ChickenSoup7: Quality of life has plummeted - hoping for advice

[ChickenSoup7]

Hello,

 

This is my first post on this forum after lurking for a couple years while tapering off of Zoloft, starting at age 20. I thought I had the taper under control for most of that time, but all the changes seem to have caught up with me. I am feeling skeptical that this is going to pass and that I will ever be able to get off of this medication. Anxiety, panic attacks, and physical disorientation and discomfort have kept me effectively homebound for a few months now, with no sign of cessation; it is discomfort far greater than I have ever experienced in my life. My sleep is often interrupted, and sometimes I am awake for up to 40 hours at a time due to physical stress. I cannot walk around my neighbourhood, let alone take the bus, go to the store, or participate in work or school; I can do very little physical activity at home, and have to be extremely cautious with my dietary choices. I am currently taking no supplements, but I am considering trying L-Theanine or Taurine, which I understand to be neuroprotective. Gabapentin seemingly helped me through medication changes in the past before, but I am skeptical of adding a new drug into the mix.

 

My doctor had been helpful with the taper, but suddenly changed her tune after I was finally honest about the problems I was having, and is now of the opinion that I need to be on this drug forever (her words), completely disregarding the fact that many of my symptoms are purely physical and could not be explained by my "original condition"  (as she maintains is the case.) Additionally, I have been adamant that going back on medication is not an option; Zoloft caused me to uncontrollably engage in extremely self-destructive and reckless behaviour (drinking by myself until passing out, sleeping with strangers using no protection, reckless driving); prior to taking medication, I was a quiet, introverted guy who liked gaming and fantasy literature, and had neither taken a sip of alcohol nor intended to. I also believe it is responsible for a sudden complete and unprecedented shift in sexuality (from heterosexuality to homosexuality) and strong gender dysphoria. I do not know which mechanism of the drug could have caused this, but there is no other suitable explanation, as these acquired traits have both completely subsided, directly synchronous with my taper. When I told my doctor that the medication had these effects on me, she prescribed me Seroquel (which I am, of course, not taking); despite my calm demeanour over the phone, she clearly thinks that I am delusional. I certainly learned my lesson through this, and will no longer say any more than is necessary to avoid seeming belligerent. Out of all the people in my life, only my mother and my girlfriend believe me that Zoloft caused me to have this dramatic personality shift that endangered my life, and they are both very supportive of me in general. My father, who is currently financially supporting me, albeit reluctantly, is of the same mind as my doctor; he believes that I have a genetic defect and must be medicated permanently. Overall, however, he has been surprisingly tolerant, and I have a safe place to live where my needs are being taken care of.

 

I have undergone thorough medical examination, and have been determined to be in good physical health, aside from a recent POTS diagnosis that I believe is a result of my taper and is causing many of my symptoms.

 

To sum everything up: I am trapped in a world of discomfort, and have no idea what my next steps should be. Any help at all is appreciated. I am only a young guy, and the future is not looking bright right now. I am really scared that I have damaged my body and brain beyond repair both by taking the medication for so long at such a high dose and in tapering improperly. Having said that, I am feeling much more like myself, and I know that I am on the right track.

 

P.S. I apologize if any part of my post violates content guidelines. I was aiming for as much clarity as possible but any offending parts can certainly be removed.

Edited January 9 by Emonda
Name change to title as requested

[LotusRising]

Hi @henrym01

 

Welcome to SA,

 

I'm sorry to hear you've been struggling. Unfortunately, your story is not uncommon, in that others have been told they to, need to stay on medication indefinitely. Personally, I do not believe this to be true, nor is there evidence to support this.

 

We are a peer-run volunteer site dedicated to a harm reduction tapering approach in an effort to minimize withdrawal symptoms. We suggest tapering by no more than 10% of your most recent dose each month. See  Why taper by 10%.

 

Could you help us out by adding a signature, which will ensure your drug history appears at the bottom of every post, making it more efficient for those trying to assist. 

 

How to Create a Signature 

 

These two links will help you to understand withdrawal syndrome:

 

What is Withdrawal Syndrome?

