mugatu: introducing myself

[mugatu]

Hi there. I just found this site about 1/2 hour ago.

I was searching online for help with PSSD.

I am not currently taking antidepressants. I am taking clonazepam as needed for anxiety, but I may or may not go back on some form of antidepressant.

 

Why am I here?

I've taken antidepressants for roughly 15 years. The majority of that time was on Zoloft, or Zoloft + Wellbutrin, but I've tried in total:

• Zoloft
• Wellbutrin SR
• Wellbutrin XR
• Cipralex
• Effexor
• Abilify
• Xanax
• Buspar
• Clonazepam

 

When I first started antidepressants I noticed I could last as long as I wanted to when having sex. However, as time wore on, that benefit went away, and more and more I noticed it was harder to get and keep erections, and my libido was less and less present. I also noticed my emotional responses fading. For example, I could watch a YouTube video about some horrible tragedy, and have a rational reaction of "that's awful", but not actually feel it viscerally.

 

I came to realize that while antidepressants were blunting my anxiety and depression, they were also blunting these other aspects of my humanity, since they work from overlapping neural pathways.

Once I noticed this, I decided I needed to take my treatment with antidepressants into my own hands. It felt like my doctors were asleep at the wheel.

 

Also, at an earlier point in this journey, I had a psychiatrist who did not convey his prescription properly - whereby I ended up taking far more Wellbutrin than I should have. This caused me to develop irritable bowel syndrome - a condition that has not resolved since.

 

While I am thankful for the way antidepressants helped me initially, I now feel a little bit stuck with some physical/emotional/hormonal problems that I don't feel I have adequate help to resolve.

I feel very much on my own, and as if, in order to make any progress, I need to try herbal remedies and armchair science since that's all that's available to me.

 

Basically, I am looking for help wherever I can get it, trying to get back to the person I was pre-antidepressants.

I sincerely hope that is possible.

 

EDIT: I am also wondering how to find a psychiatrist, or other doctor that is PSSD friendly; a doctor who acknowledges PSSD as a legitimate issue/concern and is conversant in the latest scientific approaches to treating it.

I have a hunch that a lot of psychs have an arsenal of medications that they work with regularly, and they're uncomfortable prescribing anything outside of that arsenal. In short, they stick to what they know, and once they're well into their careers they don't tend to explore new territory. That's problematic when PSSD is not an officially recognized medical condition in some circles.

Edited December 2, 2020 by Gridley
Wanted to add more about what I am looking for. Also, formatting.

[Gridley]

Welcome to SA, mugatu.

 

To give members the best information, we ask them to summarize their medication history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly.

 

Account Settings – Create or Edit a signature.

 

We're a site for helping people taper off psychiatric drugs and to deal with withdrawal.  Our specific focus isn't on PSSD except insofar as it is one of many withdrawal symptoms resulting from psychiatric drugs.  It has been our experience that the only cure for withdrawal syndrome symptoms, including PSSD, is time.   You can read about the experiences of some of our members with PSSD by using a search engine + SurvivingAntidepressants.org PSSD.

We don't have a list of PSSD-conversant doctors per se. You can take a look at the following link and see if some of the more recent listings might be helpful.

 

Recommended doctors, therapists, and clinics - Page 7 ...

 

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. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems. Get supplements that are single ingredient (not mixed with other types of supplements).

 

This is your Introduction topic, where you can complete your drug signature, questions and connect with other members.  We're glad you found your way here.

Edited December 2, 2020 by Gridley

[mugatu]

Here's an update. Which is also a request for support or any feedback.

I've stopped all psychiatric meds. I've now been med free for a little over a month.

My taper was "fast" relative to the standards I've seen in this forum, but was aligned with more traditional tapering protocols.

I did not have the support of a doctor.

 

After tapering off the medication and being off for a few weeks, I decided to talk to my family doctor.

I did so because I was very concerned with "failing" at being off the meds, and I was also wondering if I should have done a slower taper, or if I should reintroduce a much reduced amount of the drug (Zoloft), tapering even more slowly.

My doc seemed to think that doing that would be a step backwards, and that I should not be experiencing any more withdrawal.

To me, he did not seem particularly helpful or knowledgeable.

 

I would say I'm still experiencing withdrawal in the form of muscle cramping, and a feeling of "light-headedness" that sometimes swims throughout the body. Also I'm noticing occasionally that my balance feels somewhat off - mainly first thing in the morning or in the middle of the night in the dark.

What I really don't know, is how much of the psychological experience I'm having right now is me in a withdrawal state and/or still adapting vs. me as a person off of drugs.

