Fear of medication

Yep. Yep.

I’m sorry - I would be very anxious in that situation too. They really SHOULD listen if you are having problems with side effects - that’s their job after all! 
I don’t think they always acknowledge that if your mental health is already that a bunch of really scary side effects from medication is an extremely challenging thing to cope with - and they should be understanding and sympathetic about that (and act on it). 
sending best wishes to you Paige - I hope you can find a medication that works well for you, or can find other ways to feel better :) 

Yes I'm the same. Mind goes into overdrive and I get extremely anxious and in a panic. In the last two years I've had lots of medication from doctors, started with sertraline and now they've got me on olanzapine but that's not working especially well so I dread what they'll try me on next :( hate it so much. I was a lot better before they started giving me different medication all the time. But when I tell them how bad it affects me they don't listen it's so frustrating.

My primary care office does hour long visits, has health coaches instead of MAs (sounds the same but way more time to spend with patients - many of the ones in my office have bachelor's degrees, but I digress). We work on capitation, but very little red tape. We do a lot of things in our office that others send to urgent care or the ER. Lots of patient education. Almost always have same day/next day appointments available. And they take care of their employees.

It's possible if you cut the corporate red tape out of the picture and think outside the box.

Yes,and it turned out i had ADHD and Autism and a lot of medication that affects your brain such as antidepressants do not often work how they are supposed. i don't know if my sleep problems (cant fall asleep or maintain sleep) are caused by my ADHD, Anxiety or all the medication my previous General practitioners prescribed like skittles. 

Yes, me too. It’s been so good to join this community and realise that other people have similar struggles. In the past I’ve always blamed myself. My Dad always used to say I was “being silly” when I had fears about things. I felt terrible when he said things like that. We knew nothing about autism - it wasn’t on our radar at all. 

I sorry you're going through this but it is comforting to know I'm not the only one. 

Yeah, best not to dwell on the leaflet - read it to be aware, but not worry about.

You have to be careful as thoughts/worries can create their own symptoms : psychosomatics.

Reading a leaflet can quickly turn to "This leaflet says I might suffer from increased anxiety, oh my god, how will I cope with that, I get enough as it is, I'll be crippled, ..etc, AARGH!"

I'm the same with the leaflet, when I read the side affects it makes me really anxious and worried.

I am the same - very reluctant to take medication. About 15 years ago I was prescribed anti-depressants for my anxiety - I was extremely reluctant to take them but eventually felt so bad that I did - and I had the most terrible reaction to them! Unfortunately this only confirmed my fears about medication - and now I am even more reluctant than ever. As you say - I like to be informed - but when you read about side effects on any drug they always sound dreadful and alarming. I try to be as healthy as I can in terms of diet and exercise in the hope of avoiding visiting the doctor or taking medication as much as I possibly can.

Yes I am very suspicious of any medication and don't like to take anything unless absolutely necessary. I am particularly reluctant with any medication that impacts brain function. My doctors have repeatedly tried to prescribe me antidepressants but I have always refused. I am a scientist so I will sometimes even go off and read the papers and studies/ clinical trials on the medication and I always find a 'rational reason' of why I don't want to / shouldn't take it but I know that that is just a rationalisation for something that deep down I do not want to do (because of course there is also often a lot of evidence that the medication could be effective). In case of antidepressants or anti-anxiety medication, I have realised that the thought patterns that cause me problems are also those that make me good at what I love and make me who I am. I think this is one of the reasons I am so hesitant. 

I am also in general careful with medication as I suffer from a lot of digestive issues anyways and therefore am even more hesitant to take anything... 

I like to read the information leaflet of all medication as well (as well as researching it)- I like to be informed. But I am very aware that it usually sounds bad on paper- have you ever read the leaflet for paracetamol or ibuprofen? I wouldn't take those unless absolutely necessary but I do feel that those are accepted by most people to be relatively ok- so I found it quite nice for comparison to read those leaflets too. I like as much info as possible but maybe you might prefer to not read the leaflets at all to limit anxiety? 

For me the fear of taking anything even extends to the multivitamin that my dietitian keeps telling me to take... so I'm not really behaving super rationally here...

