Hilly: supporting my son

[Hilly]

Hi,

 

I'm so grateful that this site exists.  Thank you to everyone who has set this up and to those who have contributed their experiences.

 

I am here to find out information to support my son with his encounter with psychiatric drugs.  I hope it's ok that it's me on the forum - my son is in a place where he is finding it difficult to process information.  I am not intending to influence any decisions he might want to take but rather to know where the information is if it is needed.  It has become very clear recently that we cannot rely on his clinicians to keep him safe.

 

My adult son experienced distress triggered by a relationship breakdown at the end of a long period of study and work stress.  He was was offered CBT but his therapist said he was too distressed to access the therapy properly and would need to have psychiatric treatment first.  His GP put him onto Citalopram and a couple of months later he attempted to take his life. Whilst hospitalised, the Citalopram dose was increased and he became increasingly suicidal until another psychiatrist swapped out the Citalopram for Duloxetine.  Over the following 9-10 months the Duloxetine was raised to a high dose and it was augmented with Apriprazole.  During this time my son became intensely anhedonic and his quality of life dropped considerably.

 

In November 2020, my son was taken off Duloxetine after experiencing intolerable side effects whilst on the drug.  The withdrawal from Duloxetine involved a step down from 90mg to 30mg for 1-week, then it was stopped and Agomelatine started.  At the same time, my son was signed-off to GP care.  My son experienced shorter term side effects of the withdrawal of the Duloxetine (brain zaps) but was not told that there could be any other effects.  When he arrived here for Christmas he was deeply fatigued, anxious, depressed and intensely suicidal.  My son managed to speak with his GP after Christmas and was referred back to the secondary care mental health service who had been managing his care previously. I don't think they have contacted him yet.

 

Over the Christmas period I came across information in the NICE (National Institute for Health and Care Excellence, UK) guidelines that explained that withdrawal from psychiatric drugs could cause severe problems and needed to be monitored so that the drug could be reinstated and tapered if necessary.  This is not what was done.  My son was discharged to GP care without monitoring and he was not informed about the possible medium- to long-term effects of withdrawal so had no idea what was happening to him.

 

I would be grateful if someone could tell me if swapping drugs (Duloxetine to Agomelatine) is a different matter compared with stopping a drug altogether?  Does the drug being started prevent withdrawal symptoms?  Would this have been why the clinicians made the decision to stop Duloxetine over such a short period?

 

My son feels it is now best that he just continues with the Duloxetine withdrawal as he is already part-way there (around 4-5 weeks).  Does anyone know how long any withdrawal effects might take to subside, and if there is anything he can do to help.  I don't think he is in a place where he could cope with splitting and weighing things.

 

Sorry for the long post.  There doesn't seem to be anywhere else we can go for expertise on swapping/stopping these medications.

 

Thank you for any advice you can provide.

 

Hilly

[Hilly]

Hello,

I could really do with some input as soon as possible.  My son is being contacted by the secondary care team and they will be making decisions about his medication going forward.  I am concerned that, with their apparent lack of knowledge about the potential longer term effects of withdrawing from antidepressants too quickly, that they'll simply decide it is relapse and will put him on more drugs when perhaps going back onto Duloxetine and tapering off would be safer.  My son and I just don't know - we have so little knowledge in this area.

I understand that it may be unusual for someone to post on behalf of someone else on this forum, but I would be very grateful if you would consider it.  My son could probably start posting himself in the future, but at the moment he says he's feeling as if he has been lobotomised and he would find being on a forum too challenging.

Thank you for any support or advice you can offer us.

Hilly

[Onmyway]

Hi @Hilly, 

I am so sorry that your son is suffering so badly. It must be so hard to watch a loved one be in so much pain. I understand your frustration and desire to help. While we do not usually work with loved ones of people going through withdrawal, I can point you to a few sources here to help you navigate this situation. 

 

I don't know how old your son is but  SSRIs are contraindicated in young adults as they increase suicidality [there is an FDA blackbox warning] and it seems like that happened in his case and 60mg of citalopram is way above the maximum dose of 40mg where it creates risk of heart issues. Why is he on two antipsychotics right now? Is he having psychoses? 

