Living with Bipolar? Come join to chat ups, downs, and everything in between

[UppityDownitty]

Hi. I rarely see any threads on the MH board here from those of use with Bipolar diagnoses. I find it tends to be largely threads on anxiety, situational depression & stress, which I have also had battles with, but which don’t really cover the particular challenges and experiences unique to bipolar disorder.

I wondered if any fellow bipolar-bears would like to share a space here with me to chat about stuff, share wisdom & support, or to just waffle on generally (like I’m apt to do sometimes!).

Maybe if anyone’s interested in joining the thread we could introduce ourselves a bit? I’m happy to start the ball rolling…

I’m a single mum of 2 youngish ones. Lots of recent traumas/major life stresses over past 3yrs. Ended up having manic eps and my previous diagnosis (for 20yrs) was changed to bipolar affective disorder (type 1). Ive resisted any mood stabilisers until now (only lamotrigine, which hasn’t been effective) and was relying on PRN diaz to try to ward off hypomanic eps. However, mood has been all over place lately & seems to be ultra-rapid-cycling now so this week I’ve accepted I need lithium. Just been for blood tests & hoping to start shortly. Nervous about it though, and still question whether I do really have a mood disorder or whether I’m just a bit (lot?) traumatised by an awful few years/set of circumstances.

Anyone else want to join me?

I'm here, but only just been diagnosed kind of. I'm starting Lamotrigine at 25mg and also take Risperidone 6mg.

Hi everyone, just checking in

Just a wee update. Basically I'd got a bit lax in taking my lithium because I also have IBS. During a flare, when it's really bad, I can barely get off the toilet, let alone remember to take my meds. Also getting a sharp pain in my right side everyday which is really sore. Takes my breath away, but was told it was my IBS. The past few months have been particularly rough

Got a call from my gp who was very angry asking me why I wasn't taken my lithium (she knew because I wasn't putting my prescription in) explained the situation, which apparently wasn't a good enough reason and "threatened" me with an admission and a talk with my psychiatrist. Which I'm pretty sure they can't do? But anyway. The phone call left me quite upset, and I cried a bit

This was 2 months ago. Had to have another blood test a couple of days ago to check I was definitely taking it, which I am now. But I can't help feeling the whole thing made me feel a bit shit and that I'm not in as much of control of my life and what I put into my body as I thought I was. Sorry, I'm probably babbling, but anyway, hope you're all ok!

Hi @littlemissminor how are you getting on on lithium?

This sounds very stressful. There’s no way they can section you for not taking meds!! I’m glad that you are back into the routine of lithium. Hopefully you’ll be able to continue during bouts of IBS in the future.

Hey @Georgia324

Thanks for asking! I'm ok, don't feel any different to be honest - just done my first dose increase, so not even at proper levels yet! X

@Georgia324 exactly! I knew she was just trying to throw her weight around with empty threats. It pissed me off. Especially when she was like "oh I'm going to tell your psychiatrist about this!" Like I'm back at bloody school or something. Just said, tell him. I see him more than you for a kick off, and can guarantee after I've explained myself, he'd be more sympathetic . She was horrible. Came off the phone call in tears and just went straight to bed. GP's should know surely if you're dealing with patients that have a mental illness, to have a bit more of a bedside manner. But I'm guessing that's as rare as hens teeth

I've started taking it again. Had my blood test on Friday just gone to check my levels and I was explaining the whole situation to the nurse then and she was lovely. So I don't know if the GP just had a chip on her shoulder/having a bad day who knows

Sorry to hear @BippityBoppity87 , there’s no justification for the GP speaking to you like that. What if it had put you off booking further appointments etc? It really worries me to hear that so many doctors and other health care professionals are so quick to lose patience and be judgemental of people with mental illness. I have had first hand experience of it too. Hope you’re ok and that the lithium starts to help and doesn’t affect your IBS.

Ah it’s early days. It’s supposed to take a couple of months to work so keep us posted. What is your mood score today? Do you ever attend the bipolar uk support groups? I’ve found them to be hugely beneficial.

Hi I'm bipolar 1 was diagnosed at the beginning of this year after a lengthy manic episode.

@UppityDownitty @DonnieDark @BippityBoppity87 I am so glad I found this thread. My DH has bipolar and we are going through a really rough patch. I have found out he has cheated on me for the second time because he hasn't been taking his meds for the past few months. I know that hyper sexuality is a symptom but it's so hard when it's happening to not just believe he's being a rubbish husband and that there is a medical aspect to it too.

At least knowing other people have made risky sexual decisions makes me think he's not just being unfaithful for the sake of it.

Hi everyone, great reading this thread and I hope you are all doing ok.

I’ve been referred to a crisis team as I have extreme depression/anxiety and thoughts of suicide. I’ve felt like this for so long now been on fluxotine since 18 now 38) that I honestly think I am bipolar. I’ve mentioned it a few times over the years to various GPS who shrugged it off, luckily a new doctor came to the practice and it taking me seriously.

i have my first appointment on Friday with the crisis team, does anyone know what I should expect??

Sorry to hear you’re struggling so much. Can I ask what makes you think you may have bipolar disorder rather than major depressive disorder or similar?
Are you usually under the CMHT? My only experience of the crisis team is via referral from my usual CMHT team, when the situation has gone to an acute level that can’t be managed by secondary care during working hours. I was at grave risk at the time so the crisis time found me a bed and encouraged me to go in voluntarily or I would’ve been sectioned. They then visited me after my discharge home, ensuring I was taking my meds and was at a reduced risk, then my care was handed back to my CMHT care coordinator.

