DeterminedAnna: long time Seroxat / Paxil / paroxetine user

[Longroadhome]

1 minute ago, Longroadhome said:

And by going back on the full dose it’s going to still take months to stabilise. 

I too have the unrelenting depression and anxiety but we must keep going .

take a step at a time Anna and one day maybe I’ll get to hold your baby too x 

[Miffy]

Hello Anna

I'm not a regular poster really I just read other's stories and learn from them. Thank you so much for sharing your journey. I spotted you because we are in a similar industry I think  - branding and marketing - and in the UK. I also notice that you were interested in the Alpha Stim. Which I bought 3 days ago! After all the UK coverage.

Anyway I'd be happy to discuss it if you wanted.

 

Best and warmest wishes.

[DeterminedAnna]

On 7/10/2019 at 8:39 AM, Miffy said:

Hello Anna

I'm not a regular poster really I just read other's stories and learn from them. Thank you so much for sharing your journey. I spotted you because we are in a similar industry I think  - branding and marketing - and in the UK. I also notice that you were interested in the Alpha Stim. Which I bought 3 days ago! After all the UK coverage.

Anyway I'd be happy to discuss it if you wanted.

 

Best and warmest wishes.

Hello Miffy,

 

Many thanks for saying hello. And well done on discovering this site, you are in good hands.

 

Yes, for my sins, I do work in marketing and branding. I do a lot of writing for blogs / social media. (And I do my utmost to avoid producing content that's fake news / clickbait and generally rubbish!). What about you?

 

Yes, I'd like to try the Alpha Stim device, but my income has taken a big hit in the past six months due to Seroxat withdrawal, so I'm watching every penny. And as a result I have written to my local NHS trust to ask them to loan me the device to try it. Some NHS trusts are already doing this, so I don't see why my own trust couldn't think outside the box and do the same for me. We'll see – I'll post the outcome here. And I see ChessieCat has given you the link to the thread that discusses the Alpha Stim and similar devices.

 

Have you started using it yet? Any results?

 

Also, you might be interested to know that journalist Sarah Vine (the wife of MP Michael Gove) has been trying to stop taking duloxetine. Here's something she's written about it: https://www.dailymail.co.uk/news/article-7084027/SARAH-VINE-Royal-College-Psychiatry-decision-severe-effects-antidepressants.html

 

Thank you again for saying hello and taking the time to read my story. I know you said you're not a regular poster, but sometimes offloading here can be therapeutic – keep that in mind.

 

Have followed you – stay in touch. And best, warmest wishes to you too X

 

 

 

[DeterminedAnna]

On 7/8/2019 at 6:51 PM, Longroadhome said:

I too have the unrelenting depression and anxiety but we must keep going .

take a step at a time Anna and one day maybe I’ll get to hold your baby too x 

Hey LRH,

 

I never said thank you for these moving posts. So THANK YOU. They made me cry at the time, but in a 'I'm moved and so grateful for you people' way.

 

Just a quick check-in today as lots of work on.

 

I hope you are getting lots of cuddles with your new granddaughter (and your daughter for that matter!). Big congratulations! You are always a real inspiration.

 

XXX

 

PS. You are exactly right about having symptoms while TAKING the ADs – I've always put the side effects down to being me, especially as I've taken Seroxat for so long. One day we will say a final goodbye to those side effects. XXX

[Sassenach]

Hi Anna

 

Good to hear you sounding cheerful and busy.

Did you see the post concerning the BBC requesting info on WD posted today.

The more participation the better particularly in view of your work.

Keep on trucking🚚, haven't said that since I left transport.

Hugs

 

Sass

[Longroadhome]

On 7/11/2019 at 11:48 AM, DeterminedAnna said:

Hey LRH,

 

I never said thank you for these moving posts. So THANK YOU. They made me cry at the time, but in a 'I'm moved and so grateful for you people' way.

 

Just a quick check-in today as lots of work on.

 

I hope you are getting lots of cuddles with your new granddaughter (and your daughter for that matter!). Big congratulations! You are always a real inspiration.

 

XXX

 

PS. You are exactly right about having symptoms while TAKING the ADs – I've always put the side effects down to being me, especially as I've taken Seroxat for so long. One day we will say a final goodbye to those side effects. XXX

Anna I’m thinking of you hope you are experiencing lovely windows xx 

[Sebas]

Hi Anna,

Just read through soms of tour threads. I've had soms of these periodes myself. In both cases caused by drug interaction between seroxat and other medicijn/painkillers. In last case it concerned a diclofenac salve for knee injury. In general my experienced advice would be to be careful what you combine with seroxat. Take notice: especially during WD periods. That may cause same problems as you are currently facing (recalibration). Sometimes minor updose (halfway like Sarah suggested) can be helpful. But time and mindset are equally important. Less panic, more acceptance and riding the waves. If you feel tired, sleep. Careful using alcohol and other medicines and vitamines. Fishoil, magnesium are helpful. Use no NSAID, use paracetamol in stead. Only when necessary. Black tea may cause sleeping issues (cafein). I can def. imagine pregnancy/age issues however my advice would be not to rush the cutting down process. If you're stable again don't let (fear of) anxiety cause long term break or change of goals. I can relate to that feeling! Just be more aware of risks. I'm also using two fringes as you mentioned. I've send my GP some links with information and try to stay in charge myself. All i need from her is the liquid. I also have some coaching/help from a general therapist (no shrink). Talking helps, getting personal feedback, keeping a journal. 

......

 

[DeterminedAnna]

Hello Surviving Antidepressants, and all the amazing people I have met through this site.

