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

I too am suffering the withdrawal effects of stopping Motival after having been on them for over 20 years (one per day mostly). I have been prescribed them for IBS and they have worked brilliantly and enabled me to manage the condition. Unfortunately in my case I didn't have the opportunity to phase them out because I just went to collect my new prescription four weeks ago and found there were manufacturing problems. Consequently I have had to stop suddenly, although my GP has presribed 10 mg Nortriptyline. I am now in a situation where I am spending most of the weekend in bed, with the IBS symptoms returning together with loss of appetite, not wanting to communicate with anyone, not sleeping, agitation, tearfulness, and lack of motivation in anything. I just want to crawl into a corner and be left alone. I have, however, continued to work full time but with an overwhelming daily struggle to even get to the office, let alone do my work. I am planning on returning to the Doctor to see what else he can offer me - I can't go on like this. I wonder how many other people are suffering like us.

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I have been on motival for 6 years and like you went to fill a prescription only to find couldn't get it anywhere. I went to the doctor and he prescribed nortriptyline 10mg tablets, two a day. After two weeks I was in a right state and had severe anxiety and bad panic attacks and couldn't eat. I lost 7lbs in a week and went back to my doctor which was an effort as I could hardly leave the house and was holding on to my husband. Anyway he prescribed fluphenazine tabs 1 mg, one daily to take with the nortriptyline and am now feeling more like my old self and am much calmer. I am now able to go out and about again and the appetite is back. If the motival is discontinued at least I know these tablets are available and sometime in the future should be able to cut down slowly with the doctors help. Hope this is of some help.

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Hi Janet and Pam,

I have just logged on to find both your postings on here. I was really interested to see that other people too are going through exactly the same as I am. I feel so much for you both as I know only too well what the withdrawal effects are like. I am nearly down to half the daily dose now but it has been a huge struggle to say the least. My partner bless him has obtained for me a set of milligram pharmaceutical scales and we have been tapering down indrecibly slowly and accurately. The tablets of Motival weigh (in weight terms not drug content) 320 mgs. I started by cutting down 20 mgs a week (and once 40mg a week - never again - it was like being in total hell) but have found that it is too fast. I am now doing what the \"bible\" of coming off anti-depressants \"Coming off Anti-Depressants\" by Joseph Glenmullon suggests and only doing a cut down once a month. Like you Janet I have discovered that they do the two ingredients seperately and will go on to those as soon as my Motival tablets have run out. My GP has been about as much help as a chocolate teapot and totally unsympathetic and unhelpful in every way.

Everyone re-acts differently to coming off these pills, some can do it fairly quickly others (me!!) need to take months and months to do it.

Pam all the symptoms you describe - I have been there and will be going there over the next few months. I suffer with bad flu-like symptoms, fevers, dizziness, vertigo, nausea, crippling headaches, very tearful and down at times, insomnia etc, etc.

Pam as Janet says you can obtain both the separate parts of Motival so that may be of help to you. I think the most addictive part of the drug seems to be Fluphenazine part which can now be obtained as \"Moditen\".

If either of you would like to email me please feel free to as I would really love to correspond.

Take care both of you

Best wishes

Jenny

email: ****

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I was just put on Motival for IBS. Isnt it an antipsychotic? Also, in the package insert it says only for short term use, is this new?

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Hi Carrie,

Yes the fluphenazine part of the drug is an antipsychotic and yes it is recommended for short term use only. The problem is that it is a very addictive drug and therefore very very difficult to stop taking as can be seen by the postings above. When were you put on this drug? I have heard that it is used for IBS but in my case I was prescribed it for post natal depression.

I was just wondering how long you were on it for and also if you have stopped it now did you too have problems stopping it?

Best wishes

Jenny

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Just out of interest, how long has it been taking for people to recover from the withdrawal symptoms? My mother has been taking these things for 23 years! initially as many as 4 a day. She weaned herself down to 2 a day but, like the rest of you, has now had them suddenly stopped about 2 months ago. She's now been prescribed escitalopram and is now in a terrible state suffering from just about every symptom imaginable. Her main complaint is constant severe abdominal pain and severe anxiety & panic attacks. like jenny, the GP's have been useless. They won't even admit that the symptoms are a result of motival withdrawal, probably to cover their backsides from possible negligence claims - they know that these tablets are for short term use only.

