Bipolar disorder — long term coping

[erinaceus]

After struggling with my mental health for many years, I finally established a bipolar diagnosis which makes a lot of sense to me. My experiences are in some ways textbook. I’m working with a psychiatrist to try to get the treatment right.

I’m curious as to whether anybody has managed to successfully manage this or has any positive stories to tell. I don’t want to go into the gory details of my episodes but they were pretty bad and damaged my relationship and my career. I’m finding it difficult to be hopeful about the future on either front after so many years and episodes. It’s difficult to imagine being stable.

TIA

I think once you get the right meds sorted you should be ok. A family member has bipolar, and was really off the rails, but now their medication is sorted things are much more stable. As long as they keep taking their meds (they are sometimes inclined to say they don't need them any more - this is not the case!!). I was anti meds at first but then I saw the difference in them. They are like the old version of themselves again! I would also say get any psychological help you can, you need to talk about things that may trigger an episode, stress triggers etc. I haven't seen a lot of support for my family member on this front but I think it would be a great help to them if they had more talking help.

Also I think it takes a little while to get the medication style and dose right. Don't lose faith whilst you're sorting this out. It can take time but you will get there.

Thanks @magicmallow. Do you mind me asking, does your family member have things like a relationship and career? Or if not how, they manage without them? I was quite high functioning before all of this happened and lost my marriage (suspect this is not altogether a bad thing i.e. I don’t think married to him for a lifetime would have been happy, but still devastated) and my career took a massive hit.

@erinaceous, the family member is retired, but was undiagnosed for 10 years prior (when they didn't really work in the traditional sense) so career is not really a thing for them any more. They are still married thanks to a very patient spouse! I think they are a much happier couple now - mostly normal if they take their meds with occasional wobbles. It sounds as though you are going to be ok. Please don't put too much pressure on yourself at this stage - the focus should be on you being well, being kind to yourself, if a career and relationship form part of this and support you in that then great, but one step at a time! You sound focussed on supporting yourself so I am sure you will be successful x

@erinaceus

Thanks for answering, @magicmallow. Sounds as if your family member’s situation is very different to mine.

I'm going to reply to this tomorrow but I could have written your post before my diagnosis. When I first read up on bipolar after the diagnosis it was like reading other people describing my own thoughts.

I had no idea I could be happy, calm, consistent and peaceful until therapy and medication changed my life. And that's with epilepsy thrown in too!

Like I say will reply tomorrow as I feel for you so much, but just wanted to say in the meantime that I've been where you are and I promise that there are things that can truly set the wheels in motion for huge improvements.

To feel calm and centred after only ever feeling things so intensely (good and bad) is liberating.

Thanks @backseatcookers. It’s really the practicalities that I am worried about, moreso than how I will feel. After losing my marriage and career to behaviour that was erratic and alienating, I’m feeling despondent, lonely, hopeless. I’m also low right now (lockdown not helping). I know that the lows pass but they are rough to endure and I’m pretty tired of them.

Hi OP I was just about to start a thread on Bipolar disorders.

I don't have a diagnosis but have been reading and watching a few things about it and so much resonated.

I'm not sure I have it, if so it's extremely mild and very rapid. I've been on anti depressants for years and can't even remember why. I don't think I'm depressed just very 'delicate' somehow and very anxious.

I can't handle any form of stimulants and if I accidentally have a caff instead of decaff coffee or even too much decaff I feel so hopeless and desperately anxious all day.

I was diagnosed in 2012 it took about a year to find a medication that helped and probably another year or so to understand what response is needed for low and high moods.
I was doing a PhD at the time of my diagnosis and the stress and poor lifestyle that came with that meant that my mood wasn't particularly stable during this time. I did have a lot of support during the first 3 years following diagnosis from the early intervention team and the throughout my PhD from the University support services. Combined they helped me gain the skills and resources to manage my moods without too much detriment to my life. I had a 4 month period off sick during my first year post diagnosis after that I only need the odd day or week here and there to manage my mood.
Since finishing my PhD I have started a career in a regular 9-5 job and have a much better life work balance and I have had 1 episode of high mood that needed an increase in medication and a brief referral to the cmht.

I have a classical presentation of bipolar in that my moods are low in the autumn /winter and high in the spring/summer. I still have this pattern of moods but the low and high moods haven't been so pronounced that they have interfered with my ability to function both professionally and within my personal life and I haven't needed to have my medication adjusted.

Things that have helped me is understanding what medication I needed and when. We completely ruled out antidepressants which helped as they always send me high. I am now only on quetiapine and 300-400mg keeps me stable and 600mg helps with in an episode.

The boring stuff makes a difference too, regular 8-10h sleep (quetiapine helps this immensely!), a healthy balanced diet, exercise i was running 2-3 times a week before I fell pregnant, having some down time before bed having half hour for reading and reading on my commute (outside of covid) so that I start the day in a calm way. I have relaxing hobbies too like cross stitching and drawing.

I have good insight into my early symptoms and am constantly keeping an eye on what management my mood needs to stay stable. If I'm getting a bit high or low I know that I need to be a bit more keen on top of the things that help. I am staying stable now but it takes effort and awareness.

