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Has anyone ever changed from lithium to a different mood stabiliser?

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Spring_Is_Here

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I’ve been on lithium for 20 years with barely any issues until the last 3 years where I’ve been all over the place with what I call anxiety. This anxiety is not caused by anything i.e it’s not caused by my job or difficult relationships, it is simply ‘there’. I am on quetiapine for the anxiety but I never feel right.

A friend of mine suggested maybe the lithium isn’t working as well as it used to. When I have doctors appointments they always tell me they won’t take me off lithium because it’s stabilising me really well and that they don’t want to mess with it. I have left a message with the surgery but am wondering if anyone had had experiences of lithium stop working and move onto another mood stabiliser or any knowledge about combining lithium with other mood stabilisers or drugs in general.

I have looked into getting a private appointment with a specialist psychiatrist for bipolar - £395. I think it’s disgusting. Like robbing people who need to be helped.
 
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celticlass

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Oh I don't know. 20 years of stability on Lithium sounds good going. Could you not just negotiate something else for anxiety? I was put onto Pregablin for it a year ago and has helped a lot. Good luck.
 
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Spring_Is_Here

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Interesting, thanks for your reply. Last year I was put on pregabalin but had a really bad time on it. I’m glad it works well for you. I just wonder whether my ‘anxiety’ is more of a bipolar issue because maybe my lithium isn’t working as well? This is guess we’ll. I’m currently on quetiapine as well as lithium but I never feel right.
 
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TheHeartHasAVoice

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I’ve been on lithium for 20 years with barely any issues until the last 3 years where I’ve been all over the place with what I call anxiety. This anxiety is not caused by anything i.e it’s not caused by my job or difficult relationships, it is simply ‘there’. I am on quetiapine for the anxiety but I never feel right.

A friend of mine suggested maybe the lithium isn’t working as well as it used to. When I have doctors appointments they always tell me they won’t take me off lithium because it’s stabilising me really well and that they don’t want to mess with it. I have left a message with the surgery but am wondering if anyone had had experiences of lithium stop working and move onto another mood stabiliser or any knowledge about combining lithium with other mood stabilisers or drugs in general.

I have looked into getting a private appointment with a specialist psychiatrist for bipolar - £395. I think it’s disgusting. Like robbing people who need to be helped.
Hi there, Welcome to the forum.

Are you sure this new phase of anxiety isn't from another source? The reason I say that is because if it has kept you stable for so many years I can't think why the anxiety would be related to your consistent lithium dose.

Just remember people without bipolar suffer from anxiety too. Sometimes it has a cause.
 
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Spring_Is_Here

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@TheHeartHasAVoice yes, I’ quite confused and wonder how I can get to the bottom of the anxiety. To give you an example of a typical day, today I wake up with low level anxiety (this is regular), later in the morning I see my mum and after our chat, I feel like my brother is taking the mickey with my mum so I send him a text, nothing too argumentative but it’s firm and he replied back in good humour - I was shaking the whole time I was sending the text, at one point I tried holding my right hand with my left hand so I could type...My brother and I get on pretty well, this shaking is a total over reaction, I know this. I am now on the sofa feeling sick, don’t really know why. I’ve spent whole days at work feeling sick like this and eating ginger to keep the sick feelings at bay, it’s proper peculiar...

I have had my share of difficult things happen in my life, like most people. People would probably say the biggest is my dads suicide, he also had bipolar but never took his meds. But his suicide happened when I was a teenager, so over 30 years ago, and I’ve been fine until the last few years. I loved my dad and what happened was awful and tragic but I don’t think about it/him every day and when he naturally comes to mind there are lots of positive experiences like singing together and going sailing together.
 
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Spring_Is_Here

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What I’m saying is I really don’t think the anxiety is because of my dad, or relationship breakups or anything else 🤔
 
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timing

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I had a bout of crippling anxiety for 6 months followed by a major depressive episode. I think what completely zapped both was a combination of lithium, quetiapine, and lamotrigine. Now, I am two 1/2 years anxiety free.
 
