Weaning off medicine

[Shezow]

Hello guys I've been following everyone's posts for awhile now, everyone here is so supportive and caring, my baby is 7 months now and I've been feeling good for around 2 months now, I fell ill on the 3rd day of giving birth, I was diagnosed with severe depression and anxiety with symptoms of phycosis, I had a team of doctors who would do visits every day, my family were really supportive however they were totally against the idea of a mother and baby unit, partially because my doctor had said the environment there isn't good, moving forward I will be looking at getting off my medicine in a few months, I was initially on zopiclone, quetiapine, and mirtazapine, I am now only on mirtazapine but I am so scared of withdrawal symptoms, has anyone got any experience coming off mirtazapine? Tia

[Lilybeth Volunteer]

Hello Sherrymoon

Welcome to the forum and thank you for sharing your experience. I'm glad to hear that seven months on you have been feeling well for a few months now. The mixture of anxiety, depression and psychosis must have been very hard for you and I'm surprised your family and doctor were against MBU care. I had Postpartum Psychosis twice many years ago and after the second episode there followed an enduring depression so I understand how draining that can be.

At this time I also received home care from the psychiatrist and team as there was no specialist MBU care then. I wasn't on the medications you mention as my episodes were so long ago and medication has changed to be more effective. There is a website, choiceandmedication.org/ncm... which might give you an insight into side effects and symptoms. There will also be mums here to share their experiences. As you have already been reading some of the posts here, you have probably seen the APP Guides.

You are doing very well to be so aware after such a traumatic time. I hope your recovery continues to go well ...... we are all here to talk if you need us.

Take good care of yourself

[Shezow in reply to Lilybeth]

Thank you lilybeth for your reply, I will take a look at the link, wow twice! You are so brave! Times have changed now I guess, I hope to hear from other mums who have been on the same medication, thank you so much for your kind words of support, I really appreciate it x

[Lilybeth Volunteer in reply to Shezow]

You're very welcome Sherrymoon .... we are all very brave! I'm sure other mums will be here for you to share their experiences of medication.

Take good care of yourself.

[Orea]

I don't have experience of coming off this drug. Is it an anti-depressant? I have experience of coming off these in the past though. I think the key is to get your doctors advice on how best to do it. Mine suggested not coming off in the winter or at times of high stress, and obviously to lower the dose gradually. I had no set backs to this approach in the past, but I think it must be highly variable. xx

[Shezow in reply to Orea]

Thank you Orea, yes it is an anti depressant, it isn't an ssri, it's one of the older ones, I've read some horror stories on the net of people coming off their anti Ds, I know I shouldn't be googling but that's what we with anxiety do, Google everything! lol but that is very good advice from your doctor, the winter months can get the best of us down and I will make sure I don't have any new stress on, thanks x

[Orea]

Yes, and remember if you phase off gradually; if you have any set backs you can always re-up the dose. I would consequently not worry too much, so long as you feel you have good GP/psychiatrist support on this Good luck!

[Hidden]

Dear Sherymoon,

unfortunately there was no MBU in my area. I was sectioned into a psychiatric mixed gender unit. My partner and I could have done with some professional support, who have had some experience in dealing with females suffering from Post Partum Psychosis.

Treatment in the hospital was disastrous on many levels and very traumatic as I experienced negligence and physical abuse. In addition I was put into isolation on numerous occasion and it took several weeks until the most suitable medication was found in order to keep PPP under control. I suffered extreme sleep deprivation and have had no gynaecological support. This only happened in 2010.

Luckily the after care was much better and I was gradually weaned off medication within one year. As long as you are supported by professionals, who know your case and subject matter you should be fine. I have had a crisis team, care coordinator, support worker, therapy, doctors etc. including my partner and his family as a support network, all communicating and cooperating with each other (care plan).

Wishing you well,

Sabine

[Shezow in reply to Hidden]

Dear Sabine, how awful! I'm so sorry you went through all of that miss care! Unbelievable, im glad the after care was good, I'm here in the UK, after they found out what meds worked for me (mirtazapine) I was discharged back to my gp doctor, so he is the only professional who's care I'm under, he doesn't specialise in mental health, so I'm abit worried, as when I've told him about some (mental health) issues he usually shrugs it off! Otherwise he is very good, for example I started experiencing sleep paralysis a lot whilst being ill and during the early months of my recovery, and he had no idea what it was! I didn't bother mentioning it again

[Hidden in reply to Shezow]

Hello again Sherymoon,

Yes, I am in the UK, too.

