Is this just how it is?

Hello all,

I'm getting desperate and losing hope. I've been on 125 mg of quetiapine for 2 weeks.

The entire day I'm completely depersonalized. All I can do is play a game on my phone, draw lines in a notebook, and look up things about PP on the internet. I literally don't know how I survive the day. My boyfriend is with me all day, but we don't really talk. He just sits next to me and plays video games to keep me company. My baby is being taken care of by the rest of the family. I think about suicide every day. I keep waiting for the meds to "kick in".. but this seems just ridiculous. Is this really just how it is? I can't imagine it getting better if it hasn't yet. The only relief I get is when I'm asleep, though I wake up several times usually, in a cold sweat and take sleeping pills to keep sleeping. I'm either extremely anxious, hopelessly depressed, and throughout that extreme depersonalization/derealization and the awful PP thoughts. I never heard voices or saw things... but this state is unbearable. Is this really just how it is while I'm waiting for the meds to work? I'm really worried the dosage is too low. I think they keep mis-evaluating me because I have a high level of coherent speech/thought. But this is unbearable.. I literally don't know how much more of this I will be able to take... sometimes I hope I will just die in my sleep.

30 Replies

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  • Hi Kaktus

    I'm so sorry you're struggling so much. I know that it feels like an eternity but 2 weeks is a short amount of time, and medication does take a while to take affect.

    Do you have support from any mental health professionals at all? Do try and tell them everything about how you are feeling, and what kind of thoughts you're struggling with.

    Are you able to do some small things each day, or does it feel too overwhelming? When I was unwell, I would set one small and realistic goal for myself each day, for example going for a short walk, spending some small amount of time with my baby, doing a small bit of housework. It made me feel that I had achieved something. But perhaps it feels too much to do anything? - I am just thinking of anything that may help distract you from your thoughts and ground you in some way?

    I know it feels like you might never get better, but you really will, this really is temporary, and you will be yourself again, and enjoy your baby.

    I am thinking of you,

    Take care,

    Ellie X

  • Hi kaktus,

    So sorry to hear that you are struggling so much. Your experience sounds very similar to what I've read and experienced myself. I'm still in recovery after having my daughter 20 weeks ago. I can tell you that it does get more manageable. I'm still no where near 100% but things are easier than even 2 weeks ago. The medication definitely does take a while but if you are concerned about it then definitely raise these issues with whoever you speak to in your care team. I'm on sertraline for anxiety and depression and olanzipine for the psychosis and they are definitely helping loads.

    I, like you spend time just playing games on my phone and to be honest it helps my mind I've found. I have also been painting to help my recovery as that's something I've always enjoyed. The games help take your mind off of your mind, creativity can do this as well. I felt unable to care for my little girl at the beginning but am now much more hands on and interacting with her much more.

    It does improve just slowly, just keep hanging in there and discuss everything with your care team. It's such a horrible, isolating illness but posting on here is definitely good too and as time goes on you will feel stronger and more able to cope.

  • Hello Kaktus

    Just to add to the good advice here already ......I'm not sure about professional care if you're not in the UK but wondered if you are feeling so low whether you can contact your care team? It must be very worrying to have such thoughts, which I can relate to, but if you can't distract yourself from them I think you need to talk to someone from your care team. Here in the UK I was mainly treated at home following my second PP and admitted to hospital in times of crisis but I'm not sure about care where you are.

    Perhaps instead of drawing in a notebook you could keep a mood diary so that if you do have to be reassessed the diary will be a good indicator of how you are feeling? If a family member can go with you to an appointment for support it might help your care team to know how much you are struggling

    It's good that you have support from family to care for your baby while you are not well. If you can possibly share in your baby's care while he / she is being dressed or being fed, it might help to build your confidence and connection. Your motherly instinct is there but hidden by all that you are going through.

    PP really is a temporary illness and very treatable so please stay safe and keep talking to your family about how you honestly feel so that they can seek the right help for you.

    Thinking of you .... take good care of yourself.