Thanks @SuperScientist for sharing your story. I completed my doctorate in 2013 and my symptoms didn’t develop until I was working, which had a devastating effect on my career. I was perceived at first as high performing, which I now see as being fuelled by the early hypomanic waves, they got worse over time. My husband left straight away during/after the first really bad one, insisting I that we sell our marital home when I was really really unstable. I think as well that MH service funding has been decimated even since the early 2010s; I didn’t have long-term support but crisis interventions during the lows during which they would prescribe antidepressants which would drive another round of mania; by the end I had spotted the pattern but it took me years to find a psychiatrist who was prepared to look at the previous several years rather that the imminent lows.

It’s good to know stability can be achieved but hard to mourn everything that I lost or see how things might work out. Even when I can spot my moods going I felt powerless to do anything about it without a Dr who was willing to see it through for the longer term.

Congratulations on your pregnancy! I also like drawing.

Thank you, it will be the next big test of my stability!

I have a supportive partner, we have been together since we were 18 but my first proper episode of high mood nearly broke us up. It took probably 2 years to repair the damage I caused. It was around this time that my mental health started to suffer again and I knew that I had to commit properly to treatment to keep our relationship. I had a bad habit of getting unwell, engaging in help and treatment then once things leveled out disengaging and stopping my medication.

I have been fortunate, I have had more good mental health teams than bad and the ones that have been good have been great (nothing in between!). It is such a postcode lottery.

One thing I have found the most helpful is to debrief after an episode. It was something the early intervention team did well and I was able to continue afterwards with student support. After an episode we would go through what had happened, what helped, what didn't, what were the warning signs, what was the trigger, what was the escalation point etc. The crisis management approach that is all most people misses this important step in my opinion.

Thanks for your message. Yes I understand that pregnancy can cause episodes, you will need to be vigilant at least.

I never managed to get that continuity of care; I also tend to disengage from treatment when I feel even halfway to better and my treatment was very patchy. I’m glad you have a supportive partner, it’s devastating for me to have lost that and taking on someone with bipolar is such a big thing to ask of anyone. I for sure don’t plan to look for a new partner until I have confidence in my own stability (if that ever happens). I’m glad to hear of your success though.

It does make relationships challenging. I'm such a different person when my mood is high and not in a good way and low moods make everything a challenge. I've lost a lot of friendships over the years. It is hard. I hope you have people around that are understanding.

How long have you been diagnosed? It takes time to learn the ins and outs of your bipolar, there are patterns and commonality from one person to another but it is also quite individual.

The lack of joined up care is difficult, how is the relationship with your gp? I have been lucky to have two good gps, the first worked as a junior doctor under one of the psychiatrists I saw before doing her gp training. When I had to move a searched the specialities of all the gps in my catchment area and found one with a lovely doctor with a mental health as her speciality. It makes a difference, she is more on the ball both in terms of making appropriate referrals and ensuring I get the right annual blood tests to check for medication side effects.

Do you use any mood monitoring apps/websites? I have found them really useful in the past - I favour ones that don't rely on you knowing where you are on the scale of 1-10 or whether you are mildly/moderately/severely high or low. I use mood scope it gives you a score out of 100 based on how you respond to 20 emotions. The research in me like a number, it gives you a pep talk too but that is only geared to low mood so it tells me I'm doing great when really I'm high.

It takes time to find your way through the tangled web of bipolar moods but you can get there.

Thanks for your message @superscientist. I got the diagnosis a couple of months ago, but I feel I’ve known for years and raised it several times with psychiatrists I came into contact with, in a somewhat textbook fashion I tended to present for help during the lows which are awful and not disengage from treatment during the highs which are the more destructive bit, it took me some time to find a psychiatrist who would listen to my description of the past several years. I’ve got a good relationship with my GP and the psychiatrist as well.

Curiously in terms of relationships I’ve not lost friendships and have lots of supportive friends, but the marriage breaking down was devastating.

Thanks for the suggestion of mood scope, I’ve tried a few apps and not found one that suited me yet. I feel quite despondent like I’ll never get a handle on this.

I understand the feelings of despondence and like you will never get a handle on it.

Get a diagnosis is tricky especially when you have issues for a prolonged period of time. It feels like once it has a name it should have a quick fix and sadly it doesn't.
There are plus points though, you know what it is now. You aren't having isolated mood episodes they are part of something bigger. It needs a more longer term treatment option, it is good that you have good professional support now. Hopefully they will give you the continuity that helps.

It is quite a slow moving illness with episodes last weeks and months it can feel all consuming it really can. In the early days of my diagnosis I tried to focus on handling each period of poor mood better than the last time. It was a long journey, the first 18 months I fell into episode after episode with a month or so of stability in between. We then started to find things that helped and the periods of stability lengthened, the episodes were easy to control. It takes time theres no escaping that unfortunately.

Is therapy an option for you? Dealing with undiagnosed and under treated mental health conditions leaves baggage. It sounds like the breakdown of your marriage was tough and something you might still be finding difficult. I wonder if talking to someone about it would be helpful.

That’s a good suggestion to concentrate on handling each period of poor mood better than the previous one, I hadn’t thought of tackling it that way so thank you for the suggestion. Yes, previously there was such a focus on handle imminent crisis and discharge to GP and my GP herself was out of her depth with it I think. Then once I was feeling OK again it was hard to bother pursuing a diagnosis.

Yes, I just restarted with my therapist, I’ve had lots of therapy and I think that the continuity will help.