Tonia - Nortriptyline taper + withdrawal

[Tonia]

Hello!

I have been surfing the surviving antidepressants forums for the past couple of months ever since my withdrawal symptoms began and have decided to finally make an introduction post as I have some questions and concerns. I apologize for some vague starting dates, it has been a few years and I couldn't find a record of my exact starting dates.

 

 

I also please ask anyone responding to me to express some discretion in describing specificities of their own symptoms, and refrain from excessive pessimism as I am extremely anxious and prone to health anxiety! Someone could tell me my hand could hurt tomorrow, and behold, my hand will hurt tomorrow. 😄 I also may be slow to respond as I try to limit my interaction with WD research and forum reading as it makes my anxiety worse. Thank you for understanding.

 

 

In 2021 I was prescribed amitriptyline to attempt remedying my chronic interstitial cystitis that has been resistant to other treatments. I was initially put on 10mg, then after a few months bumped up to 25mg to see if it would make a larger difference. Unfortunately it did little to remedy my cystitis symptoms (yay.) After several more months on that dosage, I asked to try 30mg to see if it would help more (it did not, unfortunately.) 

In 2022 my GP suggested switching to nortriptyline to see if it would make a bigger difference for my pain. I agreed and did a direct switch from 30mg amitriptyline to 25mg nortriptyline (no crossfading in between them, just a cold one day switch.) I did not know the potential risks of such a switch, and my doctor ensured it was safe since nortriptyline is metabolized out of amitriptyline. I do not recall experiencing any WD symptoms from this switch, but I wasn't exactly looking for any either.

Fast forward to late 2023, I start having some anxiety issues (well they've been going on for a while, but I went to doctors for it around this time,) and after a run in with a lack luster psychiatrist who encouraged me to start a benzo and a new antidepressant on top of the nortriptyline without any care for my concerns against long term benzo use I got quite spooked out by psychiatric medication and wanted to get as far away from it all as possible. I did not take the medication he prescribed me, I only took 3 days of 0.5mg clonazepam that gave me intense side effects (including making my anxiety leagues worse for the duration I was taking it) that I stopped CT after 3 days (I was told this was ok by the pharmacy.) After a particularly intense googling session on all the side effects of benzos and antidepressants (with PSSD becoming my new biggest fear) I became quite unsettled with my already taking nortriptyline, and decided to brave tapering to try and prove to my anxiety that everything will be ok (the irony 😅).

 

I was incredibly nervous to start, and for the entire month leading up to it I was in deep deep anxiety about all the ways it could go wrong, and was still deeply anxious as I was going through the taper. Id like to note, the entire time I was on nortriptyline I did not experience any adverse effects, aside perhaps aggravating my anxiety as it feels like my anxiety getting worse corresponds closely with switching to nortriptyline (not sure if that is possible though!)

So at the start of 2024 January 4th, I began my taper with advice from my GP and a pharmacist to alternate doses between 25mg and 10mg. I had a whole schedule written out where I would start out with alternating 25/10 every other day, then switching to 25/10/10 the next week, and so on and so forth for about a month until I would have hypothetically been alternating between 10 and 0. At the time I had no idea that this is not recommended! Right at the start of the 2nd week (25/10/10) one hour after taking 10mg for the 2nd subsequent day in a row for the first time, I began experiencing vaginal coldness and burning sensations. I started freaking out and barely slept, I ended up taking another 10mg that day a few hours later (so a total of 20mg) out of panic thinking it was the start of PSSD (my aforementioned biggest fear.) Previously, my pharmacist instructed me to return to the 25/10 schedule should I get any distressing symptoms, so that's what I did, counting the 20mg I took that day as "25." The following morning, after advising with my mother, I began to suspect perhaps its not withdrawal, but the worlds worst timed yeast infection 😄, and begun treating it as such with topical creams. After a few days the burning seemed to subside so I assumed I was correct, and continued my 25/10/10 taper. However with the burning receding, instead came electrical zaps, tingles, and smaller burning sensations. So then I started doing more googling, found surviving antidepressants, and decided to try reinstating at 20mg until things calmed down. After I reinstated I didn't feel a particular improvement in symptoms. There was a change that for a few days it felt like specific parts of my pelvic area would "buzz" chronically all day. But then it went away and it returned to more sporadic tingles and zaps. Presently I am still at 20mg going strong!