 

It is likely that your son is suffering from withdrawal effects from duloxetine and the agomelatine would not be covering the withdrawal from duloxetine - duloxetine is an SNRI and the aripiprazole is an antipsychotic (does your son have psychosis?). Agomelatine is another antipsychotic. In general even between antidepressants, discontinuing one and starting another one does not necessarily cover the withdrawal effects of the first one. 

Here is our information about reinstating: 

About reinstating and stabilizing to reduce withdrawal symptoms - Symptoms and self-care - Surviving Antidepressants

 

Of course, we can't really do anything about his care - we are not doctors. Here is a link to how you might approach the topic of withdrawal and tapering with your doctor. 

 

We don't know how long withdrawal lasts - it varies for people. Some people don't have any withdrawal symptoms, others have fairly short lived ones and some can have them for years. And withdrawal symptoms change over time - they get better and worse and better again in most people. 

Are We There Yet? How Long Is Withdrawal Going To Take? - Tapering - Surviving Antidepressants

The Windows and Waves Pattern of Stabilization - Symptoms and self-care - Surviving Antidepressants

What is happening in your brain? - Symptoms and self-care - Surviving Antidepressants

 

 

There isn't really that much we can do for withdrawal symptoms and we recommend only 2 supplements and discourage the use of other psychoactive substances like alcohol and pot which can further destabilize the nervous system.

https://www.survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

King of supplements: Omega-3 fatty acids (fish oil) - Symptoms and self-care - Surviving Antidepressants

Non-drug techniques to cope with emotional symptoms - Symptoms and self-care - Surviving Antidepressants

Important topics about symptoms, including sleep problems - Symptoms and self-care - Surviving Antidepressants

 

The important think to remember is that withdrawal gets better even in people who had severe symptoms. How long it will take, however, we can't predict for the individual person. 

Success stories: Recovery from psychiatric drug withdrawal - Surviving Antidepressants

 

Hope your son feels better soon and please let us know how you both are doing, 

OMW

[Faure]

So sorry to hear about this. The Royal College of Psychiatrists. https://www.rcpsych.ac.uk/mental-health/treatments-and-wellbeing/stopping-antidepressants.  Has new guidance on this at last. It's a disgrace doctors aren't up to date. Your son can share this information with his doctor. Wishing him all the best at this very difficult time.

[Hilly]

Dear @Onmyway

 

thank you so much for accepting me onto this forum and for your kind response.  My son and I are both feeling very frightened by the situation he's in.

 

My son is 30 years old.  They say Citalopram increases suicidality in under-25s, but biology doesn't work in age cut-offs.  I would have thought it's more likely that it's a slope with smaller numbers being impacted as age goes up - 30 is not that far away from 25.  Why aren't they exercising caution with these things?

 

The antipsychotic Aripriprazole was added to supposedly 'augment' the effect of the already large dose of Duloxetine that he was on.  This was because my son's depression is considered to be 'treatment resistant' and he was becoming increasingly depressed on the Duloxetine.  He doesn't have psychosis.  Is Agomelatine is an antipsychotic too?  From what I understand, it does something with melatonin and seratonin.  I need to do more reading on these.

 

I didn't mention before, he has Tourettes and OCD, which tends to come packaged up with depression.  He's had these since childhood and they tend to worsen together when his inflammation is raised for any reason, e.g. periods of stress, oncoming viral infection etc.  These are issues with the dopamine system - I don't know if this is guiding what the psychiatrists have been giving him?  Whatever their reasoning, he's never been worse than since he was started on psychiatric drugs.

 

I've had a look at the information you've sent on reinstatement.  It sounds like it might be worth a try with the Duloxetine, but looks like it needs careful handling.  Where would we start, given that my son's psychiatrists are in charge of his treatment?  We're in the UK NHS and don't really have the option to choose our psychiatric provider.  Is there some information that my son's psychiatric team might respect?

 

How do people take the power back into their own hands?  Would it be possible for me to find other people on this forum who are withdrawing from psychiatric drugs in the UK?  If so, how would I search for them?

 

Sorry, another long post.  I'm terribly worried and want to try to turn things around before too much damage has been done.

 

Many thanks for your support.  I feel less alone with this.

 

Hilly

 

 

 

 

[Hilly]

Thanks for that @Faure  I'll pass it onto my son.

 

Are you withdrawing in the UK?  If so, how did you get your psychiatric team to support your version of withdrawal, rather than theirs?

