Hilly: supporting my son

[Yesyes123]

It's the first few months that are truly scary. After a while things start to settle down, as long as you don't keep bouncing around with doses and other drugs. Peace and healing

[Hilly]

My son moved home around 3-weeks ago and I'm pleased to say that he is doing better now.  He's still experiencing some problems but is light-years away from the condition he was in at Christmas.

 

As a recap, my son had been dropped off Duloxetine over 1-week and put on Agomelatine by his clinicians in November and went into a steep decline.  Before this his experience on antidepressants was, in his words, that they made him lethargic and suicidal.  He was in a frightening state at Christmas where just the thought of continuing to exist was practically unbearable to him.  My son decided to drop the antipsychotic that he had been on (intended to supposedly 'augment' his antidepressant) at the beginning of January and his clinician dropped him straight off the Agomelatine.  January was rough for him.  I visited him in February and he was very low and negative and I started to wonder whether the clinicians had been right about there being an underlying condition that needed treatment.  Then over the next month I noticed that his communication had improved during our phone calls, and he even laughed a bit at my poor attempts at jokes.  I saw him again towards the end of March when I went to collect him to move home for a while and he was very much improved - brighter, able to communicate, more energy.

 

He is streets ahead of where he was when taking the psychiatric drugs and/or withdrawing from them but is not completely well yet.  He explained that on a scale from his worst to his best, he feels he is just over half-way.  He is still experiencing anhedonia and cognitive problems (memory and organisation), and although he is functioning well, he has a tendancy to fall into negative thinking spirals and to conclude that things are bleak if he isn't busy or spends too much time alone.  But over the last few weeks, he has organised activities into his life, trips away with friends, foreign language lessons, voluntary work, yoga/breathwork.  I am so proud of him.  He has been to the edges of hell and has fought back.  He still has some ground to cover before he is confidently and securely well but he is working on this.  He is now doing the stuff that is likely to contribute to becoming a healthy human being rather than just a drugged human being.  There is now the opportunity for growth.

 

I regret the day that my son ever became involved with psychiatry.  He had a lucky escape - I truly believe that psychiatry would have killed him if he had continued with their drug regime.

[Faure]

On 1/27/2022 at 7:49 AM, Hilly said:

The consultant said that dropping such a small amount of Aripiprazole abruptly would not continue to be causing symptoms for him, and he said my son's condition would only deteriorate if not treated with more drugs as soon as possible.  This was obviously a very alarming thing for my son and myself to hear.

Well, reading your most recent post about how much better your son is doing compared to what the so called expert said would happen is very gratifying. Have you thought about informing the “expert” about your son’s improvements?

 

What great news that he’s feeling well enough to start living again ☺️

[Hilly]

Hi Faure,

 

my son is functioning much better than he was whilst taking the drugs - the fatigue, exhaustion, cognitive impairment, agitation and suicidality have died right back.  He's not back to his old self though, and I think if I told a doctor that he was much better, they'd point to this and say that he needs more drugs.  I don't think they have the ears to hear patient experiences anyway.

 

My son is doing much better but still experiences drops in mood, some quite steep and deep.  These seem to be unrelated to life events so I'm starting to wonder whether he's experiencing the 'windows and waves' withdrawal pattern.  Over the past couple of years he has experienced burn-out, has been to psychiatric drug hell and back, has lost his job, and has had to move back home and away from his girlfriend, so he is coping with some pretty hefty life events.  This would explain sadness, grief etc but my impression is that he seems to have 'drops' that are happening independently of this.  He says he can 'feel them coming on'. Do you think this could be the 'windows and waves' pattern or if there may be something else that we should consider attributing this patten to?   And if it is 'windows and waves', do you know if this is this likely to improve (ie, steadily longer windows) or is the trajetory changeable and unpredictable?  The drops are worrying as they seem to cause him to lose hope.

 

Thank you for any information, advice or experiences that you can direct me to.

 

I hope all is going well for you on your journey.

 

Hilly

 

 

 

[Faure]

2 hours ago, Hilly said:

He's not back to his old self though, and I think if I told a doctor that he was much better, they'd point to this and say that he needs more drugs. 

