composter: Amitriptyline withdrawal & reinstated, unsure of next steps

[composter]

Thank you @ShiningLight. Yesterday was much better and my sleep is normalizing. As I told my family "I'm ready to join the outside world." The fear that was gripping me just last week has lowered and I am able to return to looking at screens and getting my work done. 

 

It is absolutely true that after a wave happens, there is something that improves and heals. After my two previous waves the things that healed were: my physical capacity and ability to walk and carry heavy things, and my emotional stability. This time, I believe the thing that is healing is my most persistent symptom: the feeling that my head is always cold. For just over a year now I've worn multiple hats to bed and I wear hats and ear covering during the day. Even on the hottest days of summer. I believe those neural pathways are finally healing and i won't need to wear as many layers. 

 

Also, can someone help me logically think through the fear mentioned above: that if the world as we know it ends and everyone must inadvertently go off their meds, all hell will break loose? How rational or irrational is this? How truly rare are those of us who go through ADWD?

[ShiningLight]

I have that fear too. Drug shortages have happened in history due to wars etc but they are rare in the US. I like to think that big pharma would never allow such an interruption to their revenue stream.  🤣 😭

 

Best course is fill your rx within the earliest window and save some for a rainy day in case of armagedden necessitating fast taper. Probably if something that catastrophic happened  biggest problem wouldn't be meds, but surviving in general.

[composter]

On 9/13/2019 at 6:07 PM, ShiningLight said:

Best course is fill your rx within the earliest window and save some for a rainy day in case of armagedden necessitating fast taper. Probably if something that catastrophic happened  biggest problem wouldn't be meds, but surviving in general.

 

Hehe that does help in some dark way. I have been stocking up on extra prescriptions and have a pill crusher and scale tucked away in an emergency kit of sorts. (Currently I am using a compounding pharmacy for my taper.) 

 

Past few days have been a whirlwind with moving and getting ready to start my grad program. I'm definitely out of my wave and my mindset is much more clear and balanced. Going to be focusing on the real world for the next few months and may not visit SA as much. 

 

Still holding at 8.5 for another 2 weeks or so to adjust to this life transition, then will do 8.25 for 2 weeks and an 8 mg hold for 3 weeks. That's the plan, at least. Will continue onwards in that fashion until 5 mg when I will switch to liquid. 

 

Love and prayers to everyone out there dealing with this issue. May you find support, understanding, healing, and peace amidst the darkness and pain.

[ShiningLight]

20 minutes ago, composter said:

Past few days have been a whirlwind with moving and getting ready to start my grad program. I'm definitely out of my wave and my mindset is much more clear and balanced. Going to be focusing on the real world for the next few months and may not visit SA as much. 

 

So glad you're feeling better and more clear.

 

The real world is why we're all here. Go for it!!! 👏👏👏

[ShiningLight]

1 hour ago, composter said:

 

Hehe that does help in some dark way.

 

Reminds me of a conversation I had with my computer guy about backing up files. I told him I didn't feel comfortable backing up in the cloud and that I have a removable hard drive for that purpose. He said the only thing you wouldn't be covered for is fire, then. I told him I thought about mailing it to my sister who lives in another state, and he said oh! So you'd be protected from nuclear war, then too! Funny/not funny, considering what's going on in the world today.

[composter]

It’s late and I need to get back to bed, but I thought of my friends in here and wanted to post an update for those of you who have been regularly checking in on me ( @ShiningLight, @Dejavu, @Idlehnds, @brassmonkey, @Len189 and others). 

 

I am now in week 3 of my grad school program and all things considered, things are going well. A year ago, and even 4 weeks ago in my last wave, I would have never thought this would be possible for me. Here are the things I am doing that I could not do one year ago: I am driving, I am cooking and taking care of myself, I am using screens, I am making friends, I am moving forward, etc.

