Why is there not more support for coming off meds?

[GetDownYouWillFall]

Sorry I have ranted about this before, but just had yet another bad experience which reinforced my view that the NHS is not set up for helping people to get off psychiatric medication.

I had PND and was hospitalised with it, but that was over 2 years ago now. I want to start coming off medication very gradually but have found it really difficult to get support to do so.

First of all they said "no" and I naively accepted that they knew best. However, I have now been well for over a year and feel the damaging side effects of my medication are outweighing any benefits I may have. The lithium I am taking is slowly damaging my kidneys and will made birth abnormalities in a fetus more likely, the mirtazapine is making me put on weight which is awful.

At my last appointment I said to my psychiatrist I want to wean off by 10% a month, taking one medication at a time. He said "well if you want to try so you can see for yourself that is up to you". He wrote a letter to my GP stating I could go for a 25% reduction, which I thought was way too much and went against my wishes to come off really slowly. He said that he couldn't do any less because they don't make the pills in any smaller denominations. WHY?

So I go to pick up my prescription today and they have messed it up and given me 25% of my original dose, rather than a 25% reduction on my original dose. So more hassle, ringing around getting it all sorted out and another trip to the pharmacy tomorrow.

The whole thing is just hassle hassle hassle. I know it's my problem and I have to deal with it, but sometimes it just feels they like to keep you in the "sickness role" for an easy life and would like patients to be passive recipients of whatever poisons they feel most appropriate to suit your particular condition. I am normally a very quiet gentle sort of person, but this sort of thing has got me really annoyed. I feel like the whole system is set up to make you fail. If I try to express my frustrations, this all gets noted down on my notes no doubt peppered with words such as paranoid and non-compliant. Even though I am neither of those things. They are just using my frustrations to build a case against me that I am still ill! Sometimes I cry in my appointments because I get so frustrated with the whole system. No doubt they are writing depressed.

Is it just me or can they not cope with someone wanting to reduce their medication slowly?

[SeaTheStars]

well at least you want to stop it slowly and don't just stop taking it but pretend you still are

have you got actual kidney damage from the lithium? only they should be looking at an alternative if so, or at least reduce it to lowest possible therapeutic amount (some people get by on as little as 0.4mmol)

is it prescribed for you to augment the mirtazapine or as an anti-manic/'mood stabiliser'?

[sunburntats]

I agree, you are on your own.

I have experienced a similar situation.
felt very alone and very vulnerable.

did it on my own in the end, which they advise against but they couldnt/wouldnt offer me any support.

[newtohere1]

Quick answer to the question in the title;
It's much easier and cheaper to give out pills than give you the therapist you'd probably need to otherwise recover.

[newtohere1]

I will tell you about someone very close to me. The doctors told her she couldn't stop taking the meds.
She went home and reduced her dosage herself, weaned herself off and when she went back to the doctor they complimented her on how well she looked and said 'look how well you are doing on this medication, aren't you glad you didn't stop?' she said 'i've been free from that crap for 6 months and yes i am doing well thanks'.
I liked that, she did relapse a year later and gey sectioned, but she was doing that every year or two over the past 20 years anyway (whilst constantly being on meds).

When they found out she was lying about taking it they said she couldnt leave hospital unless she takes it by injection now. If she refuses the injection she can be readmitted.

It's awful seeing someone you love going through that, begging the nurse not to give her that poison when she comes round.
I've seen several of them hold patients down and inject them when they refuse to swallow meds on the psychiatric ward too when visiting.
This one girl only in her mid 20s could barely open her eyes and speak but i could hear her saying the dosage was far too high.

If you can get out of the taking meds game I wish you the best of luck but be careful.
If anything happened to you and doctors had incorrect details of what meds you were taking they could give you an overdose.

