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Shall I just give up on meds? What to do? So confused (bipolar)

11 replies

AccessAllAreas · 05/02/2015 09:35

Sorry if this is long. Just need to get it down.

I've struggled with depression since having PND after the birth of my first child 10 years ago. At that time, I had a short stint of counselling and took prozac for 6 months. I felt a bit better, but can't say for sure it was the counselling OR meds. I think I just got over the complete shock of becoming a mum! Although never returned to being completely 'normal' again...

Three years ago I had a few months of feeling very odd - panicked, out of control, a bit manic - followed by a crushing 6 month episode of depression. I was referred to the psychiatric team and diagnosed as bipolar type 2. I had six months of therapy (weekly psychiatrist appointments and CBT), and reached a point of being stable, although still quite low. Over a 12 month prior, I also tried different meds under the care of the psychiatric team. First citalopram and valproate. I still felt quite depressed, then a new psych took me off valproate anyway, as its not usually the 'go to' mood stabiliser for women of child bearing age, and I was prescribed citalopram and quetiepine. Quetiapine was awful - was sleeping 16 hours a day, hallucinating, slurred speech etc - so I ended up on just escitalopram to treat the depression (much more prevalent for me than the hypomania), and was discharged back to my GP and told to contact the psych team if I felt I was going high again.

The escitalopram didn't have any effect on the depression at all, even at a higher dose, so I eventually decided to come off meds altogether (with support of my psych) and start (private) psychotherapy and self-management (sleep hygiene, diet, exercise etc). Unfortunately, I didn't really gel with my psych and after three months, stopped going to see her. Shortly afterwards (summer 2014) I had a massive mixed episode and was hospitalised (although not sectioned).

While in hospital, the consultant psych questioned my bipolar diagnosis and talked about borderline personalty disorder, although didn't give me any diagnosis on discharge. I was under the Home Treatment Team for 10 weeks, and saw a psych weekly. When I was discharged back to my GP, I was told that neither bipolar or personality disorder were appropriate diagnoses ad was essentially given no diagnosis, but told that I was suffering with depression and anxiety and would benefit from psychotherapy, rather than medication.

So..been having weekly private psychotherapy with a new therapist for the last three months and it is going well in so much as I like her, feel comfortable with her and am getting some insight into some of the very deep down, underlying issues I have from childhood. But...the depression and anxiety is still crippling. I haven't worked since my breakdown last summer (the very idea of work makes me feel panicked and ill) and although I am not at my lowest and haven't had any hypomanic episodes, every day is a struggle.

I called the home treatment team psych last week to ask whether I could self refer back to a psych and she said I would have to go through my GP again. So, saw my GP on Monday, who said he would happily refer me again but that he thought I should try a different anti depressant in the mean time. I was given venlafaxine. I took it for 48 hours and felt like I had been poisoned. It was worse than the quetiapine. I had severe nausea, chills, shakes, weak legs, vomiting and hallucinations. I know all anti-d's have side effects and that these may eventually calm down, but I honestly cannot go through even a few weeks of feeling like that. It will set me back so much it would almost not be worth the positive effect they might eventual have - at least thats how I feel.

I feel very stuck and quite frightened about the future. The psych referral may take up to 16 weeks, unless I am suicidal and seek crisis services (don't feel like that, just very bleak and empty and lethargic).

If you have read this far, thank you. I am so confused. No medication has worked for me, no diagnosis seems to fit, yet here I am still struggling quite badly with life. I feel at a loss as to how to help myself, really, but not sure where to turn to for help now.

OP posts:
Grokette · 05/02/2015 09:58

Right. First things first. Please do not give up.

Your story sounds a lot like mine. A thousand different diagnoses, shrinks and doctors and therapists can't agree, no-one knows what the hell is going on and meanwhile I spend 95% of the time feeling like crap and the other 5% reeling with anxiety.

i have tried all the drugs you've been on, with it sounds like very similar results. Have you tried lamotrigine? It is the only drug that has truly helped me, and I take it now in combination with a bit of citalopram, and I am not depressed anymore.