I think the only way to get back to your old self is to get off these drugs and be finished with WD symptoms, however long that takes. I’m down for 15mg to 7.1mg of mine and am starting to feel more like myself. I am hopeful I’ll feel better and better the lower I go till I’m off.

 

I’m afraid I can’t advise on your question about windows and waves, I don’t have the experience. If you tag a mod who helped you before they will be able to answer. 
 

Glad he’s feeling so much better ☺️

[Hilly]

You're a true survivor, Faure 🙂✊

[Hilly]

@Kiasofia

 

Hi Kiasofia,

 

I wonder if you could comment on the pattern of mood changes that my son is experiencing?  Could this be what they call 'windows and waves'.  He went cold-turkey off his drugs at the start of the year and felt pretty rough for a couple of months.  He has improved a great deal but is now being hit by periods of extreme low mood and hopelessness that seem to come out of nowhere.

 

My son had periods of low mood before he started psychiatric drugs.  They would arise without an obvious cause and last anywhere from a few days to 1-month (at that time he did drink and became aware that alcohol was a trigger).  The lows that he is experiencing now are much more severe than they were pre-drugs, and he says he feels like he is much more unstable than he was before.

 

He had one of these lows just over a week ago.  When the low hits, his face goes dark and he can see no hope at all in continuing, in spite of having a very different outlook a few days earlier.  Luckily, he had a breathwork session booked (his first) on the day after the low really hit and went to it anyway and the change in him afterwards was quite astonishing - his mood remained improved (out of the hole) for the week.  Unfortunately, his mood has now dropped into a hole again this weekend.  We suspect it may have been triggered by a late night out with friends (just late - he doesn't drink now).  Is this what they call 'windows and waves'?  If so, does it improve or does it get worse before it gets better?  Is there any way of avoiding or managing the waves?  Will it go?

 

Thank you for any information or advice you can offer.

 

Hilly

 

p.s. he is going to continue with the breathwork in the hope that it might be a useful tool.

[Faure]

Unfortunately kiasofia is in a wave herself, might be worth tagging a couple of others

[Hilly]

Thank you for letting me know, Faure.  I'm so sorry to hear that Kiasofia is going through a rough patch - I hope it eases off soon.

 

I found this page and have answered a lot of my questions.  From the descriptions, it does sound like my son is experiencing the windows-and-waves phenomenon and is likely to be in post-acute withdrawal.

 

https://www.survivingantidepressants.org/topic/82-the-windows-and-waves-pattern-of-stabilization/?/topic/82-the-windows-and-waves-pattern-of-stabilization/?p=50148

 

From what I understand, there is no way of avoiding the W-a-W symptoms, the course is unpredictable, people do get better but it takes time.

 

My son is coming to accept that this may be what is happening, but when he goes down he seems to lose hope and is unable to see anything ever being better. 

[Faure]

I think one of the symptoms is that when we’re in a wave we think we’ve always been in it and always will be. It’s a horrible feeling but if he can develop awareness that this is what happens / have you gently remind him of it it may help….

[Hilly]

Another month, another progress update.

 

My son seems to be continuing to improve, albeit slowly.  The sudden, deep drops in mood appear to have eased but he remains a distance from his 'old self'.  He is functioning well and there are few clues on the outside that he's struggling with anything.  On the inside, he's still experiencing anhedonia and has no sense of excitement from anything.  This has not shifted at all yet and is having a very negative impact on his quality of life.  Other symptoms include experiencing bouts of exhaustion and worries about re-starting work because he's still experiencing cognitive deficits with communication, memory and organisation.

 

My son's life is not back to where he was pre-psychiatry but he has got off very lightly compared with others on this site.  Beyond drug history, there appears to be an element of chance involved in who it hits hardest.  My heart goes out to those of you who are unable to function in anyway normally.  This is a terrible situation that most people are unaware of.  When I try to warn people, I feel they just see me as having fallen for a conspiracy theory - the scale and horror of the situation is so extreme.

 

Hilly

 

 

[Kaervin]

2 hours ago, Hilly said:

This is a terrible situation that most people are unaware of.  When I try to warn people, I feel they just see me as having fallen for a conspiracy theory - the scale and horror of the situation is so extreme.

Same. It comes down to how doctors are trained. If the medical literature says withdrawal from medication A lasts only X amount of weeks then a doctor will use that info as what "should" happen. That leads to many false diagnosis when we mention we have suffering or symptoms outside of the established literature timeline.