 

Since then I continue to have weird electric jolts, body zaps, tingles, tickles, etc. in various parts of my body. While primarily focused in the genital/thigh area, it is also common in my heels/feet, and I have felt it in my thumbs, scalp, and sometimes sensations of intense pressure in my face/cheek. I still occasionally get vaginal burning as well. There is no actual numbness, or sexual dysfunction, I can still feel everything, it just tingles. It is not painful, or too uncomfortable (with a few days of exceptions where it was at its worst.) But it is very very nerve wracking. It comes and goes, it is not constant, though some sensations may last for a few days. It does feel like it is slowly reducing over time, and despite my worst fears I have full faith it will one day go away. It gets noticeably worse whenever I am nervous and freaking out, or if I sit and/or lie down (for pelvic/feet.) I have also experienced some increased tinnitus in one ear about a month into the withdrawal, but tinnitus has been a life long problem and that ear has been finicky way before I started to taper so Im not quick to blame it on the withdrawal. 😅 I am also not sure if my extreme anxiety these days can be credited to the withdrawal, since I was unfortunately in a pretty similar state of mind prior to tapering.

 

I have since spoken with my GP, and my GP's opinion was that it is not withdrawal and entirely psychosomatic since Ive been in a state of chronic high anxiety for nearly a year and was expecting my taper to go wrong in every way possible. However I have been referred to a neurologist and a new psychiatrist anyway. The new psychiatrist I saw is actually quite incredible, and believes what is happening to be withdrawal related. The psychiatrist is even familiar with the 10% taper, and in my circumstances, even recommended I taper by 5% if/when I decide to continue. I have also since started counseling to help reduce my high levels of anxiety, so hopefully with all these things combined I am well on my way to recovery, however difficult it may feel now. 

 

To conclude this terribly long introduction post. I am now left with some questions on how to proceed forward. First question being about compounded pills, my psychiatrist recommended compounding doses at a pharmacy for future tapering, but also said I could manually weigh them. I recall seeing some posts saying compounded pills can be quite variable in weight and thus they concluded they are unreliable for a taper. Is this true? My understanding is that even the non-compounded pills tend to vary in weight, but this doesn't seem to have many negative repercussions. I would prefer to compound since it is much more convenient, and manually calculating doses would make me nervous. But if it is unreliable I would rethink this stance. Second question I'll admit is less of a question, and bit more in the realm of seeking reassurance. But please bear with me. Should tapering correctly and slowly (5-10% decreases) reduce my chances of getting PSSD? I have had no sexual dysfunction from these pills, yet PSSD is my biggest fear and I have read plenty of worst case scenarios on the internet of people being stuck with no emotions for years on end. My understanding is that PSSD comes with two camps, one as a result of adverse reaction from being on the medication (SD while still on the drug) that then doesn't go away after taper. Then the other as a symptom of withdrawal. It seems like adverse reaction PSSD seems to be the more common case with terrible long term cases, whereas withdrawal seems to be more forgiving and more likely to go away with time. Is this assumption correct? Have you guys seen cases of PSSD/anhedonia emerging after conservative 10% tapers? I understand there are no guarantees with tapering, but I am hoping to find something to latch onto to to put my mind at ease.

 

Thank you for taking the time to read my post! I wish us all to have smoother journeys going forward. 

 

 

 

[Tonia]

Sorry I forgot to mention that I've also been taking several supplements + vitamins before/during and after the taper. I don't have a full list of them because my mother provides them for me but from the ones I do know I am taking: I am taking L-theanine, Ashwagandha, some stuff for hormone balancing, antioxidants, a few Vitamin B supplements, magnesium, Calcium, and a general multivitamin supplement. 