Take good care and all in stepping stones.

Sabine

[Shezow]

Thank you ladies for your support I'm so glad you've both made a full recovery

[Orea]

Hi Sherymoon, I'm sorry to hear you feel you need more support than you are getting from your GP. I strongly suggest you push for psychiatric referral - so you have the support of a Community Psychiatric Nurse, if not a Psychiatrist. I know the wait is long for the latter (my one had a caseload of about 350 people!) but even if I only saw her every 3 months, I at least knew I was getting specialist advice. The CPN can also help, as they may have had more first hand experience of people with PP.

Also its perhaps an idea to prep all those close to you to watch out for any warning signs, if you do decide to reduce your dose in agreement with your GP.

I am not sure if the secondary advice service could be of help in this instance (available through APP). But it may just be for those looking to put a care plan in place for another pregnancy - perhaps the administrators can input on this?

Hope this helps, and good luck! xx

[Hannah_at_APP Administrator]

Hi Sherymoon, I would agree with Orea, getting the right support is really important, and feeling you are listened to. This was a big thing for me, especially when going through a meds reduction. Can you access Mental Health services or do you need to go through your GP? Getting the right info about reducing and withdrawing from meds is really important, I'm afraid I don't have experience of the drugs you mention.

Here is the link for the 2nd Opinion Service mentioned: app-network.org/what-is-pp/...

It is not just for further pregnancies, although that can be a very useful time to have input, especially if you are struggling to access any MH/ perinatal services where you live. Your GP or other MH worker would need to refer you to Prof Ian Jones and there is no cost for this (to you or the health authority where you live). I found it useful to sit with my GP and show him this link or a printout and explain that it was a specialist service as there wasn't anything available at the time where I live (although services are getting a little better now).

I hope this helps. Please feel free to come back and ask any further questions which would be helpful to you. Take care, xx

[Shezow]

Thank you ladies for your advice, I have been on the waiting list to see our in house counsellor (gp referral), they contacted me saying they will give me a total of 8 sessions, I'm hoping this will be a positive step forward and will aid in helping me get off my meds, as that is when I can truly say I'm healed, it's a shame there's such long waiting lists for MH services, that link will be good for future pregnancies if any! Thank you once again x

[Lilybeth Volunteer]

Hello Sherrymoon

I hope you won't have much longer to wait to see the in-house counsellor.

Thinking of you ...... take care.

[Shezow in reply to Lilybeth]

Thanks Lilybeth,

My first session was last Wednesday but I missed it as my Aunty died in the early hours of the morning they left me a voice message saying they will have to discharge me back to my gp! I did call them later explaining, however haven't heard from them since, I'll give them a call again tomorrow

[Lilybeth Volunteer]

Hello Sherrymoon

I'm sorry to hear of your family bereavement. The counsellor sounds very inconsiderate in the circumstances. I hope you will be able to have a more positive reply when you call them again.

Take care .....

[Hannah_at_APP Administrator]

Hi Sherymoon, sorry to hear of your loss, I hope you got a more helpful reply from your GP when you were in touch again. All the best for 2017 and your continued recovery, please feel free to come back and ask any more questions if we can be of further help and support to you. Take care, xx

[Lilybeth Volunteer]

Hello Sherrymoon

Just wondering if you have been able to rearrange your in-house counselling? I hope you are ok.

Take good care of yourself.

[Shezow in reply to Lilybeth]

Hello lilybeth,

Thank you for asking about me, I have had 3 sessions by now but I'm not finding it helpful :/ my counsellor isn't that great, we just talk, I think it was me expecting too much maybe, I really hoped she would be teaching me techniques but it's more like just listening to me venting out :/ that's all

Hope you're well too

[Lilybeth Volunteer]

Hello Sherrymoon

Good to hear from you. I'm sorry the counselling isn't helpful after waiting so long to be seen. I think you can either wait a little longer to see if your counselling sessions improve or you can go back to your GP and ask him to re-refer you to the care team. Try and book a double appointment so that you can explain your worries and your GP will have more time to listen.