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Hi Neil,

I am replying to your post on here regarding your Mother and Motival tablets. I have done a lot of research on Motival withdrawl and I have also been to see a Consultant Psychiatrist about it. Motival is NOT a drug that should be stopped abruptly as the withdrawl effects from doing so are horrendous. Swopping on to another anti-depressant as your Mother has been advised to do is a very bad plan of action. Motival is made up of two drugs and these two drugs are still available seperately as "Allegron" (the Nortyptyline antidepressant part) the dose is 10mg and "Moditen" (the fluphenazine part). Moditen tablets only come in 1mg tablets and the dose in one Motival tablets is one half of one milligram so the Moditen tablets have to be cut in half. I recently swopped on to these two seperate components of Motival and I have to say felt very unwell for a couple of weeks until my system got used to the two and I stablised out. I know that Motival is not a drug that is recommended for long term use but that being said doing a cold turkey and stopping it over night is not only un-copeable with but can be quite dangerous too. Your Mother's doctor should have taken that into account I feel.

Motival should be withdrawn from very very slowly especially after the amount of time and the higher dose that your Mother has been on. I am down now by over a third of the dose and I reckon it is going to take me about a year and a half to come completely off it. Sadly my GP has been totally unsympathetic, uncaring and is basiclaly downright ignorant about the withdrawl effects (as sadly a lot of GP's are)

If I may make a suggestion what I did was ask for a referral to a Consultant. He was absolutely fantastic and caring and sympathetic. All I wanted (which is what I asked my GP) was to be able to withdraw from these tablets in my own time and at my own pace but my GP said I was doing it far too slowly and would only prescribe me 14 tablets a month which was far too big a cut down to do in one month and nearly had me ending up in hospital again. The Consultant has told me to take my time and he will always be there as back up for help and advice. He prescribes me the pills himself now and although this means I have to pay for them it works out at £9 a month which I feel is a small price to pay really.

Neil I am putting my email address on here for you should you wish to email me direct. I did in my last post and someone else in the same postion contacted me through it so if you would like to please feel free to email me. I would be happy to help in any way I can. I think there are quite a few of us out there in the same position. Please give your Mother my very best wishes and total sympathy as I know exactly how she is feeling!

I do also have a very very good way of withdrawing off the pills so would be happy to share that with you too should you wish.

Take care and best wishes

Jenny

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Thanks so much for all the comments- they are immensely helpful.

:lol:

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Hi Jenny

I have been on Motival for 12 years, two a day, to help with back pain following a back injury and the medication was very helpful. It was prescribed by my GP but it was also endorsed by the hospital Pain Clinic I attend. However, on a recent visit to the Pain Clinic, the Consultant seemed horrified that I had been taking Motival without regular breaks and said he would write to my GP to say that I would have to start taking breaks every 3 months. Hesuggested to my GP that I was prescribed 10mg Nortriptyline for me to take twice a day while on the Motival break. I cut one tablet down replacing it with Nortriptyline but suffered from a spell of anxiety and slight panicky feelings. I felt totally stressed out on several occasions and found it difficult to cope with everyday hassles and problems for a few weeks but the feelings gradually wore off and about 4 weeks after stopping the first tablet, I now stopped the second one, again replacing it with Nortryptiline. This was 3 weeks ago.

However, this time I have felt extremely unwell. I swing between feeling very anxious, with feelings of total dread, to feeling very depressed,weepy and basically I don't want to be awake. I am taking to my bed at all times to try to sleep so I'm avoiding experiencing these very unpleasant feelings. My sleep pattern is very disturbed and I have lost my appetite. I feel totally unable to plan any social outings as even the though of going out puts me in a state of anxiety,never mind trying to get myself ready to go out. I feel unable to do basic everyday tasks like shopping, cleaning and washing. I work part time but it has been a desperate struggle to attend work so much so that I have now taken annual leave. I did see my GP last week and she agreed that I was going through a withdrawl; prescribed Diazepam for two weeks. Does anyone have any experience of how long these symptoms of witdrawl can take? I would be most grateful for any information.

I had decided with all this that if my back pain didn't flare up too badly that I would stay off the Motival butI see by the website that Motival has actually been withdrawn anyway!

Fiona

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Hi Fiona,

Oh poor you my heart really goes out to you. I have actually written to you direct I just wanted to write on here how many people including us are going through this hell. I have heard from quite a few and I think that is most likely only the tip of the iceberg as I thing without doubt there will be many others who perhaps do not use computers going through the horrendous withdrawal effects too.

