I have been on this drug i.e. Motival for 27 and a half ...

Hi

I like John have come across this site by chance (thankfully). It has been very reassuring to hear that I am far from alone.

I have taken Motival for 10 years primarily for 'tummy problems' and it worked a treat. I did query with my doctors on varous visits about being on this long term but the attitude seemed to be if works stay with it.

In March I too found out that Motival was unavailable and was presecribed Allegron 10mg (Nortyptylene). As I had decided myself to taper my dose of Motival down to one a day a long time previously I did hope not to suffer too much. Well thank goodness I had done because I still felt absolutely awful for a few weeks but gradually began to feel more myslef again.

Several weeks ago I started to suffer with a bad taste in my mouth and difficulty sometimes in swallowing so I queried with the doctor if this could be anything to do with the Allegron. I was told that one of the side effects could be a dry mouth, to chew sugar free chewing gum to encourage saliva and come off the Allegron completely. In fact the actual expression was 'go for it'(!!)

Not being too brave I did try cutting the tablet in half for a while - not easy on the tiny tablets but as the taste in my mouth was really getting to me I did do as the doctor said about two weeks ago and stopped completely. I now feel awful. Generally unwell, sicky, light headed, some tummy cramps (just starting)very tired although not depressed (been there, done that with post natal so I know the signs). I am still having some difficulty with swallowing but the good news is the bad taste has almost gone! As the biggest effect is me going to loo more fequently I have now got the added worry for the past week of streaks of blood in my poo which I am hoping is internal piles or something as I have a pain (literally) in the bum. Before anyone tells me to get it checked out I am going to the doctors tomorrow.

At the end of the day I am just annoyed that I like many of you have been wrongly advised to stay on unsuitable medication long term only for it to be suddenly unavailable and causing distress.

I have printed off this whole site to read more thoroughly and to show my husband who thankfully has been a great support to me.

Sorry to list my tale of woe but it has just been so reassuring to come onto this site and find out that I am not alone it has made me feel a lot better metally if not physically - Thank you all

Please take care

Best wishes Brenda

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PS Sorry about the typing errors above - I am usually a lot better than that - must be the lack of tablets !!!

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Hi just an update on the above. I saw a different doctor yesterday who was very helpful and sympathetic. The pain in the bum problem she feels is internal piles and all connected to the withdrawal symptoms. As is the problem with swallowing. Has anyone else had this one?

I have just re-read my opening comment on my initial posting and would like clarify what I said about it being very reassuring to know I am not alone. I would not want anyone to feel the way I have been feeling in recent weeks so wish that none of you had to post your comments in the first place.

Take care

Brenda

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Dear Brenda,

I am so glad that your different Doctor was so reassuring. It makes all the difference in the world if you have a helpful and supportive GP - they seem to be rather a rare breed where withdrawing from drugs such as we have been on are concerned.

I can totally relate to your internal piles as I have been suffering all sorts of gut pain and diarrhoae (please excuse spelling on that one!) since tapering off and it seems one day I have to rush to the loo with awful gut pains and then the next I can't go to the loo at all for several days - very bizarre and definitely connected to the cut down.

You should not feel bad at all about finding it reassuring to find other people who are going through a similar experience with withdrawing from these vile pills - I am sure we all feel exactly the same and it is a huge relief to know that the symptoms we are getting are the "norm" for people withdrawing from these pills. I find my worse symptoms now are crippling headaches and feeling very panicky some days with nightmares and disturbed sleep after each cut down I do.

Take care and I think you are very brave in persevering in coming off the pills - well done you.

Best wishes

Jenny

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Dear Jenny

Thanks for your support and poor you with the crippling headaches - that's about the only thing I have not had (so far!) but I think I am building up to the bouts of gut upset as the IBS takes hold again. The Motival may be a devil to withdraw from but boy it kept me well. I am just glad that I had cut myself down gradually to one a day by the time they very kindly stopped supplying them. Having said that it took me a year to get that far!

One comment my new doctor did make was that Motival has never been a very good anti-depressant but is used by lots of doctors for IBS and pain relief. She also said it has been around for years (at least 40) so trust us poor soles to be the ones to be on it when it suddenly becomes unavailable!

Anyway keep with it Jenny

Best wishes

Brenda

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Hi everyone,

Can I firstly say "Thank God" I found this website!!! My mother has been going through the same hell as you all for the last 4 weeks after 35 years on Motival. I made her sit and read your comments yesterday and she is so much better since - it reassured her so much to know that she wasn't alone in her suffering!!Like you I have been doing lots of research on this and have today come across a drug called Triptafen which, on the face of it, seems to be a combined drug consisting of the main 2 ingredients of Motival, Amitriptyline (similar to Nortriptyline) and Pherenazine (similar to Fluphenazine). I have spoken to her GP who agrees that it may be a good substitute and has presecribed it for her. I just thought I'd share this with you all in case A) it helps or B) any of you have already tried this combination and could tell me your thoughts.

