Long Term Anti depressant users - would you give me some advice please

[kizzie]

Hi - i also put this in general health earlier as I thought some people who were 'on tablets and well' might only see that board (I know when Im ok I tend to be everywhere other than the mental health board - its a bit like a sign for myself tht im doing ok because i can spend hours in syle and beauty!!)
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(If you cant face reading this whole post - and frankly i dont blame you- i'll put some pecifics questions at the bottom. Would really really appreciate any input x)

Long story short - i suffered severe PND nearly 11 years ago.(no previous history) Got well eventually on seroxat but then went through debilitating withdrawal several times. (in between times would be ok on relatively low doses of AD's)

Finally swtiched to a tricyclic AD (clomipramine)in 2004 and eventually did very well on that. Came off very slowly in 2006 but same thing happened. (not able to work /terrible depression & anxiety).

Back onto the clomipramine and after several months stabilised again. (50mg dose which then slowly reduced.)

Very well, happy, no anxiety, working full time in management job through 2008 and 2009 on 20mg and less.

Then end of Jan '10 cut down to 10mg and just crashed again. Had been really looking forward to this year - loads of fantastic things planned to celebrate my 40th. Work going brilliantly. Lovely times with my boys.

But now back to a shadow of self again .

So basically 3 weeks ago I went back up to 20mg (still a very low dose) because thats what I had been well on for 2 years. But still no sign of improvement.

I'm wondering if thats enough - or if I need to go higher to try and stabilise - or if once you reduce an AD you do run the risk of it not working again.

At the same time I've also started fish oils, a mult vit and doing breathing exercises twice a day.

Im past the point of worrying about withdrawal - or being concerned about taking AD's long term. I just need to get on an even keel.

QUESTIONS:

• Anyone taking a tricyclic long term - what dose do you take? Have you noticed it stop working after a while?

• Anyone taking any ANY Ad's long term - do you notice that you still have crisis maybe on a cyclical basis?

• Anyone who has reduced their dose - found that it did eventually kick in again - but it did take quite a while?

Sorry so many questions and so long x

bump

I've been on a tricyclic for about 18 years. I've tried to come off a couple of times and got ill again, so decided with my GP that I would just stay on them.

I'm on the full dose. I don't get side effects, they keep me really well, so I just take them every evening and don't give them a second thought these days. They certainly haven't stopped working or become less effective and I think they offer me protection against my mood really dipping when I hit stressful times.

KwanYin - thank you so so much for replying. Its actually quite difficult to find people who take tricyclics.
Do you mind if i ask which one you take and what the dose is.
Ive had to admit defeat today and book a drs appointment. In a real state really :-(

I take 150mg Dothiepin. It's bloody wonderful stuff! The way I look at it is that it as it keeps me on such an even keel, why rock the boat. No-one ever knows that I take them unless I tell them, and then they can't believe that I do.

I have been on mine for just over 2 years. Not long term. I am terrified of being on them long term TBH. I suppose I just worry about the long term effects they are having on my brain and my body. I desperately want to get off mine, my psychiatrist can't understand why, he says most people just take them and don't worry about it.

Interested to see if anyone replies about stopping them, and then the ADs not being effective when / if they go back on them... not thought about that possibility before.

Thanks Kwan Yin - thats really useful to know. Its also good to know that you came off and then went back on and still effective for you.

Get Down You Will Fall - understand entirely what you are saying - ive had all the same feelings in the past.

ive been on ads for a lone time citalopram 30mgs per day ,dose was reduced but starterd been ill again so bk to 30mgs

Have been to see GP and she has said to go back up 50mg. I know its probably the right thing to do but dreading it because know i usually feel worse before feeling better :-(

I have never found anything that made me feel good without the side effects and that's what you need long term.
Have ended up on St Johns wort and other more natural supplements that work just as well for me but don't have the side effects.
I may try and cut down on dose etc in the summer but am prepared to stay on something for the rest of my life rather than yo-yo up and down.

At times when I was reducing I was fine, it was coming off completely that seemed to do my mood in.

