Finally well and coming off meds - Action on Postpar...

Action on Postpartum Psychosis

3,598 members2,537 posts

Finally well and coming off meds

missot profile image
28 Replies

I'm not gonna lie, I haven't been on this page as I found it too hard. This time last year I was in the local psychiatric hospital as I was still battling the psychosis from having my daughter 18months prior. I've had a struggle to get back to work after HR wanting to dismiss me. I've been back at work full time since end of June last year. I'm now in a position to come off my meds. I'm on venlafaxine 150mg morning and night, lithium carbonate 1000mg and been coming off olanzapine since end of Jan. I had appt with psychiatrist at end of Jan and I thought it was with consultant but it was a new Dr and frankly it was awful. She asked me a million questions and accused me of being guarded and said I'd need to be on lithium my entire life. I was like a rabbit caught in the head lights. I made the decision to come off the olanzapine quicker than she said. I knew I was well and plus I didn't trust her judgement. I'm now off the olanzapine and managing the side effects. I know I'm in for a lecture from the psychiatrist but I'm gonna be demanding an second opinion re the lithium as I do not have bipolar I just have a real rubbish time after having babies. I feel the strongest I have done since I had my daughter and I've still got a fight on my hands to get fully well and med free. I hope that someone that's solace from this that u will get well it just takes time and it's not easier either x

Written by
missot profile image
missot
To view profiles and participate in discussions please or .
Read more about...
28 Replies
angviolet profile image
angviolet

I totally get where you are coming from. Good on you for taking yourself off the Olanzapine. I did the same thing. Getting a second opinion is a really good idea. I'm not saying medication shouldn't be taken. It's definitely better than being psychotic or a danger to you and others but geez those mess have some full on side effects as well. It's a bumpy Road so I think sometimes you get well and strong and then you go back and then you get better. But trust your body and your mind. You know when you're ready. Nice to read your post. It's better to have had a colourful life than a dull one. Illness makes you really appreciate when your healthy again.

Lilybeth profile image
LilybethVolunteer in reply to angviolet

Hello missot

Lovely to hear that you are feeling much stronger after a real struggle with illness, work and professionals. I'm glad you are monitoring the side effects of coming off your medication sooner than your psychiatrist recommended. I didn't take Olanzapine but reduced my medication myself and was very unwell as a result. As a guide there's the choice and medication site, the link being choiceandmedication.org/ncm... with some info.

I'm not sure if Prof Jones of APP would be helpful as his second opinion service has been invaluable to some mums here. A referral from your doctor or psychiatrist in charge of your care will suffice, the link being app-network.org/what-is-pp/....

Take good care of yourself and remember to take your breaks at work.

Dear Missot,

you sound like a very strong lady, indeed.

I was too poorly to write, communicate or listen when suffering with PPP ...Even throughout recovery I was struggling with many issues.

I could not have weened off myself. I have been on very traditional and strong medication. I was lucky to have a great Psychiatrist who was working closely together with my Partner in order to reduce my medication gradually.

I very much like the messages from angviolet and Lilybeth. Please, do take good care when using your initiative and intuition. I definitively would go for a 2nd opinion and also recommend Lilybeth link to Professor Ian Jones.

Wishing you all the best,

Sabine :-)

missot profile image
missot

Thank you so much for the support. I have decided that at the next appoint with the psychiatrist (2weeks away) I'm going to tell her my concerns and also point out to her that there is no need for me to be on lithium for life. If she is insistent I will ask for an appoint to see the consultant who does know my entire case. X

suzannah0 profile image
suzannah0

All the best. Yes some professionals hurt a lot with what they say. I dont think anyone can predict what youd be like in two years vs a lifetime away. Diagnoses change anyway all the time. You can choose not to be stuck with a diagnoses like ppp or bipolar for life...many people recover totally with good community support-ive seen it with housemates, family.

Sorry to hear work has been so hard. Congrats for persevering.

Second opinions are great. I was told i had a very severe condition in hospital...the next day at home, professionals said, no way.

I was told by a nurse id get psychosis 100% next baby (research says 50% and even less if on medicine) was given all the wrong advice for breastfeeding. Venting to one friend helped a lot at the time, and ive been validated by a different hospital i was right.

I agree, be very careful coming of meds yourself coz sometimes you have to stay on longer if you do this. I ended back in hospital. I only come off with husband saying yes its ok.