I hope you find their involvement helpful in this short-term crisis but I also hope you can access longer-term support via CMHT or other services.

Hi everyone, is this thread still live? I’m on lithium and lamotrigine but I’m tired of feeling flat… so I wondered if anyone had any advice eg reducing dose or dropping a med. I have BP2 and have been very unwell with it, more with depressions than hypomania though the latter can be very harmful too. Better the devil you know? Thanks!

Hi @Georgia324 I don’t have any advice as only just started meds myself. Hope you find a solution. Thanks for bringing the thread to the forefront though, didn’t realise there was one. Hopefully the rest of them will join us soon.

It’s been great reading other people’s experiences, thanks.

Have you always been on both of these at the same time or did you start off with one and add the other? I have been on both independently - Lamotrigine worked better for me in terms of feeling less flat/withdrawn. I am going back on it now while coming off lithium.

Hi @Rose5678 that’s really interesting. I’ve been on lamotrigine without lithium, but always with an AD. Have you considered taking both together? Lamotrigine wasn’t as effective for me, but I think I “felt more” on it. Apparently the two work well together because lamotrigine lifts lithium a little. Out of interest how are you titrating down on lithium and up on lamotrigine? Has lithium worked to prevent episodes?

Hi @Pibolar best of luck on your journey and keep us posted.

Hi @Georgia324, sadly the lithium hasn’t prevented episodes at all, whereas Lamotrigine did. I came off it because it affected my memory and word recall but I prefer that to episodes! So now I’m titrating up Lamotrigine and decreasing lithium. The lithium is decreased by 200mg every two weeks. The Lamotrigine starts at 25mg for 2 weeks, then 50mg for two weeks, then up by 50mg every 2 weeks till I get to 200mg.

The psychiatrist I spoke to said being on both Lamotrigine and lithium at the same time wasn’t ‘a thing’ unless you were on the maximum dose of one, though I know others who are on both, not at maximum doses - just shows the different options depending on what doctor you get!

What AD were you on with Lamotrigine - I also struggle with PMS (maybe PMDD?) but saw the treatment was sertraline or the pill, both of which I thought I might not be able to have with lamotrigine.

You can take sertraline or the pill alongside lamotrigine no issue - as long as the SSRI doesn’t send you hypomanic. What was your lithium level before reducing? Have you felt worse reducing? Were you on 800? Sorry that it didn’t work for you. I wonder if you would have stayed on it if it had. I hate having to make those balancing decisions!

Sorry I should have tagged you! @Rose5678 !

@Georgia324 my lithium level was 0.6 on 800mg. The psychiatrist did say I could increase it but I didn’t feel like it was helping - I was up and down all the time. If it was helping I would have stayed on it I think. I’ve only reduced 200mg so far, feel a bit shaky and headache-y.

Agree about making the balancing decisions! Especially as everything takes so long - the appointments, prescriptions, then the actual tapering / titrating. I feel like my life is on hold for months at a time.

what do you think you’ll do about your meds?

Hi @Rose5678 , have you measured your levels since going down to 600mg? It doesn’t sound like lithium was the right med for you - if you get the side effects but no benefits - unless you would consider taking two together ie with lamotrigine or quetiapine. Your psych is “wrong” in that bipolar experts like Prof Allan Young recommend lithium lam as a combo and it’s been proven in studies to be more effective than monotherapy. Fyi! Google the lamlit study.

Omg agree - everything takes sooo long. I used to measure time taken to get over episodes or to readjust to new meds in how many haircuts / highlights I had in that time, or how many, ummm cycles I’ve had!! Here we are getting the tampax out again…

I think I’m going to try reducing lithium to 700 or 600, and see how I feel.

Have you had a baby while taking either med? That’s also weighing on my mind X

@Rose5678 no not measured levels but assume it’ll be around 0.4 based on what it was when going on lithium. I’ve not had side effects, it just hasn’t stopped the episodes or made me feel stable so I guess I don’t see the point of staying on it! I was stable on just Lamotrigine for a few years so going to try and recreate that… this time I’ll just have to adjust to the side effects, I would prefer them to having episodes.

it wouldn’t surprise me if my psychiatrist was wrong but tbf they didn’t say you couldn’t take them together full stop - just that you would first need to be on the maximum dose of one before seeing if adding the other would benefit.

Reducing your lithium a bit but so you’re still at 0.4 or above sounds like it might be a good option. It could still work for keeping you stable but the flat feeling might lessen 🤞

I didn’t get diagnosed till after I had children so not been on either of these while pregnant, not sure of which one would be best in that situation. I do know it took ages to come off Lamotrigine as the side effects were so bad, that might be relevant if you want to come off meds to try and get pregnant X

Hi @Rose5678 Thanks so much! What made you switch from lamotrigine to lithium in the first place? I’d be happy just being on lamotrigine, I think, but I’m going to ask for sign off for going down to 700 then 600 on lithium first to see if that helps. I also found it v hard to reduce off lamotrigine. It took months and months! I didn’t take it for TTC and first trimester but I went back onto it at 12 weeks. If we have another I reckon I’d stay on it for the duration - but only on one med. good luck with getting your blood levels back xx

Hi I'm bipolar 1 so have more manic episodes. I'm currently on quetiapine and lamotigrine. I can't take any ads as it makes me slip into mania.

@Georgia324 I switched due to side effects, but switching back as I’ll take the side effects over the episodes!