Severe but Rare Side Effects of Meds

imnotarobot on 12/11/2019 - 20:32
Last edited 13/11/2019 - 10:13 by 1 other user

Hi.

I am on Seroquel XR 200mg daily plus Seroquel 150mg as required when extremely agitated. As well as a high dose antidepressant to treat BPD, AvPD, OCD, GAD, PD, mood disorders are in remission thanks to the antidepressant. SSRIs, SNRIs, MAOIs are mostly ineffectual in treating my anxiety and OCD which caused me a huge amount of distress day to day. I was a wreck, and have been barely scraping by the past ten years. Last year I had a breakdown, lost 15kg in 2 months, barely kept my job but am now seeing a psychiatrist and psychologist every two weeks after avoiding them for 17 years due to bad experiences. I've been on a merry-go-round of meds until recently where I've stabilised. Seroquel gets rid of my anxiety. I can't take benzos as I have a habit of simply eating whole boxes of them when I feel down. Seroquel isn't typically prescribed to treat anxiety. Usually just schizophrenia and bipolar disorders.

But I finally feel well.

Problem is the potential side effects of Seroquel. It's insane and can cause permanent movement disorders where a person loses control of their tongue/jaw/neck/arms etc. There is no current effective treatment for the disorder which can come about from antipsychotic use, such as seroquel.

I am torn between the potential (albeit very rare) side effect profile of the drug vs finally finding something that works after decades of trying.

Every drug has side effects, but this is life changing if it happens and is untreatable.

I want to change meds but also don't want to go back to how I was. I am really confused about what I should do.

I haven't spoken to my doctor about it yet, but will asap once I see him. I've been on antipsychotics for the past 9 months and am doing well on them. :/

What should I do?

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Comments

  • chillybags on 12/11/2019 - 20:42
    +2

    Don't really have any advice other than consult your doctor, but must have been pretty hard to open up about this topic. Thanks for sharing and I hope you can get the answers/help you need! :)

  • canyoudoitcheaper on 12/11/2019 - 20:48
    +1

    are you actually suffering from the side effects at the moment?

    If they are normalising your life you shouldn’t stop taking them. Speak to your doctor and see if a lower dosage (100mg or 50mg) is appropriate.

    Best wishes and I hope you feel better in the long term.

    • imnotarobot on 12/11/2019 - 20:55
      +2

      No side effects yet. Not even the common ones like weight gain and lethargy.
      The dose I'm at is the minimum required to see beneficial results for me. By all accounts I'm on a low dose already and the doctor didn't want to go any higher than current anyway.

      I'll talk to him next week, I'm hopeful that I'm just over thinking things. One of my problems is that I catastrophize things so maybe I need to step back for a bit. Thanks for your kind words.

  • Halo375 on 12/11/2019 - 21:13
    +1

    I’m glad to hear you’re feeling better. I had a stage in my life where stress and anxiety knocked me around pretty hard but clearly nothing as severe as what you’ve been through. Meds helped me find a calm place to rest and identify what triggered my attacks. Working on my physical and emotional health helped. Having a better diet and a consistent routine worked wonders. Talking to doctors and a psychologist helped me understand what was happening and why, allowing me to build a plan that I could commit to in order to get better. Take it slow - learn what you can and make the hard decisions you need to to live a better life. Good luck!

    • imnotarobot on 12/11/2019 - 21:25

      I'm so glad to hear you've found success! I'm still chipping away at it slowly, very slowly, but am making progress. Medication has helped me enough where I can work on it structurally, from the top down. A very long way to go but like you, I'll take it slow and do it right.
      Thanks for replying

  • HighAndDry on 12/11/2019 - 21:34

    Self prescribing is generally not a great idea so,

    I haven't spoken to my doctor about it yet,

    Do this like you're planning, and then please take their advice. Or that of another qualifier medical professional.

    At the very least, they'll know how to keep a lookout for signs of possible side effects or how best to mitigate the risks.

    • imnotarobot on 12/11/2019 - 21:48
      +1

      Thanks, yes I will be speaking with him next week. I've only just discovered this potential side effect and am worried (I'd be worried a lot more were it not for seroquel, ha).
      I will definitely take his advice. I guess I was just looking for others who may be in the same boat with advice to share, or even personal experience with these drugs or symptoms.
      I've come this far and don't want to do anything which risks my recovery. I'll raise my concerns with him and go from there :)

  • Redang3lz on 12/11/2019 - 22:39
    +1

    I'm glad you're doing well on seroquel.

    The side effects you're describing is known as EPSE. As you said it's rare, especially on low dose, but definitely something you should look out for. These effects can often be treated with anticholinergic medications if you're worried about irreversible side effects.

    The NPS provides good information about medications (compared to google or wiki). And as everyone mentioned, you should discuss any concerns you may have with your doctor. Best of luck!

    • imnotarobot on 12/11/2019 - 23:08

      Thanks for the info! I've done some googling and found information on what you've described from local hospitals discussing exactly these symptoms. Thanks for clarifying it for me :)

  • [Deactivated] on 12/11/2019 - 22:42
    +1

    Side effects are extremely rare. Most of the listed side effects are akin to "may contain traces of peanuts".

    The side effects may not even necessarily be a general side effects and may be specific to certain ethnicities, risk groups, diets, existing conditions…

    Most recently, I was listening to a podcast that discussed timber and the FDA. Because all timber is essentially filed under one substance, the data sheet on the most common material may have warning for severe reactions on contact. Imagine the horror.

    This is the reverse. Instead of lumping all medication under a single umbrella, they've lumped all patients under one.

    Most of those side effects possibly may not even have the slightest chance of affecting a given individual.

  • try2bhelpful on 13/11/2019 - 00:15
    +2

    Best to get the advice from your doctor and go through everything thoroughly with them. Ask all the pros and cons, what you should expect, what would be considered normal, what is a danger sign. If you read all the side effects listed on most medication you wouldn’t go near any of them. I seem to remember one of the ones associated with the contraceptive pill was stroke. What you are looking for here is likely chances and what might be “life altering”.

    The very best of luck on your future.

  • brad1-8tsi on 13/11/2019 - 08:01
    +1

    Talk to your Doctor.

    If you are still concerned after that then seek a 2nd opinion from another Dr. If they both say the same thing then rest easy.

    • [Deactivated] on 13/11/2019 - 10:27
      +1

      You obviously don't watch House MD.

      • try2bhelpful on 13/11/2019 - 10:28
        +1

        I didn't realise the OP had Lupus.

        • [Deactivated] on 13/11/2019 - 10:34

          That would come from the third opinion.

          The fourth will say something like, "but mate, none of the other two doctors picked it up".

          "I'm sure the two other doctors are great at their jobs - dishing out cold medicine.", interjects another.

          Then the sixth would say, "are we going to keep going with this pissing contest whilst the patient is dying."

          (I watch too much House :( )

          Bonus points of you know which character said what.

          • try2bhelpful on 13/11/2019 - 11:20

            @[Deactivated]: Cant remember the names.

            The Lupus was always the lady doctor.

            Not sure about the others.

            • [Deactivated] on 13/11/2019 - 11:32

              @try2bhelpful: Cameron is correct. She is an immunologist.

              "Mate" is good ol skippy, Chase.

              Sarcastic comment has to be House.

              Managing people has to either be Cameron or Foreman. Since Cameron is #3, so by exclusion that leaves Foreman.

              No soup for you.

              • try2bhelpful on 13/11/2019 - 12:16

                @[Deactivated]: I started to write it up and, actually, I was pretty close. I thought the mate might be a tad obvious of the cute blond Aussie guy and the sarcasm had to be House. But, as you asked for names, I was going to lose anyway :).

                I’m trying to “fast” today anyway, so no soup either way :(.

                • [Deactivated] on 13/11/2019 - 12:28

                  @try2bhelpful: Yes. Hamburger for you!

              • follow on 13/11/2019 - 21:53

                @[Deactivated]: sarcastic could also be Talb

                • [Deactivated] on 13/11/2019 - 21:59
                  +1

                  @follow: But then you wouldn't have the other three in the same room.

  • imnotarobot on 13/11/2019 - 12:16
    +1

    I'm seeing my psychiatrist this afternoon and will raise my concerns with him then.
    I'll update afterwards. Thanks for everyone's input so far

    • try2bhelpful on 13/11/2019 - 12:18
      +1

      I hope it all goes well for you. It is a tough issue to have to deal with.

  • imnotarobot on 13/11/2019 - 17:41

    I'm staying on Seroquel. He says in his 20 years of prescribing these drugs he's never seen it. He will discuss my concerns with his peers but is confident none of them have seen it either. But he won't say there is no risk. It's a risk vs benefit proposition.
    He wants me to focus on working with my psychologist so I don't need the seroquel. That will be a way off though. His aim is to have me medication free eventually. I can't comprehend that currently given the work I have to do.

    • try2bhelpful on 13/11/2019 - 20:34
      +2

      Every day is a new step. Concentrate on what helps you. Keep the end goal in sight but you don’t have to reach it tomorrow. Everything we do is risk vs benefit. Sorry if this sounds like platitudes but it is still true for most of us. Even without having the challenges you face, getting out of bed every day can be hard, so hang in. If you want to chat to us we are happy to do it. We aren’t psychiatrists but we can be sympathetic ears. Keep listening to the experts.

      • imnotarobot on 13/11/2019 - 21:38
        +2

        Thanks for your advice, it means a lot. I like the anonymity of this place, minus the circle jerk of reddit. It's easier for me to discuss things on the internet than in person, though am actively pushing my comfort zone each week with a mental health worker coffee catchup.

        Over the years I was wishing for a magic pill to fix everything and have been reminded today that it doesn't exist.

        I spent a long time avoiding the experts and I simply pushed the crap further down the road. I'm listening to them now.
        Thanks again :)

  • try2bhelpful on 21/11/2019 - 23:36

    Just checking in to make sure you are doing OK. I hope the meds, and the experts, are helping you.

    • imnotarobot on 22/11/2019 - 10:01

      That's very kind. I have not been doing ok, but am seeing my doctor again today. Thank you so very much for asking :)
      My sleep is an issue though, and I've been very self destructive and aggressive. This time of year usually isn't too good for me so things tend to bubble under the surface.
      It's nothing I haven't dealt with before though, so am hopeful of the doctor visit calming things down and putting everything into perspective.
      I see a mental health worker on Tuesday for a coffee and chat then a psychologist on Wednesday. So I'll be honest with them all and use them to help me get through the next 5 weeks or so. Plus when I'm down I just give my dog a big hug. He helps.

      Thanks again :)

      • try2bhelpful on 22/11/2019 - 14:45

        Keep hanging in there and keep seeing your experts. Dogs do tend to keep you grounded, they understand the essentials in life: food and love. I find reading a book I’ve already finished helps me to sleep. I can start at any point and read until I’m tired then put it down to sleep. If I try it with a new book I will still be reading at 3 am. Exercise seems to be a good way to work things through, as well. If I have a good run or work out session I fell better afterwards, and it helps me sleep as well. If your getting worked up about something then step back and breathe. Writing things down and putting them in order also help me when I get upset. Each day is a new one. All the best. If you want to chat then leave a message, I will try to get back to you ASAP.

        • imnotarobot on 22/11/2019 - 20:38

          They're all fantastic suggestions! I like the reading idea, of going over a book you've already read.
          Exercise is an issue with me, more motivation but also I have a foot injury that prevents me doing much besides walking slowly or swimming, and I hate swimming :/
          I used to walk the dog a lot but he's a bit antisocial so he's a home-only dog now.

          Saw the doc today and he's changing a few things dosage wise and timing, so I'm confident the sleep issues will be less severe soon. I think that might be a big help for levelling me out, if I'm not tired and grumpy all the time I can focus on changing and challenging a few of the other things I have going on. I have to challenge my self dialogue. That's my task this week. He wants me to write it all down as well, so you're on the money.
          Thanks again :)

          • try2bhelpful on 22/11/2019 - 23:11

            @imnotarobot: Glad to be of help. You can do exercise in the pool that doesn't involve actual swimming. At the moment I've stuffed my knees, a bit, so I've being doing exercises in the spa. Arm dips, push ups, isometric abs crunches, lunges, etc. Using the water to isolate the muscle group helps a lot. Maybe you can find a place to get some training for your dog so he can go out walking again; you would both probably enjoy that.

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