Friends, Family & Carers Forum

[AC_]

Hi all, first time posting here. There's a lot I'd like to talk about, but I'll start with this.

My brother (soon to be 18) had been using antidepressants for about 3 years. About a month ago, he decided to suspend treatment (without telling us). He did not take his meds for about a month and then decided to take them again. He says that this was the worst decision of his life, and he is convinced that this action has caused irreversible brain damage. I refuse to believe that that's true. He says there's lots of proof online to support his claim. Frankly, I'm afraid to look myself. But what concerns me the most is that he says that his depression and anxiety is at its worst, purely because he took the medication after having withdrawn. I agree that we should not play with antidepressants, but can they really cause brain damage?

He feels suicidal, and he says it's because of the medicine. But he's forgotten that he used to feel suicidal before he ever took any medicine to begin with. I've tried reminding him that things were pretty bad before, but he's convinced himself to he used to feel fine. I know how important it is to validate people's feelings, but it's factually not true. My family and him have been through hell for several years now. 

No matter how much we try telling him that a)things weren't as good before and b)that we're all working hard to help him as best as we can, he's absolutely convinced that everything was great before, and that he'll never ever feel any joy again (due to the single action of having taken medicine after a month of not taking them). I am constantly worried (and have been for years) that he will act out and take his own life. In my mind, I'm already thinking of how I'm going to cope with it. And that terrifies me. I love him so much.

I know a lot of us are struggling with helping our loved ones feel better (and we know just how hard it is to effectively communicate with them and for them to understand); so my main questions are:

Have any of you seen anything similar to this?

Is it common knowledge that antidepressants cause permanent brain damage and my family just did not know?

He's gone as far to suggest that a)my parents did this to him on purpose, knowing it would hurt him or b)my parents were careless and ignorant, when in fact they all went to the GP and the psychiatrist and none of them ever mentioned any side effects that bad.

Thanks for reading, much love to all

[TuxedoCat]

hey @AC_, welcome to the forums. I'm TuxedoCat, one of the peer workers here. Thank you so much for sharing your worries with us. There is so much going on for you and your family here, it's a really great thing that you're reaching out for support here. 

It is so understandable that you're super worried about your brother. It sounds like he's had a really rough time and is now struggling to remember any positive changes that have happened over time. I think the fact that you and your family are offering so much reassurance, love and care  to him is the most important thing you can do. I just wanted to acknowledge that.

And the internet can be such a beast, with massive potential for misinformation. I can only share some very top-line info I have and my own experiences too. I've got some suggestions below for you too ❤️ So, the top suggestion with stopping anti-depressants or any medication which changes brain chemistry, is to make changes under the guidance of a medical professional (more on this below) and this is because there can be side-effects from either stopping all together, or even tapering off slowly. The side-effects differ and can be dependant on the dosage and length of time someone has been on them. For example, I've been on mine for about 3 years and have been tapering off with the guidance of my GP for about a month now, with the dose getting lower and lower.. This helps avoid some of the more severe side-effects like "brain zaps", nausea, insomnia and increased anxiety ect. Some of my side-effects have been terrible sleep, tiredness, slightly increased anxiety and some brain-zaps and migraines. For some anti-depressants, side-effects can be long lasting. Most symptoms should stop when people re-start medication. I'm not saying that it's "brain damage", but side-effects can be very not fun. 

With your brother, it's important to balance legitimate info with affirming his feelings around the impacts of stopping medication. For example, if he feels there has been long-lasting impact, there are ways to get help through it. What kind of support do you and your brother have around you?

I also thought I'd make some suggestions, but please let me know if you've tried some

• Many of us have decided to stop our medication before, for many reasons and maybe cold-turkey or maybe tapering off. When others talk about stopping medication, it's best to find out why they want to stop and validate that. For example, that "we're better so don't need it" or "we don't feel like ourselves". Mostly, we just want to be heard when we have feelings like this. I'd gently encourage. a GP or psychiatrist appointment before making any changes.
• Can you go to a GP or psych appointment with your brother to get correct info, together? It might be good to have two peoples understanding of the info instead of just one. 
• Call H hotline? 
• Factsheet including where to get some useful info

[FloatingFeather]

Hi @AC_,

It's nice to have you on the Forums. My name is FloatingFeather and I am one of the peer support workers at SANE. I can see from your post how much you love and care about your brother - he is lucky to have a sibling like you.

I can only speak from my own lived experience but as someone that has been on and off antidepressants for much of their adult life I haven't had any permanent side effects. I do know from my GP that it is never a good idea to stop taking your medication suddenly and then to restart it again in the same amount prescribed suddenly. From my experience this type of medication can affect thinking, logic and reasoning. Whenever I have taken antidepressant or come off them I have always done it under a GPs supervision and always increased/decreased slowly as it takes sometime for you brain to adjust the changes.