I so relate to what you’ve written here Dawn. I really struggle in a very similar way. I have wondered in the past if autistic people are more sensitive to medication and have more side effects. One thing I do know is that women often have more side effects - because the dosage of most drugs is designed in a ‘one dose fits all’ way - and women are usually smaller and lighter so the dosages are in essence higher for women. 
I also have a fear of doctors and hospitals etc.  I spent 16 weeks in hospital when I was a toddler and I wonder if it started with that experience. Either way my anxiety about medical things is now severe. I’m exhausted by all the anxiety I live with on a daily basis, 

I’ve only tried Citalopram for anxiety and it was a disaster for me. Appalling, frightening side effects that meant I couldn’t continue with it. Took me ages to get over the psychological impact of that experience too.

Thank you!

CBT can be difficult for autistic people, but it helped me just to think less extreme about things, which is what CBT is really about - what we think leads to feelings, and if we can think less extreme or better abou things, then bad feelings will reduce and also spending time thinking about good things will help.  

Autistic people can though be affected by things that aren't thoughts, such as sensory triggers and differences or difficulties in processing internal and external things.  CBT can't really help there, apart from helping to manage any thoughts that are triggered that can worsen things.

Mindfulness can help but again some autistic people don't find it works for them.  Normal mindfulness where you focus on breathing can be difficult or even raise anxiety, in my experience so that might explain it.  Mindfulness is about focusing on your senses rather than thoughts - your brain can only focus on thoughts, or focus on senses, it can't do both at the same time.  You can only focus for a second or so on senses and then the brain will focus back on thoughts, so you have to keep focusing back on the senses.   I read that in Ruby Wax's book 'A mindfulness guide for frazzled' and it made a big difference.  I start to focus and keep refocussing on background noise, or music, and that really worked, you get a break from thoughts and the feelings reduce.  Its something to do everyday, and whenever you need to focus.

Thank you, my daughter does have Promethazine, which I assume is the same thing. I agree, this has actually been really helpful for her when she's really struggling. I know she's tried to tell the voices to stop and we've talked about making fun of them but it hasn't seemed to have helped so far. CBT also hasn't even touched the surface, even though she's really tried to practice some of the techniques, but I agree she needs to find something that gets her head into a happier place. We'll keep searching. Thank you for replying!

I had a bad experience with aripiprazole myself, and Respiridone which is commonly given to autistic people.

What worked best for me is Promazine, and can take it up to 4 times a day if I need to.  It is sedating so I have a low dose otherwise I wouldn't get much done.

Psychiatrists can be funny about you suggesting a particular medication, but its worth trying, or try other ones and see if anything else might help.

Medication can help if anxiety and sensory responses can't be controlled another way, but it might be she needs help to manage her thoughts/feelings more than anything.  Mindfulness might help, maybe CBT techniques to think more healthily, and interests and positive sensory experiences she can turn to to feel better.  Things that might help with the voices is she if shouts 'stop!' or 'not now' as taking control of what's going on can help.  Also make fun of them, laugh at what they say, and that might reduce any bad effect they have.

Please don't feel like you have to answer, but out of interest, what medication did you find worked in the end? My teenage daughter has tried sertraline, fluoxetine, and aripiprazole, all of which seem to have made her worse rather than better. Her anxiety and sensory overload is so bad she hears terrible voices almost constantly, making school impossible. I believe we need to give up on all medication but she's not so sure.

Yep! All long term medications worry me. Even the lanszoprolzole for my hernia bothers me.

I absolutely will not accept medication for anxiety, despite heavy pressure to do so further fuelling my fear of doctors. I just wish they'd leave the issue alone. Any side effect, or even the fear of side effects would make my medical fears worse.

Now that I know I'm autistic, I'm pleased I never caved in. Apparently some of those things can either have zero beneficial effect for us, or give us a ton of side effects. Not that I'm psychotic, but one or two of the anti psychotic can even cause autistic catatonia, apparently.

It’s at least some comfort to know I’m not alone. I’m sorry you have this problem too. I really do worry that one day it’s going to cause me serious problems as I avoid doctors and medication whenever I can.