One thing I can definitely suggest is steer clear of anti-depressant mono therapy. It sounds like you've well and truly tried it, and it didn't work, no matter which ad it was. If you are indeed bipolar ad monotherapy is likely to do more harm than good. You need a mood stabiliser of some sort in there too.

To reiterate, don't give up. There are still a lot of options to try. It's a hard slog, I know, believe me.

AccessAllAreas · 05/02/2015 10:06

Thanks so much for your reply, Grokette.

It helps to know that there are other people with complex issues going on that don't just respond to the first (or second or third!) lot of meds prescribed!

Is mono therapy basically taking just an anti-d without a mood stabiliser? Sorry, not sure of the terminology.

I think I do need to see a psych to talk meds, as the GPs don't really seem to understand bipolar disorder (and I still think deep down that this may be the most accurate diagnosis for me). I actually read the notes that came with the venlafaxine after I'd taken it for two days and it says it is NOT suitable for treatment of bipolar. FGS!

OP posts:
Mitchy1nge · 05/02/2015 10:48

tried lithium?

Grokette · 05/02/2015 20:02

You're very welcome Access

I would absolutely recommend seeing a psychiatrist on an ongoing basis. It's just not practical to have GP monitored treatment for bipolar.

Yep, monotherapy just means the one drug. Taking venlafaxine its own is very unlikely to help, sorry. Been there, done that and all I got was horrific night sweats and even more anxiety! The thing with ADs and bipolar is if you take them on their own they might make you feel better for a short while, usually six weeks to two months, but then they can create a horrible state of hypomanic anxiety. The instinct is to keep upping the dose, but it likely won't help and the side effects will just keep getting worse.

What I would recommend is keeping a mood diary as much as you can, and watch really closely for patterns. Hormones will likely be playing a big part too, so tracking that can be helpful too. You need to identify firstly whether you are hypomanic, manic or depressed right now, then work backwards and work out whether you spend more time on average veering toward mania or staying depressed. I will say it's far more common in bipolar patients to have a usual state of depression with periods of manic, than the other way round.

Then the idea is to work with your psych to figure out which drug combination is most likely to work. If you are primarily depressed then valproate or quetiapine (or any other antipsychotic) is likely to make you feel more down. However if you are hypomanic or manic right now they might be necessary. Quetiapine is generally going to have worse side effects than valproate, which is a very good drug as long as you don't want to get pregnant!

If you are mostly depressed then lamotrigine is a better option. It's great for bipolar depression but not so helpful for mania. Taking it in combination with a modest dose of antidepressant is most likely to help with depression, but you need to work with your psych to watch out for a swing into mania, although it's not that likely on lamotrigine.

Right, I think that's enough crapping on for now. And I will give a small disclaimer: I am not a psychiatrist, I'm a psychologist, and I also haven't seen patients in over three years due to being a stay at home mum. But I also have bipolar, and have been doing the carousel of different treatments for over fifteen years. So I like to think I know a bit.

I hope my rambling helps. And Flowers for you because I know what a bitch this can be!

AccessAllAreas · 06/02/2015 15:52

Thanks for your reply again Grokette. I've never been offered lamotrigine, but hopefully I can discuss that with the psychiatrist when I get to see him/her.

I really appreciate your replies. Its really tricky where I am, as when my bipolar disorder diagnosis was questioned, it meant I could no longer be seen by the psychiatric team in my area on a long term basis. I was initially referred to the complex care team after my spell in hospital (who seem to deal with personality disorders and GAD/OCD etc) but when the BDP diagnosis was rejected (funnily enough, it was a psychologist who saw me weekly after my spell in hospital and said 'no WAY do you have a personality disorder) that I was discharged back to my GP.

I really need to get the psychiatric team to understand that I need more help, I guess.

Mitchy - never been offered lithium. When ever it came up in psychiatric appointments before (mentioned by me), all the psychs I have seen have always see,ed strongly against it and never really made it clear why. One psych did say say 'you don't need lithium to manage the brief hypomanic episodes you experience and it wont help with depression'. I have no idea if that is true.