 

As you can see, I've not been on here for ages. This is not a reflection of this website.

 

It's because, right now, I have to limit my exposure to this topic. Yes – among all the things that Seroxat has stolen from me, is my layman's interest in medicine and brain health.

 

The good news is that I restarted my tapering in June. I'm now doing a five per cent reduction every four weeks (my last attempt was a ten per cent taper, which I stopped in early in 2019). 

 

The fantastic news is that it is going well, and I wrote this as my record of hope:

 

https://www.linkedin.com/pulse/learning-walk-black-dog-anna-sexton/

 

As I couldn't bring myself to look too much into the details when I wrote this, I now realise I've got some of the quantities and dates wrong in the above. But the sentiment is as real and as honest as I can make it.

 

I also wrote the article as a letter to myself in case I hit a rocky patch again. I still have a way to go, so I'm more than aware that this could happen.

 

But, I also have colour, and passion, and joy, and motivation back in my life. So it's my letter to all of you – to say that there is hope and there is life at the other end of this. And there's life even through the process of tapering.

 

Thank you @Altostrata and thank every one of you.

 

I've only crossed paths with a tiny number of people on this site, but I'm thanking you all because as a community, you are fighting for a better future for all of us. And you're fighting even when you've got no fight in you – the bravest kind of brave.

 

X

[Longroadhome]

@DeterminedAnna

 

Anna I’m so proud of you it’s Longroadhome 

I’m  so happy for you that you are able to continue your taper and feeling better. 
well done for persevering and holding until you felt stable enough to continue . 
 

May  your life be happy and drug free very soon xx

Ps . what dose are you on now ? 

[Cigale]

Wow @DeterminedAnna! You are my hero! You are resilient, strong, brave and a very talented writer too. Thank you for sharing your LinkedIn post. If I may, I would like to ask a question. How did you know you were ready to restart your taper after about 13 months? Were you symptom free by then? Thank you again for being sharing your story. I hope the rest of your taper is full of light and continued healing.

[Altostrata]

10 hours ago, DeterminedAnna said:

The fantastic news is that it is going well

 

Hurray! You are very welcome.

[sunnysideup69]

Hello @DeterminedAnna,

Have been reading and inspired by your thread. How are you doing?

[DeterminedAnna]

Hello Surviving Antidepressants team,

 

I haven't been on here in a long time. This is only because I tend to scare myself and feel hopeless when I read about antidepressant withdrawal, especially when in the throes of symptoms. But I do follow from arms' length and thank god you exist.

 

I was in a good place when I made my last update here. But clearly I spoke too soon.

 

To update where I am (I'll revise my signature):

 

In June 2020, I was taking 7.72mg. I'd been on that dose since May 2019, following terrible withdrawal symptoms that emerged early January 2019, when I'd got down to about 6mg. I made the increase to 6.6,g, then 7mg, then onto 7.72mg in May 2019 and stayed there to wait for stability.

 

By June 2020, I felt so good that I was ready to start tapering again. But I decided to go even more conservatively, choosing to taper 5% of the previous dose every four weeks.

 

This was going very well, and I felt better with every reduction. The zombie feeling I've had for the near-20 years of taking Seroxat was receding. I felt more awake, more motivated and more creative. I felt like my real personality was returning.

 

As I was tapering, I was careful to not obsess about symptoms. But I think I was too casual about monitoring things, because, looking back, there may have been warning signs.

 

But I pressed on. And in March, still feeling positive, I decided to start a keto diet to lose weight – weight I've gained I believe due to Seroxat.

 

Big mistake.

 

By coincidence (and in hindsight, bad planning), I made my regular 5% reduction on Saturday 13 March, taking me to 4.72mg. On Monday 15 March, I started my strict keto diet.

 

By Friday 19 March – six days after my reduction and five days into my new diet – the distinct wake-up panic emerged. For me, it comes with dry heaving, racing intrusive thoughts, inner trembling and restlessness.

 

I didn't immediately put it down to withdrawal, but I did abandon the keto diet and start eating carbs again.

 

However, the symptoms continued and on 1 April I decided to make a 2.5% increase (halfway back up to the last dose before symptoms emerged) to 4.84mg.

 

So I've been holding at 4.84mg* since 1 April but I'm still really struggling.

My initial symptoms were:

 

- Insomnia – mainly early waking
- Panic awakenings, always following horrible dreams
- Anxiety symptoms, including palpitations
- Intrusive, scary thoughts and memories. It isn't the content of these things – it's the act of them that seems to cause panic surges.
- Complete loss of appetite
- Random, severe crying spells (these actually make me feel better afterwards)
- Diarrhoea
- Agitation / inner restlessness – I do not get the urge to walk that other people describe, but akathisia is the closest description of this feeling that I can find
- Regular panic attacks for no obvious reason
- Tingling pain in upper arms and shoulders, especially on waking

These have all improved a little and I now find the following symptoms have emerged, that feel more like 'depression'. They include:

- Anhedonia
- Hopelessness
- No motivation

I am still having diarrhoea. For most of this time, I have taken between 2mg and 4mg Imodium (loperamide) every day. However, thinking it might be another addictive drug (it's an opiate, but apparently doesn't cross the blood-brain barrier) I decided to stop taking it a week ago. The diarrhoea has come back and I'm concerned that it means the Seroxat is passing through me too quickly.

