Reducing Venlafaxine after taking for 5 years. Anyone suffered withdrawal hell?

[Alli99]

Background of my PP and medication:

I had Postpartum Psychosis in February 2010 and after being prescribed Olanzapine the symptoms of psychosis soon subsided.

However, in July 2010 I fell into an incredibly deep depression and have been on a number of anti-depressants ever since.

The Olanzapine was replaced with Aripiprazole, then I was put on Citalopram. A few months later the Citalopram was replaced with Venlafaxine.

The Venlafaxine dose has been altered a bit over the years, up to 225mg at one point, down to 150mg, then back up to 225mg, and down to 150mg.

Roughly in the summer of last year, 2015, I requested to start coming off the medication, then I was taking 10mg Aripiprazole and 150mg of Venlafaxine.

This has all been handled by Outpatients at my local mental health unit. Originally I was cared for by the Early Intervention Team but after 3 years we had to part company.

Reduction of medication:

At the end of December last year I took my final 5mg tablet of Aripirazole. I had been on 5mg, reduced from 10mg for a number of weeks and felt fine.

I felt incredibly nauseas for weeks afterwards but it did eventually go.

Then, in early March 2016 my Venlafaxine dose was halved to 75mg. And this is where my problems appear to have begun....

Physical symptoms:

Within days of reducing Venlafaxine I am experiencing:

Dry/irritated eyes, dizziness, headaches & nausea, flu-like symptoms - a cold I cannot shift, sinus problems, dry mouth, indigestion and bowel problems, loss of appetite.

At the end of April I have had several different types of test for diabetes - all negative.

My GP refers me to Gastroentology as I’m losing weight quite rapidly too. (As of July, it's 3 stone in approximately 5 months.)

The dry mouth and nausea continue.

At the end of June I’m in A&E with crushing chest pressure which came on ‘out of the blue’. ECGs and blood tests all negative, chest X-Ray also clear.

I had a CT Colonography carried out on Saturday, 9th July 2016 at 09:30am. I haven’t had my results back yet.

The same night I was back in A&E, I had spent all day in bed after the procedure but felt incredibly weak, my head was pounding and my heartbeat was pounding in my ears too. My hands tingled.

(I had eaten normally and drunk lots of water.) A&E took blood - not dehydration. Another 2 ECGs done - both clear.

Yesterday I managed to get an urgent appointment with my psychiatrist at Outpatients to discuss the Venlafaxine reduction. He suggested a referral to Neurology and says my symptoms are NOT caused by the Venlafaxine reduction as they would have subsided in a few weeks after the initial reduction to 75mg.

My hands have lost their coordination, I can’t drive for the time being and it’s taking me forever to type this! My head is woozy too, and I generally feel ill.

As a positive - my mood is absolutely fine, I’m enjoying not being the medicated ‘zombie’ I’ve been for years and have got my personality and sense of humour back.

This seems to be the final hurdle in my recovery from PP and the subsequent depression.

Can anyone shed any light on this please? Do you know anything about Venlafaxine discontinuation symptoms and how long they can possibly go on for?

I feel like I’m draining the NHS at the moment, constantly having tests and being referred here, there and everywhere. My husband has had to take time off work to look after our son (and me) and it’s getting rather frustrating.

Thanks for reading such a long post.

[Lilybeth Volunteer]

Hello Alli99

Welcome to the forum. I'm sorry to hear you are feeling generally unwell but there will be mums here to offer their advice and support. It's good to hear that you were able to see your Psychiatrist today and in some way be reassured that your symptoms are not the result of your medication.

I had PP twice in the mid-70's and early 80's and from my notes I didn't take Venlafaxine but it might be a new medication as so much has changed. I also suffered an enduring depression, lasting almost a year, following my PP episodes. I was mainly treated with ECT which for me was more effective than medication.

I don't know whether you have seen the website, choiceandmedication.org/ncm... -Venlafaxine which might be helpful. It's good that you can see the positives and have regained your personality and sense of humour.

I hope you will soon fully recover. In the meantime we are all here to help. Take good care of yourself and try not to worry ........

[Alli99 in reply to Lilybeth]

Hi, thank you for your reply.

Venlafaxine did work for me, I can't deny it got me out of a very dark place.

However I am completely astonished that my psychiatrist was so dismissive of my symptoms since reducing the dose. I have trawled the Internet for information, I'm aware a lot of it should be read with a pinch of salt but it's full of horrendous tales of withdrawal and protracted withdrawal.

If someone has a success story please let me know!

I do not see why I should start taking another anti-depressant to mask the symptoms of Venlafaxine withdrawal. I've read about using Prozac as a bridge.

Thanks.