 

If the pharmaceutical literature were to announce the full scope of potential symptoms and duration, more doctors would be hesitant to put their patients at such a risk. Although I am not a cynical person, I am not naive enough to believe there is no financial motive on the drug manufacturers part.

 

Trying to convince friends, family, and doctors of our suffering can be very emotionally taxing.

 

As for your son, I would take notes of his improvements and good days so you can remind him of those whenever he gets into another horrible wave. Every wave feels like it'll be "the one" that doesn't end, but they always do. When we are at are lowest we tend to have trouble seeing the positive or overall picture of our recovery.

[Hilly]

Thank you for reminding me @Kaervin.  My son does seem to find it helpful to be reminded that everyone in withdrawal experiences the same feelings that things will never change.  Withdrawal is awful.  Because it's happening on the inside, it doesn't seem possible to 'step outside' of it to gain perspective.  It's so helpful to have this site and to know that people do come through this.

 

 

[ChessieCat]

I compare recovery to having a cold/flu.  I am currently getting over some virus at the moment which isn't covid and today is day 9 and I'm still not 100%, but I'm definitely feeling less fuzzy headed than I did yesterday, thankfully. 

 

When we have it we feel awful and it can be difficult to see improvement because we just feel awful and want to get better.  But if we compare how we feel on, eg, day 4 or 5 to how we felt on day 2 then there is usually something that has improved, eg I can breathe a bit easier, or I'm not as achy, but I still might have a fuzzy head and a cough and still feel awful, but things have changed.

 

Compare how you feel now to how you felt at your worst, not how you felt at your best or how you want to feel.

 

It is a good idea to learn and regularly use non drug techniques to lower stress.  When we are stressed the brain thinks the body is in danger so it diverts its attention to dealing with the threat in order to keep us alive because that is the top priority and recovery/healing processes are put on hold.

 

Non-drug techniques

[Hilly]

Thanks for pointing me to the 'Non-drug techniques' place, Chessie.  Lots of useful info there.  I will make some notes.

 

And, while I was there, I came across the thread on neuro-emotion - lots of mentions of people experiencing emotions such as powerful feelings of failure, regret and shame.  My son has been experiencing this.  It's good to know that this is 'normal' for withdrawal, and that it goes.

[Kaervin]

9 minutes ago, Hilly said:

And, while I was there, I came across the thread on neuro-emotion - lots of mentions of people experiencing emotions such as powerful feelings of failure, regret and shame.  My son has been experiencing this.  It's good to know that this is 'normal' for withdrawal, and that it goes.

He is definitely not alone in that regard. Once free of these chemicals we experience the resurgence of emotions that were once suppressed. It is alarming because 1. We forgot what it was like to have full access to our emotional side and 2. Our brain sometimes during recovery will overcompensate and leave us with very heightened emotions.

 

All this as our brain tries to reach the middle ground of homeostasis. Think of our emotions like the pendulum of a clock. The far left is dulled/suppressed emotions and the far right is heightened/sensitive emotions. The medications are like a hand that holds the pendulum to left. Once you remove the medication the pendulum will swing too far to the right and then too far to the left again several times until it reaches the ideal equilibrium of staying in the center.

 

Please continue to remind him that he is not alone with having these symptoms and to keep track of any positive progress he has made. Keep us updated too!

[Hilly]

Thank you Kaervin.  It is really helpful to have the knowledge that I've gained from this forum so that I can reassure my son from an informed point of view.  It's reassuring for me too.

 

I will keep posting updates.  It's good to have a record, but more importantly, to have the support.  We'd be completely at sea otherwise.

 

Hilly x

[Hilly]

Another quick update.

 

My son has had a period of things chugging along fairly well.  He has got a routine established and has been away on a walking holiday.  There had seemed to be improvements in his ability to motivate himself to do things.  His strength of character means he wills himself to do things but more recently it seemed as though the will-power/motivation balance had more motivation in it, if that makes sense.  Sadly, he is still experiencing anhedonia which is having a very negative impact on his quality of life.

