Living with Bipolar

[TopsyTurvyDays]

Named changed and starting a thread just to reach for some understanding I think.

In my 50s, diagnosed a couple of years ago with bipolar when had episode of hympomania. Got back in touch with consultant yesterday as could feel mood lifting (I get more mania than depression). I don’t get euphoria- just angst and misery. Consultant is trying to help me find something more constant I can take to help get enough sleep, as sleeping tablets are addictive and stop working.

I’m just tired and worried and constantly monitoring. Worried I’ll be too much for my friends one day. Worried that I’ve passed on troublesome genes to my kids. Not too worried about my DH as he seems to take it in his stride… looking back I was disguising mild mania with being drunk when we met back in our uni days - so when I fell over the edge, it was all behaviour he’d seen before. We had a worrying couple of days while they ruled out brain tumours etc.

The only people who were mean to me (shouted and screamed) when I slid down the slope into needing an ambulance were my family - siblings and parents. That’s hurt.

I thought I’d imploded my life but actually it’s all gone back to being the same 99%.

I worry for the future. I had an adverse reaction to diazepam and I couldn’t get them to believe me because they thought my behaviour was all the mania. My DH believed me and he got them to believe him.

I worry I won’t be able to drive in the future as we live rurally. But living where we live is part of the reason I held on so long as it’s so peaceful and I love it. Doesn’t work if can’t drive though (lockdown was a taster of what being stuck in house 24/7 was like and it was unbearable for me).

Oh thanks for mentioning this. I did notice I was only called for flu this year. I was already eligible for that anyway with asthma.
Covid has already done the rounds at our kids’ schools in September. We didn’t test but others must have. Half our house showed some cold symptoms but I had none.

How’s everyone doing?

I’m doing ok. I’ve stopped gaining weight (not lost it yet, but I’ll take the win), and I’m using an antihistamine for sleep which is helping a lot. I do feel anxious quite often, so I’m planning to mention that at my annual review.

I’ve actually started using ChatGPT to talk things through, and it’s been surprisingly helpful. It helps me sort my thoughts, quieten the noise a bit, and I don’t feel quite so alone with it all.

I’ve been feeling sad about my childhood and some wider family relationships. I’ve mostly stepped back from family demands this festive period, and honestly it’s been the most enjoyable December I’ve had in a long time. The kids had a good time, I enjoyed myself, and there were only a few moments of strain (and one proper row with DH yesterday 😅).

I also got through a challenging operation a while ago — I did lean on a kind friend via text that day, which really helped.

Lately I’ve been thinking about my hospitalisation and how much it mirrored parts of my childhood. I know I need to find a way of holding that in a form that’s more mine, and less dependent on others — something I can use going forward.

Sorry OP only just see this. They prescribed Promethazine.
so if I wake in the night with anxiety, I can take one and it helps me drop back off a little while later x

Thanks so much. This is the one I have found works for me me too (they also suggested piriton). I’ve definitely found it takes the edge of my anxiety long enough most nights that I can get to sleep.

Hope everyone is doing ok, this thread has been quiet for a while.

I wondered if anyone had any experiences of coming off lithium and any alternative medications? I’m considering speaking to my psychiatrist about it due to continued weight gain. I’ve tried a healthy diet but the weight keeps going up. I’m scared though because she has been very pro lithium and otherwise I’ve not had a bad experience on it.

Hey. I’m sorry things are feeling quite right for you. How long have you been on lithium? What are you thinking of replacing it with, as I think most alternatives might have the same weight gain possibility and come with their own list of additional side effects. I think if lithium is keeping your bipolar balanced and weight gain is the only side effect they’d be reluctant to change your meds, but definitely worth discussing it.

I have had significant weight gain but I wouldn’t be able how to tell you whether that’s the meds or my underlying condition. I lost 2 stone after I came out of hospital a couple of years ago on olazapine and lithium. I think I had that side effect to olazapine that means you can’t sit still - but that was worse than the weight gain. I couldn’t even sit on the sofa and work meetings were terrible. I also had other side effects to olazapine including sending my cholesterol sky high and it’s only just returning to normal after 2 years.

