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Really need your experiences of meds (especially Fluoxetine for teen girl)

Dizzy

Although we held off medication for a long time and tried things like CBT, good diet, good sleep etc, my teen daughter has unmanageable anxiety which leads to regular hallucinations & depression, affecting her ability to manage day to day life. Unfortunately our experience of meds so far is bad - Sertraline provided no benefits and a fair amount of side effects even after many, many months (stomach aches, tiredness, headaches etc), and coming off Sertraline has been horrendous. The anti-psychotic, Aripiprazole, made her hallucinations massively worse so this was also stopped. My question is, has anyone had similar experiences and then started Fluoxetine and has it been successful? I don't want to put her through trying something else if it's got a very limited chance of success, although i'm not sure she can manage without something. 

I am no medical expert but there appears to be very little research on these meds with autistic girls. From my limited knowledge, autistic people may have increased levels of serotonine already, then if you are using an SSRI med (like fluoxetine or sertraline) this increases serotonine levels further. There is, I think, research to show that hallucinations can be linked to high levels of serotonine, so is it making things worse, giving these meds to autistic people who are 3 times more likely to experience hallucinations anyway? My understanding could well be completely wrong, i'm just trying to piece lots of info together in the absence of any helpful advice from an overworked NHS psychiatrist with no time for an appointment when you need one. 

I'd really value hearing about your experiences.

  • I have autism and ADHD. I have tried nearly every antidepressants and anti anxiety medication and they haven’t worked on me, they made it harder to process information and made sensory issues worse. Some didn’t work and I became tolerant too to quickly. 

    I had two mentally breakdowns while I was on medication because they made my ability to function in possible which made me suicidal. 

    they are not designed for the neurology of neurological divergent individuals with autism and ADHD. 

    Antidepressants are also not designed for long term use and do chronic damage with prolonged use stopping the body from naturally producing the chemicals need to regulate. 

    the only release I have had from mental health issues is when I was trailed ADHD medication for three months but because of new NHS guidelines medical professionals need adhd formal diagnosis to continue treatment as ADHD Medication is a controlled substance. 

  • Hi , I couldn't find anything specific enough on the use of Fluoxetine, but sometimes running a search on the online community discussion boards can find some helpful information. I have found this thread, which is getting a bit old now, but may still be useful: https://community.autism.org.uk/f/parents-and-carers/12932/anyone-had-success-with-anti-anxiety-medication/77137#77137.

    Hope this helps your daughter.

    Best wishes,

    Anna Mod

  • in reply to Nikki

    Thank you. I've contacted various private psychiatrists but all currently seem to have massive waiting lists, even if you're willing to take out a mortgage to pay their extortionate fees! I'll look Dr Stein up though - always great to have a recommendation! She is starting some one to one therapy sessions end of March, which are partly CBT based but much more aimed specifically at neurodiverse clients so maybe these will prove helpful :) 

  • So sorry to hear about your child. I have heard that medication can have many side effects. Have you tried alternate healing like reflexology, reiki, massages? I know these don't give immediate results, and you need to keep at it regularly for a while before you see results.  My son has aspergers and suffers anxiety about going to school.  I give him reiki regularly, which helps to a certain extent. He does skip school some days, though. But definitely helps with sleep and to relax.  He has just started secondary and his anxiety has been huge.

    If you want to see a private psychiatrist then I would highly recommend Dr.Samuel Stein.  He takes a lot of time to understand the situation and provides great advice. 

    Wishing for things to improve for your daughter. x