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Spring_Is_Here

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@timing very interesting, are you still on all three? Whilst I realise I cannot mould myself on someone else, I am definitely going to bring up lactimel/lamotrigine on Wednesday. The problem is, I come across as high functioning but I will make it clear that I have not been well for 3 years. Making med changes is proper scary but how will I know unless I try? 😊
 
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timing

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I am still on all three. They did have to lower the lithium very early on. Went to a low dose of 300mg when I developed signs of tardive dyskinesia (body tremors) on the higher dose of lithium. I have stayed with the same dosages of everything else for this whole time.

I have come to realize that with bipolar, med changes are a way of life.
 
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Spring_Is_Here

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@timing this is really interesting to me. You see whilst I have kept my job the last three years and been on holidays (although I’ve had to pace myself whilst on holidays) life has been like tredding water, it’s hard work being at work, I can’t progress either at work or with another job, I’ve had to stop playing in bands, even for fun because I can’t commit, the longest I’ve felt ‘well’ is a few days. Honestly I have so many coping mechanisms to get me through a day and most days are like this. I’m currently on 800mg lithium and 125mg quetiapine. The last few years if I go too high with the quetiapine dose the brain fog I stop being able to understand what is going on around me.

I think 3 years of this is too long. I will push for a med change on Wednesday.
 
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timing

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Over the years I have sometimes been successful at using the tools to help with my disorder. At one time I was being advised that I had to get out the tool box and use everything in it. I remarked to the therapist that I could'nt even find the toolbox. From that point I was in an intensive community network to get help with everything from cooking to taking a walk. I did get out to swimming once a week as well as out of the house activities. This lasted about 9 months in 2011.
I had quit work in 2011 before all this , excuse me, shit. This was not caused as much by anxiety but, anxiety would often rear it's ugly head. At work I was usually creating any project I could think of to get out of my head. Some were successful and some were off the wall. It took one and a half years to get the meds right. I can't even count how many meds were tried.
Twenty years is a really long time and three years of what you are experiencing as well. Your stability obviously has changed.
I was not hospitalized again until 2015 and then we were at the same point of quitting all the meds and starting again from square one. This has happened so many times in 14 years, for me, it is maddening.
New symptoms need addressing before they turn into a nightmare. Journaling these symptoms is excellent. Most docs can then better diagnose and address the needs of the patient. Other docs don't take the time to investigate the causes.
Your right every person has differences in meds needed but one has to look for every option when it is necessary and improve quality of life.
 
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Spring_Is_Here

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It’s really upsetting and yet reassuring to hear you speak. I watched lord of the rings - the fellowship of the ring yesterday and this meds thing is this scary quest, you know how it is, what if it gets worse before it gets better, but you are 100% right and what I’m experiencing now, getting through each day, is not where I was for 20 years, I was really living.

Two years ago, the doctor suggested I cone off quetiapine and go onto pregabalin.I’m sure that would have worked well for some people but for me it was hellish, I started seeing all colours really brightly. I went for a walk at lunch time to get out of the office and all the leaves were super bright green. I managed to work like it for another week, I really don’t know how but I’ve always tried to minimise time off sick. Anyway, after another week, I called the doctor and told him I had to come off pregabalin and he told me to try and stay on it but I was too scared I would only feel worse.

When you’re well, you feel so lucky, I definitely appreciate lithium and being that well for so long.

As you said about quitting work, I haven’t had to do this but there are times when I think I can’t do another day of pretending I’m fine and yet I have many coping strategies to just keep me hanging on in there. So making a med change, feels like I could potentially be really putting myself out there. But the question is, am I living right now? The answer is yes, but not to the level I’ve done so in the past.

I do actually journal every day. I keep it fairly short and factual and note my meds as the quetiapine level changes, this time last year I was dating someone and my journal is a complete mess, I’m spending as much time on the sofa or in bed as possible trying to keep myself calm. The poor guy didn’t know what to do.

