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).

Could this be because of perimenopause/menopause? My mum got psychotic in her perimenopause years and was sectioned. I have schitzoaffective but I got ill when I was 23. My paternal grandmother had the same.

Have you tried lithium? It’s honestly changed my life. I have bipolar to and the moods were destroying my family. Since lithium I am 99% stable.

They have said that it is likely perimenopause has had an impact.

My Mum has schizophrenia and a more distant relative has bipolar too. I guess they’re all along a spectrum of mental health conditions and the labels are relevant mostly for treatment options.

I hadn’t heard of schizoaffective disorder. Just had a quick look on the Mind website. How have you found living with it and have you found effective treatment?

I've found stability on quetiapine. It's been great for regulating my sleep. I've needed other medication in episodes but in between times I take only quetiapine.
What have you tried so far?

I am on lithium. It does do a great job. But my sleep disturbance continues to be an issue since I tapered off olazapine, which they gave me in hospital. And lack of sleep soon gets me off kilter and heading upwards.

So far, I have tried zopiclone a couple of times. Worked but slowly the sleep issues return. And can only take for few days as it’s addictive and stops working over time.

The consultant has made suggestions when I contacted them yesterday for next options if this course of zopiclone doesn’t work for long.

1. :Antihistamines such as promethazine or chlorpheniramine. Both can be bought in the chemist.
2. Low dose sedative antipsychotic medication such as olanzapine 2.5-5mg or quetiapine 25-50mg.

So quetiapine is an option to consider. I cant go back on olazapine,,as I had high cholesterol after taking it when first in hospital and it’s not drop down again since I stopped it.

Thanks so much to everyone for taking the time to reply. It’s really helpful to discuss these things with people who’ve had some similar experience.

Does anyone else worry about the future? My Mum is 80 and doing pretty well even since living on her own after my Dad died - but I’m so worried I’ll have a different experience. I’ve never been very good about living in the here and now and forgetting about the future.

Hi OP, I also have BPAD. Funnily enough I was talking to my CPN about this this afternoon.

One of the things I have found the most difficult to come to terms with is the fact that it's unlikely I will ever be cured. I cycle about every 6 months (used to be 3) and every time I get better I think- that's it, I'm cured and it was just a really bad phase of my life.

I've been round and round the mulberry bush enough now and realise that I can only manage my symptoms and try to head off the cycle as much as I can (I lose insight when I slip, have a brief period of recognition and then lose that and get sectioned).

It sucks. I find it very difficult to hold down a job and have had my licence suspended twice (like you, very rural with no public transport).

What has worked for me is getting exactly the right* *medication. And that took forever. I'm on a bit of a combination including lithium, lamotrigine and high dose of quetiapine (have tendency towards psychosis when unwell). Lithium has been a game changer but I do worry about whether I can cope with it as I get older in terms of renal function.

Best wishes.

Thanks ByLimeAnt for your post. You’ve described exacting what I’m feeling and thinking. I absolutely thought I could put it behind me and the realisation has hit that that’s not the case. Feel a bit sad but I know I just need to accept and keep moving forward.

I’m considering going straight to trying quentiipine although my DH is keen to try antihistamines first, He’s been amazing but I think he’s still hoping his can hug it away for me. I wish that too!

I have made the decision to give up work. I tried carrying on but I just can’t do it anymore. I used to sell my soul working in London before we moved far north - so am in the fortunate position of being able to manage till my pension kicks in.

I have had my license suspected one when sectioned for that initial period of hypomania. I do wonder if moving into town would make me worry less if I did have an episode.

Your DH sound lovely! I'm glad you were able to make that decision about work.

I'm actually working part time temporarily for a different issue and that has made such a difference to my MH, so sounds like that is great you were able to make that choice.

Might be worth bearing in mind that quetiapine is not necessarily sedating for everyone (I'm on 600mg and it doesn't affect me in that way). I hope you are able to find a good fit for you, best of luck!

Quetiapine potentially could raise your cholesterol too as it the same class as olanzapine. Although having said that I can't take olanzapine because it makes me incredibly dizzy but have been completely fine on quetiapine.

I started treatment for bipolar around 2012 and between then at 2017 I was having 2-3 episodes a year. In bad years I was only getting a few weeks of stability between episodes. I changed my lifestyle in 2017 after finishing my postgraduate degree and since then I have only had 2 episodes! One mild hypomanic episode when we moved house and depression with psychosis after having my daughter. This was was pretty bad though and took 2 years to recover from as it became treatment resistant.

Take a look at the Metabolic Mind website and youtube channel. It was started by the Baszucki family when their son was diagnosed with bipolar and champions better understanding of mental health issues and better treatment. If you have the time and energy watch his story as it might give you some useful information.

I have a similar history to you op and I take Aripiprazole - it doesn't have any side effects and it regulates my sleep / mania very well.

Definitely try a new medication if you can.

