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Mental health

Coming off Dosulepin

20 replies

orangeflutie · 11/08/2010 21:44

I've been taking this AD for six months and have recently started to feel a lot better. I spoke to my GP yesterday and she is ok about me reducing my dose from 75mg to 50mg then 25mg so that I can slowly come off it. Have reduced to 50mg tonight and hope I'll be ok. One of my concerns is I'll start having problems sleeping again. Does anyone have any experience of coming off this AD?

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topsi · 12/08/2010 07:31

Do you think you are feeling better because the AD are working or because your circumstances or mind set have changed? If you feel you will start to have problems again when you come off, then why not stay on them?
I am just speaking from the experience of taking AD feeling better, comming off them then crashing again because in reality nothing has changed to make me feel any different. It can become a vicious circle.
Not saying that this is the case just posing a question.

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orangeflutie · 12/08/2010 08:06

I'm not sure whether I'm feeling better because of the ADs or if I really am better TBH. The cause of the stress I was feeling has gone, a large part of which was having to move house and DH unwell, but DH still has to get another job, so not out of the woods yet. I do feel at the moment I'm generally happier so thought it worth giving a go.

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orangeflutie · 13/08/2010 17:05

Feeling low today:( am not sure whether this is because I've reduced my dose by 25mg or because today has been a bit disappointing anyway. Also it's raining which doesn't help.

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GetDownYouWillFall · 15/08/2010 08:36

hi orange just offering a hand of support here.

I am coming off my AD too, it's not the same one as yours, but it's also a sedating one that helps me sleep.

I was like you, in that I was very concerned that my sleep would be affected if I came off. Basically insomnia was the main feature of my depression, and the lack of sleep totally wrecked me and I became terrified about not sleeping, hence perpetuating my problem.

Basically the way to do it, is to do it really really slowly. My psychiatrist doesn't understand me because I am literally shaving tiny portions off my dose, she says that the dose I am on now is so tiny it won't be doing anything for me/

However, what she doesn't seem to get is the psychological attachment to taking a pill and then being able to sleep.

For me, shaving tiny portions off has been the way to go.

I have also introduced a vitamin pill at the same time as taking my AD - basically when I stop my AD I will still take the vitamin pill, so hopefully the psychological attachment to taking a pill will not be removed when I stop. Hope that makes sense.

Anyway, remember that "normal" people have good and bad days too. You had bad days before all this happened. It doesn't necessarily mean you are getting ill again

Take care

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countrylover · 15/08/2010 13:45

hi orange - i am in almost exactly the same position as you in that i am coming off dosulepin after being on them for just under six months. the main feature of my pnd was also chronic insomnia coupled with crippling anxiety surrounding not just sleep but general every day living.

i was also on 75mg and two weeks ago i started taking 50mg. as yet i haven't noticed anything different and i've even had pmt thrown into the mix but still sleeping well.

when i say sleeping well i mean i have good nights and bad nights but i honestly don't care anymore. the anxiety hasn't come back at all. last night i was restless all night and i was awake for at least two hours but i don't feel remotely anxious about it. i just know i'll sleep better tonight.

i'm going to keep on 50mg for another 4-6 weeks then go down to 25mg. i must admit though that i'm a little aprehensive about coming off them and it coinciding with the start of winter. but i'm feeling quite confident it will be ok.

i hope it is for you too.

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orangeflutie · 15/08/2010 17:12

Thank you GetDown and Countrylover. I have been especially worried about not sleeping and know what you mean Getdown about the psychological thing about taking a tablet at night and then knowing you will sleep.

I've been on 50mg since Weds night and so far sleeping ok, maybe a bit more restless. My mood has improved since my last post and I think you're right GetDown in that everyone has good and bad days but when you've been depressed you're worried that you're going back down. I think my confidence in myself has been hugely affected too by my depression and anxiety.

I'm also wondering if I'm doing the right thing coming off my ADs, now that it's getting nearer Autumn and Winter, but I guess I'm going to have to take it one day at a time.

I'm extremely lucky that I have a lovely supportive GP and I know that if I do feel I'm sliding again she will be there to listen to me.

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GetDownYouWillFall · 15/08/2010 17:50

I totally know what you mean about your confidence going after depression. I find myself I am always scrutinising my behaviour and thinking "is this me going downhill again?" Also I try and avoid things that will cause me stress and pressure such as getting a more senior job for example.

However, little by little your confidence does improve. And think how good it will feel to get off the tablets... that's what I feel anyway. See it as a little challenge.

And even if you do have to go back on them at some point, it's no failure, just tell yourself it's for a time, and when you feel ready you will come off them again.

