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

Hi John, Jenny and all

Glad to hear you are getting there John - hang on in there! and I wholeheartedly agree with your consultant's comment and your own about seeking medical help to withdraw. I appreciate that not all doctors are as helpful as they could or should be but they should still be involved in any withdrawal programme. Can I just say to anyone reading this that after about 4 weeks withdrawal of the second component of Motival I am doing quite well. I wont pretend I am completely there - IBS will prevent that if nothing else - but I have had several good days now and feel that I have turned the corner. If I can do it so can you.

Please keep up the contact to support each other and I will keep you posted on my progress too.

Love to you all

Brenda :ok:

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hi. I have seen all your comments on the website and have been in contact with one person on the site. I have been on Motival for 15 years for anxiety/depression and it was a wonderful drug - my life was SO different with it; I took a very low dose but it made a big difference. I have recently swopped over to nortryptline and Moditen but am obviously haivng the same difficulties with Moditen and the production "problem" they keep telling us about. I am just about to try Trimipremine (which comes from the same family drug as Motival) with the nortryptline as I have been off the Moditen (the anti anxiety part of the drug) for a week now and am suffering from constant anxiety again. However, the consultant I see is Egyptian and he says Motival is available in Egypt!! However you are probably all off the drug by now. I wish you all well with coming off it - I have been off it for six months within that 16 years so it shows it can be done, but I was taking a small dose and it is proving much more difficult this time. I am considering writing a letter to the drug company asking why we can find out no information on the drug - Sanofi say they have no plans to withdraw it and yet have production problems but they don't know what - surely the patients need a better service than this? coming off any drug is not easy and particularly when was has to go "cold turkey". I am considering writing to the drug company asking why we can't get information on the drug and what they expect people to do when they take the drug regularly and supplies suddenly dry up.Joanna M

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Hi Joanna,

I think you are totally right in writing to the drug company. Perhaps we all should? It is a truly awful drug to come off fast and all the literature produced by the drug companies who make Moditen and Nortryptyline and indeed the original Motival pill state that these drugs should not be stopped abruptly. Surely this gives them an obligation to give warning if a drug is going to be unavailable long term? I feel very stongly that drug companies should always ensure they have enough stock to see patients over the time when the drug may be temporarily unavailable - i.e. to think and plan ahead. Considering the profits they make from us patients it is the very least they could do. If a drug is there to prevent suffering then why should patients suffer because of a company's inefficiency and lack of foresight?

Take care everyone

Love and best wishes

Jenny

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Joanna here again. I have contacted Sanofi today as they sent me a letter by e mail saying that Moditen would be produced shortly again in October but there are "production difficulties". I stressed we had been told this for quite a few months now and that if we knew one way or the other whether it would be discontinued we could make alternative plans. I pointed out that there were quite a few ill people now withdrawing from this drug. they said they were a third party - but i expressed our concerns to them.

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HI Joanna,

Well done for doing that. I too have written to them - I think the more people that write the better to be honest. I feel it's important that they know just how appallingly badly people are suffering because of what appears to be their inefficiency in keeping in sufficient stocks of the drug to cover any shortfall in production. The drug company is Sanofi and they are based in Guildford Surrey.

Best wishes to everyone

Jenny

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Hi, I have read all the comments on the site and it is very reassuring although sad to read about peoples suffering. My mum who is 85 years old has been on Motival since my dad died 23 years ago. Like everyone else we went to get her prescription to be told there were manufacturing probems, she was put onto Nortryptyline and Fluphenazine (we could not get this) and she was prescribed Haliperodol, she ended up in hospital with poor liver functions due to the Haliperidol. She now is on Citalopram and is experiencing terrible withdrawal symptoms from Motival including nausea, tummy problems, nervous stomach, insomnia, breathing problems in bed and general malaise. Mum has gone from a very active woman to someone who has no motivation to do anything. We were really worried about her and did not know why she was experiencing all the symptoms she had it was so reassuring to find this site and read about the problems everyone is having which were similar to mums. Although it is awful to see mum suffering like this at least we and she now knows why. Thanks for the site. Liz.

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Hi Liz

So So sorry to read about your poor mum. It is so upsetting to hear that yet another person is suffering because of Motival and that is just those or their relatives who have visited this site. I really do feel strongly that the manufacturers of Motival have a lot to answer to.

An update on my story above is that during the last few days I have really started to feel a lot better - still a way to go but definately getting there. Give your mum my love and tell her we are all routing for her.

Best wishes Brenda:ok:

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Hi Liz,

Like Brenda I was so so sorry to hear about your poor Mum. Brenda is totally right in that Sanofi Aventis the manufacturers of Motival have a lot to answer for in all the suffering their inefficiency and lack of planning has caused. Liz....I hope so much your poor Mum starts to feel better soon.

Brenda well done and I am so pleased that you are continuing to do so well - as I said before you are an inspiration.