  • I literally don't know how I get through the hours. There are so few things I can focus on.. pretty much just my phone, the doodles, and this forum. I wish I could sleep more. During the day I can't even lay down and close my eyes, I'm too scared to. Is this how it was for most of you at the beginning? I'm going to ask the doctor about the depression/anxiety today. They are making everything harder. I have an appointment today at noon. Unfortunately I have to go out of the house to get there... I am going with my boyfriend but I wish they would visit at home. Unfortunately that's not possible..

  • Hello Kactus

    I'm sorry to hear your going through such an awful time at the moment....I can really relate to everything your saying it's a very difficult time I know but like everyone is saying with the right support and medication it does improve...sadly it gets frustrating because everyone will say it takes time which is true it certainly does but take each day st a time and slowly little things start to come back, I've experienced this just recently, since going through a huge amount of medication changes, hospital admission and second opinion I think I'm finally on the right track and my depression isn't quite as intense as your describing. How long has it been since your psychosis if you don't mind me asking? Like others say 2 weeks is quite short really to judge if meds are right, normally takes 4/6 weeks to see full affect. Hang in there and keep doing what your doing on here because there's lots of supportive peeps on here and it's just nice to know your not alone...things do get better! Like lillybeth said just be honest with your care team and tell them exactly how your feeling...I think a mood diary is a great idea too, I did that and took it to my consultant each time which really helped, I put description of feelings and used colours to represent different moods/really good days/good day/wobbly days /bad days etc... anyway I hope this helps...big 🤗 to you....you will get through this....stay strong Kactus xxx

  • Dear KAktus,

    Sending you big hugs. I don't even like to think back to that period of my life. What I do remember is that in the unit I was in, 2 weeks was the period they gave any new meds to kick in. Then they would assess and make any changes. In some fortnight periods there would be a change and in some not. It was a long drawn out process in my case. All I can say is that you are going through the nightmare stage now. It will pass. You just need to hold on tight. And maybe find something to pass the time: expand the doodles, add colour, cut them into pieces and stick them together again. It doesn't have to be great art, but it can help as a diversionary tactic.

    Thinking of you,

    Jane

  • Hello kaktus

    Good to hear from you. Are you just sixteen days now into recovery? This is very early after being through such a trauma. After I was sectioned to general psychiatric care I wasn't communicating at all so in a way you are doing well in expressing how hard things are for you.

    I think you have to come to terms with what happened to you as it's such a shock. As I mentioned in your other post, it felt as if I was a different person with thoughts that I would never have had in my 'right mind'. Depression and anxiety are very draining and seemed endless during my second PP recovery but with good care and family support I did fully recover as you will eventually.

    I hope you will be able to explain to the doctor today how low you're feeling. Perhaps your medication might need adjusting as finding the right balance did help me with other interventions along the way. I was always overwhelmed in front of doctors so perhaps it's a good idea that you have company today.

    Take care, it's not easy but slowly it will get better.

  • Hello. Thank you for the support. I just got back from the doctor. They increased the dosage of the quetiapine to 200 and added an antidepressant. I hope it will help. It was hard to go outside but then I felt somewhat relieved to talk to a doctor. They wanted to put me back in a hospital when I spoke about suicidal thoughts but I don’t speak the language (I’m a native English speaker but live in the Czech Republic) and it would be a general, “closed” ward again, with no access to my phone, etc. so I refused. I still think home is better even though it’s really hard. At least I have people who love me here and my familiar things and the baby though it’s hard to be around her.

  • Hi Kaktus

    Its good to hear your update. Well done for managing to get out the house and to the appointment. I am glad they have increased your meds, and added the anti depressant. I hope that it will help you. I had to have both too, an anti psychotic and an anti depressant.

    Thinking of you, you are going to recover and get better, it just does take time to find the right treatment. I hope that you get some support from professionals at home too, someone who can suggest ways for you to cope with your thoughts etc.

    Take care, we are all thinking of you,

    Ellie X

  • Sending loving thoughts to you, do speak to your care team and tell them how you are feeling. I had PPP in 1990, my son is 26 now, it will end. I hope you feel better soon.

