Coming off ADs against advice of health professionals?

[NoMoomAtTheInn]

I need some advice or experiences from anyone who's weaned themselves (or tried to) off ADs.

My mum is being treated for atypical OCD and depression. She is currently on 200mg of Clomipramine and 20mg of Olanzapine. She has been on these drugs in varying doses, plus others (Venlafaxine is one I can think of) for almost 3 years now. They have apparently made no difference whatsoever to her depression, anxiety or OCD-type symptoms and in fact we are of the opinion that they may in fact be making her worse (suicidal thoughts, etc).

She strongly believes that she would be no worse if she were not taking the drugs and in fact would probably feel better. Her consultant psychiatrist disagrees. She is loath to go against his wishes but equally hates taking such high doses of drugs she feels do no good and may actually be doing harm.

I am really just looking for any insights or advice! Has anyone else been on these medications?

hi nomoo....
dont be so harsh on yourself hun mental health issues are horrendous to live with and people on either side tend to get frustrated...i was a mental health worker before i had the mental health problem (ironic i know) and from both sides i know how hard it can be...
in temrs of dealing with psych does ur mum have a cpn or a mental health worker as psyches do tend to listen to them as they r classed as 'proffesional' but also tend to be more open to the families view point aswell as the sufferer....it is a horrible illness and more debilitating than anyone can understand..ur mums threats of suicide are normal..i knwo it doesnt feel it but they are...90% of pop have suicidal thoughts but very rarely carry them out....i know its hard but in a way its her way of trying to gain some sort of control...i know because i used to sh to do this and also had suicidal plans...not jus thtoughts or threats....she is trying to find out what your feelings for her are while trying to push boundaries and push you away...i know cos i have been there....i know it doesnt help much but you are being a star
take care

NoMoom - you are better placed than anyone else to judge what's best for your family. if living with your parents what's best in your view, that's what counts. is there anyway you could limit your availability in the evening for example? once reason i say that is that from my experience, a stage in getting better from the OCD is not seeking reassurance from other people - i.e. learning, however hard it is, to cope with the anxiety/stress in your own mind.

from your point of view, do you/your father have any support in terms of reducing your stress levels? would you attend any carers groups? would you be entitled to any carers benefits?

Your posts are making me cry! This is so bloody hard. I do try to get out and see friends but am a bit limited. I don't like to leave her too long during the day and most of my friends live in central London while I am in the suburbs so it's a bit of a trek.

The huge irony of all of this is that she looks after ds for the 3-4 hours I am at work during the day - and she does brilliantly. Okay, she's not much of a one for taking him to groups, etc except for a library songtime thing once a week and out to feed the ducks at the pond but she loves it and he is more than happy with her. It's still hard for her but she does it and does it perfectly well. She has to cope and so she does. It's just once I've been home for an hour or so she seems to collapse. But equally if I left her alone for any length of time she wouldn't be able to cope with that either. She was threatening to kill herself this Saturday if dad and I left her to do some xmas shopping...

We're not eligible for carer's allowances apparently. We don't belong to any groups but we have each other - and my dad has some friends who take him to the pub once a week and...I have mumsnet!!

nomoom..have u checked with cab about careers allowence? also is she on dla?
As for the leaving her alone there should be a voluntary org in your area that should be able to help by spending some time with your mum etc...the psych should know of some..this will take pressure of you..
i can understand about the coping while u r not there with ds as I was like this with my DS i adore him to bits and everything was about him but the responsibility can also be overwhelming if u r not well...she wont let it happen while she is solely responsible but once support is there she obviously has time to mull over her thoughts etc..if u know what i mean...i only understand cos i do this too hence...once ds is in bed i tend to be lurking around online..lol

you are a strong person and you are doing everything possible hun but dont make yourself ill in the process as your ds needs u too

Hi Nomoom just wanted to say hi cos you said hi on my thread about dh!

Hi littleyurt! Hope you are getting some good advice from all these wise MNers...