 

On a psychological front, I'm experiencing what I'd call heightened stress and anxiety, relative to being on drugs. 

I really really hope this will pass, as right now I wake up, particularly on work days, feeling psychological pain, and I feel that way throughout the day. I feel sort of suffocated by my own anxiety. I am gritting my teeth and bearing it in the hopes that it will get better, but a part of me also wants it to all just go away - that's what the drugs did for me when I was on a therapeutic dose, but they also impacted my libido, my sexual functioning, and my ability to feel emotions/attachment, making me feel like an incomplete person. That's why I've come off the drugs, and that's why I want to stay off.

 

So I am hoping to stay the course. I think I was able to get this far by really learning a lot about anxiety, and finding an arsenal of cognitive/behavioral strategies that are at somewhat helpful to me for addressing anxiety and rumination. However, I feel kind of like I'm going to war with my own nervous system every day. I am fighting for something I believe in, but the fight entails daily pain, and I wonder if/when it will ever be over, or if I will get to a point where most days I can win that fight with little pain/effort - I think that's where I'd like to get to.

 

I guess I'm just kind of disoriented right now. Thinking "where am I in this journey?" and how do I interpret my thoughts and feelings now to figure out what I should do.

 

I'm also wondering if I've messed myself up somehow. I read something in the "10% taper" post saying "if you get prolonged withdrawal syndrome, you will have to cope with it until it goes away". I don't know how long that will be and it's scary. Also, if I think about when, and how the meds I've taken have really hammered me with negative and lasting side effects, it seems this has always happened when I've switched medications, or lowered doses. For the first several years of using zoloft, where I was mostly just increasing or maintaining my dose, or having small fluctuations, I didn't notice much in the way of impacts to sexual function or libido. I think that stuff emerged/got worse each time I made a substantial change or reduction - each time like hammering a nail further in... How can I pull that nail back out?

[LotusRising]

Hi @mugatu

 

Could you tell us a little more about your taper:

 

You finished Jan 1 2024, but when did you start?

 

What was the taper rate, how did you feel while tapering?

 

 

[mugatu]

Looking back on some records, I can see I was at 75mg Zoloft near the end of October.

I would have dropped down in 25mg increments (smallest available pills) through November and December, getting to zero around the beginning of January (I know that's way faster than is recommended on here).

None of this was problematic for me. If I recall correctly, going from 50 to 25 was a challenging decrease, but I managed it well, being able to employ a well-developed arsenal of cognitive and behavioural coping techniques to remain level headed and productive. Going from 25 to zero was also well managed, until maybe the past couple weeks - where now I find it difficult to muster the clarity of thought, and stillness to use my strategies. Right now it feels like living in a house where the smoke alarm (anxiety) never shuts off.

[mugatu]

Further update:

I went to see my doctor today.

I spoke to him about being in withdrawal, and about reinstating a liquid formulation of Zoloft at a lower dose.

He maintained that I should not be experiencing any withdrawal at this time, and that I probably just genetically have lower levels of serotonin, increasing my propensity for anxiety. He pointed to various stressors in my life.

The solution he offered was going on Trintellix at a low dose. I'd tried Trintellix previously and don't recall it being particularly effective for anxiety. It also caused stomach cramping and diarrhea. He prescribed a proton pump inhibitor.

I'm really doubtful about his recommendation, and I'm thinking about making my own suspension of Zoloft. Having been off Zoloft for a month, some of the stuff I've read in these forums suggests if I reinstate, I reinstate at an extremely low dose - not exactly sure what's appropriate though.

 

One previous time I went off Zoloft, my psychiatrist (different doctor) told me I could go back on at 50mg, since I was not naïve to the drug. I followed his advice and became jittery and  physically unable to sleep for 3 days straight - despite extreme weakness and tiredness.

 

Right now I'm kind of weighing retrying the Trintellix (which seems a really ill-informed recommendation on the part of my doctor), making my own suspension of Zoloft, and just continuing to ride out this feeling. As for continuing to ride it out, it's hard. If I think I will have to endure this for a week more, it feels doable. Two weeks is questionable. That's also if this is as bad as it gets. If it gets worse, it feels like all bets are off.

[Onmyway]

@mugatu

Going on trintellix to treat zoloft withdrawal is a bad idea. Reinstate the original drug. 

 

You were here in 2020 and had all the information at your fingertips yet decided to ignore it. Are we wasting our time advising you so you can do whatever you want ignoring it again? 

 

Please add detail to your signature as requested by @LotusRising. We also need your longer term drug history. 