[ontheup]

Goodness, I hope you begin to feel better soon. I am on Aripiprazole and venlafaxine too, I'm hoping to come off the Aripiprazole (and procyclidine I'm taking to combat the side effects of Aripiprazole!) soon so I'll be interested in any replies you receive. I hope very much that you will feel better soon.

[Alli99 in reply to ontheup]

Hi 'ontheup', thanks for replying.

I was very lucky with the Aripiprazole - both going on it and coming off were fairly easy. It just goes to show how everyone reacts differently to medications.

I know I am not medically qualified to say anything about Venlafaxine but all the information I have found written by those who have actually taken it is very negative surrounding the topic of withdrawal.

Hope I'm not scaring you and that you also get better soon.

[Hannah_at_APP Administrator]

Hi Alli99 and welcome to the forum,

I'm sorry to hear you are having a hard time and that the symptoms you describe are so difficult. It seems so cruel doesn't it that we recover from PP (which is horrendous in itself) and then have further challenges to overcome. I'm afraid I don't have experience of Venlafaxine but the Choice & Medication website that Lilybeth linked to has some good information. I'm sure you will probably have already seen it but the APP Guides, including about Recovery, also have some helpful tips. app-network.org/what-is-pp/...

I would encourage you to keep asking professionals for further support, whilst I can appreciate it's hard to keep going for tests and feel that you are using up their time, they really are best placed to get to the bottom of what is going on. You mention that you are no longer with the Early Intervention Team, but I wonder whether you could get more mental health input if you are feeling like you need it? Or is it just the potential medication withdrawal? Perhaps something to discuss with your GP.

It's really positive to hear that you are feeling better in that your sense of humour and personality is coming back. Hang in there, and I hope you are feeling better soon. Take care, xx

[Alli99]

Hi Hannah,

Yes I've read through the website that Lilybeth suggested. It says the subject of withdrawal is a sticky one.

I do not need any mental health input, my mental health is spot-on. I need somebody to take on board and listen to what I am saying.

If someone could please supply a success story of completely coming off Venlafaxine after long term use without horrendous withdrawal symptoms and without taking further anti-depressant medication to stop the withdrawal symptoms I'd be incredibly interested to read it.

Thanks.

[BlueberryPie]

Hi there,

I'm sorry to hear you're having such a hard time. I was on venlafaxine for about 2 years - it was prescribed while I was in the Mum and Baby Unit, and then I stayed on it after I was discharged. I had to stop taking it suddenly (it's a long story!) and the effects were horrendous. My heart was racing, I felt like it was going to pound out of my chest I felt sick, shaky, anxious and at times terrified that I was going to die. I felt short of breath and couldn't sleep, and with my heart beating so fast I felt like I was going to suffocate, especially at night. My psychiatrist said he didn't think it was venlafaxine withdrawal that was causing this, but eventually after a few awful days I managed to persuade him to let me go back on it and reduce it slowly. I was on a high dose (325mg) and I reduced it gradually over a couple of weeks. As soon as I started taking it again I felt much better and I successfully came of it after that.

I would add that I was in hospital during this time (in a general psych ward) so I was able to have some sedating medication to help me through it.

I hope I don't come across as smug that I was able to come off venlafaxine quite successfully in the end, when you are struggling so much. But I just wanted to let you know that for me, the side effects were very real, but they did go away when I reduced it slowly.

I hope things get better for you soon x

[Alli99 in reply to BlueberryPie]

Hi, thank you so much for replying and no you do not sound smug at all. Your reply is extremely helpful and encouraging.

If you don't mind me asking can you remember how your dosage was dropped for a gradual reduction? For me, since reducing by 50% I've had no end of problems.

From what I've read the tapering needs to be extremely slow and at no more than 10% at a time. This can involve cutting tablets into fractions or pulling capsules to pieces.

I'm on the prolonged release version of Venlafaxine, I take it once a day in the morning with breakfast. Do you know what type you were on?

Thanks again for replying.

[BlueberryPie in reply to Alli99]

Hi again,

I think I was on prolonged release and then went on to the normal tablets as the dose got smaller. It was all a bit of a blur, I had to come off Venlafaxine quickly as it was pushing my mood higher and adding to psychotic symptoms that I was having. I'm maybe not the best example as I started taking other medication at the same time as stopping venlafaxine.

Sorry I can't be of more help x

[Lilybeth Volunteer]

Hello Alli99

I know you mentioned you don't need any mental health input. I've looked at a few posts about medication and some mums have received assurance from Prof Jones of APP's Second Opinion Service app-network.org/what-is-pp/....