[GetDownYouWillFall]

Hi all
SeaTheStars - they said it is not damaging my kidneys at the moment but it may do in the future, was prescribed as a mood stabiliser. Did you just stop your medication then and tell them you were still taking it? What happened did you stay well? Hope you don't mind me asking...

sunburntats - thanks for your post, well done for having the courage to do it on your own. You do feel lonely and vulnerable when the health profession is telling you one thing but your gut instinct is telling you another.

newtohere - I think you're right, pills are cheaper than therapy at the end of the day. Very sad. Thank you for telling me about your loved one. That is so awful that they threatened her with injection. The fact she stayed well for so long without them just goes to show they weren't doing too much for her. I am going to try my best to come off them myself.

[sunburntats]

Wasnt much in the way of courage jsut a very strong feeling that i had to do it, it was time, i was ready so broke pill in half for 2 weeks, then took half pill every other day then every 3rd day for a week, then stopped.

Im not going to lie to you, it wasnt a nice experience, i felt very unwell physically and very, erm, well, premenstrual, bad tempered for about 2 weeks. But i knew why i felt like that and so persevered.
Never once did i feel that the PND was edging back in.

I have been off them for about 3 years now. feel ok and amazingly can cope very well with upset and awful things that potentially could tip a depressive over the edge.
They helped me out of a hole, but i jsut dont want to go back there because coming off them was so very hard.

Also i thought about it, considered it, researched the potential side effects and really educated myself before taking the plunge. Wejghed up the pro's and con's.

I urge you to do the same thing.

[SeaTheStars]

um no, in past have ended up back in hospital

but luckily not for past 5 years, stopped meds later last year when had an episode despite them

would go back on if necessary of course, was thinking that you could create your own supports (friends/family, support group) and draw up a 'relapse signature' so you knew when to resume meds - there is a v good book 'overcoming mood swings' which has advice about trial periods off meds

[Poochierama]

Hello GetDown

Yes I've had problems with this too.

You can get mirtazapine in liquid form. You can then measure it out with a syringe and mix it with a bit of water and drink it. This would give you the means of cutting down by 10% each month.

This is EXACTLY how I did when I successfully came off mirtazapine. I'd had lots of failed attempts before then.

My GP prescribed the liquid mirtazapine for me, I didn't have to go through a Psychiatrist. There was some resistance from the GP though, as the liquid form is a LOT more expensive than tablets. But I fought my corner and anyway it's probably cheaper in the long run than being on tablets for life

I can't help with your lithium, but I have come off anti-psychotic medication. I did this by breaking my tablets up into half, and then quarters. Started with 3/4 then 1/2 then a 1/4.

I did all this off my own back, with no help from GPs / psychiatrists. I even found out about the liquid mirtazapine by myself

I just wanted to let you know it can be done. I hope this helps

[meoww]

OP
You're welcome.

It was strange that they blamed her being off meds for her breakdown, when she had had breakdowns or 'holidays' on the psyc ward quite routinely whilst on meds anyway.
and the year of her being off meds and fine and healthy didn't go in her favour either, they won't listen.
Maybe she will keep having breakdowns no matter what they do, but she hates the meds and they obviously dont prevent breakdowns anyway, so IDK..

just me careful hun that you tell them what you are/arent taking if youre ever in an accident, or tell someone close to you.
and remember at least they relunctantly agreed to you coming off this time so you have a chance to do it with their knowledge.

[SeaTheStars]

incidentally only two meds have truly solid evidence for long term maintenance (ie preventative) treatment of mental illness - lithium (bipolar) and clozapine (sz)

[strawberry17]

Hi
In my experience doctors know bugger all about how to wean people off medications, after struggling for years I researched how to do it myself, I have a blog
prozacwithdrawal.blogspot.com/

if you can get the liquid version of your medication you can wean yourself off as slow as you like!

[GetDownYouWillFall]

thanks strawberry, I have asked about getting the liquid version but have just been fobbed off. Apparently far too expensive. Do I have the right to insist? Or can they just say no?

[GetDownYouWillFall]

also just looked at your blog - thanks for sharing this. Can I ask what problems did you encounter when you tried to cut back your meds, my main problem is really bad insomnia.

