To have stopped psychiatric meds and to avoid doctors?

[ProzacAndWine]

Okay, I kind of think I am a bit U. But no one around me has really been telling me I am, so I guess I'm asking for opinions.

I have a long history (20+ years) of various MH issues, various diagnoses (various anxiety diagnoses, BPD, eating disorder, depression, a dissociative disorder etc), but mostly these days lumped under a Complex PTSD umbrella. I've been very unwell at times in the past, but mostly I'm sort of functioning these days, despite lots of symptoms and quite a quiet, careful life. In the past I used to see a psychiatrist, a CPN and had NHS therapy, but haven't "qualified" for any of these for the past 8 years. I do see a private counsellor, though, luckily!

The past few years have been a constant cycle or either a GP or some other professional insisting that I need to see a psychiatrist and be under proper care, referring me for assessment, me having the assessment, and being told I don't qualify. I'm not quite sure how many times this has happened recently. The "lower level care" isn't available for me, because my diagnoses are deemed as too complex, and I'm not acutely unwell enough for the higher levels of care, so really I'm just thanking my lucky stars I can pay for the private counsellor, as that's all I have. My GP is lovely and tries to help, but she keeps insisting she wants to keep referring me, and I'm sick of it, so have stopped seeing her, really. The assessments are horrible, and always leave me doing much worse for quite a while, and the rejections feel very invalidating, when you've "bared your soul" to a stranger.

Now, one of my voices has always kept insisting I should not take medicine and not see my GP and generally not talk about my mental health. I've given in. I've not seen my GP since November-ish. I've stopped my anti-psychotics and my anti-depressents. DH seemed mildly concerned and told my GP, but I've reasoned with them both it's to do with side effects (which are a real issue), and that really I'm fine, and if I feel worse I'll start them up again. I have no such intentions. I think it's mostly to do with the voice being childish, and there being some "if you're not going to help me, I won't help myself" feeling, which I know is very stupid!

I'm suddenly questioning myself. I had a physical health issue and had to see a paramedic this week. Turns out the same paramedic has met me in the past while I've had a bad dissociative crisis, although I don't remember when this has been. He seemed EXTREMELY worried to learn I had quit my medications and still wasn't seeing a psychiatrist. Honestly, he's been the first person who's reacted like this, and it's shook me. Everyone else has been making little murmurs, while telling me that really, it's my choice, and to do what feels right for me.

I don't really know what to do. Since I've stopped the medication, I've stopped gaining weight and stopped feeling like I'm in a stupour half the time. On the other hand, depression is starting to swallow me up, I'm withdrawing from friends and hobbies, and generally don't feel well, physically or mentally, and I have more compulsive behaviours (skin picking at an all time high, for example). I think I'm starting to drink too much. But going back to the GP and starting meds again would feel like "giving in", rather than a healthy decision to make for myself. The voice is absolutely raging against the idea, whenever it pops in my head. (For what it's worth, none of the medications have ever really affected whether I have the voices or not.)

If I go back to the GP, do you think I can refuse another referral? I know for a fact it would go exactly like the previous ones, and would only result in another refusal.

Sorry for the rambling. Thanks if you bothered to read.

The voice telling you to dis-engage is not your friend, and is not acting in your best interests. Ignore it, just like you would ignore someone IRL who gave you such bad advice.

Please see your GP. You’ve had a lot of awareness to post this here which is actually really positive. I’ve got a relative with schizophrenia and most of her worst episodes have been as a result of stopping medication when she’s felt fine. It has had a devestating impact on her and me each time that habit of stopping has happened. Everytime she did it, she started a cycle of deterioration. Sometimes it was rapid and others it took months of her mental health deteriorating before anyone helped her.Some medication is extremely dangerous to just stop. You should be receiving better support and it is a disgrace that people have to struggle to get the services they need.

Thanks again all. Had lunch in the cafe down the street with DH and had a little talk. He agrees he thinks I'm more low recently, and thought going back to the GP is good. I've now booked an appointment for next week. (My GP surgery is pretty great compared to what I read on MN. Usually pretty easy to get an appointment with the person you want.)

pardharty - just actually realising how muddled up I am! I WAS referred to what was supposed to a trauma specialist for EMDR, and he was actually the last person last year to decide not to treat me due to being "too complex" last year - so the last referral (which lead nowhere) was actually from him, not my GP like I thought. I do have documented memory issues, but not quite sure how this slipped my mind!

The private counsellor I see isn't trauma specialised, but seems to have a good grasp, and though often things seem like just fighting fires and it all being supportive rather than hard work, I do feel she understands my issues very well, luckily.

Just a suggestion OP, but with the weight thing - Venlaflaxine is a major anti depressant but isn’t associated with weight gain or lethargy usually.

Thanks Mightymucks - I'll ask about that.