 

I read a story of how one person got PSSD just from 5-htp, and got worried about worsening my current condition or causing PSSD with the stuff I am taking now, primarily L-theanine and Ashwagandha. Is there any basis to this claim? I know I am supposed to ween off Ashwagandha soon, but ever since reading that story, Im worried if I should try doing it really slowly, or hold off on it until my current withdrawal symptoms feel better? Any tips on tapering Ashwagandha safely? The ones I take come in a capsule do I just split it open and measure them out? Perhaps I may be overthinking this a little 😅

[Erimus]

Hello and welcome to Surviving Antidepressants.

 

This topic is for anything relating to you, and any questions you have. Please do not start another topic.

 

We recommend tapering by no more than 10% of your CURRENT dose each month, to limit withdrawal symptoms. E.g. 10mg --> 9mg --> 8.1mg. I see you have already worked this out after reading, and you now know not to skip doses. I would hold on 20mg for the next few weeks and see how your symptoms progress. I suspect they will improve with time and a consistent daily dose. When you are ready again I would experiment with a drop of 5% to start with.

 

All the answers you are looking for regarding tapering and antidepressant withdrawal are on this site. Please search around and continue to read as much as you can manage. Use the site search function to search for specific words or phrases, such as drugs or symptoms.

 

Here are a few of the most useful links:

 

Why taper by 10% of my dosage?

 

How to make a liquid from tablets or capsules

 

Using a scale to weigh and measure doses

 

We only recommend two supplements. Omega 3 Fish Oil and Magnesium. Both should be introduced separately and increased slowly. I would reduce and remove your other supplements one by one, to see if they are contributing to any of your symptoms. I tapered off Ashwagandha over a year ago with next to no issues.

 

On 3/10/2024 at 5:15 AM, Tonia said:

I have had no sexual dysfunction from these pills, yet PSSD is my biggest fear and I have read plenty of worst case scenarios on the internet of people being stuck with no emotions for years on end. My understanding is that PSSD comes with two camps, one as a result of adverse reaction from being on the medication (SD while still on the drug) that then doesn't go away after taper. Then the other as a symptom of withdrawal.

Please do not spend your time worrying about a symptom if you have not experienced it. I know it's easy for me to say, but you must find a way to manage your anxiety through this process.

 

On 3/10/2024 at 5:15 AM, Tonia said:

The new psychiatrist I saw is actually quite incredible, and believes what is happening to be withdrawal related. The psychiatrist is even familiar with the 10% taper, and in my circumstances, even recommended I taper by 5% if/when I decide to continue.

It sounds like you have struck gold there, please hold onto your new psychiatrist.

 

Regards

Erimus

[Tonia]

Hello, @Erimus

 

Apologies if its not appropriate to tag you, I'm not sure what the etiquette on this forum is!

Just wanted to thank you for your response. It's challenging to not think about everything that could go wrong but I will keep my head held high.

As for my aforementioned question about compounding pharmacies. I briefly searched and it seems like generally people have positive experiences. However I was curious what the perspective of a mod would be having answered/look at many posts themselves.

It is alright if you do not feel comfortable/feel it is appropriate to provide a stance on the subject!

 

Thanks,

Tonia

[Tonia]

I often feel quite apprehensive about tapering. On one hand I am on antidepressants for essentially no reason, and it makes little sense to continue taking the drug. On the other hand It has given me relatively no adverse effects, where as tapering has given symptoms and may continue to later. I question if staying on the drug may be the right choice for quality of life, and keep fearing that tapering will doom myself to a lifetime of misery. However staying on a drug for no reason is also quite silly haha. 

I am very much aware its the fear talking, and my psychiatrist reassures me by saying all cases of withdrawal he has seen have gone away given time  

There is a very real possibility that my taper goes well and I am able to eventually be antidepressant free.

 

I'll try to hop in every few months to let people know how I'm doing, I salute anyone else trying to taper nortriptyline!

Presently I'm going through a small wave, with some worsening tingles in parts of my body. As well as anxiety, lots of anxiety! But what can you do haha

[Erimus]

1 hour ago, Tonia said:

Hello, @Erimus

 

Apologies if its not appropriate to tag you, I'm not sure what the etiquette on this forum is!

Just wanted to thank you for your response. It's challenging to not think about everything that could go wrong but I will keep my head held high.

As for my aforementioned question about compounding pharmacies. I briefly searched and it seems like generally people have positive experiences. However I was curious what the perspective of a mod would be having answered/look at many posts themselves.