 

I have also had a couple of (very short/low dose) courses of benzos for the most extreme symptoms, taken as follows:

 

- 4x 1mg new lorazepam prescription:

   - 3 April – 1.5mg lorazepam
   - 4 April – 2mg lorazepam
   - 6 April – 0.5mg lorazepam

 

- Last of diazepam from an old prescription:

   - 13 April – 12mg diazepam
   - 10 May – 4mg diazepam

- Latest 4x 1mg new lorazepam prescription:

   - 13 May – 0.5mg lorazepam
   - 16 May – 1mg lorazepam
   - 18 May – 0.5mg lorazepam

I can't explain the feeling I have right now. Things feel different to how I was before this latest episode. If I could define what it is, I might be able to do things to help it. I don't know if it's anxiety, depression, or what. It's just a weird, horrible feeling. 

 

These are some of the things I've tried to help myself, and abandoned. I tried them one at a time:

 

- Saffron. Nothing other than perhaps a ramp-up of anxiety.
- Theanine. Nothing.
- My Alpha Stim device (I got this in 2019 and it may of helped, but could have been a coincidence). It does calm me during usage – and it does definitely do something, but I'm not confident in using it right now.

Other things I'm doing that do seem to help:

 

- Taking my Seroxat doses at exactly the same time every day.
- Swimming
- Walking
- Upped my vitamin C dose. I had a massive craving one day for orange juice for no apparent reason. I then read that vitamin C is helpful for adrenaline surges. I now take 750mg extended release of it every day.
- Upped my niacin dose. It helped in 2019 with intrusive thoughts. I now take 2g (2000mg) spread out throughout the day. I don't mind the flushing.
- Resumed (since last taking it in 2019) taurine. I found it helped with palpitations. I now take 1 or 2g (1000mg / 2000mg) daily, depending on symptoms.
- Upped my magnesium (citrate) from 200mg (taken daily since 2019) to 400mg. It did feel I was more calm through this, but it worsened my diarrhoea, so I've gone back to 200mg. I also eat a lot of greens and nuts and take magnesium baths.

 

But I am still really struggling. It doesn't feel as intense as 2019, but it's still horrible.

 

I've been speaking to the local mental health team and although they're a lot more open-minded than my past experiences with them – and they know not to try to offer me more psych drugs – they are at a loss.

 

I know time is the great healer, but I am looking for someone to encourage me and help me with some thoughts:

 

1. Do you think I should updose? I know I've been here before...

 

2. No matter what I know logically, my brain wants to tell me I'm fundamentally ill and this isn't withdrawal.

 

3. Do you think the fives days of keto dieting was a factor, or just a coincidence?

 

4a. Why do withdrawal symptoms seem just appear? In my case, in early 2019 and in March this year, they literally appeared overnight?

 

4b. Or do the symptoms NOT appear overnight, but instead they just become noticeable? Like I said, I don't monitor my symptoms – I have a tendency to think if I have a headache, or diarrhoea, it's because I've not drunk enough water or have eaten too much high-fibre foods. Where do we draw the line between normal ailments that would happen to people not on psych drugs, and withdrawal symptoms? I know the advice is to monitor symptoms and taper accordingly, but I don't like when I'm not having withdrawal symptoms I don't want to think about withdrawal, or Seroxat. It's traumatic.

 

5. Every time I've experienced withdrawal crashes it's been about 10 months, or 10 cuts after starting my taper. Do you think this suggests a cumulative effect is happening and I need to leave longer holds between cuts?

 

6. Could the diarrhoea be compounding my problems – ie is it making Seroxat pass through me more quickly? I suspect the withdrawal is causing the diarrhoea (serotonin-gut link) so this feels like a vicious circle. Should I keep taking Imodium? Some IBS resources say Imodium is safe in the long term.

 

7. Could the very occasional use of a benzo, as above, have made me more unstable? I do get relief from it, but I'm very wary of taking a benzo regularly (and refreshingly, my GP was of exactly the same opinion). I wonder if even one low dose can cause some kind of rebound. If so, it's probably best to avoid altogether, right?

 

8. Have there been any recent developments in research about antidepressant withdrawal? I've looked in the media section, but I guess I'm looking for any medical research that might offer some hope.

Thank you always for all your help.

 

* I take my daily 4.84mg using liquid Seroxat, as follows:

 

- Lunch, 1.45pm: 4mg Seroxat (as 2ml)

- Evening, 8.45pm: 0.84mg Seroxat (as 0.42ml)

 

I got to twice-daily dosing in May 2019, when I updosed by 10%, deciding to take the extra amount in the evening as I suspected that Seroxat's short half-life was more of a factor at lower doses. 

[DeterminedAnna]

Hello, please could somebody help me.

 

Since my previous post above, I've had a strange, distressing feeling emerge that I'm struggling to explain.

 

It doesn't feel like past depressive or anxious feelings.

 

It started when I came back home from swimming yesterday. It had been sunny all week and then yesterday rained heavily. I went in the living room which, compared to the sunlight it'd had all week, it felt grey with the artificial lights back on.

 

My mood changed as soon as I went in the room. It's hard to describe.

 

The world / lighting / my perception / the environment around me just feels weird. I'm not delusional or hallucinating. I'm not having panic surges.

 

I've read about derealisation and depersonalisation on here and I can identify some of the derealisation parts but it still doesn't fit what I'm experiencing. I'm not viewing myself from a distance and I don't feel detached from anything.

 

I'm trying to figure out this feeling so I can respond to it in a way that can help.

 

My diarrhoea has got worse since it started.

 

I'm scared by this and would be grateful for some help.

[Shep]

@DeterminedAnna I received your PM and am answering your latest posts. 

 

My best take on your update is the abrupt switch to a Keto diet upset your GI system and then you made massive increases in supplements like vitamin C, niacin, and magnesium, all of which can cause GI problems. 

