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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.

  • My daughter (16) took sertraline for around 4 months with serious side effects. She came off them and moved to Fluoxetine with so far no side effects at all. She has currently been on the Fluxetine for around 2 months. Honestly I am not sure that they do any good, most improvements we have seen have been down to us changing expectations and managing demands on our daughters time and energy levels. Also melatonin for sleep has been vital.

  • in reply to Martin

    Can I ask what brand of CBD gummies that you have found helpful? 

  • in reply to NAS79902

    Now I work all the time, and I don't even have depressive thoughts. Sometimes work get boring, and I want to rest, but I don't use alcohol. To relax, I use CBD gym I bought here https://joyorganics.com/collections/full-spectrum and not for nothing. Everyone needs to relax, but everyone has his own way of relaxing.

  • I struggled with persistent depression  for a long time. I could get depressed over any little thing. But my friends helped me get rid of it.

  • in reply to Martin

    Thank you, actually we do have some gummies for my 12 year old who struggles to leave the house & go to school due to social anxiety, but because my middle daughter was on sertraline she couldn't ever try them because they can't be taken together. Now the sertraline is out of her system she could give them a go. They didn't seem to have any effect on my 12 year old but lots of people do benefit from them, so definitely worth a try, thanks! 

  • My daughter has found CBD gummies useful for her anxiety. They are cannabinoids that do not contain the chemical that gives a 'high' from cannabis. They are legal and can be bought over the counter. The gummies are quite pleasant, though the oil itself is bad tasting. They seem to improve mood in my daughter in a general way.

  • in reply to Clumsywitch

    That's really helpful, thank you. I really appreciate you taking the time to reply and it helps me build a general picture of whether the downsides really outweigh the benefits.  

  • Hi. I can’t really comment on the effect on your teenage daughter as I have no experience of taking anything at that age but I have been prescribed many SSRIs over the years before I was diagnosed and have had very mixed results. I was on fluoxetine for quite a while ages but it stopped being effective after about a year and I’ve been on sertraline on and off but that hasn’t been effective either. I had very similar experiences to those you describe your daughter as having with other meds - horrendous hallucinations, heart palpitations, extreme vomiting and other effects, to the extent that I’m classed as being allergic to them. The other really difficult thing is that when I first went on sertraline the side effects wore off but then when I went back on it later (the Dr’s only suggestion of help at the time), I had no side effects but it didn’t work at all so I stopped it. When I was first put on venlaflaxine the side effects were manageable but it was stopped for a while and when I went back on it the horrendous side effects started. I’ve had it explained that the effectiveness and side effects are pretty much unknown entities for these meds generally, and that as our metabolisms change so does the effect on us and are pretty often prescribed as the easy option. I suppose they are effective for a large proportion of people but for me I don’t take anything anymore as they don’t make enough of a difference and coming off them is usually horrible. Of all the ones I’ve been prescribed, Fluoxetine was probably effective for the longest period for me and had the least of the side effects.

    Sorry if that’s a bit rambling and not helpful.