 

Best wishes,

 

Hilly

[Blossom71]

Hi Hilly

 

I’m not able to provide any help as I’m newish on my withdrawal journey, and am not familiar with the drugs your son is on, but I’m also in the UK and feel for you and your son.

I’m under the care of a GP who is pretty clueless so I'm pretty sure if I told him about my very slow taper plan he’d laugh. So I’ve come up with a  plan from information gathered from numerous sources and super helpful Moderators on here and I won’t be telling my GP. I don’t know whether that is the right approach for you (as your son is under a psychiatric team) but I feel much better - having armed myself with accurate information - to be able to take charge of my own destiny.

 

I hope you find the info you need x

[LHRG]

2 hours ago, Hilly said:

How do people take the power back into their own hands?  Would it be possible for me to find other people on this forum who are withdrawing from psychiatric drugs in the UK?  If so, how would I search for them?

 

There is a thread for people from the UK right there : Great Britain members, please check in here

 

2 hours ago, Hilly said:

The antipsychotic Aripriprazole was added to supposedly 'augment' the effect of the already large dose of Duloxetine that he was on.  This was because my son's depression is considered to be 'treatment resistant' and he was becoming increasingly depressed on the Duloxetine.  He doesn't have psychosis.  Is Agomelatine is an antipsychotic too?  From what I understand, it does something with melatonin and seratonin.  I need to do more reading on these.

 

Antipsychotics have a deep sedative effect. It can be used to reduce suicidality, but it comes with anhedonia, avolition and cognitive impairment. It can be a factor in your son's current condition. If you chose to taper Aripriprazole, I can only advise to be very careful : the withdrawal effect can be very strong, and given the situation, it is very important to go slowly not to add another burden to the situation. It seems like the priority is to stabilise the situation.

 

Best of luck to you and your son

[Faure]

20 hours ago, Hilly said:

Are you withdrawing in the UK?  If so, how did you get your psychiatric team to support your version of withdrawal, rather than theirs?

 

Yes I am in the UK. I followed my psychiatrist's advice two times - take half dose for a week then stop. Didn't work and I quickly successfully reinstated owing to WD effects. Then I tried skipping days and got v unwell (my first post on my own thread).  About 18 months later I started what I hope is my final go using the Brass Monkey slide (BM slide). I'm 6 months in now, only minor WD effects which are getting less and feeling better all the time.

 

Before starting the BM slide I chatted with my GP about how to get off. I met him when I was ill from slipping doses and really liked him. He suggested skipping days, I referred him to last time and he said I was in a better place now. Well, I was in a better place before skipping days before - really shows a lack off learning 😔. Then he suggested reducing by 1/3 at a time over several weeks. I said the only thing I was happy with was 10% drops a month. His reply "that will take ages". Anyway he agreed to support me but has now left the practice.

 

If anyone at the GP were to dispute what I'm doing I'd refer them to the new guidance and also ask if they are going to a) look after me if I become unwell and b) pay my bills while I'm unwell. What they prescribe/say doesn't affect them, but it certainly affects us. I don't think they have a leg to stand on going against the new guidance. But it is scary to stand up to doctors because ultimately they can stop prescribing. I just continue to order regularly and think a lot about calling them to check in and say I won't need as much meds, but I don't want a fight. I don't know what I'll end up doing, probably building up a huge stack of meds I don't need, which I don't want to do as it obviously costs the NHS money.

 

The doctor also wasn't happy about me making up my own pills, but given the doses available it's the only option. I bought jewelry scale, a pill grinder and capsules and follow the tapering plan, making up new pills every week.

 

I also think if you go with a well thought out plan it will help, work out in advance what you want to do and tell them about it. The really good news is you can use the guidance from the Royal College of Psychiatry which will go down a lot better than saying you found what to do in the internet. I think you've already been given links about taking to doctors 😊

 

Your son is going to need you there to advocate for him if he is as unwell as he sounds. Everything I read on here says don't add new drugs, and reinstatement works best within, I think, a few months. I am not experienced in this so please take advice from mods. They see this all the time and know how to help. If you want to reinstate duloxetine they will be able to suggest a suitable dose. To get help you need to type the @ sign followed by their name, then click on the name when it comes up. This tags them and they come along to help.