It is alright if you do not feel comfortable/feel it is appropriate to provide a stance on the subject!

 

Thanks,

Tonia

No problem at all, I'm sorry I missed the question about compounding the medication. I don't have experience with it, mainly because there is little to no availability of compounding pharmacies in England. I was searching a week or two back because I didn't want the hassle of making my doses, but I could only find one, and they only did liquid or 'lozenges'.

 

Many people on the forum have used them with success, just make sure you get a few different quotes, and test how you react to the pills. First thing I would do is switch on to 20mg (same as your current dose) compounded pills. Read the thread on compounding pharmacies if you haven't already.

 

57 minutes ago, Tonia said:

On the other hand It has given me relatively no adverse effects, where as tapering has given symptoms and may continue to later. I question if staying on the drug may be the right choice for quality of life, and keep fearing that tapering will doom myself to a lifetime of misery. However staying on a drug for no reason is also quite silly haha.

The reason tapering gave you symptoms is because you were taking a massively different dose every day. If you taper per the protocol here you will probably find withdrawal symptoms are basically non-existent.

[Tonia]

On 3/16/2024 at 4:38 PM, Erimus said:

No problem at all, I'm sorry I missed the question about compounding the medication. I don't have experience with it, mainly because there is little to no availability of compounding pharmacies in England. I was searching a week or two back because I didn't want the hassle of making my doses, but I could only find one, and they only did liquid or 'lozenges'.

 

Many people on the forum have used them with success, just make sure you get a few different quotes, and test how you react to the pills. First thing I would do is switch on to 20mg (same as your current dose) compounded pills. Read the thread on compounding pharmacies if you haven't already.

 

The reason tapering gave you symptoms is because you were taking a massively different dose every day. If you taper per the protocol here you will probably find withdrawal symptoms are basically non-existent.

 

Thank you for your response! I really appreciate the advice about trying out 20mg compounded first, I haven't heard it before. I'll bring it up to my psychiatrist when we next meet. 

Also thank you for the words of reassurance. I will remind myself that per statistics, I've gotten through the worst of the symptoms already.  

I wish you well on your taper as well, having read through your introduction it sounds difficult.

[Tonia]

Hello @Erimus

 

I hope you dont mind me bugging you again! Hopefully for one last question.

I was wondering if it is advised against taking any muscle relaxants during withdrawals? I occasionally take ibuprofen + methocarbamol as needed for chronic tension headaches. I took some earlier on in my withdrawal without any seeming negative effects. However I recall once seeing Altostrata mention in some thread that they're unadvised. Is this true for all muscle relaxants? I know some are similar to tricylic antidepressants or benzos, I dont believe methocarbamol is (correct me if Im wrong.)

Presently riding out another tension headache, wondering if I should avoid them  

Also I'm assuming Ibuprofen is ok? Seems hard to imagine life without ibuprofen for the foreseeable future haha

 

Apologies again for mentioning you, I tried doing some (fruitless) research prior to asking myself.

[Tonia]

I was also hoping to ask, hoping to put my mind at rest and to stop reading all the darn PSSD horror stories.

Is my genital tingling a sign of PSSD to come? 😨 It gives me peace knowing I don't presently have sexual dysfunction symptoms, however when people describe their genitals going completely numb it feeds my imagination. Surely tingling and total numbness are different things, and with my paresthesia occurring in other places in the body as well means the problem is connected to my overall nerves, not PSSD? My biggest fear is this present tingling going away, then when I taper again it returns in the form of PSSD. 😨

 

How to stop freaking out about PSSD challenge is proving to be difficult, time to stop freaking out about things that have not even happened.

[Tonia]

Question:

 

Sorry to ask again, but I am still quite curious and didnt get an answer last time.

Is there contraindication to use methocarbamol with ibuprofen (the combo pill) while going through withdrawal? I've seen some posts suggest to stay away from muscle relaxants, is there specific ones to stay away from or does this apply to all? Thanks.