 

I am now on 8.25 mg and plan to reduce 0.25 mg every 3 weeks or so. This is because I have found my 0.5 mg drops to be detectable so I want to go even slower. I will say that I still do dwell and fixate on this whole AD withdrawal issue in general because it was simply so devastating. My strong and overcome feelings about this are not going away anytime soon.

 

The brain truly does heal, but it takes time. The best “medicines” for me in this process have been the most fundamental and pure things in life: time, good nutrition, sunshine, plants/gardening, quality time with others, walking, and sleep. (Did I mention time?) There are no better medicines than this. 

 

A few thoughts and requests for your support: 

I know we are all conscious of disclosing more information about ourselves but I will say this: I am at a health sciences university where there are medical students, NP students, pharmacy students, etc. I feel uniquely situated to tell my story and educate those entering these professions about prescription drug dependence and withdrawal. But I am, as you can imagine, weak to my knees thinking about how I will develop the courage to do this. But I know I have a profound story to share, and one that must be heard by future professionals, and I have the smarts to share it in a biomedical way for them to understand. My family member MD who has fully supported me in my suffering says that these programs will often have patients give talks and share about what they have gone through, so it can definitely be set up. This family member tells me it will have a huge impact on these students to hear from me.

 

Please do pray and send supportive thoughts my way regarding this. I do have an idea about where to get started in finding the right people on my campus to get things going, but it’ll be an added load to coordinate and prepare for this atop my already rigorous courseload. But I feel it will be cathartic and healing to do this and to educate. I need strength, courage, more strength, and more courage to do this. Thank you and much love to you.

[ShiningLight]

Fantastic!!! So thtilled it's going well for you, C!!! 😃💖

[Erell]

Whaou Composter, this is a wonderful project!!! 😍

Take good care of yourself : the most important in this story is YOURSELF. Take the time To prépare this and you are going To say To be sure you respect your boundaries

 

courage To you!!!

[composter]

Thank you for the encouragement, @ShiningLight and @Erell!!

[composter]

When will the “mental health” system wake up to the inhumanity and pain caused by these drugs? Today I was driving around town getting some errands done and briefly listened to an NPR radio interview before I had to literally change the channel because they were talking about mental illness and suicide and the need for better funding and resources, etc but of course no mention of ADWD and the harm that comes from these drugs which literally drives people to suicide and violence. (SSRI Stories comes to mind.)

 

Those of us who have suffered through this, it’s a lot to ask for us to have to speak up and educate the general public about this, but I believe it must be done. Over the past year in which my eyes have been opened wide to all this, I’ve had the opportunity to have constructive conversations about ADWD with trusted friends, family, and even my pastor and a few strangers. I’ve also educated several medical professionals, including my primary NP and my original prescribing neurologist, about all this. These have all been huge wins and have taught me a lot about the power of forgiveness and the power of opening up to others. I’ve begun planting these seeds in my individual interactions and continue to pray for the strength and discernment to share to a broader audience.

 

I had a fantastic weekend filled with exploring gardens and fruit trees which is absolutely my favorite thing to do. I came home with bags full of pomegranates, guavas, and oranges. And I’m beginning to make some really solid friendships in my graduate program. I had a few nights of insomnia this past week but I think it’s all par with the course and I trust that I will continue to taper smoothly.

 

[composter]

Made the reduction to 8.0 mg this week after 3 weeks on 8.25 mg. Experiencing my usual uptick in sweating, head symptoms, sleep issues. If things continue as usual it will level out within the week.

 

Mostly posting on here to rant a tiny bit: I’m trying to arrange for some simple accommodations for school related to my WDnormal issues. My school set me up with an appointment with a psychologist per their protocol. In my visit I basically explained everything that I’ve gone through and provided lots of resources (scientific papers on withdrawal). I know she’s doing her best to understand and she probably mostly evaluates people for cognitive/learning disabilities or anxiety/depression. Still, it’s hard when my lived experience butts up against the “textbook” medical model for these things. She’s aware of withdrawal but had to confirm with me several times that I had zero history of anxiety or depression prior to this. As if that is a predictor of whether or not you will go through withdrawal. Nope. Perhaps there are genetic/metabolism predictors of these things but prior history or lack thereof is just not relevant. There are also several questionnaires I filled out that seem to be screeners for anxiety/depression but oddly enough do capture lots of symptoms experienced in withdrawal: sweating, heart pounding, restlessness, lack of appetite, derealization. I accept that some people with severe anxiety do go through these things, but gosh, are they ever so pronounced in an incapacitating way due to these drugs/withdrawal.