[candyfluff]

hi - im thinking about coming off my meds too (mitazpine)
ive been on them for nearly 4 yrs which i realise it way too ,long- my gp has never suggested i come off them - i did try a few years ago and was doing really well weaning off and then my daughter got very ill with pneumonia and i felt myself slipping back into depression again so i started to take them again
i wasnt aware of any liquid form so i will ask when i see my gp about this
what side effects did you all get when reducing you dose ?

[NanaNina]

I learned how to come off ADs after 15 years. I had tried several times on my own and once with the "help" of a GP who was well meaning but ill informed. Eventually a therapist with expertise in this area showed me how to do it. It was so simple.

I must stress I am talking about ADs only (mine was one of the old fashioned tryclics - impiramine 100 mg per day) I know nothing about lithium reduction.

When I had tried myself I had tried cutting down by 25 mg per day and resulted in withdrawal symptoms. What GPs don't tell yu is that ADs cause dependence (not addiction which means craving more of the drug) but dependence in the sense that when you stop too quickly you get withdrawal symptoms which mimic the original depression.

Then a GP suggested I reduce 10mg per day but eventually the same thing happened as it was too quick.

The therapist said that GPs always want you to follow a schedule - so many mgs per day/week whatever. She said this was wrong because only the person taking the meds knew how they were feeling when they stopped so they must be in control of the reduction. She said it was important I felt in control of the reduction and the only thing she would do would be to stop me reducing too quickly.

I was on 100 mg per day and I started reducing 10mg per day. I did this for 1 month. The second month I did 20 mg per day and did this for a month, and so on - reducing 10mg per day but no more reductions for another month. In fact I waited 2 months between reductions on one occasion. It took me 10 months. I did have some withdrawal symptoms but they were mild and manageable and I understood what was happening. I think the time I waited 2 months was because I was having a few withdrawal symptoms. The important thing for me was not having a schedule and if I felt I didn't want to reduce again for a while then I didn't need to. This was psychologically very important for me.

The hardest part was getting the GP to give me the right number of tablets to take into account the reduction (my tabs came in 10mg size) they could never do the maths(!) so I used to work it out before I went for my prescription.

GPs don't know a great deal about mental health especially the older ones as there was never much on this issue in their training. Not one single GP ever told me that when I tried to reduce ADs too quickly in the past and started having symptoms again, that what I was experiencing was withdrawal symptoms - they all said it was the depression coming back. And that was just nonsense but I believed it until I got into therapy with someone who knew what she was talking about.

And on the issue of meds and cost (re the liquid doses that some of you have mentioned that you need) you have an absolute right to get what you need on prescription - cost should NOT enter into it. The notion that GPs are withholding meds because of cost, especially when someone is trying to come of ADs is totally nonsensical, but I know it happens.

I suffered from debilitating migraine for many many years before I learned (from a friend with an enlightened GP) about a drug (sumatriptan - brand name Imigram) that worked by reducing the swelling around the brain that causes the pain in migraine. I had asked the GPs if there was anything that could help and they had said only paracetomol which did nothing. When I found out about Imigram I asked for it and was reluctantly prescribed it and it changed my life - I felt angry that I had not been told about it and now know it was because of cost - they are about £5 per tab. They are now available at a pharmacy sp if I need them I buy them there. All the time I was being prescribed them I was constantly being "hauled" in to the surgery to give me yet another preventative med (none of which worked) not because they were concerned about my migraine but because of the cost of Imipramine. I understand GPs do not have an infinite budget but I'm afraid sometimes we have to be assertive.

Good luck to all of you trying to come off meds and wis you a s-l-o-w and safe reduction and hope the advice I got will help others.