I wonder whether you will just need the increased dose for a while to pick your mood back up again, and then you can go back to 20mg long term. You don't necessarily have to stay on the higher dose.

thats what the doctor suggested might be able to happen KwanYin. Im just scared I wont get back to normal again at the moment but hope will be ok x

I was on a triyclic AD (imipramine) for 14 years. I suffered a severe depression following the sudden death of my very closest woman friend 15 years ago. I was in psychiatric hospital for 3 months. I tried to reduce the dose over the years several times but each time the symptoms returned and GPs always told me that this was the depression returning and that I mnust go back on the full dose, which is what I did and was OK.

However I began to see a psychologist experienced in mental health and she explained that when I reduced I was actually suffering from withdrawal symptoms rather than a return of the depression. I had been on 100mg for many years (having dropped 50 mg some years ago) and she showed me how to reduce safely - it took me 10 months and I finally came off them last summer with no ill effects at all.

If anyone is interested in her advice on med reduction I will post again.

I really don't have much faith in GPs about mental health -none of them mentioned withdrawal symptoms and all told me that the depression had returned. Neither was I told that ADs can cause dependency which is what happened with me. GPs don't like to admit to this which is why they don't think in terms of withdrawal symptoms.

The psychologist (who has a book published on coming off prescribed medication) has told me that in all the latest studies, it has been demonstrated that 25% of people with anx/dep will get better without medication and 50% of people get better with placebo affect (a sugar pill with no chemical at all) and of the remaining 25% some will have chronic depression and the remainder will get better but because they have been taking ADs it isn't known whether they would have got better anyway.

A woman I met in hospital and stayed friendly with remained on the ADs, though reduced from 150mg to 100mg but she had a further bout of quite severe depression even though she was stillon the medication.

I am not totally convinced that ADs don't work but I have certainly started to question it. The thing is when we take them and get better we don't really know whether this is because of the meds or whether we would have got better in any event. The fact that my friend suffered depression again even though on the meds, also makes me wonder about this. And the fact that 50% of people get better just because they think they are taking something to make them better makes me question this again.

Just some thoughts I thought I would share.

I was on a triyclic AD (imipramine) for 14 years. I suffered a severe depression following the sudden death of my very closest woman friend 15 years ago. I was in psychiatric hospital for 3 months. I tried to reduce the dose over the years several times but each time the symptoms returned and GPs always told me that this was the depression returning and that I mnust go back on the full dose, which is what I did and was OK.

However I began to see a psychologist experienced in mental health and she explained that when I reduced I was actually suffering from withdrawal symptoms rather than a return of the depression. I had been on 100mg for many years (having dropped 50 mg some years ago) and she showed me how to reduce safely - it took me 10 months and I finally came off them last summer with no ill effects at all.

If anyone is interested in her advice on med reduction I will post again.

I really don't have much faith in GPs about mental health -none of them mentioned withdrawal symptoms and all told me that the depression had returned. Neither was I told that ADs can cause dependency which is what happened with me. GPs don't like to admit to this which is why they don't think in terms of withdrawal symptoms.

The psychologist (who has a book published on coming off prescribed medication) has told me that in all the latest studies, it has been demonstrated that 25% of people with anx/dep will get better without medication and 50% of people get better with placebo affect (a sugar pill with no chemical at all) and of the remaining 25% some will have chronic depression and the remainder will get better but because they have been taking ADs it isn't known whether they would have got better anyway.

A woman I met in hospital and stayed friendly with remained on the ADs, though reduced from 150mg to 100mg but she had a further bout of quite severe depression even though she was stillon the medication.

I am not totally convinced that ADs don't work but I have certainly started to question it. The thing is when we take them and get better we don't really know whether this is because of the meds or whether we would have got better in any event. The fact that my friend suffered depression again even though on the meds, also makes me wonder about this. And the fact that 50% of people get better just because they think they are taking something to make them better makes me question this again.

Just some thoughts I thought I would share.

Sorry didn't mean to post twice! Forgot to say that the pschologist recommends therapy as the best way to deal with anxiety/depression, though I know some people think medication and therapy together work well.