  • Dear Kactus

    Just to say I hope you feel better soon - you will feel better, it just takes a little time.

    If it makes you feel better, I can barely remember how bad I felt when I was in the depths of PP. maybe you'll forget too in a few months.

    I think keeping busy is key - be it washing up, hoovering, texting friends, cooking dinner or even peeling potatoes or carrots for dinner, every little accomplishment builds you up until one day you find yourself well again. That's what I found.

    Colouring in one of the adult colouring books is good, so is having a bath, massaging your baby, going for a walk.

    You will get better.

    Thanks for sharing your struggles, one day you will be the one writing advice xx

  • Hello kaktus

    I hope the increase in medication with added antidepressant will be helpful. I had anti-psychotic and antidepressant medications too with other interventions which eventually worked for me.

    I think it's good you had the courage to visit your doctor as it's a relief to talk openly about how you feel to someone who understands and can help you. Is it possible that you can talk to the doctor or nurse over the phone, on a daily basis, so that your thoughts can be monitored if they become overwhelming? I was in a 'closed' ward without my baby, years ago, and appreciate how hard it must be to think of returning. Hopefully your family will keep you safe and the medication will slowly make a difference.

    Take care .... we are all here for you.

  • No this isn't how life is! I have been meaning to reply but haven't been sure what to say. I had PP last January and it's been a rocky 20 months. The reason for not wanting to reply is because I don't want to stress you out even more things get easier but you have to be kind to yourself. I still terribly with anxiety and have to plan things into my day to distract myself from my thoughts. For me life will never be the same again which is probably not what you want to hear. But everyone is different. I'm off medication now and learning to cope with thoughts and feelings on my own. I too had the suicidal thoughts and that is what troubles me at the moment. Not that I have them but that I had them, if that makes sense. I love my daughter and try and make everyday special. I still struggle as I feel the genie has been let out of the bottle and I can't seem to get it back in. But I am nowhere near as bad as I was last year and hopefully in years to come things will get better and better. There is no quick fix for this illness unfortunately and it's harsh but with support we all make progress.

    Take good care of yourself x

    X

  • Hi Kaktus,

    You're not alone in how you're feeling. I was hospitalised nine months ago with Pp and of course was medicated too to help me get getter. It took a good while for the meds to kick in and actually it was my family who helped communicate to the professionals what was going on for me. Are your family able to help in this way? Can anyone attend your appointments with you if they're not already?

    Keep telling them what's happening for you, you'll get there I promise.

    As others have said, it is a slow journey sadly. And people just say you need time which is so frustrating I know. Be kind to yourself, you've been through a huge trauma, and you're battling to get better still as am I in many ways. Sending hugs.

    We're all here cheering you on. Xxx

  • Hello Kaktus,

    I just have been reading the thread of these comments from all those mums, -and the advise and support is plentiful & moving. You are not on your own. Life will turn around!

    I honestly can say, you will get better. When I got poorly I was in a psychiatric mixed gender hospital with PPP. My partner never thought I would be able to get out. Finally appropriate medication was found in order to tackle the illness.

    My partner was my registered carer and I was supported by a crisis team, Psychiatrist, GP, Social worker, Health Worker, family, neighbour, friends...countless people, who offered their help.

    At least the first 6 month I can not remember and just rely on records and/or statements of others who have been helping me.

    I thought I let you know a bit about my story, because I managed to wean off after one year and slowly recovered leading a happy life with my son and partner.

    Painting, walking, talking, connecting with events and activities eventually,-all this will help you to find your feet again.

    Like all the other ladies we are back and we become stronger!

    Big hug,

    x

  • Hello kaktus

    Just wondering how you are since you last posted? I hope you have good support around you.

    Take good care of yourself.