 

Unfortunately, over the past week my son's mood has taken a slide.  He seems as though he may be more 'sensitive' too - and is clearly struggling a bit with communication and eye contact, as if it's too intense.  He is feeling the need to withdraw more too.  We have talked about this being a 'wave' and that it will pass but my son thinks it's a 'crash' and that this is the way things will always be (which is contributing to his low mood).  We have discussed that it is normal in WD to think things will last forever, but he is struggling to believe this.

 

It is clear that my son is struggling to accept that this is a thing that has happened and that it will get better.  He is dealing with grief for the life that he was living previously and sadness for the loss of the life that he believes he should be living now.  Add to that the crazy negative emotions that WD seems to throw up (shame, regret etc) and the mood changes that go with WD.  This is an awful thing to go through.  I wish we could fast-forward to a place where he has become accustomed to the rhythm of windows-and-waves and has seen some improvements and so has greater confidence in his direction of travel.  At the moment there's just me telling him that he will get better.  He doesn't seem to want to join a forum or WD group.  This may be the right decision at the moment.  When he does internet searches, Reddit, etc, he seems to focus on the negative material.

 

Here's hoping this wave passes off soon.

 

Hilly

[Ariel]

@Hilly

Sending you a big hug and all my admiration and respect for the way you are supporting your son!

He is lucky to have you. 

Remember to take care of yourself, too. It's not easy being a caregiver and a parent. 

Do you feel you have the support you need?

 

[Hilly]

@Ariel thank you for your kind words. Sadly, given the inconsiderate, unethical and unscientific way that these things are prescribed, there must be many families in the same position.

 

What my son really needs is for an expert to tell him that this is what is really happening and what to expect, to monitor his progress and to provide some non-drug support on the way. At the moment, he’s spending a lot of time blaming himself, using words like ‘weak’ and ‘lazy’. He is not a weak or lazy person at all but he almost needs a ‘diagnosis’ to be able to believe that his current condition could be down to withdrawal.
 

He says he has no ‘evidence’ that this is withdrawal. I think if you taper you know very well how your symptoms relate to the drug changes, but when you CT you don’t get that feedback. He needs an authoritative voice on the matter but Drs in the UK are still working with the disease/drug treatment model. Things are changing, with the Royal College of Psychiatrists statement and the changes to the NICE guidelines, but it will take a long time for this to filter down to practice.

 

Sorry for the rant. I’m beyond angry about how he has been treated and it’s all a bit close to the surface. We are both feeling abandoned with this.

The hug is very much appreciated. Thank you Ariel.

 

Hilly

[Mirtazapine20mg]

1 hour ago, Hilly said:

I think if you taper you know very well how your symptoms relate to the drug changes, but when you CT you don’t get that feedback.

Very good observation, I think. 

 

1 hour ago, Hilly said:

I’m beyond angry about how he has been treated and it’s all a bit close to the surface. We are both feeling abandoned with this.

Oh, you have every right to be angry. 

 

17 hours ago, Hilly said:

At the moment there's just me telling him that he will get better.  He doesn't seem to want to join a forum or WD group.  This may be the right decision at the moment.  When he does internet searches, Reddit, etc, he seems to focus on the negative material.

I have been there. I was also skeptical about the WD-groups. I was afraid it was tin-foil-hat-territory. The eye-opener when joining is that peoples withdrawal experiences are so similar and the WD experience to so brutal that there is absolutely no room for tin-foiling anything. People just want to get well. Your son is so lucky, that he has you in his corner. 

[Faure]

Sorry to hear he’s hit a wave. It sounds like he has been doing very well, even going on holiday.  After a lot of activity, waves can hit because people get tired / over tired. Is it worth finding some success stories to share with your son? 

[Hilly]

Another quick update.

 

My son seems to have perked-up again.  The dark look of doom has left his face and he is less withdrawn again.  That was, thankfully, a quick 'wave' (around 10-days-ish).

 

It's very difficult to know how much of this to attribute to withdrawal/cold-turkey, how much to any lingering impact from the original stress/distress, and how much to the massive changes in life circumstances that he is having to come to terms with.  I don't suppose it matters - what matters is that he's now on the side where healing and positive growth can happen.

 

Thank you so much for your kindness during this recent wobble @Ariel @Mirtazapine20mg and @Faure.  Sending you wishes for comfort and healing.