I wonder if CBT (Cognitive Behaviour Therapy) would help? It's more problem solving and might help change the way you think and feel about things. I had CBT, unrelated to PP, but it did make such a difference to how I felt and offered coping strategies for stressful situations in the future. Your GP will also be able to refer you.

Take good care of yourself ...... we are all here to lean on.

[Lilybeth Volunteer]

Hello Sherrymoon

I hope you had a good week. Are you persevering with the counselling or will you go back to your G.P?

Take good care of yourself.

[Shezow in reply to Lilybeth]

Hello

I've had more better days, Thank you for asking. I haven't seen my gp yet, but will update you soon as I do,

Thanks

Hope you're well too x

[Lilybeth Volunteer]

Thanks for taking the time to reply. I'm well, thank you.

I really hope in time the better days will outweigh the not so good.

Take good care x

[Ellie_at_APP Partner]

Hi Sherymoon

I was sorry to read that the counselling hasn't been that helpful. Sometimes it's just a case of whether you 'click' with someone or not.

I still can't believe you have no mental health team supporting you. After having PP I was under the care of the early intervention in psychosis team, and received CBT and regular meetings with my CPN (mental health nurse). It was so important in recovering well. And ideally everyone should get support from a perinatal mental health team for 12 months.

How are you feeling? Are you doing OK? It is great that you are having more better days, and are managing to recover with little professional support by the sound of it.

Have you thought anymore about coming of the medication? The main thing, as many people have said, is to withdraw it very gradually, just decreasing the dose gradually.

Take care

[Shezow in reply to Ellie_at_APP]

Hi Ellie, thank you for your kind words of support, I will be seeing my gp and will bring it up with him, but I don't think there's anymore he can do, as we've only got the one in house counsellor, I have to admit I feel a bit bad for keep pestering them and feel I should be coping better, my counsellor on the third session was keep suggesting that I looked fine and relaxed and kept asking what I want next from my sessions! I will ask her about CBT

I'm so glad I have my husbands support he's been the most help from the beginning

I have started to wean off my meds, I was on 30 mg of mirtazapine, and am now down to 15mg just been over a week, so still early days, the plan is to stay on 15 for 2 months, then take it from there,

Thank you ladies

[Hannah_at_APP Administrator]

Hi Sherymoon, good to hear your updates although the counselling hasn't been what you thought it might be. I don't have any experience of this to share, as I was supported by a CPN when coming out of hospital/ MBU so it was more of a 1:1 thing than scheduled sessions, she would take me out, chat to me about things etc.

It's positive that your meds dose is lowered, I hope that this continues to go well for you. And that you get some more info about the CBT. Great to hear that your husband has been a good support, mine is fab too. What would we do without them (although don't let them know!!) Take care, xx

[Shezow in reply to Hannah_at_APP]

I don't know where I'd be without my husbands support, 🍻 Here's to the good men in our lives!

[Lilybeth Volunteer]

Hello Sherrymoon

How are you? Did you ask the counsellor about CBT which might be helpful? It's still early days for you so do make sure you find time to rest, although I know your husband is a great support.

Take good care of yourself.

[Shezow in reply to Lilybeth]

Hello thank you for asking about me lillybeth, I'm doing well, I did enquir about the cbt, my councillor said it was all included, they assess you then provide you with the help you need in the sessions which includes cbt, I've been doing self help as well, I've been advised to look into mindfulness as well so will give that a go too.

Regarding the meds, I've dropped the mirtazapine from 30 to 15 it's been 4 weeks now and I haven't had any major symptoms, I will be staying at this dose for another 2/3 weeks, fingers crossed all goes well :/

Thank you ladies you have been a great support.

[Lilybeth Volunteer]

Hello Sherrymoon

Thanks for taking the time to reply. So good to hear you are doing well and that you have a good care package, as well as having the motivation to help yourself. I think a few mums here have found mindfulness very helpful.