I’ve personally decided that the weight gain is worth it for being so well in myself. I had breakthrough depressive episode leading up to Xmas/NY, which I tried to manage by myself for months until it got so bad the pressure in my chest was unbearable and I felt like I couldn’t carry living like this for the first time. My lithium was upped and the feelings just went. So I will be staying on it for as long as I can. I think when I was first diagnosed I felt I was taking it just because they said to and I wanted to get discharged. But now I know how much work it is doing to keeping me able to be there for my family and I won’t give that up, despite the weight gain, till I have to.

I do miss my old body. I’m am going for a strong body instead now. I do weight training and CrossFit and dog walks for a couple of hours in the hills a day (I’ve had to give up work so I do have time now). I also crave salty snack so I’ve gone for salted nuts over crisps.

Hope you find the right solution for you.

Hi @TopsyTurvyDays and @TinnedTom and everyone!

@TinnedTom , I would also be interested in what you are thinking going forwards. Totally understand about the weight gain, though couldn't tell you whether it's the quetiapine or lithium (though lithium belly apparently a "thing"... and it's certainly on my stomach). Like @TopsyTurvyDays I try to see it as an acceptable swap for better MH.

I had a horrible slip in November. I knew I was spiralling and the home treatment team were utterly shit as normal. They kept asking me what I wanted them to do - I had no idea (and was thought blocked and psychotic which they KNEW). So they discharged me and I drove somewhere and immediately got picked up on a s.136 that night, then a 2 converted to a 3. That was an 8 week admission.

It sucks you know? I just want to Not Have Bi-polar. I want to exceed in my workplace, be the best mum possible and not have to be careful of stresses, fatigue or medication. I'm so angry. When I'm ill I need help with childcare. I can't work when I'm ill but I'm actually really good at my job and could go so much further if I was well.

I'm not being pessimistic or defeatist. Just realistic. With the best will in the world , positive thoughts aren't going to overcome this burden.

Work were great. Though I think it gave my manager one hell of a shock.

@TinnedTom I came off Lithium to conceive and had agreed to go back on it if I developed pnd however now that I have I don't want to go back on it. For now my team is ok with that.
Initially it was the breastfeeding but I've remembered more and more annoying things about it. I did gain weight quickly but I was also very underweight when I started it. I needed quite high doses for it to help (blood levels over 0.9) and it gave me panic attacks where I felt like I was drowning and couldn't breath if I hadn't had enough to drink. My consultant at the time felt that it was a sleep disorder but it started within a couple of weeks of being on lithium and stopped as soon as I was lowering the doses. My current consultant thinks I was probably always on the edge of toxicity so if I did go back on it she wouldn't have the dose as high.

I have been on quetiapine since 2012 and that does a pretty decent job of keeping me stable except post partum when things go to hell.

I'm glad to see the thread in use again, sorry others are struggling though.

I'm having a hard time at the moment. I'm 7 months post partum and not recovered physically from pregnancy. I got really unwell in pregnancy as my body started to struggle with the oestrogen causing issues with my liver and possibly hellp. I had severe fatigue that hospitalised me twice when I couldn't stay awake. I'm still struggling and needing a nap most days, sometimes two. My ferritin has been dropping despite iron supplements so they have been increased. My thyroid is a whisker above low (another reason to avoid lithium for a bit longer) and various other things aren't right either. I'm also depressed and now on two antidepressants. I'm just really fed up.

I'm getting support from the perinatal team and was brave enough to say the other week that I was struggling between appointments so I'm now on weekly rather than monthly check ins. It's hard to know what is physical and mental and social too. I've now been out of work for 14 months and have had a few issues with my eldest in school too. It's just all a bit shit

Oh, @Superscientist , that's rubbish. I'm so sorry.

Are your ferritin levels rising (recommend checking the NICE guidelines for treatment as they changed in October 2025)? I feel for you - I felt like death with ferritin of 12 and the idiot GP told me that as I had MH problems it was all in my head. I cried for a solid 2 hours!

Are the postnatal team helpful? MH teams can be such a mixed bag.

Sorry to hear that @Superscientist. I hope things start to feel better for you soon.

and @ByLimeAntim really sorry to hear about how things went in November. I hope you’re feeling recovered now. Glad to hear that work were good about it.