 

It’s hard to truly convey the magnitude of what happens to us. I have to remain grateful for the professionals that do their best to understand and wrap their heads around it. It’s just a taxing process having to do the educating—which is not limited to ADWD but can be true for so many chronic conditions that doctors/professionals just have little reference for. I feel a strong conviction to do more about this issue in the real world and with my studies. It has simply colored my world and how I perceive the whole arena of “mental health.” 

[Johni]

Hi @composter

How are you?  😊

[composter]

Hi @Johni thanks for checking in. I’m glad to report that I’m making good progress. The reduction from 8.25 to 8.0 mg is going smoothly, and I’m very pleased and proud that I’ve been able to handle my studies and activities in grad school quite well. I’m in the thick of exams currently but I’ve made time for fun and diversion with friends from time to time. I’ve also made some headway on my goals to educate and spread knowledge about ADWD while in school. 

 

I want to start giving back to this community too. Here are some goals so I have them in writing:

1. I developed a handout that I share with folks who I have entrusted with my ADWD story; it’s a handout of the best resources to educate oneself on proper tapering, with links to SA, MIA and books by Breggin and others. I’ll work on uploading this handout to the site for others to print and share. I’ve found it to be very useful to just print off or email to those I wish to share this information with.
2. I also have university access to journal articles so @Altostrata and others, let me know if you need me to access PDFs of any studies for you. 
3. I want to begin writing guides to reinstatement and stabilization, if the community feels it is needed. This would build on the work of @brassmonkey and others. I would recount my personal experience in the past year and provide frameworks/guidelines  for knowing you’re stable. I would also share suggestions of what to have in your personal toolkit of healing, simple aids/reminders that seem to be shared among those of us who have walked through the stability journey.
4. Finally, I will get to working on a mockup of bumper stickers, guerilla flyers, t-shirts/hats, that can serve as passive education tools in the public. (I have a thread on this and haven’t made much headway on it.)

 

This will be my give-back goals for the next 3-4 months. Will try to work on it sporadically as I balance schoolwork. Would love to hear feedback on any of these ideas, whether you think they’re useful or not; suggestions you may have.  (@ShiningLight and @Dejavu, I value your opinion and feedback as well!) Thanks!

[Altostrata]

Thanks to all the above, composter!

 

You might want to add to

 

Good to hear your taper is going well.

 

On 10/23/2019 at 8:42 PM, composter said:

There are also several questionnaires I filled out that seem to be screeners for anxiety/depression but oddly enough do capture lots of symptoms experienced in withdrawal: sweating, heart pounding, restlessness, lack of appetite, derealization. I accept that some people with severe anxiety do go through these things, but gosh, are they ever so pronounced in an incapacitating way due to these drugs/withdrawal.

 

This confound in these test instruments is indeed a major problem, it's obscured findings about withdrawal in many a clinical study.

 

I agree, the education process is tiring and frustrating but there is evidence it's making headway, at least in Europe. Those of us in the US have lots of work to do.

[ShiningLight]

So glad you're doing well Composter!!! 

 

I think your bumper sticker ideas and handouts are fantastic!

 

I second everything you said about the psychologist and accommodations. As I gear up for a few [mostly unwanted] medical appts, my worry and despair is palpable. 

[composter]

12 hours ago, Altostrata said:

This confound in these test instruments is indeed a major problem, it's obscured findings about withdrawal in many a clinical study.