 

Video on Recovery from Psych Drugs

 

When we take medication, the CNS responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS must then undo all the changes that were made. As the changes are undone, symptoms may occur. You can expect that they will follow 

The Windows and Waves Pattern of Stabilization  and since the CNS likes stability, we suggest to Keep it simple, slow and stable.

 

POTS symptoms (dysautonomia) is very common when tapering psych drugs. I developed POTs symptoms very early in my journey and it has slowly gotten better with time.

 

 

Here is info for your specific drug:

 

 

Please feel free to post any updates or questions related to your specific situation right here in your thread. It's helpful to keep everything related to your tapering journey in one spot, helps to keep the site tidy and makes it easier for us to assist.

 

Again, welcome to SA  

[ChickenSoup7]

Hello @LotusRising,

Thank you for taking the time to write up such a comprehensive response, it means a lot to me. I actually had a pretty good day today. I think simply posting to this forum represented a step forward. That and the fact that I tried some basic yoga for the first time have caused me to feel truly good for the first time in a while. I will spend the next couple days looking over the links you have provided, and will provide updates in this thread as my recovery continues. I will definitely add a signature; I have a complex background with medication, as I am sure is the rule rather than th exception here.

 

By the way, I decided to change my username to have more anonymity, my original choice was a bit of an oversight on my part. Is it possible for my previous username to be removed from this thread? Thank you.

[Emonda]

Hi @ChickenSoup7,

 

The reference to the previous name has now been removed from the title.

 

Have I missed it anywhere else in your post?

 

Welcome, and please remember your signature.

 

Emonda

[LotusRising]

7 hours ago, ChickenSoup7 said:

I actually had a pretty good day today. I think simply posting to this forum represented a step forward. That and the fact that I tried some basic yoga for the first time have caused me to feel truly good for the first time in a while.

This is great to hear  

[LostInCanada]

On 1/8/2024 at 12:05 AM, ChickenSoup7 said:

Zoloft caused me to uncontrollably engage in extremely self-destructive and reckless behaviour (drinking by myself until passing out, sleeping with strangers using no protection, reckless driving);

Welcome to SA. You aren't alone for sure. I have read of others developing alcohol issues. Apparently it is how the drugs affect the liver and metabolism if I remember correctly. Other experiences on here and in my own family have dealt with risky sexual behaviour, cheating on mates, etc. One family member stayed she felt like she was in a dream just going through the motions and it wasn't real. When we are drugged to be numb our natural barriers seem to disappear. It's good you recognize this and can guard against it.

On 1/8/2024 at 12:05 AM, ChickenSoup7 said:

I certainly learned my lesson through this, and will no longer say any more than is necessary

This is wise. Even though my doctor seems supportive, I learned yesterday he was pushing SSRIs on my daughter for migraines. It is unfortunate we can't rely on them for help but we have each other here.

On 1/8/2024 at 12:05 AM, ChickenSoup7 said:

am really scared that I have damaged my body and brain beyond repair

Our bodies are amazing and resilient.💯 Getting that drug signature will help. The last 2 years are most important. You can always add more details after that. 

[ChickenSoup7]

Hello @Emonda and @LostInCanada,

 

Thank you both for the warm welcome. It is very reassuring to see that both you and @LotusRising have had success with tapering after taking medication for as long as I have or longer. I have just added a signature, hopefully that will make my situation more clear.

 

5 hours ago, Emonda said:

The reference to the previous name has now been removed from the title.

 

Have I missed it anywhere else in your post?

 

Emonda, I think that was the only place where it appeared. Thank you for changing it.

 

1 hour ago, LostInCanada said:

I have read of others developing alcohol issues. Apparently it is how the drugs affect the liver and metabolism if I remember correctly. Other experiences on here and in my own family have dealt with risky sexual behaviour, cheating on mates, etc. One family member stayed she felt like she was in a dream just going through the motions and it wasn't real. When we are drugged to be numb our natural barriers seem to disappear. It's good you recognize this and can guard against it.