NanaNina, you would have to have a very ignorant GP if they did not think about side effects. It is the whole reason that you take reducing doses to wean yourself off, and why you must never come off ads without seeing you GP and preferably your psychiatrist.
Could you explain your paragraph on statistica a little more clearly, it does not appear to show the percentage who take ADs and benefit, usually about 40% per drug, m,ost people being helped by one drug or another.
On that note I would like to say that your friend who has a bout of depression despite being on an AD should see her GP about a change of meds.
Some people with some types of depression need to be on medication to stay alive. For others it is the crutch they need to be mentally strong enough to benefit from therapy. NICE, which is not know for its generosity has done the research and decided ADs are beneficial. It takes a lot of guts to turn around with anecdotal evidence and say ADs do not work.

NanaNina - I am very intertested in everything you have written about withdrawal and would be really keen to read more if you are happy to post re. the particular recommendations of the psychologist. (Do you mind sharing the name of the book you mention?)

I had very very severe withdrawal from seroxat originally this was despite numerous attempts to get off include a couple which were done incredibly slowly. (Over many many months)
I really dont know to be honest whether what i have is a recurrent depression/anxiety or withdrawal.

I always believed it was withdrawal - but at one time I switche to prozac (which isnt meant to have the same withdrawal problems) and again withdrew slowly - but again depression/anxiety returned a few weeks after coming off.

For me - in the past i seem to have got to be very well on relatively low doses of medication (approx 1/2 - 1/4 of a standard dose) but then totally crash when i go lower.

Of course one of my fears is that over time i would need more and more to stay stable.

I hope your friend is ok - that sounds so frightening.

x

thingamyjig - I think you are misunderstanding me. I wasn't talking about side effects (and didn't really have any, part from a dry mouth) I was talking about the difference between withdrawal symptons caused by drug dependence and return of the anxiety/depression.

You say you should not try to come off ADs without seeing GP or Pysch. I twice tried to come off on my own but also tried twice to come off by following the advice of 2 different GPs. Both told me to reduce by a particular number of mgs per day and both times I experienced withdrawal symptoms, which immediately resolved when I went back on the full dose. I am going to post details to Kizzie of the advice my psychologist gave me about coming off and which was successful (for the first time in 14 years) so please have another look at that post if you are interested.

I'm sorry I can't explain about the stats - it was something that the psychologist told me and I am no expert on these matters.

As for my friend who suffered depression while still taking ADs was in fact prescribed several different types of ADs with no effect on her depression whatsoever. Eventually she was prescribed lithium on top of ADs and she seemed to improve.

I think you have mistaken my position on the effectiveness of ADs - I am certainly not saying they don't work - I am in no position to make such an assertion. I was simply saying what my psychologist was saying. She is very experienced and qualified and is a PHd on the basis of a book that she has written (details in next post to Kizzie). This is not anecdotal "evidence" - I am not saying she is right but she has certainly arrived at her position on medication on the basis of research and intellectual rigour. I have been influenced by her position but do not have the skills or experience to know whether she is right or not. She says that many psychiatrists agree with her about ADs but say that they do not have the time to do anything other than issue prescriptions.

NanaNina your posts are always so helpful and full of good common sense. Thank you, you sound lovely

Kizzie - glad you found my post helpful. What my psychologist recommended for me was the following:

1. She said it was really important that I was in control of the reduction and only reduced at a level that I felt comfortable with. She said she would stop me reducing too quickly.

1. I was on 100mgs per day at the time I started reducing.

1. She said that the important thing was that I didn't try to follow a particular schedule (as in the GP thinking of a number of mgs to reduce per day) which is what happened previously.

1. The reason for this is because no-one else knows how a person will feel when they start reducing and this is the reason schedules don't work.

1. She said it would be safe to reduce by 20mg per day - I thought this was too quick and said I wanted to do 10mg - she was fine about this - so we agreed I would reduce 10 mg per day and keep doing this until I felt ready to reduce again (we agreed I would do this for 1 month) - so taking 90mgs per day for 1 month and reducing by 10mg per day.

1. I was to monitor how i felt during the month to check for withdrawal symptoms. She warned I might have some mild symptoms and if they were bothering me then I did not ned to reduce again with the 1 month period. The important thing was that I did not reduce again until I felt satisfied that I ws not having any withdrawal symptoms. I found this very reassuring and felt in control of the reduction which I had never done before.