It must be such a relief to reduce your meds and have no major symptoms. So pleased you are doing well ...... keeping everything crossed for you Take care.

[Shezow in reply to Lilybeth]

Thank you lilybeth for your ongoing support, do you know any sites which are good for teaching mindfulness?

Thank you

[Cicerenella in reply to Shezow]

I have the Smiling Mind app on my phone (iOS), and it's pretty good. Also the website dbtselfhelp.com/

[Shezow in reply to Cicerenella]

I'll download it now, thank you 😊

[Lilybeth Volunteer]

Hello Sherrymoon

I'm not sure about sites for teaching mindfulness but hopefully some mums on the forum might be able to suggest something for you. I have looked on YouTube though and found some really relaxing mindfulness music. I feel quite calm now and relaxed ....... perhaps you could try this while you're waiting?

Take care.

[Shezow in reply to Lilybeth]

Thanks I'll definitely try YouTube

[Lilybeth Volunteer]

Hello Sherrymoon

I hope you found the mindfulness links helpful ....... thinking of you.

Take care.

[Shezow]

Hi guys just a little update...

As you know I was doing great and was ready to come of my meds, after being off totally for 2.5 weeks I had an episode of severe anxiety at night which lasted a few hours, then I woke up feeling awfully depressed, I've decided to restart my meds as I can't get hold of my doctor till next Wednesday 😔

It's the third being back on meds while the anxiety has eased the depression hasn't lifted yet 😔

I just wish I could speak to my doctor for advice 😔

[Hannah_at_APP Administrator in reply to Shezow]

Hi Sherymoon, sorry to hear things are tough for you at the moment. Is there another doctor or health professional you can speak to before next Wednesday? Or perhaps an out of hours who could give you advice?

It's good to hear the anxiety is lessened although the depression has not lifted, this can take time. I'd really encourage you to keep taking the meds and seek a further appointment if you need to before Wednesday, even if not through your usual Dr (out of hours, on call etc). In the meantime, I hope you can get some good rest and try not to worry too much. Recovery from pp can be up and down but you will get there in the end. Take care, we will all be thinking of you. Xx

[Shezow in reply to Hannah_at_APP]

Thank you Hannah I really appreciate it

I'm going to call the mental health number I have, for advice if things don't seem to clear up before Wednesday, however I'm not sure if I can ring them for advice, I think it's a crisis line only

Just feel so let down feel like I've gone backwards it took so long to build the confidence back, and it's all gone 😔

Your words are really comforting, thank you x

[Lilybeth Volunteer]

Hello Sherrymoon

Good to hear from you. I'm sorry you feel your recovery has taken a step back but be reassured ... that's sometimes what happens. My depression lingered for ages and it's tough to lift yourself out of but with support you will eventually. Some days it can be one step forward and two back but try to stay strong and positive.

I'm sure you will be able to ring the number you have. Even though it's a crisis line they should be able to give you helpful advice. Tell them how let down you feel and hopefully they will listen and signpost you to good aftercare. Don't worry too much about your confidence at the moment ....it's taken a knock but you can rebuild it one step at a time.

We are all with you .... take care. xx

[Shezow in reply to Lilybeth]

Thank you lilybeth,

I have been feeling a lot better since yesterday, so I'm just going to wait till Wednesday to see my gp, and see what he has to say about it all.

I've been discharged by everyone else. However I will use the crisis line in case of an emergency ever again

I'm just interested to see what my gp will say as he doesn't believe in withdrawals

Thank you, you guys have been a great support. will keep you guys updated after Wednesday xxx

[Lilybeth Volunteer]

Hello Sherrymoon

I'm glad you're feeling a lot better since yesterday. When I was recovering I decided to take myself off medication and it was the wrong thing to do at the time, so you're not on your own there.

I hope your gp will be supportive on Wednesday. If possible, try to book a double appointment so you have time to explain exactly how you have felt and won't be rushed.