Yep, the toolbox analogy that people speak of, I get it, I like it. I think my tool box has some useful tools in it (luckily I can still see it) but I think there might be some better ones that I can be adding to my collection 👍
 
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timing

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What is hard about being bipolar for me is the various symptoms that lead to depression which is where I end up in the hospital.
The pattern varies:
anxiety---depression
mania---depression
flat out depression
or any combination of at least these 3
When I was raising my kids, symptoms were simmering on a constant basis. There was no time to dwell on anything. Ghostly voices from the past crept in. Snap out of it! Quit feeling sorry for yourself! What do you have to be depressed about?
Often, when I felt like I couldn't get out of bed, I would coral at least 2 of the 3 kids and have them climb in with me. I would tell them a story or 2 and then ask them to tell me stories or play a number game. I rested.
As I got older, I seemed to keep blocking out symptoms, unable to see the signs of trouble. For me bipolar has gotten harder with episodes harder to get out of. However challenged I have been, I have loved deeply and my kids are my soul. There is nothing better than this.
Keep up the good fight!
 
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TheHeartHasAVoice

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What I’m saying is I really don’t think the anxiety is because of my dad, or relationship breakups or anything else 🤔
As you get older your body can't tolerate as much as it used to. Especially if you have a lot of responsibilities. You can ask for pills if you want but I guess my point is to highlight that many Disorders require self maintenance beyond pills. Try some more self care. It looks like your stress levels may be high that's why you're shaky.

Go on a journey about your health and ask such questions like how is my sleep quality, my diet, do I need a new hobby etc.

If your anxiety is high try letting go of stuff. Look deeper.
 
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ohmanohboy

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I'm currently on Lithium Carbonate, and no, it is not working for me. However, I was recently (months ago) put on Latuda after my doctor recommended I be gene tested. I highly recommend gene testing to determine medication. I don't know what the price range is if it's not covered by insurance, etc., but even if it's super expensive (and it might be), I highly recommend prioritizing it financially, saving, and then being able to somehow afford it at some point. It's been a game changer. The Latuda was on my "good" list (I don't know a lot of the science-y bits because I myself am working my way out of an intense brain fog that feels like it's been half my life)--it yields a high compatibility with low side effects (I currently experience no side effects from it, something that's crazy and beautiful given my experience of intense side effects often becoming psychosomatic and more intense with time). Lithium does not, from my understanding, have a genetic marker, which is why I'm still on it (having recently moved from 1200mg to 600mg when I, after a year of nausea, couldn't deal with that dose anymore, and then being put from 600mg onto 600mg extended relief 2 weeks ago). I puke up my lithium on a regular basis, which is why I downed my own dose to just the evening dose, and now am about to, in another two weeks, tell my psychiatrist that it's not working at all, and I probably need a new med to help out the Latuda, as well as a non-benzo anti-anxiety (probably, though that's been a huge amount better with the Latuda as well).

The rough outline of my experience is that I've been on mood stabilizers and anti-anxiety meds for the past 6years (since my diagnosis). My first mood stabilizer was Seroquel, and I've been on lamictal, and neither of those did anything to regularly keep me from mental harm's way. Of course, I was on Abilify for a few years, and it did an ok job (besides the Latuda, it's been the most helpful, longterm med I've been on) but the Abilify very abruptly stopped working altogether around September of '19 and I began having intense, ongoing mixed episodes, to the point where I couldn't work at all. (Not even an entry level Joe Shmoe job--no, no.)

Honestly, unless you're getting med advice from someone you're related to and share a gene pool with, I don't know how helpful a forum for meds you don't have experience with is going to be. That said, my mother's also bipolar and recommended the Abilify, and I shouted that at a shrink during an ongoing intense manic episode, and it worked ok for a few years. All I can really tell you other than my personal experience with my body and mind is that the genetic testing takes away the terror of it all being a complete shot in the dark. 3 years is too long, and you do deserve change, and help. I'm sorry it's so expensive to seek that professional specialist; it's bloody. When I lived in NYC I lost insurance while seeing a shrink long-term and, while he didn't really help me with med changes in hindsight, he cut me a deal. Mentally ill people should not be forced to rely on deals being cut lol. (Nobody in need should.)

Sorry for the long reply...I'm new and I guess brevity just ain't my thing. (Sorry.) tl;dr - genetic testing for med changes!
 
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