ASD and sensitivity to medications – my experiences

Okay so here I’m going to talk about my medication in a nutshell, but I will go into it deeper later:

The medications I have tried have been ADHD medication such as:

Methylphenidate, Lisdexamphetamine and Concerta.

Medications I have tried for mood: 

Sertraline, Escitalopram, Fluoxetine and Mirtazapine

I have also tried Propranolol for anxiety.

I have noticed that the children’s dose seems to work like the adult dose – for example:

I have tried the recommended starting dose for Citalopram, the starting recommended dose is roughly 10 mg, I have started in the past on 5 mg and I couldn’t tolerate 10 mg due to side-effects.

I should add I also found therapeutic benefit in the citalopram 5 mg dose.

I have started lisdexamphetamine at 20 mg per day on extended release and that was borderline too much, side-effects were okay until it subsided and I was left unable to have a full night’s sleep.

I will link a “trip report” on my ADHD medication trials at the end of the post.

CONCERTA 18mg

My first ever ever medication on treating ADHD was a medication called Concerta it was 18 mg dosed which would roughly translate to 3 doses of ~5mg instant release Ritalin it would be a capsule that would work via an OROS system which basically means it is drawn out of the capsule via an osmotic release system – the the concentration gradient between the body and pill would allow the medication to effuse from the capsule delivering a slow release dose.

The thing is this medication is really working well but I felt super on-edge, irritable, anxious and overstimulated really even though it worked for 6.5 hours I couldn’t justify the side-effects.

All these medications apart from the mood ones I’m talking specifically here about the ADHD medication have all affected my appetite.

METHYLPHENIDATE IR 5mg

The next port of call was instant release Ritalin or Methylphenidate 5 mg a.k.a. “the child’s dose”.

My prescription was 5 mg twice daily and I started off taking that and realised the 5 mg would be a similar effect to the other medications in that it was just on the border of being too intense so it would be quite uncomfortable to do long-term.

I tried 7.5 mg in one dose and that was bearable but it was starting to creep up in intensity with side-effects and the therapeutic effect ended. I also tried 5 mg three times daily which just felt like I was strung out all day and that wasn’t great either.

I came to the conclusion that I’m sensitive to medications after all that trialling so I decided to take 2.5 mg of methylphenidate 3-4x daily (every 90 mins) and it greatly improved my symptoms with both less side-effects and an improvement in my baseline concentration and performance.

DIAZEPAM 2mg

I also have a prescription for 2 mg of diazepam. I’m allowed six of these tablets once every prescription.

A standard diazepam tablet is 5 mg but I am given 2 mg to start off with because I am very sensitive to medication and it works.

I have had to use 2 mg diazepam tablets in events of panic and sometimes when my Ritalin has started to become too over stimulating and overbearing.

WARNING: Diazepam is very habit forming and your body becomes reliant on it to deal with its anxiety – I am no longer using this medication, as tolerance started creeping up on me. 

FLUOXETINE 10mg

So currently I am trying fluoxetine at 10 mg. I am currently on day four. Hopefully, this will be the medication for me but as I have discovered today mixing a new SSRI medication and your recommended 5 mg twice a day dose of methylphenidate can cause lots of side-effects brackets duh.

• an edit 1 week after – this drug caused horrible anxiety, panic attacks, breathlessness, palpitations and low appetite at around day 5 and became worse even after discontinuing. It may be different for you but I have just about recovered and I am now currently on day 2 of Escitalopram again.

MODAFINIL 100mg

I’ve also thought about the possibility of Modafinil. I’ve tried Modafinil in the past but I haven’t been prescribed it. Last time I tried it it gave me an anxiety attack because I thought I was going to get an allergic reaction and develop Steven-Johnson’s Syndrome.

It is still an option I believe I hand the reason I believe it’s still an option is because of 

its length of action and because it is a dopamine reuptake inhibitor now the great thing about the dopamine reuptake inhibitor is that there is no adrenaline involved – lower likelihood of becoming anxious.

I just thought that I would let you know that this is a thing and it has been observed many times in online forums.

It would make sense to me that overstimulation hypersensitivity to sensory overload torch sound taste smell hearing and so on that would that is all based on nerve impulses you know what else affects nerves drugs so if you can get if you’re touched by someone and you feel that more sensitively than somebody else would who is neuro typical then the logic would follow that if you took a 5 mg dose of methylphenidate you would feel that a lot more strongly than your neurotypical counterpart would.

PROPRANOLOL 5mg

I only tried this for one day and I actually became paradoxically even more anxious because I was worried that its beta-blocking effect may stop my heart (especially due to how calming it was). Health anxiety then had the effect of causing chest pains, panic attacks and finally self admission to A&E not long after. Discontinued.

Note: this is a risky drug to prescribe if you have asthma.

SERTRALINE  25mg

This was my first ever psychiatric medication, it seemed to take the edge off my anxiety but it gave me unbearable tinnitus.