OP posts:
reyn38 · 06/02/2015 17:22

Lithium is a good call, I was stable on lithium for a long time (currently back on quetiapine)

Grokette · 06/02/2015 20:48

I'd have to agree with the psych you saw, IF you are primarily depressed, lithium is not going to be the best mood stabiliser. It is amazing for mania, but not the first point of call for bipolar depression. And to be honest most psychiatrists are going to leave lithium as a plan B due to the side effects and monitoring involved, and introduce valproate or even more likely an antipsychotic for mania or hypomania. As far as antipsychotics go, asenapine is a great choice as it is for the most part weight-neutral and very sedating, unlike quetiapine which, although a great stabiliser, will perhaps turn you into a chocolate and chip-scoffing zombie!

I've had the 'you're not bipolar' thing too Access. It was just after my DTs were born. Apparently I was not bipolar and just had situational depression, which for some unknown reason did not respond to even massive doses of citalopram, venlafaxine or sertraline Hmm That is a huge problem with getting treatment for bipolar, of course because your mental state changes oftentimes no one can agree on what you have, and different doctors can think you have different illnesses depending on what sort of episode you're going through. And it does mess about your treatment, I know.

That's why keeping track of your moods as best you can is invaluable. It can be very exhausting at times, and it's simply not fair that 'normal' people don't have to bother with such faff, but if you can make a note of how you're feeling every day it will help immensely with identifying what's going on.

Exhausting as it is, you just need to persist and persist some more with getting treatment under a psychiatrist, not a GP. Your level of care will be so much better. Specialist treatment is ESSENTIAL for bipolar. Your GP can of course provide extra support, but frankly in your situation I would say a GP is completely useless for anymore more than issuing repeat prescriptions.

AccessAllAreas · 06/02/2015 20:58

Thats the thing. Bipolar does feel like the right diagnosis to me, all said and done. Psychotherapy has really drawn that out actually...I can se just how far back (beyond PND and my first 'official' bout of depression) the mood instability goes in my life.

I've been using moodscops every day for 14 months to track moods and what is quite scary (although makes sense) is that my serious depression (like, the really darkest) and hypomanic/mixed episodes ALWAYS kick off about 3-5 days before my period is due and last for at about 2 weeks ish after that, gradually lifting to lower level depression and anxiety (my pretty much constant state).

I have raised this with several psychiatrists, who have all said that I should raise this with my GP for a gynae/endocrinologist referral. My GP was very sceptical about this, offered me the pill (contraindicated for me as have had liver issues in the past) and no more is said about it. I have been taking high strength evening primrose oil for a few months and this has drastically reduced physical PMT symptoms, but the mental health aspect of OMT still persist for me...

OP posts:
AccessAllAreas · 06/02/2015 20:58

Excuse typos!

OP posts:
Grokette · 07/02/2015 00:35

Yep! I have PMDD. Took me ages to work it out as my periods were always irregular until the last year or so. I started on a monophasic pill just recently to try to combat it, but unfortunately that just made me a bit more depressed, plus it can lower the effectiveness of some mood stabilisers. Great huh?

I'm hoping the little bit of AD I'm on will stop my downward swing this month, as that is the first line treatment for PMDD. But who knows. My shrink just shook his head and basically said if I'm happy three weeks out of every four I should just not worry about the rest of the time. Unsurprisingly I'm in the process now of finding a new shrink. One with a uterus.

There is a very high comorbidity of PMDD with bipolar. It is definitely a valid point. Not sure what to do about it though!

Mitchy1nge · 07/02/2015 08:53

I thought lithium was the only serotonergic mood stabiliser (so does something about depression even if it is not always that effective alone against it) and that's why it's the only true mood stabiliser - antimanic and antidepressant in one. The others are antipsychotics or anticonvulsants that have some incidental, unintended antimanic properties.

people who have depression without episodes of elation take it to boost the action of their antidepressants so it's not just for elevated mood states

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