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Not Coping with medication side effects

cupcake88cupcake88 Member Posts: 901 Pioneering
I’m sure every one at some point can relate to medication side effects and how horrific they can be . My side effects are constantly eating and being very restless it’s unreal how my legs and hands keep shaking it’s very distressing . All anti pychotic meds have there own horrible side effects . I’m hopping it will get better in a few weeks my gp prescribed me Some thing to help with the side effects I’m not resting much but at least I’m eating when I was in hospital I wasn’t eating so I’m glad to be back home but the side effects are awful . 

What side effects does your medication cause and what helps x 

Replies

  • woodbinewoodbine Community Co-Production Group Posts: 4,105 Disability Gamechanger
    hi @cupcake88 apart from the side effects how are you?
    When i started on an epilepsy med about 15 years ago, (one of many) I was in the bath one day and all the hairs fell off both my legs...I kid you not.
    The good news is that most side effects settle down as you get used to the meds.
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • leeCalleeCal Member Posts: 3,501 Disability Gamechanger
    edited April 15
    Sorry to hear about your side effects @cupcake88, a lot of antipsychotics cause weight gain even without causing an increase in appetite unfortunately they’re renowned for it. Restless legs are annoying but could decrease over time, I’ve had it and shaking hands . 

    My side effects are mainly feeling muzzy headed and lethargy, also an intolerance to heat. 

    Of course these things should be mentioned at the next review if they haven’t depleted. It’s a tricky balance getting the right meds at the right dosage of course and our bodies can alter to accommodate meds too so effects can change over time. 

    (@woodbine, that hair thing must’ve been scary!)
  • cupcake88cupcake88 Member Posts: 901 Pioneering
    @woodbine hi how are you doing ? I’m ok part from the side effects glad to be back home at least at home I’m eating in hospital I didn’t eat . 
    That must of been so scary when that happens how are your side effects now ? 

  • cupcake88cupcake88 Member Posts: 901 Pioneering
    @leeCal

    hi there are you on anti pychotic meds as well ? There so horrible the side effects . Did your restless legs last long ? It’s horrible isn’t it having shakes and feeling restless .

    i think a lot of people have to go threw all these horrible side effects at first and some times meds need to be changed and then the side effects start all over again 
  • OxonladyOxonlady Member Posts: 393 Pioneering
    Hi @cupcake88, I've been wondering how you've been getting on, I expect you are glad to be back home?
    I've been on steroids for almost 17 years and they make me very hungry. In that time I've put on 8 stone. Nothing helps to stop the hunger. Except recently, when I started on new painkillers, they make me not want to eat. So maybe I'll lose some weight now...

    I hope your side effects settle down. Good luck with everything. 
  • leeCalleeCal Member Posts: 3,501 Disability Gamechanger
    edited April 15
    Hi @cupcake88, yes I’m on antipsychotics, my restless legs when I had it didn’t last very long, just when I first started a new med, say a week or so. I didn’t need to mention it because it went quite quickly. The shaking hands thing I only get if I pull something a bit heavy, not all the time. If I did have it all the time I’d mention it. 

    For me the worst side side effect is weight gain, I’m around four stone overweight and it is now causing me to get short of breath when I do anything like climb stairs etc. Not good. I have repeatedly mentioned this weight gain but they say there’s nothing they can do about it.

    The only good thing about the meds I’m on is that I am stable mentally mostly, though I can get a bit manic from time to time, that’s why my posts are sometimes a bit odd probably.
  • chiariedschiarieds Community Co-Production Group Posts: 8,590 Disability Gamechanger
    Hi @cupcake88 - I'm sorry your meds are giving you horrible side effects. Did you ask your Dr how long these might last when he discharged you back to the community? Pleased you're eating again, but do you think your anti pyschotic meds are making you want to eat more?
    My current med (pregabalin) doesn't cause me any problems, but I know with some others they put on weight. Altho I've always been underweight, I now only eat once a day. I've had horrible side effects with other meds in the past from 'dashing to the toilet syndrome' to put it politely, to feeling so nauseous I couldn't eat due to my already low blood pressure being lowered even further, as well as feeling as dizzy as a coot if I tried standing or moving about. We're all different, but with my disorder (Ehlers-Danlos Syndrome) I later found that we can have unusual sensitivities, & common allergies, so some meds don't work as they should, or you're too sensitive to them.
    As woodbine asks, how are you doing? :)
  • janer1967janer1967 Member Posts: 10,115 Disability Gamechanger
    Hi there 

    Nice to hear from you hopefully the side effects will subside over time 

    I had some meds for glaucoma that made me feel so sick and no appetite they reduced the dose but still the same and told me to eat banana to replace potassium that the meds affected . Luckily I was taken off them after about 4 months 

    I have also had a nice side effect from my glaucoma drops my eyelashes have grown really long and thick everyone comments on them now 
  • woodbinewoodbine Community Co-Production Group Posts: 4,105 Disability Gamechanger
    cupcake88 said:
    @woodbine hi how are you doing ? I’m ok part from the side effects glad to be back home at least at home I’m eating in hospital I didn’t eat . 
    That must of been so scary when that happens how are your side effects now ? 