 

You asked if there is any information the psychiatrist will respect- he should respect the new guidance from his professional body that I linked to for you the other day. I hope he does.

[Hilly]

Dear @Faure

 

thank you so much for your advice.  It looks like the only way to do this safely in the UK is to be strong enough to take matters into your own hands.  Well done to you for doing that!  You sound like you're very much on top of things.

 

I was waiting until I'd spoken with my son before responding.  The news isn't great.  He's been reassessed (over the phone) by the secondary care mental health team - the people who whipped him off the Duloxetine too fast.  They seem to have concluded that his worsening of symptoms is a worsening of his original condition, rather than withdrawal symptoms and have decided they'll put him onto Mirtazapine.  I asked my son what they'd said about the possibiliy of withdrawal symptoms, and he said 'nothing'.

 

So, I've had a chat with my son about whether he wants to go onto another addictive medication, rather than withdraw as he'd originally wanted to.  At the moment he's only on Agomelatine (not a problem to stop) and Aripiprazole (potentially problematic to stop).  If he starts Mirtazapine, then he goes up to 2 addictive drugs.  He said he'd try anything if it gets him better.  His symptoms are pretty severe and he'd afraid there's nothing else if he doesn't keep going with the drugs.  He's going to have a think about what he wants to do.  If he does decide to go ahead with the Mirtazapine, then I'll pause posting here until he's ready to taper off whatever he's on.

 

When I contacted the patient liaison team at the hospital treating my son (9-days ago) I had hoped someone might have taken my concerns seriously and would have tried reinstatement of the Duloxetine at a lower dose to taper off more slowly as outlined in the leaflet from the Royal College of Psychiatrists.  The PALS team said the clinical team would be in touch, but they haven't yet.  Do you know if there is a point at which it is too late to try reinstatement?   @Onmyway can you help with this?

 

Thank you so much for being here.

 

Hilly

 

 

[Hilly]

Hi @LHRG and thank you for your kind response,

 

Thanks for pointing me to the link to find UK members.

 

And thank you for the information about Aripiprazole.  The anhedonia is the symptom my son is finding most difficult to deal with.  I didn't know that Aripiprazole promoted it.  I see that you have experienced anhedonia too, and I'm sorry that you had to go through that.  Did the anhedonia lift for you as you weaned off the medications that were causing it?

 

My son is on 5mg Aripiprazole and currently isn't aware of how difficult it can be to come off.  I'll try to support him with this when he comes to it.  One step at a time.

 

All the best to you,

 

Hilly

 

[Hilly]

Hi @Blossom71

 

thank you and I'm wishing you well on your journey off these nasty substances.

 

Hilly

[Hilly]

Sorry, another post.  I've just seen this:

 

Quote

 

Antidepressant Discontinuation Syndrome DSM-5 995.29 (T43.205A)

Initial encounter 995.29 (T43.205A)

Subsequent encounter 995.29 (T43.205D)

Sequelae 995.29 (T43.205S)
 

Antidepressant discontinuation syndrome is a set of symptoms that can occur after an abrupt cessation (or marked reduction in dose) of an antidepressant medication that was taken continuously for at least 1 month. Symptoms generally begin within 2-4 days and typically include specific sensory, somatic, and cognitive-emotional manifestations. Frequently reported sensory and somatic symptoms include flashes of lights, "electric shock" sensations, nausea, and hyperresponsivity to noises or lights. Nonspecific anxiety and feelings of dread may also be reported. Symptoms are alleviated by restarting the same medication or starting a different medication that has a similar mechanism of action - for example, discontinuation symptoms after withdrawal from a serotonin-norepinephrine reuptake inhibitor may be alleviated by starting a tricyclic antidepressant. To qualify as antidepressant discontinuation syndrome, the symptoms should not have been present before the antidepressant dosage was reduced and are not better explained by another mental disorder (e.g., manic or hypomanic episode, substance intoxication, substance withdrawal, somatic symptom disorder).

 

 

 

(see blue text) Could this mean that, instead of reinstating the Duloxetine and then tapering, my son may as well take the Mirtazapine and then taper?  Would this stop the Duloxetine withdrawal effects, then he could taper from there?