I know it's another opinion to add into the mix but Prof Jones is able to offer second opinion or consultation to patients with the aim of assisting and advising clinicians regarding management. I can imagine you are frustrated seeing so many professionals (I was the same years ago) but Prof Jones might be very helpful as he has a wealth of specialist knowledge. Your Psychiatrist or GP will be able to refer you.

I think it's worth considering ....... take care.

[Alli99 in reply to Lilybeth]

Hi,

I emailed Dr Heron and Prof Jones of APP on 14th July. Dr Heron replied and suggested I try this forum for information and support and also the Second Opinion Service. I haven't heard from Prof Jones yet but is email 'out of office' said he wasn't back until yesterday.

I am willing to ask my GP for a referral to the Second Opinion Service but a trip to Cardiff is not going to be easy - I'm in Essex, and like I said, I'm not driving at the moment.

Do you know if Prof Jones will do anything via telephone?

My GP did not rule out my symptoms being linked to the reduction in Venlafaxine, but he said I'd have to be tested for other things first. My psychiatrist, on the other hand, could not have been more different.

Believe me, I am trying to follow the correct channels for help but my 'urgent' Neurology referral has come through for October and I'm STILL waiting on the results of a CT Scan via Gastroentology that was done on 9th July.

It is extremely frustrating trying to get answers.

[Hannah_at_APP Administrator in reply to Alli99]

Hi Alli99, Thanks for your updates and I hope that the replies so far have been helpful to you. Just to add that a Skype with Prof Jones may be possible and something to look into. I appreciate that this is a really frustrating time, hang in there, we are all thinking of you and wishing you well. Take care, xx

[Alli99 in reply to Hannah_at_APP]

Thanks Hannah, I'll give Prof Jones a few more days to see my email then perhaps I'll try to contact him again. I don't have Skype though - and no camera on my PC.

[Ellie_at_APP Partner in reply to Alli99]

Hi alli99

I'm really sorry you're suffering like this with awful physical symptoms. I'm sorry I don't have any personal experience of that drug however I did want to let you know that you can't self refer to Ian Jones you need to be referred by your mental health team or GP. If you print off the page about the service and ask for them to refer you.

I really hope things get better soon. I was on olanzapine and I have to say a very slow withdrawl helped me come off it. And I agree people respond to different drugs so individually

Ellie

[Alli99 in reply to Ellie_at_APP]

Hi Ellie,

Yes, I'm aware I can't self refer and was going to ask my GP. However, before I get another GP's appointment (there have been rather a lot recently!) to request this I was wondering if Prof Jones could provide some kind of feedback via telephone or email. If he is of the same opinion as my psychiatrist then there's no point getting a referral in the 1st place.

[Ellie_at_APP Partner in reply to Alli99]

Hi thanks for your message that is a good point. If you don't hear anything I would ask your GP to refer anyway. I'd be surprised if Dr Ian Jones didn't have something to offer a and he really does have such a lot of experience. I hope you feel better soon.

[Hannah_at_APP Administrator]

Hi Alli99,

I know that you have already had the 2nd Opinion Service link from another reply, but here it is again: app-network.org/what-is-pp/...

I know when I accessed it, I had the page to show my GP and they also offered me to use a connection at the surgery if you don't have Skype. There is an email and phone contact details on this link too if you or someone supporting you (GP or other) could follow this up.

I hope that you are feeling better, take care, xx

[Alli99]

Hi Hannah,

My psychiatrist is attempting to get me referred, he has had to write to his Medical Director as apparently under Trust policy they have to exhaust all local services first before bringing in an outside service.

The worrying thing for me is I have only just seen part of my medical records with this psychiatrist (I have been under him for 3 years) and the diagnosis he has is "Postnatal depression (severe) with mood congruent psychotic symptoms ICD10 code F32.3".

Before him I was under the Early Intervention Team for 3 years, and before them, I spent a number of days in a Mother & Baby Unit. My Mother & Baby Unit notes state Puerperal Psychosis. Code F53.1 so I'm really not sure where the mis-communication has happened.

I am seeing my psychiatrist on 24th August so I hope he has progressed my referral by then.

Health wise - I'm still not great, but my CT Colonography scans are clear of anything. However my thyroid is borderline underactive and is being tested again in September. I continue to feel ill.

Thanks for your support.

[Lilybeth Volunteer]

Hello Alli99

I'm sorry you continue to feel ill. Hopefully when you see your psychiatrist on 24th he will have progressed your referral. I'm sure you will be relieved when you meet Prof Jones who will be able to give a definitive answer regarding diagnosis. I had the good fortune years ago to meet Prof Jones and some of his team. He was very understanding and able to confirm my diagnoses of PP following sight of my medical records.

Take care.