 

Please research all of your supplements. The more nutrients you can get with diet, the better. Supplements are notorious for causing problems with people going through withdrawal. 

 

The periodic benzos are playing with fire when it comes to dependency and causing symptoms like depersonalization / derealization. Please post your full history with benzos, as they aren't listed in your signature (you mention having an old prescription). 

 

[DeterminedAnna]

16 minutes ago, Shep said:

@DeterminedAnna I received your PM and am answering your latest posts. 

 

My best take on your update is the abrupt switch to a Keto diet upset your GI system and then you made massive increases in supplements like vitamin C, niacin, and magnesium, all of which can cause GI problems. 

 

Please research all of your supplements. The more nutrients you can get with diet, the better. Supplements are notorious for causing problems with people going through withdrawal. 

 

The periodic benzos are playing with fire when it comes to dependency and causing symptoms like depersonalization / derealization. Please post your full history with benzos, as they aren't listed in your signature (you mention having an old prescription). 

 

Hello Shep, and thank you for replying so quickly.

 

With regards to the supplements, I increased them in mid-April, about a month after my withdrawal symptoms emerged on 19 March.

 

I also only increased / changed one supplement at a time. By the time I'd got to my current stack of supplements, I was taking Imodium every day and so I couldn't tell if the diarrhoea was worsened by the supplements because the Imodium has masked the possible diarrhoeal effects of the supplements.

 

The only supplement change that did seem to result in diarrhoea was the doubling of my daily magnesium (from 200mg mag citrate I've taken since 2019, to 400mg, which I stopped after a few days). 

 

I have only taken benzos during this latest episode, since early April, on the dates above, although I got it wrong on the latest lorazepam prescription and can't edit the above. This is the correct dosage history (changes in bold/italic/underline):
 

- 4x 1mg new lorazepam prescription:

   - 3 April – 1.5mg lorazepam
   - 4 April – 2mg lorazepam
   - 6 April – 0.5mg lorazepam

 

- Last of diazepam from an old prescription:

   - 13 April – 12mg diazepam
   - 10 May – 4mg diazepam

- Latest 4x 1mg new lorazepam prescription:

   - 13 May – 0.5mg lorazepam
   - 16 May – 1mg lorazepam
   - 28 May – 0.5mg lorazepam

   - 10 June – 0.5mg lorazepam

 

I have 1.5x 1mg lorazepam tablets left from my latest prescription.

 

I was prescribed the diazepam mentioned above in January 2020. That prescription was for 7x 2mg diazepam in case I got any withdrawal symptoms from switching to a paroxetine liquid that was custom-made for me while branded Seroxat was temporarily out of stock in early 2020.

 

However, I never took that diazepam as I never got any withdrawal symptoms. So the last time I took a benzo before this latest episode (ie before 3 April 2021), was 19 October 2019.

 

I do not have a long history with benzos – I was prescribed very short courses / low doses of lorazepam for withdrawal symptoms in 2019, and on average between February and October 2019 I took 1x 0.5mg lorazepam per week, these doses being clustered around February, June and August.

 

For the whole of 2020, the only prescription med I took was Seroxat (and I am very fortunate to be in this position), resuming tapering in June 2020. And for the whole of the year I felt really good – better than I'd felt in years.

 

I've tried to add this to my signature but it won't let me add more lines. I'll try to add as links to Google Docs...

I'm sorry I'm not a regular user of this site and I'm sorry I'm only here in times of need. I have huge respect and gratitude for the work going here. When I'm well, I just don't want to think about Seroxat withdrawal and have to keep a distance between me and this subject. Episodes of withdrawal symptoms feel traumatic.

Thank you again.

 

[Shep]

On 6/19/2021 at 10:04 AM, DeterminedAnna said:

I do not have a long history with benzos – I was prescribed very short courses / low doses of lorazepam for withdrawal symptoms in 2019, and on average between February and October 2019 I took 1x 0.5mg lorazepam per week, these doses being clustered around February, June and August.

 

For the whole of 2020, the only prescription med I took was Seroxat (and I am very fortunate to be in this position), resuming tapering in June 2020. And for the whole of the year I felt really good – better than I'd felt in years.

 

Thanks for the additional information. It's possible that you simply hit a wave, especially now that you're on a lower dose. Even though Seroxat is an extremely potent drug, many people struggle at these lower doses. This thread explains more:

 

Why taper? SERT transporter occupancy studies show importance of gradual change in plasma concentration

 

So you may want to use extra long holds and / or go slower than your current 5% monthly reduction. If you're not already doing so, you may want to consider the Brassmonkey Slide, as it allows you to taper a smaller percentage each week instead of the full percentage at one time each month. Please see:

 

The Brassmonkey Slide Method of Micro-tapering

 

And you may want to get rid of the benzos. While you've been doing an excellent job of periodic dosing, you may be setting yourself up for kindling if you continue on with periodic use. These drugs are traumatic to the nervous system with on again / off again use.

 

The dependency issue was re-visited by the FDA last year and a stronger warning placed on them about dependency developing "in days". Please see:

 

FDA requiring Boxed Warning updated to improve safe use of benzodiazepine drug class

 

The benzo forums do periodically see people become dependent with periodic use with just a few days, so it's definitely something to stay vigilant about. 

 

[DeterminedAnna]

Thank you @Shep for all your help. I am not considering restarting my taper until I feel fully better and for a substantial amount of time. I suspect this will be 2022. When I do, I will look at the Brassmonkey slide as it makes so much sense with the lower doses. (As does leaving longer pauses between cuts).