 

This makes a lot of sense, I am glad to hear I am not alone in this. I have known a couple of people in my personal life, too, who have described the experience of utterly losing their sense of inhibition. The dream feeling is spot on. Just yesterday I was telling somebody that tapering off of Zoloft feels like gradually waking up from a bad dream, slowly becoming more and more horrified by the sort of person I became for years of my life. I know that I shouldn't, because I was not in my right mind, nor did I even go on medication by my own choice, but I feel completely humiliated by my behaviour during that time.

 

1 hour ago, LostInCanada said:

This is wise. Even though my doctor seems supportive, I learned yesterday he was pushing SSRIs on my daughter for migraines. It is unfortunate we can't rely on them for help but we have each other here.

 

It really is unfortunate, I have practically lost my faith in the medical industry altogether. Everything seemed so official and aboveboard when I first started taking Zoloft, I wasn't even out of high school and had never heard of any drugs having adverse reactions. I assumed it was just like taking an Advil, just follow the instructions on the box and you will achieve a desired result with rare side effects. I was in a lot of discomfort, and my parents didn't know what else to do for me, so I decided to trust them and the doctor and go along with the plan. But they didn't know anything about what the medication was capable of, and the doctor either didn't know or didn't care; she neglected to even inform my family of the FDA black box warning, which should be the first order of business, especially when prescribing to an adolescent.

 

I have hope, though. Sometimes I lose it for a little bit, but I have some really good days, and I do not truly believe it is all downhill from here. I am so close to getting off of this horrible medication, down to less than 10% of my original dose and at a sub-clinical dose (this also is reassuring, that taking the medication at this dose is likely not causing much further damage). I have been through a lot already and have been more resilient than I often think.

[LostInCanada]

@ChickenSoup7 how have you been? Looks like a nice long hold will help your body stabilize. Once your symptoms have settled down you might want to consider the brass monkey slide method. It is just a bit easier on the CNS. At present I am doing microtapers. I think they are about 0.05 mg drops. Just remember it is not a race. You have come very far . Well done. Mitigating WD with a slower taper will make you more successful in the long run.  Also taking a break at various milestones helps as well...like 10 mg, 5 mg etc. 

You are doing great 

[ChickenSoup7]

Hi @LostInCanada,

 

I have been doing alright, all things considered. Thank you for asking, and thank you for the kind words and encouragement. It is easy for me to forget how far I have already come. I am so exhausted from dealing with medication issues for so long now, at a time of my life when I am supposed to be exploring as many different opportunities as possible. Instead, my life has been brought to a complete halt. It has taken a great deal of willpower to not drop the medication at once in frustration, even though I know that would only make the after-effects worse.

 

As far as current withdrawal effects, I decided (maybe foolishly) that I was stable enough to continue about a week ago and dropped to 16.5mg from 17mg. I think I may be feeling the change at this point though, 0.5mg at once is probably too much. I was steadily improving but now have had a couple bad waves, which fortunately only lasted a couple hours each. These waves are of intense anxiety accompanied by a feeling of physical numbness in my brain and body, clicking teeth and twitching throughout my body (especially my eyes and legs if laying down), overheating,  feeling as though it is difficult to swallow, and I am sure there are other things that I am forgetting. I tried taking 100mg of L-Theanine to see if it might help mitigate these symptoms, but instead it paradoxically caused me to feel very agitated for a few hours and unable to sit still or relax. This is very odd, considering that I used to take it at much higher doses for a long time to great effect. It is really hard to say at this point what symptoms are withdrawal symptoms and what symptoms are a natural reaction to the trauma caused by taking Zoloft for so long and to the effects it had on my life; therefore, it is hard to know if I am going to be able to feel truly stable in the near future. My development of POTS is almost certainly from tapering too fast, but I feel very nervous thinking about waiting for it to resolve before I continue. Ultimately, I am really wondering how stable is stable enough?