    @cupcake88 I'm doing ok sort of, like most of the population i'm sat waiting for the better weather ! 
    To be honest that was one of the better side effects one which I won't bore you with but also my weight bounces up and down all the time, mind you I do take 30+ tablets a day, I was dead chuffed last week when I was weighed at the doctors I had only gained 3lb since early December and I always loose weight in the summer as i'm more active (health permitting) and I eat more healthy foods.
    Take care
    John
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • cupcake88cupcake88 Member Posts: 901 Pioneering
    @Oxonlady. Hi there yes I’m at home now which is much better for me thanks so much for all your support means the world to me . I think all meds make you hungry I which they didn’t when I was in hospital I didn’t eat at all now at home eating always . 

    Do your side effects bother you daily ? Xx hope your well 
  • cupcake88cupcake88 Member Posts: 901 Pioneering
    @leeCal. I’m sorry to hear that you also get these awful side effects quatiapine was the reason why I put on 3 stone . And it made me tiered always 

    Now I’m on aripiprazole injection Form and the side effects are worst . 

    What helped you with the side effects ? My shakes are all the time I feel like my mental health team just expect people just to deal with them it’s not like I can stop the medication it’s in my system ha .

    im glad they help you tho and make you feel better that’s good to hear 
  • cupcake88cupcake88 Member Posts: 901 Pioneering
    @chiarieds hello how are you doing today ? Hope your well . They said the side effects will last from a few weeks to a couple of months so fingers crossed I feel better soon . 

    My nurse is coming to see me next week again I think I’m on weekly visits from her now . 

    I’m sorry to hear you had such awful side effects . 

    I have heard of pregalin is that a controlled medication think my friend is on that for anxiety but she has to be weekly monitored . 

    I think this is a good topic because we all have suffered with awful side effects I don’t feel so alone now . 

    I’m doing ok but I’m still adjusting from being in the hospital the side effects ect xxx 
    how are you doing 
  • OxonladyOxonlady Member Posts: 393 Pioneering
    Hi @cupcake88, good morning to you.
    The steroids were always making me hungry, particularly when my doses had to be increased. 
    I'm now taking the painkillers Nefopam, which is suppressing my appetite. It's also giving me headaches and vivid dreams.
    The pain is still bad even though I am taking other painkillers as well. 
    I'm trying to walk but it's too painful and my carer is only here 20 hours per week. 148 hours per week on my own when I can barely move...

    Wishing you a better day today. Take good care. 
  • cupcake88cupcake88 Member Posts: 901 Pioneering
    @janer1967
    hi how are you how did your eye injection appointment go the other day ? Are you ok ? 

    Glad you was taken off the meds that made you feel sick that must of been awful 

    Oh and wow that’s so good bout your eye lashes I’m glad that’s a good side effect xxx
  • cupcake88cupcake88 Member Posts: 901 Pioneering
    @woodbine
    hi how are you today the weather near me has been random we had some sunshine have you had any sunshine near you ? Is that how many tablets you take a day 30 ? Wow . So you must of experienced all sorts of side effects . Thanks for sharing your experiences with me with medication side effects . Seems like I’m not the only one who has experienced awful side effects . 
    I hope the weather brightens up for you soon it should do . 
  • cupcake88cupcake88 Member Posts: 901 Pioneering
    @Oxonlady good morning thanks for sharing with me your experiences with medication and side effects . Thanks for your support as well I really appreciate it . I hope you have a lovely day . 
    I’m sorry to hear your in so much pain sending you loads of well wishes and hugs must be awful being in constant pain xxx

  • lisathomas50lisathomas50 Member Posts: 4,143 Disability Gamechanger
    Hope things get better for you soon
  • OxonladyOxonlady Member Posts: 393 Pioneering
    Hi @cupcake88, thank you for your good wishes.
    I'm going to listen to music until my Carer comes. I hope it'll take my mind off the pain. 
    Have a peaceful day. 
  • janer1967janer1967 Member Posts: 10,115 Disability Gamechanger
    @cupcake88 thanks for asking my eye injection was as good as they can be but they are not pleasant by any means 

    Felt bit rough after didn't eat and had an early night feel lot better now just need vision  to get better 

    Interesting thread you have started 
  • leeCalleeCal Member Posts: 3,501 Disability Gamechanger
    edited April 16
    @cupcake88 I had a very bad reaction to quatiapine and I felt as though I was dying, awful, and the side effects from just a few doses lasted in my system for eighteen months!

    risperidone was better and I had only weight gain as a side effect, but now I’m on the same as you though not necessarily the same dosage. I’ve been on it for just over a year and mostly I just feel muzzy headed when I first have the injection for around three days and then a bit again just before I need another dose, ie four weeks.


  • woodbinewoodbine Community Co-Production Group Posts: 4,105 Disability Gamechanger
    cupcake88 said:
    @woodbine
    hi how are you today the weather near me has been random we had some sunshine have you had any sunshine near you ? Is that how many tablets you take a day 30 ? Wow . So you must of experienced all sorts of side effects . Thanks for sharing your experiences with me with medication side effects . Seems like I’m not the only one who has experienced awful side effects . 
    I hope the weather brightens up for you soon it should do . 
    It's nice today sunny but still cool, senior management is going to see her mum tomorrow she's in a rest home (bad dementia) she last saw her on the 10th March LAST year, will be an emotional half hour.
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
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