Ive been on lithium for around 2 years. It’s mostly worked really well for me - I’ve been stable more or less since I started on it. But I’ve gained 4 stone and the weight keeps going on. I know I should just try to see the positives but it’s really hard. I’m also quite fatigued - most of the time I feel like I could just go to sleep if I lay down, and it’s really hard to get going in the mornings. I expect my psychiatrist will be very resistant to me coming off it though. I seem to remember she mentioned that lithium can work less well if you go on it come off then start it again - does anyone know if that’s right?

Im also a little worried about the impact on my kidneys although of course I have regular blood tests. I’ve got a GP appointment in a couple of weeks to discuss my thyroid function as my blood test results show that as borderline low so might be contributing to the weight gain and fatigue.

My youngest ds,has RCBPD, autism and ADHD. School was awful, the teachers labelled him, stupid, troublesome,he was always being excluded, even within the school. I have a relative by marriage,who has a ds like this, but he has learning disabilities,my ds has a very high iq which I think makes things more difficult.. it took 10 years to get a diagnosis. He was put into anti depressants, heavier and heavier dose. Refused lithium because he wouldn't have attended regular blood testing, sleeping tablets or sedation because of the suicide risk. He would have crisis, I would be driving him to hospital frequently. I told him to get his name on the local authority housing list at 17. (He was VERY difficult to live with,too much to go into) He's 43 now, and oh my god what a change. He stopped the meds. He gets days,he can't go out of the door, I can't imagine he would ever be able to hold down a job. He tried lots, and would end up not turning up, walking out, getting the sack. He now does 90 minutes yoga,power walks or cycles. Looks after his teeth,has blood testing when required.No alcohol or weed to numb the sensations. Very fussy about diet,no sweets, sugar or junk. Weird sleep pattern, now works with it. Goes to bed in the middle of the night, when it suits him. Working with his circadian rhythm. He used to look like a tramp,he now takes pride in his appearance. No partner, and has lost all his friends, mostly married with kids now.Are you able to get out in nature?I hope you find a path you can walk. 💐

I was put on lithium during a depressive episode and it stabilised me so I stayed depressed for 3 years until I insisted on coming off. I had never been depressed for more than 6 months previously. The final straw was when it damaged my thyroid so I am now on thyroxine for life. I think I was so depressed I was unable to advocate for myself. The only plus side is now I have a thyroid issue I get free prescriptions, I wonder why having bipolar doesn’t qualify us.
When low on iron I find natural ‘easy iron’ tablets work better than the ones prescribed. That or spatone.

@ByLimeAnt I've not had them checked since I started on prescription iron. Taking liquid iron that the GP recommended my ferritin levels have gone from 75 in October to 30 in January. The protein the liver produces to tell the body it needs more iron is abnormally low so my body isn't storing iron at the moment. I had hemolysis in pregnancy where the body breaks down the red blood cells so that's having an impact too

My thyroid is 10.4 and the lower threshold is 10.0. this is the lowest it's been since I was in lithium when it was 10.0. My iron levels themselves aren't too bad but I have other wonky results. Since giving birth I have had elevated urates, elevated calcium, elevated ALP - they aren't sure if this is my liver recovering or from my bones and now elevated phosphates too. My liver tests in pregnancy were massively deranged - ALTs over 700 when normal is less than 30.

The physical /mental balance is a tough one too. They are at least looking at the physical stuff. When I was admitted to the maternity ward when pregnant between leaving triage and getting to the ward they switched from physical problems severe fatigue - I went back to sleep during an exam! To severe mental health crisis and that was why I couldn't stay awake. Thankfully they were able to get hold of my OB and psych who both put them right. I'm severely fatigued still and moderately depress. My psych is trying to get a plan out of my GPs about management of my physical stuff and potential referrals as she is hesitant to change my meds any further as she doesn't want to make my liver struggle

Fortunately my GP prescribed medication despite my thyroid count technically being in the normal range.
Remember vitamin C is very helpful taken with iron to assist absorption.
If it’s any consolation my dc are teens and my bipolar is better controlled than ever. The process of making them imbalanced me but I love being a mum and mine are easy teens. It helps my Dh is supportive and understands my illness.