I'm in a similar situation to you - I've had MH problems for decades and due to funding issues I seem to slip through the net. I'm not chaotic enough to get intervention from psychiatry and too complex for other services such as CBT. So I'm stuck taking anti-psychotics, antidepressants, anxiety meds, benzos occasionally. My mental health problems have led to a physical problem which will kill me eventually but because it's not in the next few minutes like suicide it is ignored. The AP made me put on five stone which I've only lost in the last year (after being obese for a decade) and they make me tired even after 15 years. But if I stop taking them then I'd either be dead or sectioned and I have children so it's not an option.

Could you try a different AP? I'm surprised you were considered too complex for EMDR - they are usually trauma specialists? I too have CPTSD with one of the worst trauma histories many mental health professionals have come across and EMDR was really helpful for me.

Good luck with the GP - if you aren't on the meds you won't be aware of the seriousness of your MH problems or (like me in that situation) you simply won't care.

Sorry you're in the same shit, JJXM - I was very disappointed and felt very "too broken to fix" to be rejected by the EMDR specialist, too, especially since it was a very long waiting list. I think his reasoning was that as he worked within the primary care, he wouldn't be able to provide treatment for long enough, and thought it would likely just make me worse before having time to make me better.

I really do feel for you....unfortunately this is so common now its become impossible for anyone to receive any help for mental health issues - which are ALL complex (How can you be too complex??)everyone is different regardless of diagnosis - people suffer differently because people ARE different!

I don't blame you one bit for disengaging with services right now, they seem to be adding to your anxiety - (you mentioned you started drinking a bit too much? Your self medicating - you need to be very careful around this especially considering what your struggling with).

I personally think you need to try and ground yourself emotionally so you can be in a better place to start re-engaging with people (GP's are only a referral point IMO, alot really don't and can't understand many mental health issues without generalizing, which isn't helpful one bit) but at your own pace and on your own terms - if you need help you should be getting it! But from the right place/people - and with the correct medication (I'm also not a fan of anti-depressants - they're wrongly prescribed to people with people with PTSD and can aggravate anxiety).

Have you heard of Transcendental Meditation?

I think this would be so beneficial to you right now - it changed my life. I too suffered PTSD, severe anxiety, an eating disorder...pretty much a lot of what you mentioned -

It gave me the tools, courage and peace of mind to seek further help - say no to professionals when I thought they were wrong, and ended up getting the right support from the right people -

'Straight to meds' is only masking a problem that needs fixing - they should really just be used as a tool to enable you to get the treatment you need - CBT is useful also - If you read, 'The power of now' by Eckhart Tolle - also changed my life.

I hope some of this is helpful x

Has anyone suggested contacting the Hearing Voices Network? They can be really helpful in providing information and support for managing the voices www.hearing-voices.org/

Thanks for the tips. I've had some help from Mind in the past, and have looked into the hearing voices charity as well, as well as many other charities. They're usually very good for providing information, but I'm at the point where I feel I have too much information, not that I don't have enough. There's a lovely local general support group that have supported and helped me over several years, luckily. It's one of my worries at the moment, that I've withdrawn from them and their activities.

The drugs you listed as having been tried so far are basically just entry level SSRIs plus Promazine, which is very sedative. None of them are much good as anti psychotics, which is what you need if you’re hearing voices, and they’re only about 35% successful as anti depressants.
Please see your GP and get a consultant psych referral. A proper review of your meds, and a trial of either a stronger antidepressant or an anti psychotic or both, could make a world of difference for you.
If you continue unmedicated, your mental health is likely to worsen, and be even more refractory to treatment when you end up with a crisis intervention.
Seeking a referral is not “giving in”, it’s the sensible adult thing to do to improve your health and well-being.
Sending a hug, and my best wishes and prayers that you manage to access effective treatment.

Babdoc oh no, I just meant those are the antidepressants I've been on. I've tried quatiepine and olanzapine in the past, too, and would absolutely not consider going back on either one of those.

Please see your GP and get a consultant psych referral

I really don't see how this is a valid suggestion, after I've just detailed how my many psych referrals have gone. For some of them I have been in much worse condition than now, and they still don't think I qualify after an assessment. The GP can't refer me straight to a psychiatrist in my area (they've tried) - it's only the secondary care assessment team that gets to decide that.

Just to clarify - quetiapine/olanzapine didn't affect my voices, either. The promazine was initially prescribed for intense anxiety and agitation, which was making all my other symptoms worse. Low levels of diazepam have no effect on me, and they don't want me on higher doses, as I have a history of longterm use. It also helped with insomnia, as similar history with sleeping tablets as diazepam.

i had an assessment and was told i was too well, so i took a mental health advocate with me to the next assessment (as gp was saying i was very unwell )- saw same guy
i had a pdoc appoint within 2 weeks.
so please try and take someone with you preferably from a mental health charity.