1. I did have some mild symptoms but nothing too worrying and on one occasion I did wait 6 weeks before reducing again, as I had had a stressful time and wanted to wait longer to be certain I would be ok.

1. I continued to reduce by 10mg per day over 10 months and finally came off them. I have had no problems at all since that time.

I must stress however that the drug I was taking was imipramine (the old fashioned tryclics) and so don't know anything about reductions of SSRIs although I do know that seroxat is renowned for being difficult to come off - don't think GPs tell patient this when they prescribe.

The book that my psychologist wrote is called "Counselling People Coming Off Prescribed Drugs" by Dr. Diane Hammersley. It is now about 10 years old (or maybe older) and it is primarily about helping people come off the major tranquillisers (benzodiazepams) which GPs used to prescribe by the bucketfull some years ago, as you probably know. However the book does also deal with coming off ADs.

I will just check I have given you the right title and post again if I haven't.

Hope things get sorted for you - just noticed that you have only increased your dose a few weeks ago, and it may be that it hasn't kicked in yet.

I am really unsure about ADs and whether they are effective or not - wish I knew! I have been influenced by Diane Hammersely but I also know people swear by ADs....so for me the juries still out!

Thanks so much Nananina - will look forward to reading that post

Hi kizzie,

I've never been on a tricyclic but certainly am a long term AD user (8 years on venlafaxine... occasionally off, but mostly on).

I find I have to vary the dose - I am a bit seasonally affective so generally but not always it goes up in the winter and down in the summer. I also find that major life stresses can still tip me into crisis, even on the AD.

I guess I see it as moving me further away from the edge. Some people walk well away from the edge, some people are put there by circumstance or isolated illness, some of us walk a fine line on the edge all the time. The long term drug takes me away from teetering on the edge all the time but, still, sometimes I do end up back there.

When I have reduced or stopped it (sometimes with my agreement and sometimes without) it has worked again very quickly.

I have a close friend on very long term fluoxetine and I would say the same has shown true for her - she is really really well on 20mg. Suicidal off it. No question, really, what the best thing for her is.

Nananina - thank you so much for taking the time to write that up. Really Really useful. At the moment all i care about it stabilising (keep your fingers crossed for me) - but I will save that info and will definately look up the book.

Notevenamousie- that a really good analogy re walking on the edge. And very reassuring too to read that you also have been able to go back up successfully.

I cant tell you how supportive it feels to hear from other women who have been through similar things. x

Kizzie - the book is actually called "Counselling People on Prescribed Drugs" by Diane Hammersley. It was first published in 1995 so 15 years old now - the book was her thesis for the doctorate which she was later awarded. I've looked it up on Amazon and it's £25! so not sure it would be worth you getting it to be honest.

Another book I found useful is "Malignant Sadness" by Lewis Wolpert. Not sure how much that is.

Getdownyouwillfall - a sincere thank you for your compliment. I post on threads about child protection - as you probably know I have been a social worker for over 30 years though more or less retired now, and I do challenge posters who seem to have a grudge against social workers and post inaccurate information, and I get hammered for it - so nice to get a compliment.

I was hospitalised with my PND and the social workers I encountered were lovely, genuine, caring people. I think you have to be a special kind of person to go into that profession, tho I can understand why some get "hardened" over time, through the terrible stuff they encounter on a daily basis. I too get annoyed when people "hammer" social workers because I really believe they are doing the best they can in a very difficult "damned if you do, damned if you don't" kind of job.

Ninanina, sorry I came across a bit too strong back there. I have been getting frustratd with the attitude that ADs don't work in real life and I guess that spilled over onto here.
I'm glad that your friend eventually found the combination of drugs that was right for he. I am also on citalopram + lithium, and it has taken me 8 years to get here. If each AD works in only a percentage of people then it stands to reason that you might get the wrong one a few times.

I am interested in how it worked reducing by such small amounts - do you have to break and weigh the pills or do they come in the right size? Not a sarcastic q, I might want to do this some day.