[NanaNina]

sorry I meant "because of the cost of Imigram" - interestingly ADs are comparatively cheap which is another reason GPs are happy to prescribe them. Incidentally I learned recently that in the biggest trial to date of the effect of ADs on depression and anxiety, 50% of people in the trial got better with a placebo affect (a sugar pill that they thought was an AD) - this wasn't a trick as all the people in the trial knew that some would get the AD and some the sugar pill and this is an established way of trialling drugs. 25% of people in the trial took nothing and got better too.................so it does rather make you think about exactly how effective ADs are. I think one of the problems is when we get anx/dep and take meds and get better we assume naturally that it is the med that got us better when this may not be the case and there is no way of knowing, other than by trials like the one I have just mentioned.

[willsurvivethis]

Individual GPs don't have a budget as such - they do have prescription guidelines and some more expensive meds are just not in the computer system they prescribe from.

When my ds was newborn he was on anti-convulsants - first alcohol free ones from the hospital, but the GP could only give him normal ones. So yes all baby meds have to be sugar free but let's give a new born the alcohol equivalent of half a pint a day!!! it took me breaking down in Boots in front of a lovely pharmacist who looked up some very expensive alcohol free one and got my GP to handwrite a prescription. Some things are worth the money and the hassle.

So if you feel you need the liquid stuff and tablets can't do the same then ask for it.

[NanaNina]

I know individual GPs don't have a budget I will, but I think I'm right in saying that the practice has a budget so cost is an issue, other than the fact that more expensive meds are not in the computer system.

My practice were in no hurry to get me off ADs (quite the reverse) really as they are relatively cheap but were desperate to get me of the expensive migraine drug.

[BackToBasics]

Hi, i have been taking Fluoxentine since May last year for PND. I have been weaning myself off them taking one every other day and i feel like crap.

I have been moody like you wouldn't believe, like someone else said acting pre-menstrual. I am struggling to go ahead with day to day life, feel worthless i suppose. I am a SAHM and i feel worse i guess because my "job" of looking after my 2 dc (1 &3) isn't reconised as being a real job and is a real thankless one too.

I thought i was ready to wean myself off the meds but feel really rubbish doing so and don't feel like anyone gets what i am going through.

[NanaNina]

Backtobasics - weaning off meds by alternating days is not the right way to do it, I was told. Are you having any help with the med reduction or just doing it yourself. Are you worse since weaning off - if so you may be having withdrawal symptoms which mimic the feelings of depression.

Looking after 2 young children is very hard work and isolating and as you say is not recognised by society. Can you get involved with any toddler groups/find friends inthe same boat etc. I remember this time with young children as really difficult and was so grateful for friends with small kids etc. Much as you love your kids, it's tough when they are this young. They will grow you know and there will be better times ahead.

If you are feeling worse with the weaning I would go back on the full dose and try again later. You've only been on them a very short time really and I think the main thing is for you to get the help you need to get you through these early years with the children. Once they are in nursery for part of the day you will at least start to get a bit of time for yourself.

Keep going BtoB - the years go by quicker than you think!

[strawberry17]

Sorry I posted here and forgot to come back! Wish there was e mail notification of replies.
NanaNina you sound so like me in your experiences with doctors and antidepressants. There should be no problem getting liquid medicine if it is available in liquid form, not all medications are, to find out if your medication is available in liquid it's much better to ask a pharmacist/chemist than a doctor.
I am weaning off liquid prozac, my starting dose was 5ml (=20mg) and it's taken me two years to get from 5mls to my current 2.90mls and I expect it may take another 2+ years to be off altogether, I reduce by 0.10 to 0.20mls every 5/6 weeks, this way I can honestly say I am getting barely any withdrawal symptoms at all, my sex drive has come back and I am feeling more emotion (as oppose to being numb), and going this slow means I can adjust to the idea of being able to come off my meds, something I once thought would never ever be possible.

[strawberry17]

Forgot to mention about insomnia, yes when I tried to come off Lustral/Prozac too fast I used to get chronic insomnia, I used to lie in bed with adrenaline racing round unable to calm down and switch off. Have to say that while I've been coming off excrutiatingly slowly I've been sleeping like a baby (I wake every 2 hours for a feed LOL). Perhaps I mean I sleep like a log!