  • Thank you so much for inquiring. I am doing MUCH better. I have a new psychiatrist who completely changed my treatment (except the quetiapine.. he added 5 mg of Abilify, as well as a gentle antidepressant, non SSRI, to help me sleep, and clonazepam for anxiety as needed and this has literally been life-changing. I realize how much anxiety was adding to my depersonalization/feeling of utter despair. I guess the anti-psychs also finally kicked in. Now I actually feel like I am a person who is recovering rather than someone still in the grips and unable to continue. I have found inner strength. I even feel joyful in moments. I’m slowly working on connecting with my baby, which is still hard. I can partake of activities that I used to love like yoga and cooking and even a bike ride. I’m keeping my fingers crossed that I am on the up and up. I’m so thankful for the support I got here, it was the only lifeline for a moment there..when I didn’t think I would make it. Now I feel like I have to rediscover life but I am so grateful to have that chance. I know that the journey through meds and then getting off them will take some time but my goodness.. things are so much better.

    I listened to this song by accident on a radio station I like and I really connected with it. I will share it. If someone is still very fragile, maybe it is not the best idea to listen to it, but for those feeling a bit stronger, they may connect to it as well:

  • Hi kaktus

    It is really lovely to read your reply and to hear you're feeling a bit better. It sounds like quite a big difference and as you say you will begin to recover now and slowly regain your confidence as a mum. I'm really glad you've found a good psychiatrist.

    Do write here whenever you need to.

    Take care

    Ellie x

  • Hello kaktus

    That must be such a relief that you now feel so much better and getting back to activities that you used to love. I'm so glad the grip of PP is lifting and hope you feel stronger each day as you recover. I wonder if baby yoga would help in your interactions? Try not to worry .... your motherly instinct has been squashed by all that you have been through but as you regain your confidence it will flourish.

    It's funny how music can relate to how we feel at the time we hear it. I was in a shoe shop years ago and heard "I'm going all the way" by Sounds of Blackness. I bought the tape and played it over and over ..... some of the words being "Whatever it takes to make it, I'm going all the way .... I may be down sometimes but I won't be down always ....." More recently "I'm still standing" by Elton John is my rebuke to PP. :)

    Take very good care of yourself. We are all here to support you.

  • Hello all. Just an update and some questions. It's now been 5 weeks. My psychosis symptoms seem to be gone but I have a lot of anxiety and depersonalization almost the whole day. Also, lately I am not sleeping well even though I am taking quetiapine which people usually sleep heavily on as well as calming pills and a low dose antidepressant that is supposed to be sedative. I fall asleep but I wake up a lot, and last night I woke up with my heart pounding like crazy. The lack of sleep and the fear of how the night will be are all creating a vicious cycle. I was wondering how others felt when they were no longer in psychosis but in early recovery. Is the depersonalization common? And the anxiety?

    Sorry, just having a rough time again... I was so happy for a few days because I felt so much better taking the clonazepan regularly but then the doctor said to take it only as needed and since then I've been feeling a lot worse yet I'm afraid of benzo addiction if I keep taking the clonazepan regularly.

  • Hi, maybe u should give this a try I suffer from the same thing and someone posted this this morning . Here is some information from webmd.com.

    5-HTP (5-Hydroxytryptophan) is a chemical by-product of the protein building block L-tryptophan. It is also produced commercially from the seeds of an African plant known as Griffonia simplicifolia 5-HTP is used for sleep disorders such as insomnia, depression, anxiety, migraine and tension-type headaches, fibromyalgia, obesity, premenstrual syndrome (PMS), premenstrual dysphoric disorder (PMDD), attention deficit-hyperactivity disorder (ADHD), seizure disorder, and Parkinson's disease..

    How does it work?

    5-HTP works in the brain and central nervous system by increasing the production of the chemical serotonin. Serotonin can affect sleep, appetite, temperature, sexual behavior, and pain sensation. Since 5-HTP increases the synthesis of serotonin, it is used for several diseases where serotonin is believed to play an important role including depression, insomnia, obesity, and many other conditions.

    I order mine from Life Extension online, but I have seen it over the counter in vitamin sections of grocery and drug stores.

