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).

Hiya please can i join?
im having a terrible time
lately, been mostly unwell
since last summer and been in multiple meds with little or no success.
im ashamed to say it but a month ago i lost the plot and took an overdose then ended up in psych unit for 2 weeks.
man on week 3 of lamotrigine which is giving me stomach cramps and diarrhoea but no lift in mood (although they said have to do slow titration so prob not therapeutic until been in it 6 weeks minimum).
thing i feel i need to talk about is fact my 22 year marriage has now broken down, mostly due to the last year of my depression. Today the CPN came out and my husband got involved and some of the stuff he said really got to me. He was saying I need to exercise, relax, eat well etc (all correct and yes he was trying to be helpful) but it was the other stuff that got to me. He referenced how I have been ill off and on for years and I try this and that and I’m always after the magic solution. He said that when I go back to work I will just be stressed and ‘have 2 hr whingathon’ when get home and that I seem to think I will be all happy by myself when I move out but basically that won’t be the reality when im
sat in my new house in my own.
I told him after the nurse went that I feel really bleak and that his comments didn’t help at all. He then got angry and started clapping his hands and said well done I have broken him and he can’t cope anymore. Then he cried and I went to hug him and he told me not to dare and then stormed out. For context I know it’s been hard living with someone who is depressed but I really have tried so hard to do all the normal stuff and keep going. He was angry about me masking how unwell I get but at same time doesn’t want to know any ‘negative’ stuff so I suppose that’s why we are splitting. Anyone experienced this? I am swinging between feeling like a piece of shit and then thinking that he just doesn’t get it - nothing I’ve done has ever been to hurt him or break him, he says he has no empathy left .

Welcome to our thread @MarmadukeM 😊!

That sounds horrific- is he normally like this?

Sadly, I don't think it's uncommon for spouses to act in this way. Maybe they perceive your masking seeing better and struggle to align it with how unwell you actually are. I don't know, but your post does resonate.

The clapping and storming off is unacceptable and mean though.

Not really, it’s as if now the marriage is over he can and does say whatever he likes and all these resentments are coming out that he never said to me before.
I could tell he was becoming very distant in last few months (possibly years) and now that he doesn’t have to make an effort it’s all coming out, he even said he feels better for getting stuff off his chest but that is hard to hear when I didnt really know that’s how he was feeling about me.

Just a small update from me.

I saw my psychiatrist today. She suggested I get bloods done for thyroid function due to the tiredness I’ve been feeling and that if that’s a problem my weight gain might be related to that.

Has anyone got any experience of thyroid problems on lithium?

@TinnedTom I had a borderline low thyroid when I was on lithium which recovered when I stopped.

Ask for iron levels to be checked too as low iron can give you low thyroid function too.

I'm struggling with fatigue at the moment too, I have a borderline low thyroid at the moment and my body is having issues with absorbing iron as my ferritin levels are falling. I'm struggling with low mood too and my psychiatrist would like me to restart lithium but I'm hesitant too whilst struggling with fatigue and with my thyroid on the low side.

I tried 150mg of trazodone last night to try and help
my insomnia - my god it was awful 🤦‍♀️I woke after 45mins (12.15am) with palpitations and anxiety etc, felt terrible! It is meant to be sedating but last night, apparently not 😖 I’m exhausted today as I think had total of 2hrs sleep max. Psychiatrist mentioned could try promethazine so I bought some but I’m a bit unsure what to do…
anyone had similar reaction to trazodone? Experience of promethazine? Be grateful if anyone could share xx
i really don’t want to take the trazodone tonight, I can’t cope with another night like last night!

Promethazine helped me not be awake but for me it was not restorative sleep. My sleep issues got so bad I needed an emergency medication review, as I was significantly depressed. They tried me on melatonin which has been amazing. I go to sleep and stay asleep till morning now. It does give me occasional seasickness type nausea after I take it but that’s rare and totally worth it. Two years of little to no sleep was so awful.

I would definitely recommend giving it a go and seeing how it works for you.

Thanks, I will try it tonight. I’m not going near the trazodone again 🤦‍♀️I don’t know if it’s a bipolar thing but so many antidepressants get me wired really easily and it’s deeply unpleasant. X

I just want a moan about how any complaints get turned back to mental health.
I'm still massively struggling with fatigue. It's been ongoing since August when I was hospitalised in pregnancy because of it. They then decided it was due to a mental health crisis. I was induced and it improved somewhat but not great. I've been having repeated blood tests since October and the response to every set is "hmm I think we need to retest them in another month" without really changing anything.

I've been on iron for the last 8 weeks and it has made no difference so I have had another appointment today asking for something different. I can't keep running on empty. I was getting upset because of just how hard I'm finding things because I'm so fatigued. So she stopped talking about my physical health and switched to the "are you suicidal, do you need support for your emotional health"
I had to point her to my records which so I have bipolar, I'm in a depressive episode and the surgery has several letters from my psychiatrist saying please sort out her physical health as it is holding back her pnd recovery

It’s a really tough side to having this condition . I really feel for you, I find the question “what’s stopping you from”… question quite useful in these types of circumstances. Eg what would they do next for someone in your position who doesn’t have an SMI.

Thanks @TopsyTurvyDays I had a good cry on my friend apparently this nurse is notorious for being dreadful. The nurse phoned me back after talking to the GP who is also known for being dismissive.
The only thing they can offer is to retest my iron in a month's time and maybe I will miraculously recover. I've asked for their complaints procedure.

She just kept repeating my haemoglobin is normal. Yes but it has been dropping steadily since October! The bnf says if haemoglobin hasn't increased by 20 in the first 4 weeks of iron treatment that it is being poorly absorbed mine has increased by 2 in 8 weeks.