 

I think the brassmonkey slide method would work well for me, especially given the short half life of Zoloft. A tentative plan that I have been considering for the past couple days is to reduce by 0.2mg every three days, resulting in a total reduction of 2mg per month. Another post by brassmonkey advised that 2.5% of the original medication dose is usually a safe point to drop it altogether; in my case that would mean reducing my dose to around 5mg and then dropping Zoloft altogether. At a rate of 2mg per month, assuming that I am able to tolerate it well, this could allow me to be medication-free in under a year. This might be a bit of a reckless plan, though. I am really not sure.

[LostInCanada]

@ChickenSoup7 

I need to tell you to put on the brakes. You are going way to fast. Please wait till these symptoms resolves before any more drops. It may takes a couple months or more. Your CNS has become destabilized and believe me it can get much worse if you don't give your body a decent break. 

10 hours ago, ChickenSoup7 said:

I tried taking 100mg of L-Theanine to see if it might help mitigate these symptoms, but instead it paradoxically caused me to feel very agitated

This is very common. Once in withdrawal are bodies do not react the same as previously. It is not a logical process and we have to remember that. Are you able to take magnesium bisglycinate or Omega 3? I can't remember if you mentioned that previously.

10 hours ago, ChickenSoup7 said:

I have been considering for the past couple days is to reduce by 0.2mg every three days, resulting in a total reduction of 2mg per month.

This is too fast. 2 mg is more than the recommended 10% and in the lower doses the taper usually has to become less than 10%. (Maybe a total of 5% would be worth exploring) It is the smaller doses that are more problematic. Our bodies have become dependent and the final weaning is much harder.

10 hours ago, ChickenSoup7 said:

Another post by brassmonkey advised that 2.5% of the original medication dose is usually a safe point to drop

It has been shown that is not always correct. Since then more research has proved we have to go even lower. For example jump off for me with an original dose of 20 mg is 0.016 mg. 

Your moderator can help you to know a safe jump off dose for Zoloft @LotusRising

 

Please just put the taper on the back burner and reassess in a couple months. That will prepare you for the final phase of the taper and set you up for success. 💯👍

[ChickenSoup7]

Hi @LostInCanada,

 

You’re right, I should be more cautious. I have been through enough already. I will hold for a month or two to stabilize. Do you think it is a better idea to reinstate my previous dose of 17mg, or to continue at 16.5mg now that I have decreased to that level?

 

I have some magnesium bisglycinate on hand, I will try taking some today. I have a Taurine supplement that I have not tried yet, but based on my reaction to the L-Theanine I am skeptical that it will help. Nonetheless, I will probably try it for a day once I have taken some time to see if the magnesium is working well, and worst case I will have one bad day.

[mstimc]

Hi @ChickenSoup7.  I just want to add some reassurance and help you explore some non-medication ways to help you manage your thoughts and feelings. I had many of the same symptoms as you, as well as severe health anxiety and feelings of extreme guilt (for just about everything).  I can assure you no matter how bad your think things are and regardless of what your anxious mind is telling you, it will get better.  My WD and recovery took about three years but it was worth the effort for myself and my family.   Its more like a rollercoaster, with hills and valleys (waves and windows), than a nice steady climb to recovery.  While I was going through withdrawal, I found a great therapist who helped me adopt some very good coping strategies and ways to manage my negative thinking.

 

I've come to view anxiety, OCD, and depression as chronic conditions like diabetes.  They may never go away completely but we can live normal and joyous lives if we learn acceptance that the thoughts will come--its the way we react to them that's important.  I still occasional anxious thoughts and invasive OCD ruminations, but through coping strategies like CBT and ERP, and practices like reality checking and intentional catastrophizing, I can manage them and make them fade away very quickly.  You will get there too.

 

Are you trying any therapy practices now?

[LostInCanada]

56 minutes ago, ChickenSoup7 said:

Do you think it is a better idea to reinstate my previous dose of 17mg,

I think it is up to you and how bad it is. If you decide to updose I would try 16.8 mg. But stability is the key. Always listen to your body. 