 

Thanks,

 

Hilly

[Faure]

1 hour ago, Hilly said:

They seem to have concluded that his worsening of symptoms is a worsening of his original condition, rather than withdrawal symptoms

This is what doctors always say. Sadly they don't know about withdrawal. I have read many threads on here and it seems to be that adding another drug to an already upset nervous system makes things much worse. If you have a read of other threads you may notice the same thing.

 

Mirtazepine, which I'm tapering from, is very difficult to get off.

 

I will leave it to experienced mods to advise you what would be best, but from what I read on here, reinstatement of the original drug, asap and within 3 months (I think) in a small dose (to be advised by mods) seems to be the only thing that works.

 

Do encourage your son to come here himself for advice. It's the best place to get it, from people who understand and have been through it themselves.

[Kiasofia]

Hi @Hilly

Trying a different drug, is unpredictable and there are many on the forum struggling with the effects of mirtazapine. The most likely drug to succeed in alleviating withdrawal, is the drug one is in withdrawal from. Mirtazapine (an atypical antidepressant) and Duloxetine (an SNRI) are different types of drugs.

 

Agomelatine should be tapered (as well as Aripiprazole):
Tips for tapering off aripiprazole (Abilify)

Tips for tapering off Valdoxan (agomelatine)

 

I'm so sorry for all you are going through and commend you for trying to help your son through all this. I find knowledge, though upsetting, is necessary to avoid being gaslighted by medical professionals. Here are some links that I hope can be helpful:
How do you talk to a doctor about tapering and withdrawal?

http://cepuk.org/

https://www.madintheuk.com/

https://www.antidepressantrisks.org/

[Faure]

48 minutes ago, Hilly said:

Symptoms are alleviated by restarting the same medication or starting a different medication that has a similar mechanism of action

47 minutes ago, Hilly said:

 

I'd follow the first part of this sentence, it's the safest option.

[Hilly]

Thank you @Faure and @Kiasofia

 

So, it sounds like we need to try to persuade my son's psychiatrist to reinstate the Duloxetine.  My son threw away any he had left.  He was on 90mg, then 30mg for 1-week, then off.  This was in November.  What sort of dose would be good to try for reinstatement?

 

I'd love for my son to engage with this forum himself but he's really not in a place where he can process information.  If we can get him stabilised, then I'll have a go at getting him to join the forum - then I can leave it to him from there.

 

Do you know if there is any way that we can get hold of tapering strips in the UK?

 

Thank you for your support.  It's so helpful not to be alone with this.

[Kiasofia]

Reinstatement also has risks. It can help, but it can also make things worse. Or have no effect. It also gets more complicated when the person is on other drugs. I tried to do a drug interaction check, but I think the site is American and therefore Agomelatine didn't show up. But Aripiprazole+duloxetine has a moderate warning. And I suspect combining all three drugs is risky. If he decides to add in mirtazapine that could also cause drug interaction symptoms.

https://www.drugs.com/interactions-check.php?drug_list=233-0,949-0

https://www.drugs.com/interactions-check.php?drug_list=233-0,1640-0

The important thing with reinstatement (or starting anything else) is to take a very low dose. If it's the duloxetine with beads in a capsule, one can open it and take 5 beads. This thread has more information about duloxetine:

Tips for tapering off duloxetine (Cymbalta)

 

In your sons case it is also hard to know if he is in withdrawal or reacting to the drugs he is taking now. A way to assess this is to keep a symptoms journal:

Keep daily notes of drug schedule and symptoms to track patterns and progress

 

It is very important to take the different drugs at their set times each day, both for stability and to be able to see if there is a drug reaction happening.

 

If possible, rather than complicate the picture by adding in a new drug or reinstating, try to assess if the current drugs are causing any of his symptoms and make a plan to reduce the dose/get off them.

 

We don't suggest many supplements, because a sensitized brain can react unpredictably, but two that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. It is suggested to add one at a time, and start with a low dose to see how one reacts. I would start with magnesium, as I personally find it calming. Epsom Salt baths can also be soothing.
Magnesium 

Omega 3 Fish Oil

[Hilly]

Thanks @Kiasofia

 

So, if my son wanted to reinstate some Duloxetine to see if he can reduce withdrawal symptoms, then he'd need to stop the Agomelatine.  Agomelatine supposedly has no significant withdrawal effects (?).  He'd stay on the Aripiprazole for the time being.  Is this a better plan than just sticking out the Duloxetine withdrawal effects?  I'm just wondering whether that would entail fewer additional changes.