I now have an appointment with one of the advanced nurse practitioners that's known for being really good in the morning. My blood results show that my iron stores are depleted and also that my body has switched off the mechanism for absorbing iron but she wouldn't just kept coming back to the one test result that's normal.

It's frustrating as a woman that the moment you try to be assertive and advocate for yourself you get classed as being emotional. I've read my notes for the consultation and it's mostly about how distressed I was

I get what you say - I feel like when I go to the doctors I am not ‘Jennie’ I am ‘bipolar disorder’ and all roads lead back to it. And they don’t actually know what to do with you anyway most of the time.
I know you are a science person , but have they done intrinsic factor testing and that kind of thing? Or could you ask them to do an advice and guidance request to say haematology?

I have had a barrage of tests, I am awaiting an endocrinology appointment as it most probably links back to the effect estrogen had on my liver and kidneys in pregnancy.
My thyroid and parahyroid are intermittently borderline too and the inflammation is probably a result of the icp/hellp on pregnancy.

She was only interested in the iron aspect.

In this case she didn't seem to be aware that I'm bipolar or under the perinatal team but I definitely had this in pregnancy. I was in maternity triage for severe fatigue and they were worried that I was falling asleep whilst talking to the Dr by the time I got to the ward an hour later that was all forgotten and it was my mental health and due to my medication.... That I had been on for 12 years.

I was so lucky I had my psychiatrist otherwise I think I would have found myself on the way to an MBU and taken off all my meds that keep me stable

Well hopefully the endocrinologist might actually have some useful ideas. The thyroid thing, I have come across people at my job where they are given thyroid replacement even though they don’t meet certain thresholds. I think any specialist has more confidence to try things that primary care aren’t comfortable with so 🤞you get some joy from them.

Yes with the thyroid post partum thyroiditis might be a cause and they can prescribe short courses of treatment to ride out that. The low iron can slow the thyroid down too.
I am getting to the point where I'd be willing to consider restarting lithium from a mental health perspective as my son is doing well with food and is seems to be ok with dairy but I'm hesitant to do so when my body is as wiped out as it is as last time it had an impact on my thyroid function.
Similar to the iron though my tsh is on the low side as well as the T4 so my body isn't correcting itself. When I was on lithium I had low T4 but my tsh was high so I didn't feel as slowed as I do right now.

I've just come up to bed for a nap, all I've managed to day it to walk my daughter to school this morning yet I feel like I have run a marathon.

I’m not surprised you are fed up. I hope you dont have to wait too long for the appointment xx

Please I join? I've been backwards and forwards to the mental health team since I was diagnosed in 2019 - I've tried various medications and different combinations which have never left me stable. I go from being high to low quite quickly depending on what meds they give me (currently on lamotragine, aripiprazol and lithium).

This time I've been under them for 6 months and feeling hopeless. I have a review with the psychiatrist next week and my care coordinator has already told me that I'll be discharged and left to get on with it. I feel like I've reached the end of the road medication wise that this is as a good as it's going to get. I used to be quite high flying and my house was immaculate - now I work part time, get pip and LCWRA and my house is a mess.

Anyone else felt like this?

I thought lithium needed secondary care oversight? I was told my GP can dispense it under a shared care agreement with community mental health team but monitoring and responsibility stays with community mental health team so always officially under their care?

I’ve had problems with care being patchy and slow after my consultant left. It is really challenging. My GP recommended I consult PALs. In a situation like you describe, I would definitely speak to PALs.

In my area the GP is responsible to monitoring me whilst I'm on lithium and then referring back to the mental health team if I've become unwell. To be fair to the mental health team I've always had a phone call the day the referral went in but it's just another layer for me to navigate when I'm feeling unwell.

They bounce me back to GP care as quickly as possible and I really don't like my new consultant. Last time I saw him he asked me what I wanted them to do and got stroppy when I said I didn't know and they are the experts.

Hi Everyone, I hope you’re all doing ok.
I called CMHT and asked to speak to duty team on Friday morning, as I felt my depressive episode wasn’t lifting. Still haven’t had a call back. I’m now questioning if I should be bothering them and maybe I’m not too depressed. I find this condition so hard to deal with.

Sorry to hear that - are you still under them or had you been discharged? I’m having a shit time as well so I feel for you xx

Are you under them? I’m sorry you’re having tough time too.

I was discharged back to primary care a year after I left hospital having been in for 3 weeks and diagnosed. But as soon as I struggled l, primary care said they could not alter my lithium and referred be back to secondary care. Well actually they said maybe I could just call first as a quicker route. Consultant very kindly called me back and gave me direct access via her email. When she was off sick at the start of this year then left suddenly, support has been difficult to get. I think she came back to work but not to the community department. I think I fit somewhere between primary and secondary care. Primary care can’t help me and secondary care doesn’t have time too. It’s so hard knowing I’m not a difficult case and they could help me but it doesn’t happen.

How frustrating- and typical! Ring them tomorrow I say x

@TopsyTurvyDays I was in that place for a while. It was after I moved and I was pretty stable and because I worked full time I was told I couldn't possibly need secondary service. When I had an episode I was referred back for meds review and discharged again with in 2-3 months. I wasn't on lithium at the time but it did make things difficult to feel like that there was a safety net to catch me

This is exactly the problem I think - I don’t feel safe and I feel like I’m having to be my own care coordinator. My GP has suggested I go to PALS. I’m also thinking I might see a psychiatrist privately to have someone who knows the system advise me.
I have a lovely life. I just want to be able to access it.,

Thanks so much to both of you to listening. It’s so lonely. I try not to burden my DH too much and I haven’t told my friends. They’ve been fab but at some point a friendship needs some good times to keep it going. I’m well enough on the lithium increase and melatonin that I can put on a front. It does leave me treary snd physically exhausted when I’m on my own.