You know your situation best, but i think the best way to go about this is chat with a psychologist for about ten sessions to get some skills. She will get to know you well and inform the doctors that you do have strategies to cope. I found a good psychologist to be invaluable. Then the drs are more likely to review medication.

Vicky810 profile image
Vicky810

That's so wonderful to hear!!!! Yayyy that gives us all hope

Ellie_at_APP profile image
Ellie_at_APPPartner

Hi missot it was wonderful to hear from you again and to hear you're doing so well. Sorry to hear you had a tough time with work though. I realise and appreciate now how understanding my work was.

I would have given you the links lilybeth did as they were the first things I thought of that may help you.

I hope that your psychiatrist appointment is helpful and you feel listened to.

Ellie

Hannah_at_APP profile image
Hannah_at_APPAdministrator

Hi missot, good to hear from you. Sorry to hear things have been tough and the meds are still something for further discussion with your psychiatrist. To share my experience, I took lithium after I had pp in 2009 for 3 years in total then have been off meds and well ever since. Of course everyone is different but I hope this helps to hear.

Prof Ian Jones in Cardiff was a great resource for me when I had my second child too, I'd definitely say that his expert consultation was helpful to other professionals as there was no perinatal service local to me then.

Take care, I hope that things continue to get easier for you, we've all been through it and are here to listen. All the best, xx

missot profile image
missot

Thanks so much for the comments. This week has been horrendous, I've been so stressed with work and been awake from like 3am most mornings worrying about about work things. I have felt ever stressed and have had headaches. I'm finding it difficult being able to manage all these thoughts after over a year on olanzapine in which these are all surpressed. I feel strong but not sure how to deal with all the thoughts. I'm considering contacting my psychologist against as the negative thoughts have come back and I feel over whelmed by them. I do know tho that I will not go back on olanzapine. I actually want to be off all my meds x

Ellie_at_APP profile image
Ellie_at_APPPartner

Hi Missot

I'm sorry to hear that you have been feeling stressed about work, and waking at 3am in the morning. I always found sleep was really important in feeling well, I can imagine it is having quite an impact.

It's really important that you discuss all this with your psychiatrist, so it's good you have an appointment soon. I have to say, I would never recommend coming off medication without getting, and following, the advice from the psychiatrist (though getting a second opinion is sometimes important too, if you don't agree with your treatment). I've seen on here so many women reporting suffering a relapse when they come off medication themselves, though of course some don't suffer a relapse and manage successfully. Would you consider taking Olanzapine again (at the dose they were suggesting?), just until you see the psychiatrist again in a couple of weeks where you can discuss it properly with them? - Just to get your sleep back, and it may help with your stress at work (if you think your waking in the night, and stress levels are connected to stopping taking Olanzapine?). I understand if you don't want to, it wouldn't mean that you're not able to come off it, but maybe it needs to be more gradual?

Contacting your psychologist sounds like a really good idea, hopefully they would be able to help with managing the stress and thoughts etc. I found psychological input invaluable.

Take care Missot, and I hope you find your stress reducing and you're able to get some full nights sleep.

Lilybeth profile image
LilybethVolunteer

Hellos Missot

Worrying about work can be so stressful and trying to cope under the effects of medication must be so difficult for you. I hope the Psychiatrist will be able to advise you. Can you get an appointment with your GP in the interim just to monitor your stress levels and unload your thoughts?

I had crippling anxiety due to work related stress some years ago and had to rethink the impact on my mental health, although my PP was many years ago. It can't be easy for you working full-time although you are feeling much stronger. Make sure to have regular breaks at work ..... try to leave the building, switch off your phone and have time to yourself.

Take very good care. It's not long until the Easter break when I hope you can find time to relax a little. We are all here for you ......

missot profile image
missot

Update, I'm still battling with the withdrawals mainly headaches and nausea. Thankfully the insomnia has eased up and I'm getting a decent sleep. My job is still stressful but I need to manage it, mostly I'm just getting headaches and slight paranoia. It's this Thurs that I've got the psychiatrist. I'm dreading it to be honest, I can see me asking for another Dr. X