Good luck to each and every one of you - hang on in there!!

Tina :D

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P.S.

In case this is of interest to any of you the Website where I found out about Triptafen was

www.tiscali.co.uk/lifestyle/healthfitness/health_advice.

Hope that helps!!

Tina:D

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Dear Brenda,

Firstly many congratulations on getting down to one Motival over the past year. I know just how incredbly difficult it is cutting down and I think you have done amazingly well.

I can so understand the IBS problem you envisage happening as although I was not put on the Motival for that condition I sure seem to have developed it whilst I am withdrawing from them. I gather the Nortryptyline part is used to stop bed wetting in youngsters and that too has a rebound effect when it is being cut down on. I have not had to endure that (yet!!) as I am only cutting down on the Fluphenazine part at the moment. I really do not want to transfer on to any other subsitute drug if I can possibly help it as I feel that would just put me back to square one and I would still be addicted but just to another drug. That being said there are some days when I feel so rotten that temporarily that determination does waver briefly but I know I would be so angry with myself later on down the line if I gave in. My partner bless him has been amazing in his support and I know full well if it were not for kindness, support and understanding I would be lost.

It's really interesting what you say about Motival being used for pain relief and a treatment for IBS as I have read that a lot of people have been put on it for that. Is there anything else you can use to treat your IBS which is not harmful and addictive like Motival was? Do things like buscapan work? ( I think that is an anti spasmodic drug)

I had no idea that Motival had been around as long as 40 years although I knew it was on old drug and that treatment beyond 3 months duration was not advised. I do feel very strongly though that drug companies should have both a moral and a statutory obligation to not phase out a drug that is so addictive without giving at least a year's warning which would give people time to get in enough supplies of the drug to taper off slowly and safely without having the huge worry of having to do a cold turkey which is both highly dangerous and a very cruel (and unnecessary) thing to have to do.

How are you and how are you coping with being off everything now? I think you are incredible if you are managing it as from previous experiences of doing so I know I would be on the floor so well done you - fantastic.

Take great care and look after yourself and do let me know how you are getting on. If you feel you would like to email me direct then please feel free to do so. My email is ****

Best wishes

Jenny x

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Hi Jenny

Thanks for the kind comments. I wont pretend it has been a 'walk in the park' over the past few weeks but I would like to say to you and of course the other people on this website that I do begin to feel I am slowly winning now. It has been about three weeks since I completely stopped taking the Nortryptyline part of the Motival cocktail, having stopped and suffered the first part at the end of March (see no 30 above)I am still having bad days but not as bad and I am also having quite good days too. By the way Jenny I have not had any rebound effect re the bed wetting that Nortryptyline is also prescribed for in children(!!) I still feel quite tired but I am also having little bursts of energy and feel more motivated to do things on the good days. I am not feeling quite so sicky now and less light headed too.

I will confess that I am getting a little help with the increase in loo trips and pain in the gut and bum problem. When I went to my lovely doctor she prescribed good old Colofac (Mebeverine Hydrochloride) which I have not had to take for the 10 years on Motival. Like any medicine, it does not work for everyone, but it is an antispasmodic which relieves spasm and pain in the intestine. It is NON ADDICTIVE and you can taper them off gradually when the desired effect has been obtained. You can drink alcohol and they will not make you drowsy.

At the end of the day it is helping me to get through this miserable period and has helped already after only taking for a couple of days.

I would like to know how everyone else is doing too.

Hang on in there everyone

love Brenda x

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Hi Brenda,

You really are an inspiration. I was feeling really low today as the last cut down has left me for 2 weeks feeling really rotten but reading your posting has really cheered me up and given me hope. I sometimes get to the point of thinking I can't cope with feeling this rotten for another 6/12 months whilst tapering off but I have been told that the fluphenazine part is the one that's so hard to get off and my Consultant says the Nortryptyline part is a lot easier so I hope that proves to be the case for all of us. Half of me says "go for it" and stop the fluphenazine completely now but I know what happened to me last time and how ill I was when I did that. I am down to slightly under 0.25 of a mg of fluphenazine a day now - I cannot believe what a huge effect such a tiny amount of the pill has - I read somewhere that Fluphenazine is 200 times more potent that Valium and I can believe it.