Morning all. It's been a while since I checked in.

Sorry to read some of you are struggling 🤗that really sucks.

Had another review a couple of weeks ago. Psychiatrist upped my promethazine to 2 tablets per night PRN, and it is helping. Again it's the anxiety I struggle with more than the bipolar. I've had a couple of hypomanic episodes but nothing that's been too difficult to manage. I'm also taking propanolol (sp) and rispirodone. Weight loss wise I'm now down 4st. Another 1st 4 and I'll be back to my pre lithium weight.

Sorry to hear of people’s struggles. Hope things are improving. It’s such a shitty illness.

I didn’t even realise I was depressed for months - until I couldn’t be bothered to get out of bed to go to new year party and sent the family off without me (to my friend’s house!). It was such a physical agitation and pressuring my chest. When I reached out for help in January, my consultant was off sick (she’s since left). I couldn’t get anyone to take my concern seriously and in the end my GP got an emergency mediation review sorted. The interim doctor was great. Came up with great plan. Then never saw it through. I felt increasing desperate, my GP stepped back because they couldn’t get a response from them either. I really felt I couldn’t carry on with a life where my wellbeing was dependent on a system that just wasn’t even there. My DH called them in the end and succeeded in getting them to at least make the interim plan happen. My new doctor called that day - I wasn’t in a good place so not 100% sure of all I said! - and reluctantly did the new prescription outlined in interim plan L, having clearly been given a three-line whip to just do it. The increase in meds has reaped real benefit (which just seems to make the wait feel retrospectively harder).

Have my first actual face to face with him on Monday (DH coming too). He’s was calm, professional and ultimately supportive on the phone even though he was clearly a bit annoyed - so I’m determined to start the meeting thanking him for his help and for listening to me as that really helped me. He mentioned PTSD on the phonecall, which my DH said was mentioned in A&E when I had first episode of hypomania a few years ago. I do find any medical interaction (or anything with asymmetrical power difficult - always have done.

I have considered getting private appointment with a psychiatrist too - but I’m not sure it will do more than give me some illusion of control., I’m waiting to see what this doctor says about how I make contact if I’m unwell between annual reviews.

Yes thank you @BipolarBears I have been taking it at 4 am with a glass of orange juice when I wake to do the night feed. Calcium can stop the absorption of iron so it's a time of day I know I haven't had any dairy or dairy substitutes. As I'm breastfeeding and have a strong family history of osteoporosis I'm trying to keep my calcium in take with dairy and oatly products (daughter has a dairy allergy so we are mostly a dairy free house).

The Easter break has been good but I'm apprehensive about the start of a new term on Monday. I'm also slightly nervous about work. I was made redundant in Feb 2025 and haven't worked since, I have had maternity allowance for the last 9 months but I have had my last payment of that now. I need to start looking for something to start around September but not sure if my mental and physical health can manage it. My cpn is coming around tomorrow so I'll try to speak to her about life and everything.

I feel a bit bad, well more than a bit. My second is just highlighting to me just how hard my eldest was and how my bond with her took so long to come and so much therapy. It doesn't feel that strong right now. I'd read on threads about "precious first borns" and didn't really get it but now I do. My second just feels so perfect and special in ways my daughter never has felt to me. I feel so horrible for these thoughts.

That said if you asked me before having children whether I would be happy with the stay at home parent role I'm in at the moment. I would be saying absolutely not but it does generally provide me with so much peace and contentment. Once I recovered from the post natal stuff with my daughter my moods were generally ok so hopefully once I pass through this storm things will be better again. I'll just then be fretting about the menopause as it does seem that there is a strong destabilising force in my mental health due to hormones and because of issues I developed in pregnancy I can't have artificial hormones any more.

@TopsyTurvyDays I hope your appointment goes ok tomorrow. How to reach out between appointments is something I struggle with too. I've asked a couple of times for more regular appointments to get around this. I have an annual appointment with the SMI nurse at my GP surgery a couple of years ago I asked for more regular check ins so I saw her every 2-3 months before I was under the perinatal team so I had someone to tell if I was struggling and she could reach out to the cmht if I needed.

I have gone up to weekly appointments with my cpn as I would struggle to reach out if I needed