 

Also, how can we be sure that the symptoms my son is experiencing are withdrawal and not relapse?  Or both?

 

My son is taking acetyl-l-carnitine, fish oil, magnesium, and NAC, and sometimes some CBD oil.

 

Hilly

[Kiasofia]

14 hours ago, Hilly said:

So, if my son wanted to reinstate some Duloxetine to see if he can reduce withdrawal symptoms, then he'd need to stop the Agomelatine. 

I don't know how they will interact, but drug cocktails complicate things. There are people who struggle with Agomelatine withdrawal, just like with all these drugs. Some can easily quit and some cannot. Always make a small reduction first, to assess how the body reacts, and proceed based on that.

 

14 hours ago, Hilly said:

Also, how can we be sure that the symptoms my son is experiencing are withdrawal and not relapse?  Or both?

 

Withdrawal or relapse? Or something else?

 

It seems your son was reacting to a life situation and then psych drugs made it all much worse. This is all too common, but rarely recognized by medical professionals. Anatomy of an Epidemic by Robert Whitaker (interview) explains it well.

[Hilly]

Quick update on my son's situation.

 

My son has made the decision that he would like to wean off his current medications, rather than switch to the Mitazepine offered as a switch by his psychiatrist.  Unfortunately, he has decided to allow his psychiatrist to manage the tapering process.  I absolutely respect his decision, but am worried given how quickly they took him off the Duloxetine recently.  If it's ok, I'd like to stay on the forum for a bit longer, just in case there are any hitches?

 

It sounds like they've dropped him straight off the Agomelatine in the last week.  The belief in UK psychiatry is that it doesn't induce withdrawal symptoms.  My son says he's ok.

 

I'll update if there are any further changes to his medication or condition.

[Kiasofia]

Hopefully he won't react badly to quitting Agomelatine. Some are able to and some are not. Ideally he should wait at least a month (preferably a few months) before tapering Aripiprazole. To see how he reacts to having quit Agomelatine and to continue recovering from duloxetine withdrawal.

 

You're welcome to keep posting, though there is not much we can do unfortunately.

 

Hoping for the best❤️

[Hilly]

Hi @Thelongestroadhome

 

thank you so much for sharing about your son.  You will know how delicately balanced is the wellbeing of people with TS and the related conditions.  Good for you for refusing medication for your son.  I was lucky in that my son's tics are relatively mild, so he wasn't offered medication when he was a child.  I hope I would have refused if he had.

 

I'm doing lots of reading about withdrawal.  I want to be available to support my son off these drugs safely, if he needs it, so that there aren't any long-term effects - especiallly as I suspect his TS may add a complicating factor to the process.  He was prescribed an antipsychotic to 'support' the action of the antidepressant.  My reading suggests antipsychotics are extremely difficult to withdraw from - even at a low dose.  My concerns with my son are that antipsychotics are designed to interfere with dopamine signaling, and dopamine signaling is the underlying issue in TS.

 

Be gentle with yourself.  You're not a hypocrite by going back onto medication.  You need to do what you feel is the best thing for yourself under your particular circumstances - and you've gone back onto them from an informed position, which puts you in a much more powerful place.

 

Hilly

[Hilly]

I've received an invitation to a consultation with two of my son's doctors and my son.  I'm going to ask my son what he would like as his preferred outcome to the meeting when I speak with him later, and I intend to support this.  If my son is happy for me to talk with his doctors about how his withdrawal will proceed, these are my thoughts.  I'd be grateful if anyone has anything to add.

 

This is regarding withdrawal from the Aripiprazole 5mg.

 

• Encouraging a form of collaborative working whereby my son engages with a withdrawal forum or group so that he can discuss informed preferences with his doctors to guide the process
• Employing a cautious approach guided by symptoms
• Hyperbolic tapering (I'll ask if tapering strips might be available)
• Very small reductions, then pause and assess response
• Possibly waiting for a month to be sure that there aren't any lingering effects from being withdrawn from the Duloxeting and Agomelatine so fast recently

Let me know if you think there's anything else that it might be useful to add to the conversation.