Like @TuxedoCat said the internet is a minefield of misinformation and I believe should be avoided when researching around anything related to any type of illness. Having done it myself many years ago, the information I found only served to make my anxiety worse (and when I did go to the GP to discuss what was going on the information was also inaccurate so I worried for nothing). I really think the best place to find your answers for your brother is with professionals who work in the field. 

When you talk around your concern that your brother may take his life my heart went out to you. I have a family member that has a serious mental health issue and has (particularly in the first years when his professional team was trying to work out the best medication and treatment plan for him) often spoken of taking his own life. As his only support person outside his professional team it has been at times exhausting worrying about if he is going to try and harm himself. I am grateful (20 years later) that my family member is still fighting and doing his best to live his best life alongside his mental health issue - he is one of the bravest people i know. 

I would also encourage you and your other family to get support. As a support person I know that you also need support. When my family member was first diagnosed I was so busy supporting him I didn't realise that I was also going through a lot and needed support. This is a link to some information around carers https://www.sane.org/spotlight-on/families-carers/what-support-is-available-for-carers.

I really wish you, your brother and your family all the best.

Warm wishes, 

FloatingFeather 

[AC_]

Hi @TuxedoCat ,thank you so much for taking the time to respond, I really appreciate your words:)

Thank you for the link to the factsheet; the whole thing can be very confusing for me. I’m on antidepressants too (for about a year and a half now) but I have not experienced negative side effects yet (at least I don’t think). He went to a psychiatrist this week who recommended he go the medicine again, which he did yesterday. I hope it’s better this time, because my brother does not really trust doctors right now. I confess he makes very compelling arguments but I don’t want to believe them. We’re doing our best to get him to trust any new doctor (GP or psych he may see) but it’s hard because the one he has seen don’t seem to acknowledge what he’s going through, or did not explain the potential graveness of the side effects.

I’d like him to go to therapy, because I consider that antidepressants alone are not always enough. But he currently refuses (due to negative experiences with previous psychologists). My family and I are trying really hard to convince him.

We have not tried calling a hotline before; I’ll suggest it to him, though I think he’d need to work on trusting them first. At the moment, the support my brother has is me and my parents. He does not currently go to school and does not know anyone around here (we only moved here about 2 years ago) and it’s been extra hard for him since he doesn’t interact with many people outside of a house.

I met a worker who supports young men in their mental health, through support groups, volunteering, community walks, etc. I would love for my brother to try this, but it is very hard to convince him. Too many negative experience in the past have stopped him from trying these things.

I hope you’re well and that your side effects are getting better too; thanks for reading:)

[AC_]

Hi @FloatingFeather  thank you for telling me you don’t have any permanent side effects; I do my best to tell my brother that he won’t feel this way forever (maybe for a long time, but certainly not forever) but he does not believe me yet (fingers crossed he will soon)

We’ve been talking about it and he’s admitted that a big reason that made him decide to stop taking the medicine was reading all of these symptoms online. For years now I have resented a lot of things my brother has seen online. When I was a kid I didn’t have my own device, but making sure children and teens use the internet responsibly is sooo hard! He’s found too many upsetting things online. We’re trying to find a GP my brother can trust, because the ones he’s met have not been very empathetic. 

I hope your family member is doing alright, he’s so lucky to have you ❤️ Worrying about their wellbeing is so hard; we haven’t done this in a while, but when my brother’s mood was evidently upset, we’d have to hide all the sharp objects before going to bed and I cannot sleep thinking that he might hurt himself and I couldn’t stop it because I was asleep.

Thank you for the carers support link! It really is easy to forget to take care of ourselves as well.

Thank you for reading, hope you’re well:)

[TuxedoCat]

It's my pleasure @AC_ ❤️ Yeah, I think your brother isn't alone in having bad experiences. I know plenty of us have and it can take time to build trust with professionals. It definitely takes time after some poor experiences. And that mens MH group sounds awesome! Do you feel like it's something he could come around to eventually?

It sounds like you are so supportive of your brother and finding ways for him to access support. ❤️ 

[FloatingFeather]

Hi @AC_,

Hopefully with sometime your brother's mood stabilises a bit and he is able to think a bit more clearly. My experience with antidepressants (particularly when you first start taking them) is that your head feels a bit `cloudy' for sometime - I find that this does settle down although it does typically take about 2-4 weeks for the antidepressants to work well.

I think finding an empathetic GP that is knowledgeable about mental health is so important as it allows a person to feel comfortable to really open up without fear of judgement. This is a link with tips from the Black Dog Institute around finding a mental health friendly doctor https://www.blackdoginstitute.org.au/wp-content/uploads/2022/08/Finding-a-mental-health-friendly-doc.... Hopefully it might help a little. 

Warm wishes - hope you are doing well too 🙂

FloatingFeather