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).

After my last experience, I'd say disclose early and at least that way you'll find out if your line manager is any good from the start. Does your mental health team have any employment support workers who can help you with the disclosure and identifying what would support you in your role? I'm going back to mine this week to work out how I avoid shit employers.

That’s super helpful thank you! She really was a piece of work!

I disclose early but not immediately. In my last job I disclosed it in my first 1-2-1 which was I think on week 3.

I want to get a measure of the person and have an idea of how to phrase it and how to approach the conversation.

I have never informed them of the medication I am on and would consider them asking a step too far.

I explain that I have bipolar which means I can experience episodes of high or low mood. To help me manage my moods I take medication which can make me drowsy. Nowadays it is mostly be ok but there are the odd mornings where it hits me more than others. Moods generally change slowly with bipolar, and this is true for me, and there can be adjustments that can be put in place to mitigate the impact of an episode before it gets too bad.

I had a hypomanic episode about 15m into the job and managed ok but had a severe episode after i had my daughter and went from mat leave to sick leave. I had 3 months of full-partial leave. The company policy was paid leave for 4 weeks, followed by unpaid leave for 4 weeks but my board level boss spoke to the board and they agreed to pay me until for as long as I needed. I had 4 weeks completely off then had 2 months with a slow phased return with a fit note. I then put in a Flexible working request, moved to 4 days a week from 5 and only 1 days a week in the office. Everyone else needed to do 2-3 days a week. I didn't work Wednesdays which was a nuisance really as they had planning meetings on a Wednesday which got moved to Thursday following a revised meeting structure.

I worked one Wednesday due to an external meeting and by 10 on the Thursday I had to call in sick and I was unable to work. After this my boss put in place that if I ever needed to work a Wednesday I automatically got the Thursday off rather than having to book a TOIL day. Where possible they avoid booking external things on a Wednesday.

How's everyone feeling today?

I had an interesting day. I’ve been getting more unwell (depressed) it’s been a year since I first raised it with CMHT. Only time I have had any clinical contact in that time is when someone else has raised concerns on my behalf. Even tried going via pals and just got a cold officious reply saying I was only entitled to an annual lithium review and no care coordinator etc etc.

Anyway my DH got worried enough to call them today and got a really lovely nurse who listened to his list of issues with their service, clinician concern (his in a medical field himself) and he cried too. So upshot is I have new prescription to pick up tomorrow and I’m meeting my care coordinator, who’s going to be this lovely nurse my DH spoke to. I’ve just not been able to stop crying. I really hope this is a sustainable shift towards shifting this depression which they’ve categorised as severe now as I lhave had increasingly dark thoughts.

@TopsyTurvyDays , sorry to hear you're feeling like this, but glad you've finally got some help coming. I hope the new prescription is helpful, as well as the nurse.

Can I ask what a manic or hypomanic episode is? I mean like what do you end up doing? Thinking? What happens? Sorry if that’s a bit much to ask as I am curious as I think my friend has bipolar.

@Blackwidowsbite I think it is a bit much to ask. We will all be different anyway so it won't help your friend. If you genuinely have concerns for your friend I would recommend the BipolarUK charity website for further information and support. If you believe they are experiencing a manic episode now, search for your local mental health crisis team as the phone numbers differ by area/mental health trust.

Does anyone get nightmares taking lamotrigine at night? The CMHT have upped mine and told me take half at night so I’d sleep through any side effects (I get double vision at higher doses) but I’ve had awful nightmares about social services taking my DC away or about me being arrested for child neglect - neither of which have any possibility of happening.

It carries on during the day too. Today I have a day off work and promised myself a day in pjs crocheting on the sofa but I was up at 7 getting dressed and tidying ready for the social worker and police to arrive.

I feel like I’m going mad.

Oh no. That sounds so tough. I get nightmares that stay with me when awake when my bipolar is heading into an episode. It’s an awful, awful feeling. Have you got someone you can call to discuss?

Yes, terrible nightmares, the worst and most vivid ever. I had to stop taking it, it was like a horror movie every night.

I might try and call the mental health team - I’m worried I’m going to get ill again.

I definitely would. It’s such a horrible illness never knowing if this symptom is going to be the one the tips you head first into an episode.