Regarding the benzo use, in my own experience I feel that one dose in extreme circumstances can be helpful, but I find more intense (or different, but just as horrible) symptoms can return as the effect wears off. It's so unpredictable and my experience mirrors the research you shared.

On another point, I wonder if there's anyone on the site with experience in opiates?

I didn't explain myself well above, but I ask because since the end of March I have taken between 2mg and 4mg of loperamide (Imodium) every day. I've done this because when the withdrawal symptoms emerged in mid-March, I immediately got diarrhoea – this is a telltale sign for me.

Fearing that the diarrhoea would mean the Seroxat was passing through me more quickly and not getting fully absorbed, I decided to treat the diarrhoea with the loperamide. 

By early June, the diarrhoea had eased and I was starting to get the opposite problem, so I decided to stop the loperamide. I didn't do it overnight – for three days I took 2mg a day, then three days took 1mg a day, then three days took 0.5mg a day.

Within five days of the last 0.5mg dose of loperamide (on 12 June), the diarrhoea was back, and much more severe than prior to taking it. Last week, on 17, 18 and 19 June, I was going to the toilet every 20 minutes and passing fluid.

By Saturday evening (19 June) I felt spaced out (I wonder if that was dehydration?). I also started to feel the distinct agitation of withdrawal symptoms creeping back. It could be a coincidence. It's such a muddle of symptoms...

But because I didn't want the diarrhoea to continue, I restarted the loperamide. I've taken 2mg of it every night since Saturday night. But I suspect I'm simply stalling a future problem.

I saw my GP appointment yesterday (Tuesday 22) because I felt a blood test wouldn't be a bad thing. As it was an emergency appointment, I didn't see my usual GP but to my relief this new GP was not dismissive of my withdrawal symptoms. In fact, she talked about the paper by Dr Mark Horowitz. The message is getting through.

I asked her about the loperamide and she said it isn't an opiate, doesn't cross the blood-brain barrier and is safe to take indefinitely. But I've heard that before...

I looked into loperamide's effect on the CNS and from what I can understand, a protein called P-glycoprotein (P-gp) stops it from crossing the blood-brain barrier...

https://missouripoisoncenter.org/loperamide-an-unexpected-drug-of-abuse/

However, I noted the article says that certain drugs inhibit the action of P-gp.

This then prompted me to look into SSRIs and their effect on P-gp...

https://pubmed.ncbi.nlm.nih.gov/12649369/#:~:text=Both cell systems proved to,well known Pgp inhibitor quinidine.

It turns out that it paroxetine does inhibit P-gp.

This makes me concerned that loperamide IS getting into my brain and nervous system. And by taking it, I am setting myself up for trouble.

Like so many people in withdrawal, I am now stuck between a rock and a hard place.

I'm certain diarrhoea exacerbates withdrawal symptoms, causing a vicious circle.

But I'm concerned the loperamide is problematic.

Is there anybody on the site who knows more about opiates and loperamide who can help? I know you're not healthcare professionals but I have found the guidance here to be far more informed and considered than the guidance from the professionals.

Thank you again for your help.

[Shep]

18 hours ago, DeterminedAnna said:

I didn't explain myself well above, but I ask because since the end of March I have taken between 2mg and 4mg of loperamide (Imodium) every day. I've done this because when the withdrawal symptoms emerged in mid-March, I immediately got diarrhoea – this is a telltale sign for me.

Fearing that the diarrhoea would mean the Seroxat was passing through me more quickly and not getting fully absorbed, I decided to treat the diarrhoea with the loperamide. 

By early June, the diarrhoea had eased and I was starting to get the opposite problem, so I decided to stop the loperamide. I didn't do it overnight – for three days I took 2mg a day, then three days took 1mg a day, then three days took 0.5mg a day.

Within five days of the last 0.5mg dose of loperamide (on 12 June), the diarrhoea was back, and much more severe than prior to taking it. Last week, on 17, 18 and 19 June, I was going to the toilet every 20 minutes and passing fluid.

By Saturday evening (19 June) I felt spaced out (I wonder if that was dehydration?). I also started to feel the distinct agitation of withdrawal symptoms creeping back. It could be a coincidence. It's such a muddle of symptoms...

But because I didn't want the diarrhoea to continue, I restarted the loperamide. I've taken 2mg of it every night since Saturday night. But I suspect I'm simply stalling a future problem.

 

I'm not familiar with Imodium or its mechanism of action, but with psychiatric drugs, we recommend consistent dosing, so you may want to get on a consistent dose with this, as you've been on it long term. Your system may have adapted to it.  You mention taking between 2 - 4 mg, but now that you reinstated to 2 mg per night, if that provides enough relief, I would stick with that for awhile and then perhaps gradually reduce it with the 10% method that we recommend for psych drugs. 

 

SSRIs are notorious for causing stomach problems, so this may be something you aren't able to reduce until you're on a lower dose of the AD. You'll have to weigh the pros and cons of taking any additional medication in relation to the severity of the withdrawal symptoms and side effects of the drug you're tapering. 

 

Please feel free to read and post on this thread where people struggling with these symptoms are discussing: 

 

Digestive problems: nausea, diarrhoea, bloating, GERD

 

18 hours ago, DeterminedAnna said:

As it was an emergency appointment, I didn't see my usual GP but to my relief this new GP was not dismissive of my withdrawal symptoms. In fact, she talked about the paper by Dr Mark Horowitz. The message is getting through.

 

Thanks for letting us know about this, DA. Are you able to switch over to this new GP and make her your usual GP going forward? She sounds open-minded and informed. 