Hannah_at_APP profile image
Hannah_at_APPAdministrator

Hi missot,

Thanks for your update. Good to hear that your sleep is improving, it always makes a difference doesn't it? I hope work gets less stressful for you soon too, and that your appointment this week goes well. I remember times when I dreaded seeing my psychiatrist, do you think it will be possible to ask for another Dr? I hope that the next few days are as stress-free as possible for you in the run up to it anyway. Take care, xx

missot profile image
missot

I have a week left at work before the Easter hols (I'm a teacher) and then a couple more weeks is exam leave and things should hopefully be less stressful. It's not the consultant I see, it's his new junior Dr so I can ask to see him. I basically don't trust her with my care or what is best for me. She was very heavy handed at last appoint and said I'd need to be on lithium for life even tho I'm not bipolar. My recovery has been full of difficulties and struggles and this is another one x

Ellie_at_APP profile image
Ellie_at_APPPartner in reply to missot

Hi Missot

Yes, do think of the break you're going to get when Easter hols come...I can't imagine being a teacher while I was recovering from PP...that must be really hard to manage...

The side effects you're experiencing sound horrible, but really good to hear you're managing to get some good nights sleep.

If you aren't happy with the advice the junior doctor gives you, I think you are within your rights to ask to see the consultant. Is your psychiatrist a perinatal psychiatrist (so supporting women who have had mental health issues postpartum)? If not I think you should ask if you could be referred to a perinatal psychiatrist, if there is one in your area (they would be part of a perinatal mental health team, not every area has one) and if not to be referred to the second opinion service, which we mentioned above. I'm sure Dr Ian Jones would happily see you and advise you and your care team as to if you should stay on lithium for life or not...He is one of the leading perinatal mental health clinicians in the country, and is really understanding and empathic.

Also, are you able to take anyone with you to the appointment?

Take care, do let us know how you get on.

missot profile image
missot in reply to Ellie_at_APP

I was under the care of the perinatal mental health team until my daughter was 1 then I was transferred into the community. The consultant is good and knows my case as he was briefed by the perinatal team and he was on my case last year when I admitted to the psych ward after a relapse. I'm really not happy with this new Dr as she accused me of being guarded and then said I'd be lithium for life. I've since researched this and it doesn't have to be the case. No offence to he but she probably spent 10mins reading my notes. It's now 2 1/2 years since my daughter was born and I spent a total of 5months in the mbu over 3 stays and then a 3week stay in adult psych ward last year. Basically she does t know me but is acting like she is. I need support coming off the meds not critism and difficulties x

Lilybeth profile image
LilybethVolunteer

Hello missot

Being a teacher must be a very stressful career and so it's good that Easter is not too far away when you can relax a little. I was never comfortable sitting in front of health professionals either, I felt I was being judged instead of assessed! I think if you don't trust the new junior Dr with your care you would be within your rights to ask to see your consultant. After coming such a long way you need to feel supported and not at odds with your care team.

Take care. Stay strong and be positive on Thursday x

Lilybeth profile image
LilybethVolunteer

Hello missot

I hope all goes well tomorrow with your appointment and you will be able to see the Consultant you prefer.

Not easy but try not to worry ...... take care.

missot profile image
missot in reply to Lilybeth

Thank you lilyBeth, I'm apprehensive about it as I don't know what to expect. I feel like this another hurdle I need to get over to be fully well x

Lilybeth profile image
LilybethVolunteer

I'm sure you're well prepared but it might be an idea to write down points that you want to make. I was always tongue tied sitting in interviews with professionals. All the best x

missot profile image
missot in reply to Lilybeth

So everything has sorted itself out! I had another new Dr, but he took the time to explain that my consultant before had retired and that staffing had been crazy. He however is the new consultant and will have my case. He also seemed pleased I was off the olanzapine and didn't seem bothered that I'd come off it myself. He also said that I could come off the lithium too. I told him that the previous Dr said I need to be on if for life. It was obvious he had read my notes too even tho it's on volume 4!! He said I'm probably in that group of women who get psychiatric disorders when I have children. I totally agree with that as I've had no other episodes apart from these. All in all I'm happier and glad I didn't have to have a fight x

Lilybeth profile image
LilybethVolunteer

Hello missot

So pleased everything went well for you today and the new Dr was understanding. What a great group of brave women to be part of !!

It's good to hear you're happier now and I hope you can relax a little. Take care x

Ellie_at_APP profile image
Ellie_at_APPPartner

Hi Missot, that's so great to hear that you've had a positive meeting with the new consultant, that so great.

I hope that you'll just keep getting better and better, and that work isn't too stressful...