 

I agree, the education process is tiring and frustrating but there is evidence it's making headway, at least in Europe. Those of us in the US have lots of work to do.

 

Thank you for weighing in about the screeners, that’s really interesting and also very sad that the confounded withdrawal symptoms are so embedded in. 

 

I’m really glad you are able to see a positive trend in Europe. I’ve printed out the Hengartner “The Tide is Finally Turning” paper to share with some folks and I truly hope the tide begins to turn. I’m hopeful to do what I can to push the education forward in the U.S., and of course much work to be done globally. Keep me in mind if there are projects or things you can see me doing to help!

 

10 hours ago, ShiningLight said:

So glad you're doing well Composter!!! 

 

I think your bumper sticker ideas and handouts are fantastic!

 

I second everything you said about the psychologist and accommodations. As I gear up for a few [mostly unwanted] medical appts, my worry and despair is palpable. 

 

Thank you, friend! Appreciate the support! Oh I empathize very much with you. Stay strong, and know that your story will be so crucial for these doctors to hear. Would it be helpful if I shared with you my 1-pager handout and PDFs of research studies? It’s good to come prepared with these kinds of things, so if there’s any pushback (and simply also to establish credibility) you can just hand them the evidence. Let me know and I can either email it to you or share via message (possibly?) on here,

[ShiningLight]

Yes I'd like to see it! Thanks. 

[Erell]

On 10/26/2019 at 8:07 PM, Altostrata said:

I agree, the education process is tiring and frustrating but there is evidence it's making headway, at least in Europe. Those of us in the US have lots of work to do.

Hi Altostrata and Composter !

 

Altostrata, I'm curious : what makes you say that the situation is différent in Europe ?

 

Have a lovely day both of you !

[composter]

Posting an update in an effort to keep my timeline recorded.

 

In December 2019 (about Dec. 20 - Jan 2) I went through an unexpected wave. Same pattern of severe insomnia/sleeplessness, fear spirals, crying, lack of appetite, nausea. This was a distressing time not only for me but my family because they are very close with me and it is difficult for them to watch me go through this. We did things at home and I felt the need to be with either my mom or sister for the entirety of a day. The sleeplessness and racing thoughts are probably some of the harder parts of the wave. 

 

Crossing my fingers this was my last wave. I did find that it cleared up my light sensitivity, and I was able to ditch my blue light blocking glasses in January 2020, which I felt would help in the evenings especially. 

 

I switched over to a liquid taper in April 2020 when I was at 6 mg. I went with the 25/75 then 50/50 then 75/25 crossover which worked pretty well. First few days I felt slightly hyperactive after taking the liquid dose but that leveled out. Liquid dosages have been pretty precise and I'm glad I'm now able to lower at my own pace and with smaller increments than just the 0.25 mg I was doing with compounded doses. 

 

This past week (June 21 or so) I accidentally took a much lower dose for 4 days. Reason why is I dissolved a 10 mg tablet rather than my usual 25 mg (which I was drawing up 5.8 mL in a 1 mg/mL solution). This resulted in an effective dose of about 2.3 mg for 4 days. I realized this mistake on the 5th day before taking my next dose and a few symptoms started to hit: feeling jittery, sweaty, and rapid heart rate. I decided to updose to 7.4 mg yesterday to hopefully balance out levels in my bloodstream, and will progressively return to 5.8 mL over then next few days. Had a nightmare last night which is also a sign of withdrawal for me.

 

Other than this things have been uneventful and smooth for me. The liquid taper is working well and I'm doing roughly 0.2 mg reductions every 3 weeks.

[ChessieCat]

5 hours ago, composter said:

This past week (June 21 or so) I accidentally took a much lower dose for 4 days. Reason why is I dissolved a 10 mg tablet rather than my usual 25 mg (which I was drawing up 5.8 mL in a 1 mg/mL solution). This resulted in an effective dose of about 2.3 mg for 4 days. I realized this mistake on the 5th day before taking my next dose and a few symptoms started to hit: feeling jittery, sweaty, and rapid heart rate. I decided to updose to 7.4 mg yesterday to hopefully balance out levels in my bloodstream, and will progressively return to 5.8 mL over then next few days. Had a nightmare last night which is also a sign of withdrawal for me.