 

In other news:

My previous wave seems to be subsiding. Still experiencing the same withdrawal symptoms, but at least they are returning to a lower baseline haha. Soon I'll be trying to taper off ashwagandha slowly as well. (25% each week.) My anxiety has been improving with a lot of therapy and hard work! I have gone through the motions to block any websites that have to do with antidepressants or withdrawal to avoid triggering my anxiety to get worse. I try to only unblock surviving antidepressants when I have genuine questions to ask.

[Tonia]

I was also wondering, I read some anecdotes that some people dont feel withdrawal until after 3 months have passed. Is there reason to expect my withdrawal to suddenly get worse at the 3 month mark? 

I want to say I am safe since I reinstated, experienced symptoms nearly immediately, and have been experiencing improvements. But after hearing that I am a little intimidated, I am approaching the 3 month anniversary haha;;

[Tonia]

Another question:

 

If you're unsure whether or not you took a dose that day. Is it better to skip, or take your regular dose anyway?

Today I wasn't sure, though I was leaning more towards having probably not taken today's dose. But doing the calculation and counting how many pills I was supposed to have: I was left with less than what I counted I was supposed to have. 

Super scared, but I took my day's dose anyway since I may have double dosed on a different day on accident. Was that the right call? Accidentally double dosing or skipping a dose wouldn't derail my taper entirely right;; haha

[Erimus]

On 4/7/2024 at 10:39 AM, Tonia said:

Sorry to ask again, but I am still quite curious and didnt get an answer last time.

Is there contraindication to use methocarbamol with ibuprofen (the combo pill) while going through withdrawal? I've seen some posts suggest to stay away from muscle relaxants, is there specific ones to stay away from or does this apply to all? Thanks.

I'd be cautious with any medication I take. You have to weigh up risk and benefits.

 

On 4/7/2024 at 10:46 AM, Tonia said:

Is there reason to expect my withdrawal to suddenly get worse at the 3 month mark? 

That tends to be more related to when people have suddenly stopped the drug, or have removed vast quantities far too quickly.

 

6 hours ago, Tonia said:

If you're unsure whether or not you took a dose that day. Is it better to skip, or take your regular dose anyway?

Today I wasn't sure, though I was leaning more towards having probably not taken today's dose. But doing the calculation and counting how many pills I was supposed to have: I was left with less than what I counted I was supposed to have. 

Super scared, but I took my day's dose anyway since I may have double dosed on a different day on accident. Was that the right call? Accidentally double dosing or skipping a dose wouldn't derail my taper entirely right;; haha

I would suggest getting a pill organiser that has Mon-Sun compartments. Fill it up at the start of the week, then you know if you have taken your dose each day. You should be alright accidentally missing or double dosing once, we've all been there at some point, just monitor how you feel in the coming days.

[Tonia]

On 4/8/2024 at 7:05 AM, Erimus said:

I'd be cautious with any medication I take. You have to weigh up risk and benefits.

 

That tends to be more related to when people have suddenly stopped the drug, or have removed vast quantities far too quickly.

 

I would suggest getting a pill organiser that has Mon-Sun compartments. Fill it up at the start of the week, then you know if you have taken your dose each day. You should be alright accidentally missing or double dosing once, we've all been there at some point, just monitor how you feel in the coming days.

Thanks for the response, it has calmed me down a fair bit. I will definitely look into getting a pill organizer going forward haha.

 

I started my ashwagandha taper today. Very scared! I take about 300mg twice a day for about 3/4 months now, and my understand is that staying too long on it isn't very good for you. I am terrified that tapering off of it will induce worse symptoms or new symptoms but staying on it even longer isn't that viable of an option.

The internet seems to suggest a 25% cut each week, but me being extra paranoid will try just 10% (from the initial total, not exponential like antidepressants.) Does this sound like a smart idea?

So this morning I took only 90% of the measured amount of the total pill and mixed it with water. I assume exponential taper for ashwagandha is a little extreme, since its a herb not an SSRI.

[Tonia]

Went back up to full dose of ashwagandha this evening. I started feeling some increased burning sensations and it freaked me out. Im not sure that the ashwagandha was the cause, since I had some increased burning the day before as well. But safe to say it has thoroughly freaked me out and Ill be holding off on it until I feel better haha.