Mishi - you are so right. She copes when she has to but once there is someone else there, it all goes downhill. Weekends are the worst as dad is there too - she is just inconsolable (plus ds goes to see his dad so she is without him for a few hours) Unfortunatly, there's no way she would have someone come in to spend time with her. She would hate it - plus it would reinforce in her mind her idea of herself as a helpless invalid who can't look after herself which is (within reason, obviously) not an attitude we want to encourage. I try to get her out and doing things but it's an uphill battle to say the least...

I'm going to go to bed now - am knackered. But thanks so much. You don't know how much it means to be able to just sound off here. Bless you all xx

NoMoom - I'm sorry if my earlier posting wasn't any help. I realise that my experience is totally different from yours and your mum's. I really feel for you, it must be awful. As someone else said, if she is on such a high dose of any drug, it is not advisable to come off it without the help of her gp, because the side effects can be horrendous. (Been there, even with the advice of my gp )

Luckily for me, I have not been as bad as your mum, although I have had suicidal thoughts. They do say that the ones who threaten suicide a lot are the least likely to do it, but then again, you would never want to put that to the test would you? You must be worried sick, and I'm so sorry that I can not say anything to make it better for you. Your poor mum too.

Sending hugs ((()))

Just wanted to send big hugs (((()))) (have I done that right?). It sounds to me like you are coping amazingly well given the circumstances.

Oh, Dior (love the Xmas name, btw!) please don't think I wasn't grateful! You were absolutely right and sensible in your advice. We are just in such a deadlock, really, and as I said, I was in a clutching-at-straws frame of mind. I know deep down that going off the meds would be unlikely to improve the situation really.

Anyway. Today was better - after such an appalling day yesterday - we made up and had a chat. I told her I was finding it hard to cope with her and also dealing with tricky situations re: xh, but will try to be more understanding. So we're friends again She also got a call today inviting her to attend an OCD group that she thought wouldn't have a free place for another 6-12 months, which is good news. Unfortunately, she turned it down! It is in the morning while I am at work and she is looking after ds so she automatically said she couldn't take it! So, I told her I would rearrange my hours at work so she can attend and so she's going to call them back tomorrow first thing - just hope the place is still available! I know she doesn't really want to go and thinks it will be a waste of time but I'm afraid I am putting my foot down about this - something is better than nothing!

Thanks again to everyone - this really does help.

Hi NoMoom. Glad that things have calmed down, and hope that your mum finds the support group useful. is she at all internet literate - just wondered if she might find it interesting to look at online support groups?

Hi mts. She's not too comfortable with technology but that's maybe not an altogether bad thing . I say that because I did teach her how to use the internet a few years ago when I was travelling and I wanted to be able to email her. She spent an awful lot of time scaring herself stupid by Googling her (real and imaginary) symptoms, etc, etc...

But I do print stuff off for her and she knows I get support on here, for example. I might ask her if she wants to come online one night - see what she says. I get the impression she still thinks the internet is a scary place full of freaks (and she may be right lol!) and that information you find on the internet isn't as 'kosher' as information a doctor gives you. Generational thing, I guess.

hi no moo
just wondered does ur mum have anxiety attacks etc as i know of an org called no panic which is all based on phone and via post...but there is prob something similair to do with ocd...she will prob benefit from support group as it can be a relief for her to find other people having similair experiences...
hope all goes welll

no panic also does OCD support groups as well!

url is www.nopanic.org.uk

Hi mishi - yes, she used to have them quite frequently, although not anymore. This current bout of OCD/anxiety can really be traced back to about 4 years ago when she started having panic attacks and problems with vertigo. She eventually gave up her job, social life, etc because she couldn't cope with them, and retreated into herself, really. Then she developed these OCD-like symptoms 2-3 years ago and has just gone steadily downhill. I think I have heard of no panic and I'm sure there is something similar for OCD. She has had contact with OCD Action, for example, so I'm hoping this support group can come up with something!

thanks mts - i'll have a look

NoMoom - glad your Mum was a bit better today. You sound like a rock for her, even if she doesn't think it at the moment. Unfortunately, people who are depressed (and I assume OCD has a similar effect) do tend to think about themselves a lot, and not appreciate the troubles of others. You sound a totally lovely person, and I hope your Mum takes that place on the course, for your sake as much as hers.

((()))