 

@composter

 

Good to hear from you.

 

I've done a similar thing at least twice; one time it was 4 days before I realised.  I just returned to the dose that I was supposed to be taking.  My suggestion would be to return to the lower amount of 5.8mL from the next dose.

[Dejavu]

Composter, how are you feeling now? Did you return to 5.8 as Chessie suggested? I made the opposite mistake in March and updosed by 2.5% for about 5 days. When I realized my mistake, I returned immediately to the proper dose with no issues. Hope the same for you. Let us know!

[composter]

Thanks for checking in @ChessieCat and @Dejavu!

 

Yes after a few days my symptoms leveled out and I was back to the 5.8 mg. 
 

Currently I am at 5.4 mg and I’m finding with the water taper that I can tolerate reductions of 0.1 mg every 2 weeks with minimal or no symptoms. Hooray!

[composter]

Well I am currently down to 4.8 mg. Have had a very busy past 4 weeks or so with grad school research projects and presentations. 
 

Currently juggling quite a bit with school and outside commitments as well. 
 

I’m having a night of insomnia which I’m praying doesn’t last longer than one night. Sincerely hoping this isn’t the crest of a wave to come. 
 

Tapering is going smoothly with no real symptoms flaring up. 

[Dejavu]

@composter, how are you doing now? Did the night of insomnia turn out to be the start of a wave or just a one-off? Please let me know how you're doing whenever you can.

[composter]

On 2/7/2021 at 10:05 AM, Dejavu said:

@composter, how are you doing now? Did the night of insomnia turn out to be the start of a wave or just a one-off? Please let me know how you're doing whenever you can.

Hi @Dejavu! I am signing in today for the first time in 9 months it seems! The night of insomnia was just a one-off, thankfully. I’ve had no more waves to report and tapering has been slow and steady. I am continuing with the liquid taper and dissolve in a 1 mg/2 mL ratio so that I can more accurately take my lower doses. I am now at 3.85 mg. 
 

I am thankful to feel overall healthy and strong albeit busy and stressed over the past year with my final year of my Master’s program. I have been counseling people here and there on the Amitriptyline Facebook group. There is still so much work to be done to educate doctors and the public about antidepressant withdrawal. It has been heartening to see discussion enter more of the mainstream in the past year with Medicating Normal, Alto’s publications, and the like. 
 

I hope you have been hanging in there Dejavu! 

[composter]

Just updating my *crickets* thread to say that everything is going smoothly with my very long, very slow taper. 

 

As I've stated before I am doing reductions of 0.1 mg per month with no real side effects aside from 1-2 symptoms that have just never abated since my withdrawal and are just present with me in daily life (my ears are cold at all times so I wear ear coverings, and my head feels like there's a hole in it when I am sleep deprived). Since my last post in June 2021, I probably reduced from 3.8 -> 2.6 into 2022, and 2.6 -> 1.4 into 2023, and I am now at 1.1 mg. 

 

I'm happy to report no real other issues, folks. I am in a stressful education program (went from grad school to med school) and dealing with the frustrations of learning medicine and psychiatry as a dogma to be memorized, when I question so many things and of course feel very strongly that we need total reform in psychiatry and much better prescribing/deprescribing practices across the board. It can be re-traumatizing as you can imagine. I continue to want to really help to contribute to reform but struggle to find the time to work on this. I'll get there. And I'm thankful to Altostrata/Adele and Dr. Horowitz and Dr. Moncrieff and many others leading the way.

 

I also want to acknowledge and mourn the loss of my friend @ShiningLight. You will serve as a deep motivator and inspiration to bring light and better training/treatment for this wider issue. 

Edited August 30, 2023 by composter