ProzacandWine I also have longstanding diagnosis of BPD and been told I have complex trauma from my childhood, although no formal diagnosis of CPTSD (but ut has sort of been suggested the BPD is linked to CPTSD) and have been through the same revolving door of being discharged from MH services (who say since I have had DBT in the past that they can't help me anymore) and back to GP again, whilst my lovely GP tries to push referrals through. Have also tried IAPT but been told my issues too complex. I am at the point where I am sick of doctors and MH services. The last two experiences I have had with MH made me worse, so am not trying to pursue any further help.

I wish I had some solutions for you. I think maybe the MIND advocate another poster suggested may be helpful? I wish you all the best. FWIW I do not think you should come of your meds but at the same time I understand whay you may want to.

Big UnMumsnetty hugs to you and have some

For me, I found Duloxetine (Cymbalta) very helpful. Hated Olanzapine, made me very unwell and exacerbated my PCOS and blood sugar issues.

JXXM I was offered EDMR at one stage but the therapist was a man and even he admitted that would not be suitable and I would have to wait for a female. For some reason, even being desperate for help, I still felt ambivalent about EDMR though. I never did go through with it.

ProzacandWine Too broken to fix yes, I know that feeling well. And the sense that maybe MH services are sick of the sight of me anyway.

Could you try an antidepressant without the antipsychotic? Might avoid feeling poleaxed and the weight gain? Doesn't sound as though the antipsychotics were helping with the voice hearing either. The withdrawal from your friends and hobbies is not ideal. If your mood lifts, it might help you process what you need to do to keep yourself in a good place. What does your counsellor say?

I wonder if you have a pharmacist in your area who you ca talk to. Our CCG has a pharmacist linked to the surgeries who can talk to people who are having problems with side effects/poly pharmacy and when I was working on a mental health ward the pharmacist was better than the psych when considering meds/doses etc.

tiggersneverdie - Sorry you're in the same shit. The EMDR specialist I very briefly saw was also a man, and yes that would definitely not have been ideal. I do recommend private counselling/therapy for anyone who can at all afford it, though. You get to choose who you see, and work with your own agenda and own timetable, without all the hoop jumping and weekly form filling. Mine charges me a reduced rate, which I think many do if you're otherwise unable to afford it.

Feliciaxxx - The counsellor I see hasn't really said anything for or against meds and doctors. Just seems to want to support me in whatever I decide, I guess. I think she's even more frustrated with NHS services than I am, though, having worked within it and given it up.

pottersotters - My pharmacist is great. She's the reason I know how to do my asthma inhalers correctly. I guess in theory I could ask their opinion, but the pharmacy is usually very busy whenever I'm there. I'll see what my GP says first. She's quite good with MH, really. I asked around from other locals with MH issues before starting to see her, and she was always recommended.

Just wanted to say another thanks to all who commented on this, and to update.

I've seen my GP, and all was good. I asked to try a different type of AD, and she's recommended I give Mirtazapine a go. Hopefully to help me sleep, as well as treat the worsening depression. She's not trying to force another referral on me!

I've also had a nice catch up with close friends, including talking with them how I've been doing, and everyone is very supportive and kind.

I literally just went through an hour long referral and had to talk about things that made me ridiculously uncomfortable and I've been referred for CBT and meds. If I can do it, so can you 💕

Glad you got through that Bel, and I hope you'll get the help you need. I have no idea how many long assessments I've had in my life, but many more than I could count on fingers, so I'm definitely happy not to need to get through another one!

I agree with what some others have said about having a long chat with GP about a way of getting you referred and then actually getting help. Maybe even try a completely new GP? Or take someone with you who is concerned and wants to support you. I've also just recently found out I have a chronic illness and the last few months have been a constant battle with Drs. You have to be your own advocate which is ridiculous when you're in any pain be it emotional or physical but it's true. You have to insist that you get treated. You should not be forking out to pay for private medical care. You pay your taxes and deserve all the care you need to be healthy to be provided by the NHS. You have the right to be seen by whomever you would like to be seen at whichever hospital you want to be seen in. Do your own research, find a psychiatrist or therapy that you think will benefit you and request it. If time and time again the NHS is ignoring you and your health issues you need to take action. Write to Jeremy Hunt and outline all your frustrations and demand help, contact the healthcare company you're being referred to (they are all different. I recently had issues with Mayflower Healthcare Alliance) and ask to speak to their complaints manger. If you have to go to Citizens Advice or call them over the phone. They've excellent and can help you obtain legal advice if the NHS are continually negligent. You matter 👍🏻

I can totally relate to your experiences OP. I'm glad that you have seen your GP but can totally understand your reluctance to keep having to go through assessments that prove futile.

Will PM you briefly for privacy reasons. Hope that is OK.