 

Hilly

[Hilly]

My son's mood is definitely dropping again and he's feeling withdrawn.  He is going away for a solo holiday and I'm a bit worried.  He's a grown man and needs to be able to be autonomous.  I get that and am trying to suppress my concern for him, so I'm expressing it here.  I'm sure he'll be fine - he's done plenty of travelling before - he just seems a rather fragile.

 

He told me recently that his internal view of himself is that he is completely unworthy and that he has felt like this for a long time - that it's like a 'belief'.  This is incredibly sad to hear.  Do these sorts of feelings/beliefs increase with withdrawal - maybe because of the anhedonia?  If so, do they pass?  He has had very low self-esteem for a long time - before the drugs.  He is seeing a therapist but they don't seem to have managed to have any impact on this.  Is this something that's likely to change, the further on he gets from stopping the drugs?  Is it likely that the anhedonia is preventing him from accessing the therapy?  He's a lovely person - I wish he could see this.

 

Thank you for letting me report here.  I really don't want to expose my son to any of my own anxiety - that wouldn't be fair.  Reporting here allows me to get my thoughts out which is helpful.

 

I hate psychiatry.  The least they could have done is to not make matters worse for him.

 

Hilly

 

 

[mstimc]

Hilly, its been my experience that recovery is very much like a roller coaster rather than a straight line.  Your son will experience windows and waves for a while.  We all have good days and bad; those of us with anxiety feel them more intensely.  Many people who have anxiety also have depression and feelings of low self-worth; they try to fight the thoughts and are then way too hard on themselves when the anxious thoughts persist.  I would encourage you and your son to seek a therapist who can work with him.  I was looking for one who could help me with my OCD and feelings of guilt, so I asked potential therapists for the experience with those, as well as WD and recovery.  Once I found the right one, he changed my life; he taught me CBT/ERP and held me accountable for practicing what I learned.  It took time, but I've been able to manage my anxiety and OCD very well for many years and lead a happy and satisfying life.  You and your son will too!

[Hilly]

Dear @mstimc

 

thank you so much for your kind and supportive response.  You're absolutely right when you say it's like a roller coaster.  I have spoken to my son about windows and waves and protracted withdrawal but he seems reluctant to believe that this is the case.  His NHS psychiatrist was of the opinion that any after-effects of stopping the drugs would be gone within 4-weeks.  This was in spite of me sending him the statement from the Royal College of Psychiatry on drug withdrawal which specifically lists the drug my son was on as a particularly problematic one to withdraw from (Duloxetine).  There is also a particulary common belief/narrative here that doctors know what they're doing and that, if you challenge this, you believe in conspiracy theories - this has been solidified by the recent narrative that the COVID vaccines and the policies that went with them were beyond examination and that to do so means you are an 'anti-vaxer' or 'anti-science'.  [I am not 'anti' the COVID vaccines - I'm sure they have saved many lives.  I am pro science and healthcare being open to examination.  This lack of ability to examine science/healthcare is what has got us all into this mess in the first place].  This anti-critisism narrative is very strong in the UK, and is very difficult to counter.  That said, my son does very gradually seem to be coming round to the idea that the drugs 'may' have had a role in what he is experiencing now.

 

Sorry, that was a bit of a rant.  I'm still trying to process my anger and grief about what my son has been put through.

 

Thank you for sharing your experiences with therapy and I am so pleased that you managed to find someone who could help.  My son has OCD and suffers bouts of anxiety so it is reassuring to hear that therapy can access these effectively, if done right.  My son is now open to finding another therapist for the next stage of his journey.  We found the current therapist in a panic, with no idea how you go about choosing a therapist.  The current therapist is fine and has been a touchstone through the hellish times, but now there is the time for my son to find someone who may be better suited to the challenges he faces going forward. 

 

Wishing you good healing.

 

Hilly

[Ariel]

@Hilly

Just came across your excellent comment to @Sofa here. 

Such a helpful, supportive post that benefits all who read it, including me. 

Thank you <3 

Thinking of you and your family and wishing you well,

A.

[Hilly]

Hi @Ariel

 

thank you so much for your kind comment.  I was a bit worried that my post was 'a bit too much' and too wordy for people experiencing withdrawal, so I'm very pleased to hear that you found it helpful 🙂.

 

Wishing you all the very best,

 

Hilly x