59 minutes ago, ChickenSoup7 said:

Taurine supplement that I have not tried yet,

I'd leave that alone for now. Just let your body settle...if it worked well it would be recommended on here and it isn't. It will get better. 👍

[ChickenSoup7]

Hi @mstimc,

 

Thank you for the thoughtful advice; although it is sad to hear that you have had a similar experience to me, it is also quite reassuring. I actually just began online counselling that I will hopefully be able to attend in-person soon. It is too soon to be able to say definitively whether it is helping me, but I feel positively about it. I have had OCD and anxiety for so long now (which the medication hardly scratched the surface of) that I cannot even imagine what it would feel like to live without the two. In a weird way, I have come to appreciate them for what they are and how they have somewhat shaped me for the better by keeping me from remaining in situations that were profoundly intolerable for me on a deep level. Having said that, I know what it feels like to be anxiety free from taking Klonopin and Ativan, and I was stunned upon realizing that many people feel like that all the time. I would love to attain that same feeling in a more wholesome and natural way (minus the cognitive impairment, of course). Though anxiety and OCD are problems that I feel comfortable gradually working on and improving, my panic attacks must be addressed as soon as possible. I don't know many other people who suffer from them, so I cannot say for certain, but it certainly feels like the attacks I suffer are at the upper end of severity. The last time I had a full panic attack (a couple months back), it took two off-duty firefighters who happened to be there almost a full hour just to get me up off of the floor of a Whole Foods; not coincidentally, this was the last time I went in a store. This is not sustainable at all, so I really hope counselling will help me to get my panic under control.

[ChickenSoup7]

Thank you for the fast reply @LostInCanada, I appreciate it. I think I will feel it out today and see if it will be possible for me to ride out the WD effects of the most recent decrease comfortably enough, and then after it settles down a bit I will take a nice long break of a couple months or so. I will leave the Taurine alone, especially in light of my L-Theanine experience, and see if the magnesium can help me out.

[mstimc]

8 minutes ago, ChickenSoup7 said:

The last time I had a full panic attack (a couple months back), it took two off-duty firefighters who happened to be there almost a full hour just to get me up off of the floor of a Whole Foods; not coincidentally, this was the last time I went in a store.

Hi

This is the kind of power anxiety and panic want over your life. Anxiety can only survive if it controls as much of your life as possible.  Each time you retreat from a situation, anxiety gains a little more ground in your mind--I call it narrowing your life.  A lot of people try to deal with anxiety by withdrawing: staying home, staying in your room, etc.  But isolation is the worst thing for anxiety because it gives your mind nothing to do but ruminate. That's why distraction is such a powerful tool to manage anxiety, OCD and panic. If the thoughts can't control your actions, they lose power over you.  

[LotusRising]

16 hours ago, ChickenSoup7 said:

Another post by brassmonkey advised that 2.5% of the original medication dose is usually a safe point to drop it altogether; in my case that would mean reducing my dose to around 5mg and then dropping Zoloft altogether. At a rate of 2mg per month, assuming that I am able to tolerate it well, this could allow me to be medication-free in under a year.

I would try not to be tied to a specific timeframe. While brassmonkey advises 2.5% of the original medication dose is often a safe jumping off point, he also mentions that this isn't universal for everyone and perhaps the best course of action is to go as low as possible. But this will be largely dependent on how your body has responded to each reduction "With the caveat that if people are still feeling withdrawal every time they reduce, approaching that point they may need to taper further, and by smaller amounts."

 

4 hours ago, ChickenSoup7 said:

I think I will feel it out today and see if it will be possible for me to ride out the WD effects of the most recent decrease comfortably enough, and then after it settles down a bit I will take a nice long break of a couple months or so

This sounds like a great idea  

[LostInCanada]

5 hours ago, ChickenSoup7 said:

just began online counselling

I am in Victoria BC. Wondering if that is available here? Do you have a psychiatrist or just family doctor?

[LostInCanada]

@ChickenSoup7 how have you been doing? Are things settling down?