  • Hi Kaktus,

    Sorry to hear things are tough. I just wanted share my experience and say that yes, anxiety was a massive thing for me after the psychosis had subsided. I spent 3 months in hospital overall and wasn't psychotic the whole time (thankfully) but was very up and down and anxious. I couldn't make a decision on anything and disturbed sleep really sent me into a spin that I was becoming ill again, if that makes sense? It's completely natural to feel that life will never be the same again and you will never get better, but I can say that it really can. PP is awful and recovery is hard, but you can get to where you want to be again. It just takes time and the right treatment and support.

    Perhaps you could ask your doctor or care team if they can look at your medication and see if it can be adjusted to enable you to sleep but also not feel too medicated or dependent. I also wanted to say that medication is really important, and was in my experience too, in recovering from PP so getting the balance right can take some trial and error. It's also not ideal to try anything without professional support in case of any interactions with the Quetiapine and anti-depressants (I am not medically trained and am unable to offer any further info on this as I didn't take those medications - I just know how my meds were invaluable at the time in my recovery, as much as I hated taking them!).

    Have you see the APP Guides? The Recovery one gives some really good tips from shared experiences of people who have been there. app-network.org/what-is-pp/...

    Try to be kind to yourself and take good care, we are here for you and thinking of you. All the best, xx

  • Thank you. I guess I just got excited when the worst part seemed to be over and I was able to do things again but then I realized how much more there is to go, how the anxiety and depersonalization are still strong and there's still a journey to travel. It's childish but I keep wanting to bang my fists against a wall and just demand that I get back to "normal" (or "new normal" as I keep calling it).

    I think getting better sleep will be crucial. I will definitely speak to my psychiatrist about that.

  • I did have a cathartic dream yesterday. Very dark but it seemed healing to have it. I'm also starting talk therapy on Tuesday so I hope that will take me to a new level of healing.

    Thanks again. This place is so supportive.

  • Hello kaktus

    It's frustrating when you get so far and then take a few steps back isn't it? Talking therapy is really good to open up about how you are feeling. As you settle into the sessions you will feel more comfortable and it will be a weight off your mind to share your thoughts [a bit like this forum] but face to face :)

    We are all here for you whenever it helps to talk .... take good care of yourself.

  • Hello kaktus

    I hope you are ok and the talking therapy will be helpful today.

    Thinking of you .....

  • Thank you Lilybeth,

    I'm still in the same sort of state, seems like a plateau. I'm vaguely anxious and quite depersonalized/derealized most of the day. I'm taking low doses of clonazepam for the anxiety but it doesn't really help the DP/DR very much.

    My sleep is not great. I sleep almost 8 hours but it feels like I need soooo much more.

    I wonder if others felt that way in recovery- like their brain is just exhausted, even when they do manage to sleep?

    There's also a feeling of emptiness.. and anger... and other suppressed emotions. I feel like the anti-psychotics suppress emotions but I can feel them sort of chocking me around my chest area.. all the uncried tears and unsaid words.

  • Hi Kaktus, thanks for letting us know how you are going. What you describe is how I look back on my recovery being from PP, although I did not realise it at the time - so I think that is a massive thing to be so self-aware of how things are, well done!

    Describing recovery as brain exhaustion is a good way to look at it, as I would agree that is how it felt to me - again, sleeping a fair bit but it was never enough, feeling empty, like I was never going to be "me" again...

    Sometimes a good cry is really cathartic. I hope you are feeling better soon and please do keep "chatting" to us here if it is helping you. Take care, xx

  • Hi kaktus

    I just wanted to say that everything you describe was my experience of recovery too, as Hannah says.

    I had so many emotions, grief, anger, sadness and felt very detached at times. You have been through a trauma and your brain needs time to heal. I was anxious too and felt exhausted, I think this is partly our bodies recovering from what we went through, but also the anti psychotic medication can be sedating.

    You will get better. Slowly I had better and better days until there were no more difficult days.

    Thinking of you, we are here for you x

  • Hello kaktus

    Thanks for taking the time to reply. I hope you have been reassured by the replies that many of us have felt as you do. Hopefully your new Psychiatrist will be monitoring you closely. I think as your talking therapy continues you will feel able to release all those emotions you have been keeping to yourself and feel much better for it.

    Take good care of yourself.

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