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?

Anyone? We could really do with your help!

Sorry I havent got any advice, but hope someone can help you xxx

Not these drugs, but I do have a warning about taking yourself off drugs, against the advice of your gp. I was on Zispin, and felt fine, so I took myself off them, as I was frankly fed up of the sexual problems ADs cause IYKWIM. Anyway...two months later, I felt horrendously depressed again. It seems that it had taken a month for the drug to come out of my system, and another month for me to get sufficiently depressed to warrant a visit to the gp.

Anyway, my point is that you can not know how much help your ADs are giving you. Your mum may feel 10 times worse off the drugs, or she may not. Ultimately, these people are paid to know more about drugs than we do, so we should really take their advice.

Have you googled to see if the drugs that you mention have any side-effects that include suicidal thoughts, or something like that? Might be worth a look.

Thanks for posting, Dior. IKWYM about not knowing how bad you'd be without the ADs, which is of course the main reason for not taking her off them. And I also completely take your point about doctors having the expert knowlege when all we have is our ancedotal evidence.

The thing is, it's not a case of taking the ADs, feeling fine, taking yourself off them because of that and then feeling bad again. Her original Clomipramine prescription was for 10mg. Now she is on 200mg. That's a 20-fold increase in less than 6 months, which has made no discernable difference whatsoever. (To my knowledge, 200mg is the highest possible dosage that can be prescribed in an out-patient situation.) That can't be right, surely? I just worry that they are exacerbating the situation, not helping it. To feel 10 times worse would not, I think, actually be possible.

Oh, I don't know even why I posted this, really! I do take your points and am really grateful for your input. I'm just clutching at straws, really.

NoMoom, I hope someone else can come on later with more help, or perhaps experience of these drugs. The 20 fold increase in 6 months does sound incredibly alarming.

is there anyway you could get a second opinion from another psychiatrist? does your mum see a CPN? only ever been on SSRIs so cannot comment on Clomipramine or Olanzapine or withdrawal from them. given she is on such a large dose of clomipramine, i imagine that she would have to taper off to zero very gradually from that in any case to come off it. sorry I can't be any more help.

She has an appointment tomorrow with a new psychologist (but this woman works under her current consultant so probably won't have much joy there). She has also been seeing a clinical psychologist privately who originally suggested the Clomipramine, but she feels she can't do any more for mum so has passed her back to this new psychologist.

We are also waiting on a referral to the 'top man' at the Institute of Psychiatry as she is such an unusual and 'treatment resistant' case. He is apparently a world-renowned expert in OCD and associated disorders and has said he will see her but only through the NHS. However, our primary care trust have told us they 'have no money' for her to be referred to him.

It is a nightmare - like trying to swim through treacle.

hi
i was on venlaflaxine 225mg and also 10mg of diazapam and zopicline....psychatrist wanted to increase venlaflaxine to 3oomg a day.
I decided i didnt fele any different on meds so took on gradually reducing..however towards end of reduction i fell pg so had to just stop...there r some quite horirble side effects like extreme dizziness, nausea etc. I wouldnt recommend stopping urself but if ur mum feels she needs to stop then she should go to her pschatrist and tell them that she really wants to stop meds..i only did it by myself as I am actually a mental health worker and have good knowledge of med reduction etc...i must admit since stopping i havent felt any worse but this may not be the case for everyone.......good luck

is the institute of psychiatry the same as the Maudsley Hospital in London? my friend got referred to there for in-patient treatment for meds resistant OCD, and found that very helpful. is there anyone else good your mum could see privately?

Yes, I think it's based at the Maudsley. How long did your friend have to wait for treatment (are you MTS?! ) She would be scared stiff of in-patient treatment though. Keeps saying they'll never let her out again if she goes in . The private psych she was seeing was great and actually treated her very successfully 12 years ago for obsessive ruminations, but can't crack this particular case. And we are running out of money...

yes, tis me, MTS. I don't think she had to wait that long - a couple of months - she got priority on the basis that if she took any more time out from her uni course she couldn't have gone back as they were going to change the course. she lived in the North of England tho, so any treatment would have had to be be residential - she wasn't on a ward or anything, sort of more like a shared house belonging to the hospital.

Hi,just logged on and read your thread. I have ocd and depression and was on Lofepramine for years with not much change and sometimes i felt that they made me worse. I have recently changed to Cypramil (SSRI) and the difference they have made is amazing, i feel almost human again!!I'm no expert on ADs but if your mum's medication is not an SSRI ( i believe most are anti-obsessional) it's probably not going to work very well with the ocd. I really feel for you and your mum and hope this has helped a bit (sorry if it hasn't).
Take care.

I guess we could ask again about the possibility. I know her referral is being chased up (I think my dad has even been threatening legal action but that's a loooong story!) Thanks so much for all your help, I really appreciate being able to sound off here now and then.

Maxymom - Imimpramine is Anafranil, which is the one tricyclic (older style AD) that is effective for OCD. The rest aren't but that one is meant to be as good as the SSRIs. Presumably they have tried your mum out on things like Prozac, NoMoom?

Nope, she's never had stuff like Prozac at all. Just the tricyclics, AFAIK. She's had Imipramine and Cipramil at various points. All to no effect. You can see why cynicism is setting in...

Do you think Prozac would be an option? She hates being on things like Olanzapine as it is primarily an anti-psychotic and she hates the idea that she is being treated with anti-psychs (no matter how much we try and reassure her that it doesn'r mean she has any tendencies in that area at all)

The OCD is very atypical. There are no rituals and it is all a matter of repetitive sounds and images in her head. So ordinary OCD drugs seem to have little effect.

Cipramil is an SSRI (also called Celexa) so is the same group of drugs as Prozac (so guess I would in a vague arm wavy way include it as being "stuff like prozac". Prozac also works for OCD - that's what works for me - I have (am hopefully nearly recovered) from a spate of handwashing OCD - guess that is about as typical as you can get for OCD. Treatment doses for OCD tend to be higher than for Depression (though for some strange reason quite a low dose of Prozac works for me - 20 mg). Prozac is the same as Fluoxetine btw.

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

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.

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" (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...

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.

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.

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.

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

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.

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?