 

[DeterminedAnna]

Hi @Shep – thank you for your last bit of advice. I'm just updating my Intro as I'm considering resuming my tapering, having held at 4.84mg Seroxat since 1 April last year (2021). I haven't been on here in ages as I do find distracting myself and focusing on things I enjoy, like my work, is helpful in many ways.

 

Regarding your last question – about a good GP – yes, I have two, which I will never take for granted. There is Dr N who has seen me the most regarding Seroxat withdrawal (and has never once dismissed or downplayed it – she is a fantastic listener and knew about akathisia as soon as I said it). And Dr R, the most senior practice GP, who had read the Mark Horowitz paper and talked about in my appointment with her. 

I emailed Dr R's practice recently (a generic email address – NHS doctors don't tend to give out their own email address) to give them an update and to say I wanted to start tapering again.

 

I regularly update the practice this way, even if to say there's nothing to report. In my emails, I put a header saying **No action/reply required – but please add this to my records**. I do this because I know the admin team are busy but I want my experiences saved on my records.

 

With my latest email to the practice about wanting to resume (5%) tapering, I said I'd looked back at my past withdrawal crashes, and irrespective of the dose, they have always happened after about ten months (or ten four-weekly reductions). I said this makes me wonder if I have previously gone too fast and I've overlooked mild withdrawal symptoms as warning signs, and eventually they accumulate to a crash. I said in the email to the practice that I want to resume tapering, but will make my cuts every four weeks at a minimum, based on symptoms. And I need to pay closer to my symptoms. I also said that I may hold for a few months after five reductions, even if I am feeling well, to allow my body to catch up. 

 

I did not expect a reply to my email. So it was good to get a text from Dr R saying she is happy with my plan – to not stick to a calendar because she agrees with my remarks that withdrawal symptoms are cumulative.

 

Since this dialogue with my GP, I have started to get cold feet about restarting my taper. I'm wondering about a few things – would it be possible to help, or point me to admins/guidance that could?

Q1. I have been holding since 1 April 2021. I am still on 4.84mg Seroxat (and no other prescription drugs – my signature is up to date). Is it possible for withdrawal symptoms to fade and for the usual adverse effects of the drug to re-emerge as waves and windows level out?

For instance, my worst withdrawal symptom is akathisia. Having learned about it, I now believe I had it when I started Seroxat ~20 years ago (due to the agitation, I attempted to take my life a few days after I started the Seroxat). I had it in my 2019 crash as well – and most recently, I had it spring/summer last year following my March 2021 crash.

 

By autumn last year, I felt a lot better, with motivation, sense of humour and creativity returning, as well as the ability to relax. Now, since about Christmas, I have felt flat (with waves of feeling very down), and demotivated/anhedonic. In many ways, it feels like I am back to being on a full dose of Seroxat.

 

My dilemma is if these latest symptoms are adverse drug effects, then I was thinking that a reduction could help and it might be a good time to restart tapering. But, if the symptoms are actually a wave – and I'm still recovering since my March 2021 crash – then restarting tapering could further upset things. And then there's another factor – I always feel a bit more lethargic over the Christmas / darker months, so perhaps it is that?

 

I'd be really grateful for any pointers – I want to restart tapering, but I'm confused about my latest symptoms – whether they're still ripples of a withdrawal crash, or are the side effects of the Seroxat. Given it still has a significant effect even at low doses (I'm thinking of those occupancy charts, here) I believe you can get side effects from the drug right up until you're completely off it. Is this fair to say?

 

Among all the reasons I want off this drug is the anhedonia / demotivating / emotional blunting it causes me. I can see in hindsight, having got so far towards stopping it, that Seroxat has had this effect on me for 20 years. It feels like bereavement to realise this.

 

Q2. Clearly in my next round of tapering, I need to pay closer attention to my symptoms. What's the best way to monitor them as you're tapering? How can you pinpoint symptoms of withdrawal, rather than everyday bodily fluctuations?

 

In the past, I've tried to avoid letting tapering take over my life – so I've often brushed off symptoms along the lines of "I've got a headache – that could just as much be because I've not drunk enough water, rather than withdrawal". How do you strike the right balance between taking your symptoms seriously versus becoming obsessed with them? I think I've been too blasé about my symptoms, and they've then caught up with me to have a crash. Does this sound familiar?

 

Q3. As mentioned above, I had severe migraines in the summer. I declined offers of triptans and muscle relaxants for them, but did agree to have an MRI. On reviewing my scans, the neurologist diagnosed me with idiopathic intracranial hypertension – increased pressure in the fluid around my brain and spinal column. The migraines have all but disappeared since the late summer, but I'm wondering if there could be any connection with Seroxat (or indeed SSRI) withdrawal? As I don't want to take drugs for it, I've been advised to lose weight (ie the weight I've gained due to Seroxat!) as the first option. The next option is to have a lumbar puncture to release some of the liquid, but the neurologist said he'd rather I tried weight loss first...

 

Q4. I have read about POTS and mast cell activation syndrome. In withdrawal crashes, I have symptoms that are very similar to those of these conditions – e.g. the heart racing when I wake up (which I know many here report) a feeling like I'm going to faint, neck and shoulder pain, and also a rash that appears if I scratch myself (I get very itchy in withdrawal crashes). Would it make sense to mention these conditions to my GP to try to illustrate the withdrawal symptoms are a type of dysautonomia, rather than a psychiatric thing?