I’m sitting waiting for my appointment with new care coordinator. My “medical PTSD” (I know not an official term but what A&E called it) has fully kicked in. Trying to remind myself that saying I’m fine, everything’s fine, totally fine isn’t going to help me.

@TopsyTurvyDays I hope your appointment goes well.

I was able to speak to my key worker (which is a miracle as she normally takes a couple of days to call me back). She asked if I’ve ever had psychotic depression in the past so that really reassured me - not. She’s going to speak to the consultant and come back to me. In the meantime she suggested a walk followed by a bath.

I think a walk followed by a bath is a really good idea and some of your favourite food too if possible.

it’s good they’re taking it seriously and acting promptly.let us know when you hear back. Take care.

I'm not on lamotrigine but when I started on venlafaxine my psychiatrist said she would want to know if I started getting very vivid dreams on it as that would be a sign that it is disrupting my sleep and I wouldn't be getting the restful sleep I'd need to reduce risks of my mood getting worse

The walk helped but as soon as I was close to home I kept thinking that there would be a note through the door from a social worker.

I don’t know why I’m thinking this - I work in safeguarding and know that my house is nowhere near the threshold, it’s a bit messy and the bathroom needs another scrub but it’s honestly not that bad and my DC are healthy and looked after.

My key worker called back and they want me to take the lamotrigine at 5pm instead of at bedtime to see if that helps. She’s going to call me tomorrow but said when I see the psychiatrist next week he might add another antipsychotic to my meds (already on lithium and Aripiprazole).

Thank you for listening to me ramble.

Well done. You’re doing all the right things. It’s really hard when intrusive thoughts hit. I hope the taking it earlier helps tonight. Great she’s going to call back tomorrow. Being able to ask for help gets so much harder when feeling actively unwell too.

I’m starting quetiapine tonight. I’m already on lithium and take melatonin. Only a small dose and then increase every two days. I’ve been warned it may make me sleepy but since having mania 3 years ago I haven’t found anything they’ve tried has made me sleepy (although melatonin has helped me fall asleep) so it would not be a totally unwell side effect so long as I can get up and am fit to drive in the morning.

I think once quetiapine is up to 50mg you should sleep. The first 50mg acts like an old school antihistamine and that's why it causes drowsiness. Very handy as my insect bites no longer swell up like they used to.

Thanks. I’ve looked and tonight’s dose (1st one) is 50mg. So I guess I’ll find out! By end of the week I’ll be up to 300mg.

Ah, you'll join me up there then. I do find it gives me a stuffy nose but don't know if that's a common thing or not.

I’m really hoping it works for me. Reduced insect bite swelling sounds a rare good side effect!

I hope the quetiapine helps. The lower doses are more sedation than the higher doses so you might feel a bit sedated for the first few days.

If it is the standard release version I get sleepy about 30 minutes after taking. I took it at bedtime and it meant that i could go into a natural sleep within 20 minutes or so after going to bed.

The standard release version, if taken properly, takes about 5-6h to hit your system. You can take it early evening but I found that impractical - for it to be extended release it needs to be taken on an empty stomach 2h after food or 1h before. I used to take it about an hour before bed and it helped me go into a natural sleep about 15-20 minutes after getting into bed. If I forget a dose I wake up at 3-4 am. At the moment I'm taking when I go up to bed and can be awake for 2h after taking it depending on how long it takes to feed the 1 yo and get him to bed. I take my mirtazapine once he's asleep and that makes me dopey within half an hour. The quetiapine is more like curling up in front of a fire with a cup of Horlicks and going into a warm fuzzy sleep.

I was on it twice a day for a while about 10 years ago and having to find ways to power through the first half hour if sleepiness and work having taken it at 8 am removed the sedation for me.

The antihistamines quality is useful! My hayfever and cat allergy has been much better. I also have a histamine intolerance and since being on quetiapine I haven't had to worry as much about food which has been freeing!

Thanks for the info. It’s the standard type as apparently the modified release is hard to get hold of at moment.

Wow did I get some sleep last night! It was amazing!! When I used it before (at 25mg I think) it made no difference but the 50mg (plus the melatonin) defintely had an impact. I remember getting into bed and then I just went to sleep. Woke up at 7am when my husband got up and then woke up when a text landed at 9.30am. Slept like I used to as a teenager. I haven’t had a night’s uninterrupted sleep for years and years. I know it’s unlikely to stay as sedating but even as a once off it’s been a joy.