Active discussions

Please or to access all these features

Talk
Mental health

Mumsnet hasn't checked the qualifications of anyone posting here. If you have medical concerns, please seek medical attention.

Original poster

Coming off ADs against advice of health professionals?

41 replies

NoMoomAtTheInn · 06/12/2004 18:20

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?

OP posts:
New posts on this thread. Refresh page
OhComeLetUsADiorHim · 09/12/2004 19:48

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.

((()))

Original poster
NoMoomAtTheInn · 08/12/2004 22:06

thanks mts - i'll have a look

OP posts:
Original poster
NoMoomAtTheInn · 08/12/2004 22:05

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!

OP posts:
FeastofStevenmom · 08/12/2004 22:04

no panic also does OCD support groups as well!

url is www.nopanic.org.uk

mishiclaus · 08/12/2004 21:58

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

Original poster
NoMoomAtTheInn · 08/12/2004 21:36

Hi mts. She's not too comfortable with technology but that's maybe not an altogether bad thing Smile. 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.

OP posts:
FeastofStevenmom · 08/12/2004 21:25

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?

Original poster
NoMoomAtTheInn · 08/12/2004 21:18

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 Smile 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.

OP posts:
FrostyTheSurfMum · 08/12/2004 20:17

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

OhComeLetUsADiorHim · 08/12/2004 20:06

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 Sad)

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 ((()))

Original poster
NoMoomAtTheInn · 07/12/2004 21:59

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

OP posts:
OLittleYurtofBethlehem · 07/12/2004 21:51

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

mishiclaus · 07/12/2004 21:49

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

Original poster
NoMoomAtTheInn · 07/12/2004 21:38

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!!

OP posts:
FeastofStevenmom · 07/12/2004 21:26

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?

mishiclaus · 07/12/2004 21:26

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

StuffTheMagicTurkey · 07/12/2004 21:22

What (if any) "me" time do you have? You sound as though you need some TLC for yourself. Do you have some friends you could get a regular night out with?

Original poster
NoMoomAtTheInn · 07/12/2004 21:19

Thank you guys. I have thought many times about moving out but cannot for financial reasons and - here's the twist - will not. I won't leave her and my dad. I know what the stress is doing to me and I'm not trying to be a martyr and I beat myself up every day about the possible effect it may have on ds (although I do, in my defence, think it is minimal - he is surrounded by so much love here and far more than I could ever provide for him) Even if nights like this do more harm then good I would rather be here for the times when I can help.

I have no money. We live in a very nice 5 bedroom house where ds and I have our own rooms and I have my own living room and own study. I could not get a mortage and to get on council waiting would be impossible and - I have to be honest and say this - not morally right, imho. There are a thousand people worse off housing-wise than me. I have done the council 'points' system questionnnaire thingy and I would effectively have to declare myself homeless before I would be considered and I am not prepared to do that.

She would be devastated if ds and I left. It would not be the answer - it would push her even further down. It would probably be the one thing that made her go through with her threats. Same goes for my dad. I could not do it to them. They literally live for seeing ds.

I know how this sounds. i don't know whether I am doing the right thing. I think I am. I just wish I was a better, calmer person.

OP posts:
FeastofStevenmom · 07/12/2004 21:06

sorry you have had such a bad evening [hugs]nothing in your post would make anyone in their right mind "judge/disapprove etc". you wouldn't be human if you had infinite patience living 24/7 with someone with OCD - it's a pig of an illness to live with even on the witnessing/receiving end. Tbh if you didn't shout/scream once in a while, god knows what sort of psychological damage you would be letting yourself in for by keeping it all bottled up.

for the long-term - is there anyway you could move out and live somewhere local - so you would be on hand to help during the day, but could have some space of your own separate from your mum? it just seems like such a burden on you atm

StuffTheMagicTurkey · 07/12/2004 21:05

I don't think anyone on here would think harshly of you. You are in an enormously stressful situation and only human! Anyone would crack - we have to release the pressure somehow. Your Mum has calmed down, don't beat yourself up. You are doing everything humanly possible to help her.

Original poster
NoMoomAtTheInn · 07/12/2004 20:59

Sorry, I know this is dull, I just have to get it off my chest. We had the most appalling row this evening. I just don't know how much more of this I can take. I think I am going to end up in bloody hospital at this rate. I just lost it completely.