Paul McKenna's book "I can make you sleep" has lots of helpful advice about sleep.

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orangeflutie · 15/08/2010 18:22

I'll try and get the Paul McKenna book, I've heard it's good. I'm trying atm not to drink coffee everyday. I only have one cup a day anyway but it does have quite an effect on me. It's difficult because I enjoy it but I hate not being able to sleep.

I thought it would be harder coming off my ADs during the school holidays, but actually in some ways it's probably easier as I don't have to rush about so much getting three DDs ready for school. Part of my problem and for all mums I think, is doing too much. I'm having to slow down a bit now it's the hols and although initially I was worried about too much time to fill, find I'm enjoying the break from the usual routine.

It will be interesting to see what happens when my DDs go back to school and I go back to work. I only work parttime, but it's a juggling act.

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GetDownYouWillFall · 15/08/2010 18:57

If you have a cup of coffee first thing in the morning it's unlikely to affect your sleep by the evening, but agree, it's good to cut it out if possible. I have a rule not to have caffeine after 2pm.

I have found a really nice herbal tea that I drink in the afternoons, normally I at herbal teas, but this one is actually quite refreshing! Green Tea with Orange and Lotus Flower

Having 3 DDs - no wonder you're busy! I find it tough and I only have 1!!
Remember to use all your coping strategies and try to think of going back to work / DDs back to school as a positive thing - more time away from home, a routine that will help your sleep etc. It won't necessarily be harder you know Smile

Have you tried some online CBT, it's free and worth a go as you've nothing to lose

Try:
Mood Gym

or

Living Life to the Full

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BeckyBendyLegs · 15/08/2010 18:59

Hi there! If you want to you could join us on the 'insomnia' thread. We've all had / having similar experiences. I had my DS3 nine months ago and suffered from anxiety and insomnia January onwards. I'm much better now but get a lot of encouragement and support from everyone on the insomnia thread :)

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BeckyBendyLegs · 15/08/2010 19:00

PS Paul McKenna is a wonderful man! I used to think he was just some slimey git but he's very clever. He's helped me a lot.

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orangeflutie · 15/08/2010 20:07

Thank you for the links GetDown I'll have a look at them, anything that will help! Will also try the Green tea you mentioned. I know what you mean about herbal teas, the only one I like which I've discovered recently is Camomile, vanilla and honey. I can't drink camomile on its own though.

I've been to a couple of group sessions on anxiety and had a couple of phone calls from the mental health team, but will definitely give the online CBT a go. (probably more helpful).

BeckyBendyLegs I may be joining you on the 'insomnia' thread probably when I get down to 25mgs:) I know I have problems relaxing. I know I'm going to have to go now and help eldest DD dry her hair:o !

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WurzelBoot · 17/08/2010 13:47

Hi Orangeflutie! Sorry, I hadn't seen this thread before now.

I'm on Dosulepin now and have been since Nov 2008 and before that have been for a period when I was 21-23 (10-12 years ago). I was on 150mg for most of that time, and the nice thing I found was that it was almost instantly clear to me whether it was the right time to come off them or not. Each time we tried it was a disaster (exaggeration, but certainly not good) and I simply increased again. The time that it was right to come off them, coming off them wasn't a problem, and there were no ill effects. I probably felt slightly different but there were no bad effects.

I feel quite experienced with the drug now, so that with this bought of illness I knew when I needed to increase (with the doctor's permission), and when I needed to decrease. I reduced down to a pill and a half and was fine, then down to just 1 pill (75mg) and was up a certain creak. I went up again to the pill and a half (112.5mg - that's good to know), and I'm happy and comfortable there.

I'm not really sure why I'm giving you my history, other than to say it's worth keeping an eye on, particularly if you're not getting enough sleep.

One thing I'd say though; 6 months seems a little early to be coming off them. Generally speaking it can take 6 months just to find your correct therapeutic dose, then several more months for your body to regulate itself. If your doctor has advised coming off now, then it's worth trying; they're the doctor and I'm not! Besides which, no two people will have the same experience. However, if it doesn't work out, don't be afraid to go back and tell him/her that, and take the time you need.

Other herbals that might be worth trying are Kalms during the day to maintain a level of calm, and rescue remedy.

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orangeflutie · 17/08/2010 17:46

Hi WurzelBoot thanks very much for your reply. It's interesting reading about the different doses you were on. I didn't go up to 150mg, but was on 100mg for most of the six months I've been taking Dosulepin. This dose suited me very well for a time as I liked the oblivion I got at night time and needed the cushion it provided. However after a while I noticed I was finding it quite difficult to get up and get going in the morning, and in the week I needed to be a bit more awake for the school run and work etc. I spoke to my GP and she was happy for me to reduce to 75mg. I have to say I've been very happy on Dosulepin and haven't suffered from any side effects.