[Erimus]

11 hours ago, Tonia said:

Thanks for the response, it has calmed me down a fair bit. I will definitely look into getting a pill organizer going forward haha.

 

I started my ashwagandha taper today. Very scared! I take about 300mg twice a day for about 3/4 months now, and my understand is that staying too long on it isn't very good for you. I am terrified that tapering off of it will induce worse symptoms or new symptoms but staying on it even longer isn't that viable of an option.

The internet seems to suggest a 25% cut each week, but me being extra paranoid will try just 10% (from the initial total, not exponential like antidepressants.) Does this sound like a smart idea?

So this morning I took only 90% of the measured amount of the total pill and mixed it with water. I assume exponential taper for ashwagandha is a little extreme, since its a herb not an SSRI.

An exponential taper definitely isn't necessary for it. I think I skipped doses for a few weeks and then stopped. Maybe had one day or so where I had a few hot flashes, other than that it was negligible. I'd been on it for over a year.

 

 

 

 

 

 

Edited April 10 by Erimus

[Erimus]

3 hours ago, Tonia said:

Went back up to full dose of ashwagandha this evening. I started feeling some increased burning sensations and it freaked me out. Im not sure that the ashwagandha was the cause, since I had some increased burning the day before as well. But safe to say it has thoroughly freaked me out and Ill be holding off on it until I feel better haha.

I don't think that would have been as a result of reducing ashwagandha by 10%. You need to learn to manage your anxieties surrounding symptoms in order to be succesful in tapering. Symptoms are inevitable, it's what you do to cope with them that makes the difference.

[Tonia]

9 hours ago, Erimus said:

I don't think that would have been as a result of reducing ashwagandha by 10%. You need to learn to manage your anxieties surrounding symptoms in order to be succesful in tapering. Symptoms are inevitable, it's what you do to cope with them that makes the difference.

Thank you for your response and words of encouragement. My anxiety has genuinely been better, there's just been a terrible uptick of it the past few days. It'll probably be wise to hold off until I can calm down

The terrible fear of PSSD has etched itself so hard into my brain that I keep fearing I'm on the edge of getting it as a symptom - and that tapering off the ashwagandha will be the "final push" to bring it into my life.

All the research I've done reading the forums suggests at worst people only get flare ups of existing symptoms when they cold turkey. I have yet to see a single person be unwell after tapering it.

[Tonia]

I've decided to hold off on tapering the ashwagandha for at least another month. The anxiety around it got too intense and I need to step away from the ordeal.

There's a hope in my mind that in a month or so my symptoms would've reduced more and I would feel more confident in changing anything with my supplements.

 

I keep worrying that tapering the ashwagandha will induce new symptoms (PSSD primarily,) by introducing more changes into my nervous system. The hope is that later my nervous system would be more resilient? Not sure if thats just wishful thinking haha. I keep worrying that my genital tingling + burning means I'm "on the edge" of PSSD, even though my sexual function has been fine outside of increased pain. So I'm more in the realm of PGAD/neuralgia, rather than PSSD. 

I just keep fearing making "the wrong choice" and accidentally plunging myself deep into PSSD.

[Tonia]

Question: Do people have issues using topical retinol creams/serums for skincare while in withdrawal?

 

Came across the term post-retinoid sexual dysfunction, and it spooked me out a little since I've been using an over the counter retinol serum once a day for a while now with no issues. I want to stop using it for my own peace of mind, but got paranoid that stopping it would induce sexual dysfunction. I am extremely aware that worrying about this at this point is excessive and I'm trying to laugh at myself about it. But figured I would ask just in case to ease my nerves. 😅

The research I did online says the condition is found only in prescription oral retinoids that are more potent than any over the counter creams or serums ever could be, and nearly always as an adverse reaction rather than as a result of stopping. There was only one guy on reddit who claimed sexual dysfunction from otc retinols, and even that would go away once he stopped using it, but you know... reddit.

 

To abate my paranoia I only used about half the serum yesterday and will see what thats like for a week, then stop entirely or reduce to a quarter amount. I feel incredibly silly for applying tapering logic to a skin care product but with my anxiety, gotta work with what my brain gives haha.