She had been to her appointment and came home in a right state - saying she couldn't get therapy for another 6-12 months, crying etc etc. So I tried to calmly tell her that if that was the case we would sod the expense and find someone who could give her intensive, one-to-one CBT privately. She just said her usual 'it won't make any difference' which I tried to ignore. I called her private psychologist and left a message for her asking her to chase up her NHS colleague who is chasing this Dr Salkovskis at the Institute of Psychiatry. Also called my dad to pass on a 'heads up' message to the GP (but apparently he couldn't get through). She was wandering around the house crying and wouldn't talk to me.

Anyway after all this (apologies if you've stayed with me this far) I then had a crappy phone call from xh changing plans to see ds for the second time this week because he now has a social engagement. We got into ridiculous long conversation about he wants 'joint custody' and how I broke up our home and our marriage and our family (no, I called time on a ridiculously destructive, unsupportive, damaging situation). I coulsn't be bothered to argue so sat and just listened to his grievances for 40 minutes. I needed a few minutes to collect myself after this conversation and was trying to make ds's dinner with mum wandering in and out of the kitchen saying she was going to bed, not going to bed, couldn't cope, was desperate, needed to be in hospital, didn't want to be in hospital...and on and on and on. I was trying very quietly and calmly to say 'go to bed mum if you want to and we can talk properly about this in the morning' she wouldn't just kept following me around the house. Ds was crying, she was crying, by this time I was crying and asking her to please calm down. Anyway, I lost it, I got angry and she told me she was going to kill herself and ran upstairs, which I have heard so many times but only when I say something she doesn't like. Why does she say it? It kills me inside to hear it. I can't cope with her. So I was screaming at her and it was awful. I just lost it and I am so ashamed. But I'm not a nurse - I can't deal with this everyday and a job and ds and xh and bloody university applications (why??) and trying to put on a brave face for my dad and everything. And trying to be nice to well-meanign friends and just thinking 'you haven't got a fucking CLUE!' I am such an awful person. I said such awful things. I just don't think i can do this anymore. And of sourse by the time she spoke to her private psych this evening she was calm and chatty - just saves the bad stuff for us.

Sorry, sorry. Wine and stress don't mix. Am going to post this but reckon I will regret it. Please don't judge me.

OP posts:
FrostyTheSurfMum · 06/12/2004 22:49

Oh dear, I am sorry. My old boss wasn't like that, but sadly I do know the sort. Of course family members' views are important. The doctor only gets a snapshot of what the patient is like, the family are with them, like you say, 24/7.

The only other thing I can suggest, and you've probably done it, is looking on the MIND website. They probaby have factsheets about the medication.

Good luck with getting the referral to the Maudsley.

Original poster
NoMoomAtTheInn · 06/12/2004 22:07

Hi Frosty. I have tried to speak to him but he is not interested in anything I have to say and will not discuss my mother with me. I actually rang him a year ago asking him to refer mum to the Maudsley and he told me that "the patient's family always think they know better than the professionals" Angry (No, we don't, but we live with and care for her 24/7 and we do have some insight into her mental state.) Ironic really, that he is now making the referral I asked him for 12 months ago... He will grudgingly discuss matters with my father. His usual tack is that he cannot take any course of action that isn't requested by the patient herself, i.e. if my mum herself doesn't ask, she doesn't get, and that makes things doubly difficult as she is rarely in a position to argue her case with him. She once took along her private psychiatrist along to an appointment for support when my dad couldn't make it and he and she got into a slanging match about mum's treatment. Professional jealousies/competitiveness, etc - ridiculous and maddening.

His attitude in the past has certainly been very dismissive. He is something of a cliched Consultant-as-God, unfortunately. He has put some pressure on the PCT re: payment, as has mum's private psychologist and a colleague of hers. As I said, it is rather like swimming through treacle, though. With concrete boots on...

OP posts:
FrostyTheSurfMum · 06/12/2004 21:41

I used to work for a Consultant Psychiatrist. Have you tried speaking to the Consultant yourself? They might be able to explain to you why they think she should stay on them, and you could give your views. Was it the Consultant that referred her on to the Maudsley? If not maybe he can exert some pressure on the PCT to pay for it.

Original poster
NoMoomAtTheInn · 06/12/2004 21:21

Ah, well, then I guess she has had 'stuff like Prozac' then! Tbh, I lose track a bit sometimes of what is what exactly.

Am really glad to hear you are recovering, mts. It's an appalling illness. And we are really banging out heads against a brick wall with this particular case. Nothing seems to be working - hence my original clutching-at-straws post. Well, I guess we will just have to see what transpires after she sees this new psychiatrist tomorrow. Thanks so much and hope you continue to get better. xx

OP posts: