So once again, I am attempting to get off Quetiapine.  Oh so many reasons (weight gain, think I might have developed diabetes, flatness, spending ALL my spare time sleeping, not being sure I have manic depression, not being sure I believe in manic depression actually existing), but the biggest one being I don’t think I need it. My psychiatrist agrees with this. (Although recommends keeping an, “In Case of Emergency” stash). It’s been six years on varying doses. I am doing it sensibly this time- i.e titrating. Everyone around me, including my manager, knows what I’m doing. I have gotten down to 100mg and so far:

I feel like I am permanently on the edge of flu

I am itchy as fuck

I am feeling overemotional and tearful and hypersensitive

My brain is racing again and I can’t concentrate

I keep getting electric shocks in my hands

I feel nauseous and my appetite is decreasing (the latter is good, I have gained 5st in a year on the higher dose).

My sleep is fecked- I am waiting up constantly but still feeling drugged when I wake up (I slept well yesterday though, but that was an ills exhaustion-medication combo)

I just don’t feel like myself.

I thought this would get better, as it’s been a few weeks, but some days are worse than at the beginning. I think this is also partly because my immune system is a bit fecked right now so I’m picking up the ills along the way.

I don’t know whether to credit Quetiapine and other medication with my stability these days, or to credit getting older. Was I ever ill in the first place? Or was I just young and someone who had gone through a lot of trauma? As I’ve grown older, I have begun to accept- painfully, often- the trauma I’ve experienced and realising it’s had an impact on me.  I haven’t had a, “(hypo)manic” episode in about 2 years. I had a depressive one a year ago, and it was pretty bad, but in general, I am just an anxious, analytical person.  I am always a little bit hyperactive or a little bit low, it’s what I’m like. I do realise my sustained, “episodes” deviate fairly markedly from my, “baseline”. I do know they come out of nowhere, and I know what that suggests. But either/or, I don’t think any of that is bad enough to warrant taking medication for the rest of my life. For a long time I have thought that, and have begun to think that the medication is keeping me unwell.  Not in an anti-psychiatry way, but that the side effects are outweighing the benefits.

25mg is the dose I am dreading. That’s when total insomnia will come and I’ll have no choice but to power through.  The last time I got there, then 0mg, I had rebound psychosis from insomnia and it was quite scary. The police had to be called because I thought our house was being robbed and barricaded myself in a room. I felt almost instantly okay again when I took 400mg and slept for 2 days and I hated that.  I hate that my normal is being drugged up and exhausted. I hate that my normal is knowing, every day, I’ll probably die 20 years younger than most people I know because of my medication and its effects.  I just don’t want to do it anymore.

I am slightly afraid, though. Afraid of all my emotions pouring back and of not being able to cope with it.  I do think my medication has helped keep me sane over some of last year’s trauma, because they held me in numbness, suspended me in fatigue and flatness.  Maybe all the years. The flood that might be coming terrifies me. But I’d rather be drowning than be alone, forever and forever, on my dry little island.

I’ve gotten off Lamictal and Prozac already- wish me luck.

28 Responses

  1. Good luck! A very heartfelt GOOD LUCK from someone who’s been through many medication changes in the last 12 months.
    I must admit I have found quetiapine to be one of the most effective psychotropic medications I have ever been prescribed – though I have suffered the weight gain, “hollow legs” effects, etc which you describe. In fact, I now have metabolic syndrome, which sucks, considering that in September 2011 I was running half marathons.
    Still, when it comes down to it, I’d rather be overweight and unfit than be dead, which was a sad possibility for a while.
    It looks like my medication roller coaster has slowed down sufficiently now for me to be able to begin slowly losing weight and getting fit again. I have put on ~30kg in the last year. It’s pretty depressing to think that if I lose weight at the maximum rate most doctors recommend, I’ll still be overweight at the end of 2014.
    Still – I say it again! I’d rather be fat than dead.
    Now I just have to work slowly towards being skinny and fully alive 🙂

  2. Be careful Seaneen and hope you keep well.

  3. Good luck with reducing your dose x

  4. I recently asked both my doctors if I could go off seroquel… i think both nearly died of a heart attack when I asked… i didn’t and don’t really see the problem as I told them I’d up some other meds I’m on or add in something EXCEPT olanzapine… and I can’t slowly down myself as I take 800mg in 400.mg pills :/ Main reason I want off, that shit is making me fat and as a history of someone with an ED it is dangerous. At this point I’d almost rather be crazy and thin than more stable and fat…and that is sad.

    Anyways I hope it works out for you in all ways!

  5. Good luck tapering off seroquel! I can’t imagine its easy at all, if I even accidentally miss a dose I am quickly reminded to take it by the fact that I feel really itchy, sick and dizzy. It’s like bad hay fever. I have had to increase my dose recently due to a relapse into depression. I guess I was lucky that I managed to stay at 300 mg for so long now I’m on 600 mg and I feel like I’m improving slowly. I hope I can go back to 300 mg when this is over. I don’t want to have to take this stuff for the rest of my life either.

    Take care, I hope you are successful. 🙂

  6. Hiya

    I’m glad you have the support of the psychiatrist. Do you think when you get to 25mg, s/he could give you some lorazepam at night to stave off the insomnia?

    As usual, I can relate to your post. I have often wondered whether I really do have bipolar or was it circumstance. I *think* I do really, and I think I question it when I start to feel better.

    I’m also on quetiapine and stupidly (for a student mental health nurse) ran out for about 4 days. The result being all the things you are going through, particularly the itching which was driving me insane as well as waking up all the time. It went away within about 1 hour of getting some more but my word I slept pretty much the next 2 days 😦

    It is possible to take quetiapine and keep the weight off but it’s bloody hard work and involves slimming world for me. I’m hoping that getting to a healthy weight will stave off all the other illnesses that can develop from the drug and I won’t die 20 years earlier :/

    Good luck my dear; it’s hard overanalysing everything isn’t it? I wonder if that’s a personality trait or the illness?

  7. Good luck and love. I wish our brains weren’t such squirrelly lying arseholes. :/

  8. I completely understand and support you as best a person via the internet can. The mind is such a messed up place. As long as you have support and are aware of what you are doing i wish you all the best of luck! I went of seroquel and that was heck. Hit an awful depression, not good, but it made me a zombie that needed sleep or coffee at all times. the lamictal and prozac i’m on now, it does enough to keep me aware most of the time though i still get episodes. Just take it one second at a time and you’ll be ok! prayin’ for ya darlin!!!!

  9. Good luck Seaneen.

    Thought I’d share some info and observations in case it’s helpful to you…

    Quetiapine among other things is an anti-histamine…that’s why you’re itchy as fuck…it means you’re reacting to your own bodies histamine that is no longer being dampened by the Quetiapine. Not everyone gets that as a withdrawal symptom and it might mean that you’re generally sensitive to histamine which is worth knowing about. People who are sensitive to histamine can watch their diet and control the amount of histamine ingested in general all the time…there are other ways of managing histamine as well…including things like meditation.

    Histamine sensitivity can actually manifest as psychiatric symptoms in some people…so that’s why it’s worth knowing if it’s a factor in your situation or not.

    Best to you.

  10. This is my first visit to your site!
    Your first entry caught my attention bc I’m feeling pretty loopy right now as I am also titrating off of Seroquel. I’m down to 300mg from 800mg following an acute bout of the crazies two years ago. Now that I’m at 300mg I feel like my brain is waking up and unfortunately I’m noticing how shitty my life is. Like Robert DeNiro in “Awakenings” when he realizes that he’s been asleep for like 20 years- at first he’s so happy to be awake and then he becomes resentful. It’s a weird place to be at. I don’t know if I’m getting weird or if my life has gotten weird – am I starting to spiral or am I just aware of things I didn’t realize before? A Catch-22. I look forward to knowing how it goes for you – I was on Prozac and am still on Lamictal and Lithium.
    Also I know this sounds ridiculous but I have hardcore insomnia and only one thing has ever helped me to stay asleep all night with no side effects. Melatonin. Now before you shrug it off, know that I am like the Bionic (wo)Man. I can take all kinds of benzos and whatnot and they don’t really effect me unless they are at a higher dose (Remeron, Trazadone, Xanax, Klonopin ). Even at the higher doses I still wake up and sleepwalk at night – I typically sleep eat or just move things around my house which is always fun in the morning. I took melatonin at the suggestion of my psychiatrist and it worked – a 5mg pearl of melatonin. F’ing awesome! Good luck and I’m so glad I found your blog.

  11. Cheers to being brave enough to jump off the dry island, enjoy the water, and keep some life rafts close by:)

  12. Good luck with this. I’m a very strong believer that for any medication the benefits must outweigh the negatives, and quetiapine has a lot of negatives. Frankly, as a psychiatrist, I have a hard time prescribing any drug to someone else if I would not take that same drug if I were in their position. Quetiapine is one of those drugs that leads me to pause before I prescribe it.

    You’ll have to excuse me if I am off-base here – I just found your blog this evening and am not yet familiar with your background – but the most striking thing to me about your post is that you are questioning your bipolar diagnosis. I recently made a very relevant post about this topic on my blog, but I would suggest you have a real heart to heart with your shrink about this question. If you truly have bipolar, staying on medications indefinitely may be in your best interest. If you do not, however, the medications may just be covering over the symptoms of an entirely different issue.

    • I’ve had the discussion. In 2009 my bipolar diagnosis was changed to BPD then a year later changed back to bipolar. I am conflicted. I haven’t had BPD symptoms in years and never had the core ones. I did self harm (not for 4 years now) but always been in fairly stable relationships.

      The medication has capped my excesses. So far I’ve had the shakiness I would expect. My current psychiatrist is ambivalent about my bipolar diagnosis haven’t never himself seen a manic episode (and I forget to recount them) and thinks overall I’m fairly stable. He recommends keeping an antipsychotic stash at home in case. The panicky anxiety is new and understandable to anyone who knows my personal life.

    • I read your entry. My mood swings dont operate hourly or daily. Recently I’m all over the joint though. I accept that due to coming off meds. Also my general Irishness means I’m fairly ranty!

    • I’ll reply to everyone sorry! Only just installed the WordPress app which is dead handy!

    • Also my psychiatrist has no idea I’m off Lamictal and Prozac. I’ll tell them if needs must! Been a few months and I’m okay.

  13. Quetiapine was easily the most effective med for me, but also the most debilitating. Although I suppose it’s tricky to feel high / low when you’re a zombie…

    Good luck!

  14. I feel for you. I’m stuck on 2.5 mg of Olanzapine, having been on 10 mg at one point; whenever I stop taking it I end up with terrible insomnia, visual disturbances and a profound sense of unease. I don’t believe these are symptoms emerging that have being repressed by the medication, but that they are infact a result of ‘super sensitivity psychosis’. But they’re upsetting for both me and my family, and I always end up starting taking the ‘pine again out of, frankly, fear….This drug was presented as being slightly wondrous to me when I started taking it nearly 6 years ago, I was told it would be easy to stop taking and of great benefit to my state of mind…ho hum….If you drink tea and coffee maybe cut them out for a while? Might help with the sleep problems?

  15. Good luck, i tried quetiapine for a few weeks for anxiety, but just couldn’t function! Appetite went through the roof (although only for chocolate and coke, not broccoli…oddly…) and I just slept for hours and hours.
    The withdrawal sounds extremely unpleasant but I’d like to remind you it is only temporary, just gotta stick it out for a while longer!

  16. […] Withdrawal. […]

  17. Hey everyone, I have a blog as well and would like some of you to visit me. Thanks everyone esp. you beautiful Saneen xxx

  18. […] Filed underneath: Mental health The Secret Life of a Manic Depressive […]

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