Take care xx

[Shezow in reply to Lilybeth]

Thank you I'm glad to learn I'm not alone, Maybe this is because of me coming off too early,

Maybe I need to stay on the med for the rest of my life, I'm not sure

Are you off your meds now? If yes what method did you use to come off? Xx

[Lilybeth Volunteer]

Hello Sherrymoon

I think we can all relate to wanting to be well and trying to wean ourselves off medication. I realised when I went to a review that it wasn't a wise decision and told the psychiatrist I had learnt my lesson

My PP episodes were in the mid 70's and early 80's and I was on various medications some of which are probably not used today. I was given Prothiaden and Amitriptyline for anxiety and depression with anti-psychotic medication Chlopromazine. I think the dosage was gradually reduced over time and under supervision. Thankfully I don't need to take any medication now.

I did need ECT treatment as medication alone wasn't working but this was used as a last resort. I think if you are guided by your GP he will be able to devise a treatment plan that works for you.

Take good care of yourself .... we are all here to lean on.

[Shezow in reply to Lilybeth]

You're very inspirational, I think we only feel truly healed once we are off all meds and know that our mind is running on its own biology

Hope to be Med free like you one day

Although I wouldn't hesitate to start meds again in the future if needed, hopefully not.

Xx

[Lilybeth Volunteer]

Hello Sherrymoon

It must be hard for you to be discharged from everyone. Medication will work but I think you also need the ongoing support of a care team until you feel well enough without their involvement. Perhaps you can ask your gp for more support when you see him on Wednesday if you think it would help?

In the meantime I'm really glad your husband is so supportive and we are here too.

Take good care of yourself ....... PP mums are amazing

[Ellie_at_APP Partner]

Hi Sherrymoon

Sorry to hear that you had a panic attack, and felt depressed afterwards, and are back on the medication again. That sounds wise to take it, until you see the doctor again. I did find that my recovery was a bit like that, up and down, with more and more good days that got longer and longer but I did have 'blips', even after having a long period of being well. Each person's recovery journey is different.

I know that you want to come off medication, I did too, but don't beat yourself up if you need to go back on them for a time, maybe you're not quite ready yet. I found I had to wean off very gradually and slowly over about 2 years, others need to take medication for longer.

I hope your meeting with your doctor goes OK. I agree with Lilybeth that it's a pity you don't have any mental health support at the moment. I was lucky in that I was with the early intervention in psychosis team and they were there to support me for 3 years. In that last year I hardly needed them, but it was so reassuring to know they were there.

Take care, I hope you can get the support and answers you need

Ellie

[Shezow]

Thank you ladies I'm definitely going to ask my doctor for more support and see what he says

[Lilybeth Volunteer]

Hello Sherrymoon

I hope your doctor will be able to help you on Wednesday. It might be an idea to write some things down that you want to ask as sometimes when I was in front of professionals I would forget my questions

Thinking of you ..... take care.

[Shezow]

Hi lovely ladies,

Went to see my doctor this morning, he's put me on a repeat prescription of the meds and has advised me to carry on taking them daily for 3 or 4 months, then will take it from there, maybe try missing a day dose then to twice a week for a long time, like a year.

I just hope I don't get trapped in a cycle of trying to come off then having to go back again.

He's also gave me a form to get some bloods done, for some symptoms I've been having which I believe are because of weaning off meds, but he doesn't believe in withdrawals

Thank you for your support ladies.

In terms of more support it went complete out my head to even ask even though I had a list written down. I think I'll be okay as I'm back on the meds, However I will need support in the future when I decide to come off again

[Lilybeth Volunteer]

Hello Sherrymoon

I'm sure you've had a tiring day with your doctor's appointment. I hope he will call you in for regular medication reviews

I've edited this reply as it seems our posts crossed

Take care.

[Shezow in reply to Lilybeth]

Yes seems like we posted at the same time!

As always, thank you 😊

[Lilybeth Volunteer]

Hello Sherrymoon

I hope you are feeling better now that you are taking the medication.

Thinking of you ..... take care.

[Shezow in reply to Lilybeth]

Hi Lilybeth,

I'm feeling okay I guess bit of anxiety here and there but otherwise great, just sucks not being able to wean off totally, one day hopefully x

[Lilybeth Volunteer]

Hi Sherrymoon

I'm glad things are better, although still with just a sprinkling of anxiety now and then. You're doing great sticking to the plan ...... it's a waiting game but you'll get there x