 

Thanks,

 

Hilly

[Hilly]

Hi @Kiasofia or @Faure,

 

I'm thinking ahead about potentially having the opportunity to talk withdrawal schedules with my son's doctors (see last post).  I've just downloaded the Excel taper spreadsheet and have completed it for a 10% per month taper from the 5mg Aripiprazole/Abilify and it looks like the process will take 5 years.  I think it is very unlikely that my son or his doctors will accept a withdrawal schedule lasting that long.  The doctors are likely to say withdrawal can be done in a few weeks.  I think I'd need to go to the meeting with a compromise position.  Is it considered ok to go a bit faster and then assess symptoms to see if my son is likely to do better with a slower taper?  If so, do you have any thoughts about what I could suggest?

 

I note that the Tapering Strips seem to taper off at a much faster rate  https://cdn.taperingstrip.org/presordfrm/antipsychotics/ARPP_bestel_GB.pdf

 

I'm grateful for any advice you can provide.

 

Hilly

[Hilly]

Hi @Kiasofia or @Faure,

 

Really angry.  I've just spoken with my son.  His doctors have taken him straight off the Aripiprazole 5mg with no tapering.  So, in the last couple of weeks they've dropped him straight off Agomelatine and Aripiprazole, and this is on top of taking him off Duloxetine over 2-weeks in November.

 

My son is sounding very anxious and that he feels completely hopeless and says he doesn't want to do anything other than just stay in bed.  He said the way he feels now is the same as the way he did when he was on the drugs, so he doesn't accept that there have been any withdrawal effects.  I think he's much worse, and has been so since they took him off the Duloxetine.

 

I don't know what to do about the meeting with my son's doctors on Wednesday.  I had hoped it would be about taking him off the medications safely, now I don't know what his doctors have in mind.  I'm worried that they are going to say that the worsening of my son's symptoms since November means that he needs to go back onto medication.  They're clearly in complete denial about withdrawal symptoms.

 

I'd be really grateful for any thoughts about what to expect and we can do in this situation.

 

Should reinstatement be considered?  For how long is reinstatement an option?  How do you manage reinstatement when so many drugs have been stopped over such a short period?

 

Is there anything else we can do?

 

Hilly

[Kiasofia]

I'm sorry to hear this is being managed so poorly. I'm not sure that any advice from us can help since the doctors are just doing their own thing anyway. Quitting duloxetine is known to be very difficult so a small dose reinstatement might help. But with this many changes it will be hard to tell as he might be getting withdrawal symptoms from quitting the others. It can also take a few weeks for the effects of reinstatement to take hold.

 

19 minutes ago, Hilly said:

I'm worried that they are going to say that the worsening of my son's symptoms since November means that he needs to go back onto medication.  They're clearly in complete denial about withdrawal symptoms.

Can you print out and bring some of the articles from the top of this post? How do you talk to a doctor about tapering and withdrawal?

 

[Hilly]

An update:

 

I have updated the signature to explain that it has become apparent that my son made the decision to stop the Aripiprazole abruptly 4-weeks ago and that the Duloxetine was reduced to 60mg at the end of October before stopping and starting the Agomelatine.

 

The meeting with my son's clinicians went as expected.  The doctors denied that the rapid medication changes over the past 18-months, and more recently, are likely to be contributing to my son's current condition and that more drugs may be unhelpful.  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.

 

The doctors had pre-met with my son and offered him a list of medications to go onto next.  I asked whether they'd be open to a second opinion on whether my son's current condition might be somewhat explained by his drug history.  The consultant initially showed reluctance and my son said he didn't want to complicate things (he looked completely exhausted and defeated).

 

I do understand that this is a withdrawal support forum so it is not appropriate for me to continue asking for support if my son does choose to take more drugs.  I would like to keep updating this thread for my records, for the time when my son may want to withdraw, but I will leave this decision for the Moderators.

 

Thank you for what you do and for the support that you have given me in this frightening situation.

 

Hilly

[Kiasofia]

I'm sorry to hear this, but not surprised. So at the moment he is taking nothing? If that is the case then the least harmful drug route with some chance of improvement would be low dose reinstatement of Duloxetine. Since it's one of the harder ones to taper when the day comes to do that, fluoxetine can sometimes work as a substitute for reinstatement, but ideally the drug one is in withdrawal from should be the one reinstated.