Edited February 17 by Onmyway

[mugatu]

@Onmyway

Quote

"You were here in 2020 and had all the information at your fingertips yet decided to ignore it. Are we wasting our time advising you so you can do whatever you want ignoring it again?"

 

I did not ignore what I'd read in 2020, you are not wasting your time advising me, and I would not ignore any advice received now. I value the advice to not go on Trintellix, and I feel quite firmly (based on my own investigations, what I've read elsewhere on this forum, and now your advice) that I will not do that.

 

In 2020:

• I did not have the level of insight into my anxiety that I do now.
• I did not have the cognitive and behavioural strategies for managing it that I do now.
• I did not have the same understanding of SSRIs, benzos, and withdrawal that I do now. And,
• I did not have the same opinion of the prescribers I've dealt with (GP and psychiatrist) that I do now.

I had the longer term drug history in my signature previously. I edited it for length, and because I didn't think older history was relevant anymore.

I've just found the signature guide (which I forgot existed), and I will try to take some time to re-summarize my drug history soon.

 

Thank you very much for your advice. I really do appreciate it.

[mugatu]

I've added back what I can right now to my signature.

It's not as complete as my old one, which took a lot of time and effort to compile - time I no longer have in the short term, due to personal life circumstances.

 

@Onmyway, your latest advice has been to reinstate the original drug.

Are there specific health/damage reduction reasons for doing that, or would it be something to do only if I find I cannot tolerate the withdrawal symptoms I'm experiencing presently?

 

In other words, if I feel as though my condition is now improving (which it may be) is there any reason to reinstate the original drug, or is it a sound move to remain off the drug?

 

I've been off now for about a month and a half. First noticeable symptoms were unusual muscle cramping in the chest and legs, a feeling of light-headedness/light-bodiedness that sort of "swims" throughout the body.

Muscle cramping is now gone, "swimmy" feeling has persisted, and more recently I've had feelings of extreme anxiety and shakiness that have persisted for all my waking hours. This last symptom - the most troubling one, may be abating now, but it's difficult to tell as I'm not presently under stress (it's a long weekend).

 

I guess I'm now just trying to understand what is the most neuroprotective, and/or least risky option to pursue - ride it out or reinstate, and if I reinstate, how much to start with - 5% of the dose I stopped at (25mg) or some other figure.

[Onmyway]

Have a look at this thread. You might also want to check out the thread on kindling pinned in the symptoms and self care forum. Hope it answers the questions you have 

 

[mugatu]

Thanks @Onmyway. I reviewed the thread you posted.

 

Also, I went again to see my doctor after reviewing my notes from the last time I tried trintellix.

I told him that I would not be taking trintellix because the last time I trialed it, for 2.5 months it did nothing for my anxiety and caused a host of other intolerable side effects.

He then belligerently asked me what I would like to do. I told him I would like to go on a lower dose of zoloft in a liquid formulation, with the aim of stabilizing, then gradually reducing the drug.

 

I told him I had concerns about a kindling reaction, and would like to try starting on a really low dose. He told me kindling was "nonsense", that I was "doctoring myself", that if I wanted to do that I should "probably find another doctor", and that starting at an extremely low dose I "might as well be taking a placebo". In short he was belligerent, dismissive, and belittling, and I almost got "fired" as a patient. However, in the end I was able to get him to prescribe a liquid formulation at half the strength of the smallest available capsule - but it needs to be made at a compounding pharmacy, so it'll be out of pocket, and won't be ready for another couple of days.

 

In the meantime, out of desperation, I made a 2:1 solution out of zoloft and water and have been taking 2mls (1mg zoloft) for a couple days. Not 100% sure if this low dose is helping, but I do have some direct evidence to support it.

I wanted to share all this as an update. I also wanted to say the following:

 

It feels like a really lonely place to be... To be taught from a young age to trust medical professionals, and then (multiple times) have medical professionals prescribe things that cause harm... To lose that trust, and then begin to trust anonymous people on the internet - something that society tells us we should never do. It's a very vulnerable, confusing, and conflicted place to be. Take from that what you will.

 

I will continue to post updates on here - I think it's a nice way to keep a permanent record, and to contribute to growing anecdotal evidence of the success/failure of certain approaches to addressing withdrawal.

In other news, I've found our there are a number of people that have complained about my family doctor to the College of Physicians and Surgeons of Ontario, for similar treatment. I may eventually do the same. I think ever since my first visit with him I've been treated rudely and dismissively, and as "less than", whereas I think anyone in the sacred/important position of assisting others with their health and well being concerns must strive to be respectful, to fully discuss their patients' concerns, and to answer their questions, or provide them with resources that can do the same.