Before I took Dosulepin I was prescribed Citalapram which made me feel like I'd had too many coffees. I felt sick and had no appetite. I waited for the full six weeks, hoping the side effects would wear off. Eventually I saw my GP by which time I had lost half a stone, through having no desire to eat until evening. She took one look at me and said to come off and she would try another AD. I had a small break and then went onto Mirtazapine. I took the first dose one morning and took the DDs to school, feeling a bit dizzy. I got back and went to bed because I felt so rough. I then got up later and tried to make a cup of tea, still feeling dizzy. I remember my DH asking for one too and then I was on the kitchen floor.

It turned out the Mirtazapine had caused my blood pressure to drop too low and slowed my heart rate. The ambulance men came and I ended up in hospital on a drip as they thought I was also dehydrated.

My GP was quite alarmed when she found out what had happened so took her time to find something safe for me to take, hence I ended up on Dosulepin (such a relief to find something that actually worked!).

Sorry this has turned into a bit on an essay!
I'm hoping I'm doing the right thing and not coming off too early. The last few days tho I've felt really good so fingers crossed:)

I shall definitely give Kalms a go if my sleep problems return and rescue remedy for emergencies.

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WurzelBoot · 17/08/2010 20:00

Interesting, we have almost exactly the same responses to SSRIs! I haven't met anyone else that reacts that way yet! I've been on Fluroxtine (this was my worst), Citalopram and Sertroline - all caused dizziness, coldness, shaking and 'suddenly falling asleep' as I put it at the time; didn't feel the same as fainting. My blood pressure is low at the best of times and I somewhat regularly go into shivering heaps, so your explanation is ringing a lot of bells in my head! Some of them were less bad than others, but they tended to give me all the symptoms of panic attacks (or, like you say, caffeine overdose).

I think I'm quite lucky because the original diagnosis was way back when Dosulepin was much more the go-to drug so was given it straight away (it was called dotheipin at the time). In intervening years, and with this most recent episode, I was first tried on the SSRIs. When a situation happened that was so beyond my ability to cope with, I went back and asked for the Dosulepin as we knew it worked for me and I didn't think we had any more time to mess around. At first I was put on 75 which helped control but didn't stop a big breakdown and then it was put all the way up to 150 again.

One thing I've noticed is that younger doctors tend to have much less experience with this drug, and they seem to want to start me on a lowish dose. When I saw the older doctor at our practise he was quite specific on the 'you need more' aspect. He was not wrong!

I reduced because I was having some side effects; tiredness being one and very acid stomach being the other (I find them hugely acidic). One problem I have is that one of my major depression symptoms is tiredness so it's hard for me to know whether I'm tired because of the illness or the medication!

Anyhow, sorry to go on a bit! I've found among my friends it's an unusual drug to be given, so I find your story fascinating!

I'm really glad the first few days have gone well and really hope it continues for you! Part of my is resolved that I'll now be on these for life but you never know; I might try again to reduce at my next review in October. Once again, good luck with it - best wishes to you!

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orangeflutie · 17/08/2010 21:47

Wow I do feel better now that we've shared experiences. It's true that when I have mentioned before that I was on 100mg Dosulepin, people would look at me oddly and say that they thought that a high dose. I think most people do tend to get offered SSRIs and the dosages are much smaller. But of course the normal starting dose for Dosulepin is 75mg!

You're right about younger doctors not having the experience of this drug. It was not my usual GP who put me on Citalapram, but the one I normally see said to me that she was aware that the older tricyclics have fewer side effects. Also as I was getting thinner she wisely guessed I would need an AD that slightly increased appetite.

If it's working for you at the moment it's probably best to stick with it. All the best:)

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orangeflutie · 17/09/2010 13:14

I just thought I would update on this thread. I'm currently on 25mg and my GP has advised me to stay on this over the Winter months. If I want she's suggested reducing again to 25mg every other day in March.

I'm a bit disappointed it will take me longer to come off, but as I've not had any withdrawal problems or any side effects, I guess I shall be following her advice.

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topsi · 17/09/2010 13:58

Well done Orange have you thought of a light box to see you through the winter months

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orangeflutie · 17/09/2010 15:53

Thank you topsi I have thought of getting a light box but will see if I can maybe get one secondhand as they seem to cost quite a lot new.

I'm going to start taking Vitamin D supplements as they're supposed to be good for the winter. Anything that helps really.

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topsi · 17/09/2010 16:08

Yes you could take a good quality multi vitamin maybe with extra vit D and B complex, also omega oils may be helpful

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