About reinstating and stabilizing to reduce withdrawal symptoms
 

If possible:

reinstatement of duloxetine or fluoxetine starting at 1mg (he is at risk of reacting badly to regular doses due to being taken on and off drugs - kindling)

no other drugs (polydrugging worsens outcome)

 

I think it is fine that you journal what is happening and the madness of how doctors deal with these drugs. I wish we could actually help your son and wish you all the best and better times ahead❤️

[Hilly]

Hi Kiasofia,

 

my son is off everything now but is in pretty bad shape.  On the upside, he has decided he would like a second opinion so I've booked him in to see a psychiatrist privately who has a lot of experience with the safe deprescribing of psychiatric drugs. This psychiatrist should be able to provide an informed opinion on whether the decline that my son is experiencing is withdrawal or some sort of a relapse that would benefit from treatment.  The decison on whether or not to start more drugs is up to my son.  I feel that at least my son has a broader range of information from which to make his decision.

 

This guy is a psychiatrist so he too may recommend further drugs, but at least I feel we will have an opinion from someone familiar with drug withdrawal symptoms.

 

Thank you for letting me keep up a record on this forum.  It will be helpful if the outcome is that my son continues off the drugs, or if he decides to withdraw from something else in the future.

 

All the best,

 

Hilly

[Hilly]

The consultation with the other psychiatrist was reassuring.  He said that if my son wanted to try going without psychiatric medications that this wouldn't set him back in any way.  My son's main psychiatrist had insisted that he would lose ground if he didn't start more drugs immediately.  Unfortunately, the psychaitrist giving the second opinion couldn't confirm that my son's current symptoms were completely due to withdrawal because there had been so many quick drug-changes in such a short space of time, so the picture was complicated.  He said he thought because of this it might be risky to attempt any reintroductions.  We're waiting for his final letter but these are the main things I got from the meeting.

 

My son is still in pretty poor shape.  He's experiencing fatigue, exhaustion, lack of appetite, dizziness, anhedonia, anxiety and low mood and has said he has experienced some skin and joint sensations but these might be the result of the cold that he's suffering from at the moment.  He is planning to move home to recover but is not planning to do so for a few weeks yet - he's had to give notice to his accommodation.  I think he'd be better off here now.  I think he's falling into a slump - he says he just wants to stay in bed.

[Hilly]

There seems to be nothing we can do now other than watch and wait and hope my son's symptoms improve and don't get worse.  Neither of us has any idea what to expect. It's very worrying.

 

Hilly

[Kiasofia]

Have you read this?

 

Are We There Yet? How Long Is Withdrawal Going To Take? - Tapering - Surviving Antidepressants

 

Might be of some help. At least your son isn't being pushed to take more drugs.

 

All the best❤️

[Yesyes123]

On 1/3/2022 at 11:32 AM, Hilly said:

When he arrived here for Christmas he was deeply fatigued, anxious, depressed and intensely suicidal.

 

Hello!

This is a very common state of mind brought on by psychiatric drug withdrawal syndrome.

Please be aware this is not who you truly are, and you will definitely not remain in this mental state forever - with some luck, not even for too long.

 

Time is the best healer when it comes to problems caused by psychiatric drugs.

Each person reacts differently, so it might not be a good thing to compare your situation to other people's here on the forums.

 

You might heal much faster than most people.

Sending you peace and healing.

[Hilly]

Dear @Kiasofia thank you for the link.  Very helpful if somewhat terrifying.  I guess I've got the choice to know this information or have it come at me out of the blue if things go badly.  I'm desperately hoping that my son will be one of the lucky ones who gets through without long term problems.

 

Thank you for the words of hope @Yesyes123.  I appreciate the reassurance that this is 'normal' for withdrawal.

 

My son is not yet in a place where he's ready to learn more about psychiatric drug withdrawal.  I think he's afraid that reading about symptoms will cause him to manifest them.  I want to be cautious about pushing him too hard to find out more because I'm not sure he's resiliant enough yet - there's a lot of alarming stuff to take in.  If he was tapering, he'd need to know sooner how to do this, but as he's gone cold turkey, support can be built up as it is needed.  And, I'm hoping he's one of the lucky ones...

 

Thank you again.  You are doing a good thing here.

 

Hilly

[Kiasofia]

Most people do heal❤️ I think it's good that you have some knowledge so you know what to look out for, but agree it's not something your son needs to focus on at this time.