Take care everyone

Best wishes

Jenny

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Hi Brenda & Jenny,

Thanks so much for your replies and your kind wishes for my mum. She saw her doctor today and I discussed with the doctor the issues raised on this site. She confirmed that on coming off Motival abruptly patients may suffer the withdrawal symptoms described here. I enquired about mum being prescribed beta-blockers to help with the her heart racing/palpatations in bed and the doctor has prescribed a low dose of them for her also a low dose of Diazepam.Although I am not totally happy with mum being prescribed Diazepam I have to think about her and hope she will get some relief with taking these drugs for a short time even until she gets over the worse of this, it is awful to see her so tormented with these symptoms. I hope both of you can recover soon from this nightmare and send my love and best wishes.

God Bless

Liz.

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Hi Liz

If a low dose of Diazepam helps your mum and it gives her some relief from her symptoms go with it. I don't know much about Diazepam but anything that help with these awful withdrawal symptoms is worth trying. Together with the support she is obviously getting from you she will hopefully start to feel a bit better soon.

Best wishes to you both

Brenda

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Hi Liz,

I totally agree with Brenda if Diazepam helps her through this horrid patch in her life then thats great. Diazepam is a far less potent and less harmful drug than Fluphenazine although it is addictive if used in the long term. As you may have read in my earlier posting I too have been prescribed Diazepam (Valium) to help me over the very bad times. So far I have not used them but I hope so much it helps your poor Mum bless her. I hope also the beta blockers help her. I too am on a low dose of a beta blocker called Tenormin (Atenelol) and I do find that helps me a with the heart side effects of coming off the Fluphenazine.

It must be so awful for you to see your Mum so unwell as the withdrawal effects really can take over life. I am sure as Brenda so rightly says with your help and the help of the other drugs in short term she will start to feel better. At least she will be free too of the nasty possible side effects that Fluphenazine can cause.

My love and best wishes to you and your Mum

Jenny x

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Hi everyone

I am so glad that I came across this site and to read all of your views. My grandma is 82 and has been on Motival for over 20 years for her tummy problems and she is having major problems adjusting to the new combination drug as described in the previous emails. Like the most of you, her GP was really unsympathetic. She is developing ringing sounds in her ear as the side effect similar to sitting on a plane taking off and it was so bad the other day, she nearly got run over, as she didn't 'hear' the car approaching. I wonder if any of you are experiencing this side effect in your ear? I am going to share your experiences to her because I know it will reassure her alot.

And thank you all for sharing your experience. You are proving to be quite a support community!

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Hi Susan,

I am so sorry to hear that yet another poor person is suffering from the effects of Motival.

I have not personally experienced any ringing in my ears as a withdrawal effect but I am sure if anyone else on this site has they will put up a post on here. I too found it took a long time to re-adjust to going over to the two separate components of Motival.

Your poor Grandma does not need and should not have to be going through what she is at the wonderful age of 82 bless her heart.

Yes it is a lovely community on here and although none of us wants to hear of anyone else suffering it does help everyone to know that they are not alone and not imagining anything despite what the GP's might say.

Please give my very best wishes to your Grandma and I do hope things improve for her very soon

Jenny x

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Hi Susan

Yes I agree with what Jenny has said above and I do hope that your poor Garndma starts to feel a bit better very soon. I did not have ringing in my ears either but then I am not 82 - maybe being that little bit more senior has made her more sensitive in certain areas.

Just to give everyone a little bit of encouragement I hope - I am about to do something that I would not have considered even 2 weeks ago - I am going on holiday at the end of the week! My husband and myself booked it before the Motival fiasco and we have been sweating on me being fit enough to actually go. I am not 100% yet but I do feel more myself. The symptoms in general have lessened considerably - especially during the last week plus the awful feeling of exhaustion has lifted. It has been just over 5 weeks since I stopped the second component of Motival (Nortryptyline)completely and I am now only taking Colofac for the tummy troubles (keeping my fingers crossed that I dont pick up any holiday tummy while I am away!). So to all you fellow sufferers KEEP GOING!

Very best wishes

Brenda :D

FOR THE ATTENTION OF THE MODERATORS

A BIG THANK YOU TO THE PROVIDERS OF THIS WEB SITE. I KNOW I AM NOT ALONE IN FEELING THIS SITE HAS HELPED ME TREMENDOUSLY XX

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Having been transferred to nortryptyline by my doctor when motival was no longer available I received no advice or warning of what could follow. After six weeks of severe headaches ,nausea and the onset of anxiety I returned to the surgery and was prescribed naproxine for the headaches. The symptoms only increased. I then sat down and tried to analyse the sequence of events and returned to see another doctor in the practice and put it to her that there was a link between the replacement of motival by nortryptyline. Possibly she said, consulting her book of drugs, and then adding " You may have withdrawal symptoms."

I returned home, powered up the computer and did a search on " Motival withdrawal symtoms" and came up with your marvellous site. Thank goodness for the internet. I now feel much better having found out what exactly is going on but I am so angry with my local doctors, none of whom have been any help, and the manufacturer who has been grossly negligent.

I am continuing with Nortryptyline as to try and drop this element of Motival immediately will only add to my problems but plan to withdraw from it in a controlled way once I get rid of the Fluphenazine withdrawal symptoms.

I am truly grateful to have found your website but sorry that so many people are suffering because of the ineptitude of some of the medical profession and the drug manufacturers.

Thanks again.

Tom

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