[ChickenSoup7]

Hello @LostInCanada,

 

I'm sorry for disappearing for a bit, I have been having a pretty rough time. On a positive note, everyone in my immediate family now fully understands how serious my situation is and have been very helpful. In answer to your previous question (apologies, I didn't see the notification), I have been doing private counselling that is largely being covered by insurance. Unfortunately, I have not stabilized yet and am still effectively homebound and unable to work due to panic attacks and POTS type symptoms. I feel overwhelmed by even basic tasks on a daily basis, and would not be able to take care of myself. I continue to worry about if a full recovery is possible for me, and how long even a partial recovery might take. I had a short period of feeling not too bad and was able to both walk 15 minutes and shop at a nearby store and ride a metro bus for about 20 minutes, but felt very overwhelmed both times and haven't attempted anything like that since. I finally went to the walk-in psych intake in my city and told them my whole story and they booked me for an appointment with a free psychiatrist in a few months, assuring me that based on what I described to them I will not be encouraged to take SSRI or SNRI class drugs again. Honestly, it was actually very uplifting to finally have a medical professional take my situation seriously. They also recommended I begin going through the process of applying for long term disability, which I have begun.

 

I have only had two full on panic attacks since I last posted: one was due to sensory overload from travelling a very long way by car coupled with discomfort from being out of the house, and the other was from dealing with my primary care practitioner and happened in a medical office. Her and I are now on awful terms after that appointment; it was evident that she thought I was being combative simply due to my insistence against going back on Zoloft (I was speaking very calmly despite the attack and my anger), and she said that the episode I was having had her extremely concerned. She said that if I am not going to listen to her, then she wants to pass me off to an intensive outreach mental health program, but I'm not really sure whether that is in the works or not. She doesn't believe me that I was doing poorly while taking Zoloft, because I was able to hold a handful of jobs for a few months at a time and wouldn't say anything during our appointments besides that I was doing fine. Remarkably, even a history of frequent emergency room visits during that time due to my behavioural problems isn't enough for her to realize that I may be telling the truth. She positively refused to fill out a disability application form for me if I wasn't taking medication because I was "so much more functional" while taking it. I am attempting to find a new PCP and cut ties with her, because the last thing I need right now is to be gaslighted. The whole thing is making me so angry, absolutely livid at the system that has caused this to happen to me and the ignorant people who hold it together. I feel like I was robbed of what has now amounted to over a quarter of my life and counting.

 

I appreciate you messaging to check on me, I was meaning to post an update soon. I hope you are doing well.

[LostInCanada]

So happy to hear from you @ChickenSoup7

12 hours ago, ChickenSoup7 said:

everyone in my immediate family now fully understands how serious my situation is and have been very helpful. 

This is fantastic.

12 hours ago, ChickenSoup7 said:

going through the process of applying for long term disability, which I have begun

Good for you. Stick with it. I had to do it and trust me it can be an overwhelming process. My claim initially was rejected because the questions are really geared toward physical disabilities. I had to appeal and I won. Please private message me if you need any help with that.

12 hours ago, ChickenSoup7 said:

Her and I are now on awful terms after that appointment

It sounds like you did amazing. Staying calm and firm is the best. Do you still have access to a prescription? If not can you do a walk in clinic or find a new GP or nurse practitioner?

12 hours ago, ChickenSoup7 said:

went to the walk-in psych intake in my city and told them my whole story and they booked me for an appointment with a free psychiatrist in a few months, assuring me that based on what I described to them I will not be encouraged to take SSRI or SNRI class drugs again.

The intake staff are usually really amazing. I hope the psychiatrist feels the same way. I had a similar experience and the psychiatrist caused the mess I am in. At least you are forearmed. 👍

There is a deprescribing site in Canada called medstoppers.com . It is not perfect but shows how symptoms result not as a relapse but because of too fast a taper.

 

Mark Horowitz has also put out a new Maudsley Guide for deprescribing. 

Your experiences are so typical of too fast of a taper. Holding will help you heal. 

I read something that I feel is very important:

You cannot heal and fight/be angry at the same time. You need to put all your energy into healing at this time. It's great to have a rant once in awhile (I sure do) but really try to put your focus into healing. Be positive, be kind to yourself, be accepting of yourself and your limitations. 

You are going to be okay. We all are. I am doing well -had a couple waves recently back to back but looking forward. Thanks for asking. 

We are here for you.