 

The reason I ask Q4 is today (15 January) I had yet another encounter with a frustrating health professional – a new pharmacist who was dispensing my prescription – who asked me why I was taking such a low dose of the Seroxat. I told him I'm trying to get off it but the withdrawal symptoms are so bad that I need to taper very gradually and slowly. He started saying 'but that's because this medication at this dose isn't treating your depression...' and I said 'ok, thank you', and walked out. I am sick of people who are perfectly willing to accept that nicotine, caffeine, alcohol, cocaine etc can cause withdrawal symptoms but for some magical miraculous reason prescribed psychiatric drugs don't. I am sick of these people seeing my 'depression' label and treating me like my knowledge, experiences and opinions are irrational.

 

(Sorry, rant over.)

 

Any pointers you could give about my questions above would be great. I need to get off Seroxat – I just want to do all I can to prevent withdrawal crashes in the future.

Thank you, as always.
 

[DeterminedAnna]

PS. I should add something else to my 15 January 2022 update above...

 

In the summer (18 August 2021) I had an unrequested phone checkup with a psychiatrist – he called me without any notice.

 

I told him about the withdrawal symptoms I had in March / April (akathisia, severe insomnia, severe diarrhoea, teeth grinding etc). He said: "I've never seen it in any patient. It doesn't happen."

 

He then asked me why I wanted to stop the Seroxat and I said I wanted to start a family.

 

He then started sniggering and said "You do know that paroxetine isn't a contraceptive, don't you?"

 

I told him I found it very insulting that he was laughing at me – and that because I'd taken this drug for so long, I knew that it wasn't a contraceptive.

 

(Also, why laugh at a patient if you think their knowledge is lacking?)

 

I explained the reason I want to stop taking the Seroxat is because I don't want to subject my developing baby to this drug, because it is a teratogen and causes withdrawal in newborns.  

 

The call was awful, so I said I didn't want to talk further. After it ended, I complained about him to the health trust's patient liaison service. I said I would be willing to talk to a group of psychiatrists about my experiences on one of their training days.

 

My complaint got escalated and I've now been invited by the trust's lead psychiatrist to talk over Zoom on a psychiatrists' training day. The lead doctor has also invited Professor David Taylor to talk with me. This David Taylor, who I understand is the lead author of the Maudsley Prescribing Guidelines.

https://www.theguardian.com/society/2021/may/19/antidepressant-withdrawal-symptoms-shouldnt-be-mistaken-for-return-of-illness

 

I also understand Prof Taylor has experienced SSRI withdrawal himself:

https://www.socialaudit.org.uk/4200DTAY.htm

 

Another question here: what is the best information I could share with these psychiatrists? I have now encountered seven of the trust's psychiatrists and all of them are clueless.

 

The session will be in the spring.

 

 

 

[Shep]

On 1/15/2022 at 11:06 AM, DeterminedAnna said:

Q1. I have been holding since 1 April 2021. I am still on 4.84mg Seroxat (and no other prescription drugs – my signature is up to date). Is it possible for withdrawal symptoms to fade and for the usual adverse effects of the drug to re-emerge as waves and windows level out?

 

 

This sounds more like withdrawal waves or even tachyphylaxis (antidepressant "poop out"). Side effects and adverse reactions are dose dependent, so if you haven't increased the dose, I don't think you'd suddenly start having an adverse reaction. That being said, many of us become hyper-sensitive to many things during the withdrawal process. 

 

You may want to start out with a very small reduction, perhaps 3%, and see how you do. You could even use the Brassmonkey Slide, which involves tiny weekly reductions instead of a larger monthly reduction:

 

The Brassmonkey Slide Method of Micro-tapering

 

 

On 1/15/2022 at 11:06 AM, DeterminedAnna said:

Q2. Clearly in my next round of tapering, I need to pay closer attention to my symptoms. What's the best way to monitor them as you're tapering? How can you pinpoint symptoms of withdrawal, rather than everyday bodily fluctuations?

 

Please see:

 

Keep daily notes of drug schedule and symptoms to track patterns and progress
Keeping a record of your withdrawal symptom pattern so you can manage it.

Dr. Joseph Glenmullen's withdrawal symptom checklist
Use this to track symptoms.

 

On 1/15/2022 at 11:06 AM, DeterminedAnna said:

Q3. As mentioned above, I had severe migraines in the summer. I declined offers of triptans and muscle relaxants for them, but did agree to have an MRI. On reviewing my scans, the neurologist diagnosed me with idiopathic intracranial hypertension – increased pressure in the fluid around my brain and spinal column. The migraines have all but disappeared since the late summer, but I'm wondering if there could be any connection with Seroxat (or indeed SSRI) withdrawal? As I don't want to take drugs for it, I've been advised to lose weight (ie the weight I've gained due to Seroxat!) as the first option. The next option is to have a lumbar puncture to release some of the liquid, but the neurologist said he'd rather I tried weight loss first...

 

I'm not familiar with this disorder. I'm confused on whether you're still having this problem - you mentioned that the migraines have disappeared, but your doctor may do a lumbar puncture? 

 

On 1/15/2022 at 11:06 AM, DeterminedAnna said:

Q4. I have read about POTS and mast cell activation syndrome. In withdrawal crashes, I have symptoms that are very similar to those of these conditions – e.g. the heart racing when I wake up (which I know many here report) a feeling like I'm going to faint, neck and shoulder pain, and also a rash that appears if I scratch myself (I get very itchy in withdrawal crashes). Would it make sense to mention these conditions to my GP to try to illustrate the withdrawal symptoms are a type of dysautonomia, rather than a psychiatric thing?