Thanks so much for the good advice and supportive comments from everyone. My mind is fizzy and fuzzy this morning - so I’m going to head to bed. I’ll come back and have a look at everyone’s recommendations later. I wish I’d reached out a year ago! It’s been so lovely and useful.

Thanks for all the replies. It’s been very useful.

I have been struggling on, just willing it to go away and I now have the confidence to keep saying, I need to try something more as lack of sleep is so detrimental.

One more quick question: do you tell people?

The kids obviously know a certain amount but we’ve not told them the diagnosis. I want to keep my medical confidentiality (and teenagers tell their friends everything!) and the consultant said, in terms of their genetic risk, it’s a question of watchful waiting and we don’t burden them with any worry.
My wider family don’t want to know so that’s an easy decision.
I’ve told a couple of close friends. That’s not been easy but it’s not really changed anything.
I’m worried about telling more people but I wonder if that’s just a sign that I am still coming to terms with it. But then equally, no one goes round telling people everything about themselves - why do people need to know.

I have to really trust someone before I tell them.

Close friends witnessed my last hypermanic episode so they pretty much knew anyway. It got very messy

I'm interested in finding out what others say.

Oh and it was useful for to tell friends because they have all been wonderful and regularly check I'm taking my meds.

They remind me of how hard I need to work to stay well.

That sounds the same as me. My close friends definitely saw me at my worse but it was still a year before I told them diagnosis and I still found it hard.

I’m glad you’ve got some good friends around you.

My family don't know, my in-laws do. I tell other people though. It's definitely got easier with time. It's now 12 years since I was diagnosed and I'm fairly comfortable with talking about it with people less invested in my health and wellbeing. I also only find it easy to talk about when not struggling, when I'm in a episode I'm less likely to talk about it.

Family and very close friends know (couldn't really hide the sections).

Definitely not colleagues. Definitely not work.

If I see a doctor for something unrelated I do not mention it as it affects my care in terms of symptoms being written off as somatic and not being given appropriate pain relief.

The former happened to me recently and a very significant physical health problem was diagnosed. 3 days prior to this I had seen a GP who commented that I had recently had a lot of CMHT input and it was all in my mind.

Reader, I submitted a formal complaint and will refer him to the GMC if I don't get an apology.

I can relate to this so much.
i have bipolar type 2. I also found stability on Quetiapine
big hugs

I do tell people and I’m open about it. But it’s okay if you don’t want too x

I have schizoaffective too. It's a more severe & extreme form of Bipolar 1 & the 2 diagnoses overlap.
The difference for me is if I have a full mania (rather than a hypo) I become paranoid & psychotic.
People tend to be diagnosed with the more severe bipolar 1/schizoaffective as late teens or young adults so it's unlikely that you will develop it now & there's no evidence that bipolar 2 deteriorates into more severe forms.

I have the same issue with driving & also live rurally - I am very determined & independent & find a way to get where I want to - walking a hell of a lot, buses , electric bike.

It's actually better in some ways to have a more serious illness like schizoaffective as actually they respond to medication really well. Stuff like eupd isn't treatable & medication only masks it.

I don't discuss my diagnosis with anyone unless I have to. My friends & colleagues have no idea. It's definitely possible to lead a normal & fulfilling life with bipolar 1/schizoaffective

Thanks for your post, I like the idea of an electric bike. Now the kids are learning to drive,m that would be a great solution for me. I definitely want to live a normal and fulfilling life. I think I’ve been feeling a bit sorry for myself,

A smaller dose of quetiapine at bed time is meant to help with sleep. I also take magnesium near bed time.

I take a higher dose of quetiapine at night as that helps to keep me balanced and I take zopiclone 7.5mg to sleep. I take this long term and my gp is fine about it.

i think they are just relieved to have finally found a balance of meds that keep me on the right track.

i do also take an antidepressant in the morning along with B12 and vit D.

i don’t tell anyone, I work part time wfh and I enjoy some hobbies in my free time.
sleep is the biggest priority for my mental health I’ve proven this on several occasions where I’ve had episodes off the back of lack of sleep.

and be nice to yourself, I know it sounds daft but I tell myself to have a great day and I do things for myself including saying no to things I know are going to drain me, I know how to be selfish to take care of myself which was a massive turn around.

Thanks. I have found the same sleep is important. I definitely have a lot of sleep disturbance. The antihistamines are working for now but I will definitely try quetiapine next if I need to.
I too have learnt to prioritise myself, especially my rest. I do feel I’m being a bit selfish though. I’m not sure I’ve got the balance right but I’m so fearful of having a fill on episode and needing sectioning again that I rest more than I feel I need.

It is so helpful to hear how other people cope and manage to live good lives. I guess because no one talks about it - we don’t know that there are many of us out there. Of the people I’ve told, only one, my oldest and dearest friend copes with me talking about it and I try not to overload her as we meet infrequently due to distance.

Don't give up hope with the driving. Most people with bipolar can drive if stable on medication.
You might have to renew your license every year at first but it's definitely not an automatic driving ban