I am so pleased that you are having good days now and feeling more motivated. The lack of energy and motivation is one of the things I hate about this scenario as I used to have endless energy. It has cheered me up no end to hear that you are regaining yours as it gives the rest of us so much hope and so much to look forward to.

Keep going and again well done you for being so brave and persevering - you are obviously beginning to smell the roses again and I am truly so happy for you.

Take care

Love,

Jenny

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Hi Jenny

Come on hang on in there - it will all be worth it in the end. Yes the fluphenazine withdrawal is the worse part so once you are through that you can only go upwards and you too will be able to smell the roses again.

I guess a lot will depend on what you were put on Motival for in the first place. Obviously as mine was for intestinal problems and not any type of depression this may have made it a little easier for me. Having said that I did have post natal depression after one of my children some years ago so I do know what depression can be like.

Everyone on this website just remember that although you or your family member may be feeling really rotten just now and need lots of love, support and TLC, like any withdrawal symptoms they will come to an end.

Best wishes

Brenda

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Hi Brenda,

You are of course dead right - it will all be worth it in the end and I shall definitely not quit the battle - just had a bad day yesterday but am feeling much more human today.

I was put on Motival 28 years ago for post natal depression but also I was in a very different position relationship wise then as to what I am now. I have absolutely no reason in the world now to feel depressed so I am sure that once I kick the tablets life will be really great.

You are so right in what you say in your final paragraph - without the love and comfort and support I have recieved from my partner I think I would have been incredibly scared at the thought of having to come off a drug that I have been on for so long. I hope that perhaps other people reading this site will show all the postings on here to their other halves/families/friends which may make it easier for them to understand what we are all going through. Also the internet and this site have been a real boon as it makes me realise just how many other people out there are in the same postion. Research on the internet has also proved invaluable.

How did you do your tapering down on the Motival when you dropped down over a year to one Motival tablet a day? Were you filing the tablet or powdering it?

Take care and I hope today is a really good day for you.

Best wishes

Jenny

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Hi Jenny

I was surprised to read that you have been on Motival for 28 years but my lovely doctor said that whether you have been on Motival for 1 year or 31 years - the withdrawal will feel the same.

You said you have absolutely no reason now to feel depressed and I am sure you will be fine once you kick the tablets especially as your home situation is obviously different too. Having said that depression does not always work like that does it? You can have everything in the world that you desire and still feel depressed through no fault of your own - it's a complicated illness and not one I want to ever go through again.

You asked about how I tapered down the Motival. It was not very scientific I am afraid. I was originally on one three times a day, I dropped the middle one first and after a while - probably about 4 months (with not feeling too bad)- I dropped the morning one. After another 3 months or so I did actually drop to one every other night but the IBS kicked in and I felt achey and off colour so I went back to one a day until this March when they became unavailable.

Have a good day

Best wishes

Brenda

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Dear Jenny,Brenda and others,

Thank you for the kind responses to my earlier posting and sorry for the delay in replying ( I have been away from my computer)

It's now four weeks since I stopped taking the motival. It was pretty unpleasant ( IBS/backpain/insommia) to begin with but the last week has been better. However, over the last twenty years, I have tried to come off them on a number of occasions without success. This time the withdrawal of the the drug has given me an extra incentive. I would stress however the importance of taking medical advice before anyone tries what I am doing. As my consultant has said to me on many occasions over the years - " you have to balance the downside of taking drugs against the upside of mitigating the symptoms of your condition"

Good luck to everyone, and as has already been said, its nice to share our experiences.

Regards,John

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Hi Brenda, John and all,

Thanks Brenda for your reply. In answer to your question yes you are dead right depression can strike the most unlikely people who seem to have happiness, security and everything they could want - such is the nature of the illness sadly. I do feel though, as mine was caused by post natal depression which has a hormomal element, that hopefully as my daughter was born 28 years ago I should be well over that by now!!

John well done for being so steadfast in your determination to quit the pills and I am sure you will succeed. Like you I have tried to come off them before unsuccessfully but this time the drug company has given us no option - maybe in a strange way it's a blessing in disguise - as you say it's given us no choice and a huge incentive to quit once and for all.

I am doing it the long slow way as that is the way I can do it and still continue on a day to day basis albeit that some of those days are pretty horrendous - I appreciate I am lucky in that I have enough of the two drugs to do it this way although it's a pretty dreary thought sometimes to think of months of it ahead but also very inspiring to read how all you brave people are succeeding. I think we should all write a book! Thank you to the people who run this site as it has helped me and I know others to learn none of us are alone in what we are going through.

Love and best wishes to all

Jenny :ok:

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