For anyone else who is involved in this drug I rang the drug company that made the original Motival and who also make one of the consituents that make it up - Moditen. They say they are hoping the drug will be back in production at the end of July but they are not promising. I do feel very stongly that if a drug is going to be discontinued the drug company should at least give doctors warning so that patients have time to either withdraw safely and slowly off the drug or have the time to wean themselves slowly on to something else. Drug companies particularly Sanofi Aventis who make this drug PLEASE PLEASE TAKE NOTE and think of us poor patients and not just profits, after all its us patients that keep you in profit!!!

Take care everyone.

Best wishes

Jenny

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I posted a comment in April and would like to update everyone on my progress. Hopefully, some of you might be helped by my comments. As stated previously, I had been on Motival for over 20 years for IBS, mainly one per day. At the end of February the pharmacy were unable to acquire Motival from the drug company. I had no tablets left, and quickly went to my GP. He prescribed me 10 mg Nortriptylene which had no effect whatever. I have never felt so ill. I had a number of symptoms - return of IBS with a vengance, particularly in the middle of the night, every night, when I would wake up sweating, nauseous, feeling faint, diarrohea and abdominal pain. It would always be about 1.00 am and I was never able to get back to sleep. I ended up afraid to go to bed! I had some time off work, but carried on mostly mainly because I work locally, and had loads of support and was able to work flexi hours and would often not go in until late morning. But no-one knows what a struggle it was to even get out of bed. Some days I just couldn't do it, and literally laid in bed all day with no drinks, no food, nothing. My partner was completely unsympathetic accusing me of making it up and it all being in my head. Unfortunately he is a person who cannot show sympathy to illness that is not a physical complaint with a name to it! I felt so ill, I had no appetite, and ate almost nothing. To complicate issues, my GP, who I had had for 25 years, retired and my first appointment with my new GP saw me in floods of tears and almost hysterical - not a good first impression! Anyway, he has been brilliant, and spent ages with me. I have probably seen him about eight times since then. Initially he put me on Dothiepin, which did nothing, together with beta blockers. He then prescribed Escitalopram 10 mg daily, beta blockers and anti-spasmodics - but as I am sure you all know, all anti anxiety/anti depressants take at least a few weeks to begin to take effect so more time passed. Very slowly, I had a few calm nights and started to feel better and eat more, and now I am so happy to be able to say that I am pretty much back to normal - I just feel my old self again, but this has only been over the past 2-3 weeks. My GP is monitoring me closely, but apparently Escitalopram is a more modern drug and is relatively safe to take long term. I am sorry to babble on for so long, but I know what all of you are going through and it feels like there is no end to it because it goes on for months, in my case it was a five month nightmare and I hope some of you can take some comfort from my story.

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I too have been on Motival for approximately 12 years. I also take Citalopram 20mg alongside it. I moved to Spain 3 years ago and had to find a new doctor. Before I even found out about Motival being withdrawn I had told the new doctor that I wished to come off both Motival and Citalprom and take something on an as and when needed basis. So he has told me to stop the Motival and has replaced it with Xanax 0.5mg up to 3 times a day if needed, although I am still taking the Citalopram but am now down from 30mg daily to 20mg. Do you think it is safe to stop taking the Motival straightaway if replaced by Xanax. I keep reading that it is not a good idea to stop but have read nothing about replacing motival with something else. Hope you can help. Thanks Lisa

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Hi Lisa,

I hope you don't mind me emailing you but I have been on Motival for 9 years and now find I cannot get anymore. I was prescribed it for jaw pain initially. I have spent the last three weeks in a terrible state that ended up with me in hospital on wednesday. I am having panic attacks, shortness of breath, anxiety, depression, headaches no appetite etc and feel dreadful.

My GP has been useless and has tried several antidepressants to stop the jaw pain but nothing is working. I suggested Nortriptyline and fluphenazine seperately and he gave me the prescription but noone had any stock of Moditem. I am so desperate now as I am supposed to be going to live in Spain with my husband on the 20th August and it's all I can do to leave the house at the moment let alone the country. I am worried that if I do manage to get hold of some Moditem, they will then either discontinue it or I won't be able to get it in spain and I am back to square one.

Have you had any correspondence from anyone who has been successful with another drug to replace Motival so I can point my GP in the right direction. How are you managing with the Xanax.

I would really appreciate your help.

Kind regards

Tracey

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