 

 

You may want to print out the article listed in the first post in this thread:

 

CEPUK - Major milestone: Royal College releases new guidance on stopping antidepressants

 

While it doesn't go into dysautomonia, it does give legitimacy to the slow taper and acknowledges the long-term problems , if that's an issue with your doctor. 

 

Since there isn't anything a doctor can do to "treat" withdrawal and the slow taper is what minimizes the damage, spending a lot of time getting your doctor to understand may be more frustrating for you than helpful. But if you have a good rapport with your doctor and you're able to educate your GP, you may want to have this discussion.

 

On 1/15/2022 at 11:23 AM, DeterminedAnna said:

Another question here: what is the best information I could share with these psychiatrists? I have now encountered seven of the trust's psychiatrists and all of them are clueless.

 

Very glad you're making progress in setting up meetings with doctors open to listening. The CEPUK link above is a good one to start with. And I'm sure you can find more information in the Journals section (I would start with the pinned topics). This is a great resource for the historical references:

 

History We Can’t Overlook Anymore: Details Before the Anti-Depressant Era

 

On 1/15/2022 at 11:23 AM, DeterminedAnna said:

I also understand Prof Taylor has experienced SSRI withdrawal himself:

 

It's good these doctors with this experience are opening up about this. This is a grim statistic:

 

Doctors' Suicide Rate Highest of Any Profession

 

I imagine a lot of doctors are using psychiatric drugs (Dr. Peter Breggin has written about this problem). It's in their own best interest to deal honestly with these drugs if they wish to save their own lives. This problem has been going on for years, long before the Covid pandemic. Clearly, something has gone wrong.

 

Please let us know how you do with your taper. 

 

[Blossom71]

On 1/15/2022 at 4:06 PM, DeterminedAnna said:

 

I am sick of people who are perfectly willing to accept that nicotine, caffeine, alcohol, cocaine etc can cause withdrawal symptoms but for some magical miraculous reason prescribed psychiatric drugs don't. 
 

If Doctors/Psychiatrists/Pharmacists were willing to accept this, then they’d have to also accept that it was them that got us into this mess in the first place.

 

Well done with your complaint and for finding people who are willing to listen. That’s amazing!

[DeterminedAnna]

Hello @Shep

 

Thank you as always for all the excellent help. I'm not here much, but every time I am I notice something else that's marvellous. You take the time to properly read people's notes. You pick out the important points, consider and respond. This is so valuable and considerate. Thank you.

 

I've never particularly felt that I'd had poop-out - but only because I'd never properly considered it. After you wrote your reply, I looked back on my notes from my 2019 withdrawal crash and realised I had similar waves of anhedonia / demotivation then, so I'm inclined to think it's more a withdrawal wave.

I think the Brassmonkey slide makes the most sense for the last phase of my taper. But I do like the simplicity of single reductions every four weeks, so I am going to read and think long and hard before I make my decision. A 3% cut to test the water makes sense, too – I think the standard 10% cuts every four weeks are too much for me now (and I realise they're only a guide).

For the symptom tracking, the links are perfect, thank you. I have adapted Dr Glenmullen's list into a spreadsheet that I can update on my phone.

Regarding the idiopathic intracranial hypertension, which I can't say is related to withdrawal (although... who knows) I was firm with the neurologist about not wanting any drugs. He said the fact I've not had any vision problems and the migraines have faded is a good sign – but, if it flared up again, one non-drug treatment would be a lumbar puncture to remove a small amount of cerebrospinal fluid. Irrespective of all of this, he said I should lose some weight – it's the first thing he recommends, where appropriate, for this condition. He's right about losing weight – it would help me in many areas. So more swimming and lighter dinners for me.

(In any case, it's all probably TMI and me waffling in that previous post – and here now.)

Regarding the dysautonomia thing, I'd just like to have 'paroxetine withdrawal' officially on my records and I figured if I could liken my symptoms to existing neurological disorders, that could help my GP think beyond psychiatry and 'mental illness'...

 

I'm being naive, aren't I?

 

I've had not had any formal diagnoses, but over the past eight years, psychiatrists have noted everything from ADHD to 'adjustment disorder' to bipolar to OCD on my records. I want those ridiculous and misleading terms removed. But it's a battle I don't really need to fight right now. My own GP is good and I've accepted there is very little doctors can do –  it's a matter of time and slow, careful tapering.

As for talking to the group of psychiatrists, I'll be nervous about sharing my experiences with them, but I want to do it. So I'll start with the CEP link, as well as the pinned posts in the Journals section. I'll collate all these things in a Google Drive folder, share it on the day and add some tracking so I'll be able to see how many of them actually open the links and files. Will be interesting. And I now have plenty of reading matter to get on with ahead of that.

Thanks again, Shep. I won't tag you on the next post, but I will update my thread more regularly as I restart and continue my taper, and will definitely post here after I've done my talk with the local psychiatrists.

[Ariel]

Hi @DeterminedAnna

 

Reading through your thread. Wow. I am bowled over by your tenacity and perseverance, as well as your impressive dedication to so generously documenting your journey here. Your posts are incredibly informative and helpful. Thank you. Everything you have written and shared here is truly a gift to the community and the greater good. Thank you, and hats off to you for all your hard work, bravery, and activism. 

 

I am wondering how you are... And at the same time I respect your decision to protect yourself from undue triggers and maintain a healthy distance to this site. So it is from a place of care and compassion that I express interest: How are you doing?  And it is from that same place that I emphasize, feel free to ignore my inquiry as you see fit. No pressure, no hard feelings. 

 

Whether or not you see this or respond, I'm thinking of you and rooting for you. I believe in you. 

Sending prayers of peace and support for your continuous healing journey, with gratitude,

A.