 

It's been quite a journey. I know it's not over yet, but I'm hoping I'm at the start of a better chapter.

 

EDIT: Also @Onmyway, I saw elsewhere that you'd suggested "beware alcohol" and "beware pot". Is this more geared towards people who binge drink, and heave cannabis users? I'm drinking a beer right now and may have (at maximum) 1-2 beers per week, and may vaporize cannabis (at maximum) 1-2x per week, obtaining only a light stone. In other words, usage is occasional and could be described as "mild".

Edited February 25 by mugatu
Additional info/questions.

[Erimus]

9 hours ago, mugatu said:

EDIT: Also @Onmyway, I saw elsewhere that you'd suggested "beware alcohol" and "beware pot". Is this more geared towards people who binge drink, and heave cannabis users? I'm drinking a beer right now and may have (at maximum) 1-2 beers per week, and may vaporize cannabis (at maximum) 1-2x per week, obtaining only a light stone. In other words, usage is occasional and could be described as "mild".

If you’re serious about proper recovery, steer well clear of alcohol and cannabis. There’s nothing beneficial about either of them during psychiatric drug withdrawal. 

[Onmyway]

@mugatu any amount of alcohol sets people back in withdrawal. It is the one thing that we see again and again. People who have been off the drugs for months, have a glass of wine and they are back to the beginning. Alcohol for me is an absolute no! 

 

Regarding pot, the principle for me would be the same as alcohol and some people suffer with it but I have also seen people who have been taking it without serious adverse effects. If I were you I would stop that as well though. The risk is too high. 

 

Regarding doctors - most people do not get support from their doctors when mentioning withdrawal. This is especially true in North America, a bit less true now in the UK after some educational campaigns and the Royal College of Psychiatrists admitting that withdrawal can be difficult for some. 

 

Many people will do the tapering on their own pretending to their doctor that they are taking their full dose and instead slowly tapering. 

If your doctor can prescribe liquid then you are golden. If you have a liquid you don't need compounding, you just need to dilute it. 

 

If you want your trust in the medical establishment to be further shaken - you might want to read this article. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4172306/

 

The kindling issue is more complex. We misuse the term on this forum. Kindling is observed in alcohol withdrawal and means that if an alcoholic withdraws from alcohol and then starts again, the subsequent withdrawals will be more severe. What we mean here by kindling is hypersensitivity. I am not sure why we started calling it kindling. Hypersensitivity means that if you withdraw from a medicine or lower your dose a lot, a reinstatement will cause a hypersensitivity reaction where the medicine feels stronger than it did previously and causes adverse reactions. 

 

OMW

 

 

 

 

 

 

[mugatu]

@Onmyway, so far I haven't found myself to be particularly sensitive to alcohol or cannabis in terms of how I respond to withdrawal. However I only use them in small quantities and at low strengths.

I have no doubt that they're not beneficial in any way - I'm guessing it's a further form of dysregulation, albeit on a smaller time scale, and at a smaller severity - unless I were an alcoholic or chronic cannabis user.

As of now, I don't plan to stop either outright, but my usage is quite minimal. Of course, I do not want to experience any setbacks so any/all use would be "with caution." If there's any consolidated guidance/experience with the impact of these substances on withdrawal and tapering, I'd be interested to read it.

 

I have the liquid now, and it did need to be made by a compounding pharmacy, as it seems that a liquid form of Zoloft is no longer available in Canada (or at least where I am). It cost about $140 for a 1 month supply.

I wonder if I'd fare equally well or better just diluting my own capsules in water (as I started doing while waiting for the product from the compounding pharmacy). I may go that route if I stay on this medicine for a while.

 

I'm still figuring out if I need it, how much I need, and how long I need it for. Following the advice in this forum, after experiencing pretty bad withdrawal, I started back with 1mg. It's only been about 4 days, but I think I'm noticing some impact. Unfortunately, it's really hard to tell if it's the impact of reinstatement, or if it's just my body recalibrating. I'm noticing some bowel changes now - some minor constipation, and I've noticed that the feeling of shakiness that's been a constant companion for a few weeks now has kind of abated/muted a bit.

 

I did notice today that when my boss asked me for something that wasn't ready, I instantly went back into shakiness, difficulty focusing, and difficulty making decisions. So it feels like my nervous system is now/still hypersensitive to things that might cause me some anxiety - and instead of minor anxious feelings rising and falling quickly, they can kick off a state of hyperarousal. This is just my own introspection about what's going on.