and probiotics.

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  • 2 weeks later...

@Altostrata thanks for asking.. the good news is that now (2.5 weeks after updosing to 0.05 mg), my sleep is starting to stabilize. But there's been other big changes that I know have also helped. I left where I was living to stay with friends for a few weeks. This has helped my nervous system enormously. I also took a few weeks (sick and vacation days) off of work and I'm going to talk to my boss about taking a couple months leave without pay. Also been mapping out steps to create a life a purpose with my coach. I have had waves of anxiety/depression though since updosing related to all the upcoming changes in my life and decision-making for the future.. trying to get in to see a counselor regularly to deal with that. 

 

@GiantsWSC thank you for the kind words of support. I do meditate every day and try to remember to be mindful with informal practices during the day (your reminder was helpful just now). As for supplements, I am only taking 10 mg CBD at night and irregularly I've been taking iron in the morning (it was low on my last blood test). Other than that, I've been working with a dietitian to get all the vitamins and such via food (e.g., omega 3 via chia/flax seeds). I seem to be sensitive to vitamins in pill/capsule form.. guessing too high concentration. Also I appreciate the reminder it's not a race and that no one's taper will look the same. Deep breaths..

 

Have either of you heard of this place https://www.alternativetomeds.com?  The psychiatrist I'm seeing (and trying to replace) mentioned outpatient as an option but I'm actually quite terrified of taking that route, not knowing what they might do with medications/supplements. 

 

Thank you both!!

 

 

 

Early days foggy. Started on prozac 1997, then switched to zoloft, then paxil.

On Paxil for 20+years.

4th time trying to withdrawal from Paxil (2011 cold turkey, 2015 10% dose reduction every 2-4 weeks, 2017-2018 way slower..7 months). The 2018 taper, I got to 0 mg but 3 weeks later suffered GI, panic attacks, suicide ideation/psychosis..reinstated to 10mg Paxil.   

2019 Dec paxil 10 mg (starting dose) stepping down by 10% receptor occupancy (RO) ~every month with liquid Paxil depending on symptoms: 4-Dec 5 mg (50% RO), 1-Jan 2020 3.4 mg (40% RO), 29-Jan 2.2 mg (30% RO), 29-Feb 1.75 mg, 14-Mar 1.3 mg (20% RO), 28-Mar 0.94 mg, 18-Apr 0.74 mg, 25-Apr 0.56 mg (10%)  

Below 0.5 mg.. decided to make larger step downs: 16-May 0.32 mg (5% RO), 27-Jun 0.2 mg, 8-Aug 0.1 mg, 13-Sept 0.05 mg (0.5% RO), 11-Oct 0.025 mg (0.25% receptor occupancy), 17-Aug 2021 0.05 mg (0.5% RO) and holding

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5 hours ago, stellablue said:

Have either of you heard of this place https://www.alternativetomeds.com?  The psychiatrist I'm seeing (and trying to replace) mentioned outpatient as an option but I'm actually quite terrified of taking that route, not knowing what they might do with medications/supplements. 

 

Please use search to see our discussions about this. Not recommended.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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