Take care,

Ellie

Lilybeth profile image
LilybethVolunteer

Hello missot

I hope you are managing on reduced medication and that you are enjoying the half term break.

Take care.

missot profile image
missot in reply to Lilybeth

Hi LilyBeth, I'm enjoying the holidays and spending time with my kids. That's me been completely off olanzapine 5weeks and lost a stone 😁😁😁 down to 800mg of lithium and due to go down to 600mg on Thurs. Thankfully there hasn't been side effects from the reduced lithium which is great. I've been very reflective of the past almost 3years and everything I've been throu and even the difference in the past year. I really feel so much stronger. X

Lilybeth profile image
LilybethVolunteer

Great to hear you're doing so well missot :) and that you're enjoying the half term break. It's good that you haven't had any side effects from reducing the lithium and you are pleased with the weight loss. I think it's ok to look back sometimes, recognising how strong you were to come through so much and how proud you should be.

Time for a big sigh of relief ....... take care. xx

Hannah_at_APP profile image
Hannah_at_APPAdministrator

Hi Missot, great to hear your updates and that the new consultant has been supportive. The meds reductions sound to be going well too, it's a definite milestone isn't it? I remember feeling proud of myself at each reduction too and reflecting back was something I did too, in fact I still do at times. It might not have been the journey we imagined into motherhood but the extra challenges we have overcome are certainly something to be proud of. I hope you have a lovely Easter breast, take care, xx

Bubbles1017 profile image
Bubbles1017

Ypur post gives me hope now to no i can get off olanzpine im on 20mg an on mood stables epplin i want no mre olazpine as im ready to get feeling normal emotionally an not being always in vuboard hungry sitting like someone who minds is like paper mushed into a hole an i dunt no who iam anymore doctors say if i come off olanzpine eva ill go bk into a physcrist hospital again as now i read your post u shown me hope i can find an feel wat ive had those tablets take away an stopped periods an all my friends gone ive changed into being alone i just want to hopefully be free an u given me that hope thankyou for writing your post shows u can get off the big tablets wen all ya told is negative an side effects thats why noone speaks in their all wanting kick off for meds cus they like to giv meds no u all asleep then no work for em to do but probly sit office laughing at us patients ino how i saw the hospitals i was in docs an nurses peeps wear a blue plasic cover makes them think ore putting blue gloves that all sudden they can be in as a person whos allowed to inject ya cus ov a glove on wen they by my experience just come in on agency an do wat asked harmed me wear not even pinched my skin just went staight stab anywere an it woundt pierce with no care an get away with it to many lost in system to then if u start talking then i learnt i got stick an given agro to then just think ill stay true to me do my meds make no friends an ill get somewete hopefully which i have im now free fully medicated but im out an well ino peeps were they never get visys been in years forgotton mental health no one u see say all they giving to support but go on like i use to say to staff try a week in my room in wat i go thru u wudnt handle a night u wud hang put to dry before anyone relised u had probly still check ya not realising u slit ya wrist ore u died an its a shame so i wrote a book an im getting it all organised an hopefully find somewere on shelfs to show wat my accident to living it tgen recovering o now i no ill help somone even if it only pne who picks it up an is surviour at least ino they got free as i saw good people go in for nothing end up their lost an worser off not noing how ore wen they arrived cus too many chuck high dangious physciots bensipines an sleepers thats not soliving it just covibg a leaving their job easy omg i carnt wait to find an put togther my book an wen i do ill come on here to ahow ive done it made my goal to get published wat i did inside ov a can i felt locked imto with key lost an no voice anyways enuff im rabblung but im sick ov seeing nothing done hopefully someone is still reading an agreess with me also wud like rssponses if if not with wst i say im up for all comments neg ore positve welcome

You may also like...

No emotions even after coming off all meds for 5 months…

weirdly a bit teary 🥲 from time to time ).Even after taking myself off everything this May ,5 /6...

Fear of coming off antipsychotics

if any of you had fear coming off antipsychotics such as Olanzapine. I came off before through...

Coming Off Lithium -any advice?

condition, but coming off lithium feels like it might be the moment of truth. How well coming off...

7 months PP breastfeeding and struggling with insomnia after tapering off the meds at 4 months

reduce the meds and eventually come off completely. I am very grateful to be off the meds now and to

Birth plan and meds...

wasn't planned - I've stayed on my lithium and I've been talking to my psych about meds change as I...