MIRTAZAPINE 15mg

They seem to do well with my depression working almost immediately with my sleep and mood. However, it made me insatiably hungry – I ate 5000 cal in one day, almost double what I usually do. 

ESCITALOPRAM 5mg

This drug seems to be the one. In the past I have been on it for almost 8 months. I tapered off of the drug because I thought that I didn’t need it anymore (spoiler: I did). This drug really helps my anxiety by letting me think through anxious thoughts and it helps my physical symptoms too, like palpitations and air hunger etc.

As Ritalin is a stimulant, it is important to counteract any anxiety inducing effects it may have so it can be therapeutic.

“Trip Reports”

*(Unedited) Trip reports:

• Ritalin IR 5mg – improves productivity (can make me feel like i’ve got more done than i have though), attention to detail hasn’t improved much, works for around 2-2.5hrs. unpleasant emotional side effects of the medication include: dysphoria/depression/anxiety/apathy/anhedonia.
• has had instances of anxiety/paranoia/hallucination/illusion?
• It doesn’t make unappealing tasks any easier or less overwhelming e.g. menial jobs, non-essential activities like reading books. Makes reading, comprehension, working memory and memory storage better.
• Concerta 18mg seemed too intense, maybe Ritalin LA 10mg? or Vyvanse?

ELVANSE 20mg

• 1-1.5hr onset, very smooth
• Increased toilet frequency
• Started to feel anxious from T+4hr (apart from this very manageable so far)
• Anxiety completely disappeared at T+5.5 – also coincided with the cancelling of Amazon flex – less social anxiety, but any other anxiety is amplified quite significantly.
• T+7 feeling calm, positive, but not majorly focused. Going to try and study and/or blog.
• T+9 still felt calm, getting more tired, didn’t get any study or blogging done – played games.
• T+12, very smooth comedown, not ready for sleep just yet though.

day 2

• T+6 noticeable slump in effects, going to see if food helps. Gym at T+10 ish.
  
• Procrastination is more efficient.
  
• doing things i think i should be doing rather than what i’m drawn to
  
• general dysphoria/lack of zest and colour to life, mood is more stable so far.
  
• dysthymia and general anxiety – maybe more aware of underlying issues now adhd isn’t in the mix so much.
  
• mood issues are FAR less problematic than on ritalin, perception quite normal like i’ve had a coffee – no significant altering of consciousness.
  
• I feel like I’m being less productive than I actually am – subjective? Am I kidding myself?
  
• productivity example – wake 7am, by 10:15pm: breakfast, brushed teeth, written 350 words for a blog post, done 45mins of A-level Chemistry practise Q’s, written these notes. – then what?
  
• concerns: 1. insomnia/broken/light sleep, 2. comorbidities, organisation skills and structure, 3. motivation and/or willpower drastically diminishes after T+6 generally +/- 30mins, 4. same weird “hearing things” – infrequent, but worrying…
  
• beyond the slump I still feel like I’m mentally sharp, but without the drive to do anything with it (at least not uninteresting things)
  
• I haven’t been weight-lifting at any time before T+10, mainly to improve sleep and to avoid anxiety attacks like when I lifted on ritalin. I was stronger and had a better workout, however I felt very panicky, lightheaded and dizzy. Weightlifting on the tail end of elvanse is good so far, but not as enjoyable as it was mid-ritalin.
  
• ASD, depression and anxiety combining to form PseudoADHD?
  

Attempt 3: Elvanse 20mg 12/01/22

5:15am empty stomach taken

6:30am begin to feel comeup

7:15am I dressed, had breakfast, came downstairs and logged breakfast calories. – toilet break.

9:00 – took the car to the garage, walked back. Toilet upon return.

9:38am – toilet 3 

10:15am beginning to tire – having a snack.

10:30am lying in bed, very tired.

12:03pm still in bed

10:00pm nauseated and depressed all day

Should I read medication reviews?

You can do it, it does help to give you an overall idea at how successful the medication is and which common side effects it can have, and whether or not they are acceptable in the light of the positive, therapeutic effect. Overall, however, I advise to take online reviews with a pinch of salt as they are not “one size fits all” – I’ve had awful experiences with Fluoxetine 10mg, yet my friend is on 20mg of the same drug and he is having a perfectly fine experience with it. 

Just try the medication your healthcare professional prescribes to you, you can always stop taking it if you need to. Also, don’t be afraid of asking them questions if you have any concerns about the medication, or you might want to try an alternative medication you have had your eyes on and have been researching – mention it, they will listen to you and work with you! Granted, you most likely won’t find a perfect match at first try, or ever, but you will likely find something that helps ENOUGH. I thought that my first psychiatric drug would fix all my problems in life and that couldn’t be further from the truth…However, they have made my life easier to handle than it was before without medication.

What about therapy?

I have had many, many types of therapy – mainly for depression and anxiety, some of them I found ineffective, some were very effective and some were sort of effective.

Cognitive Behavioural Therapy (CBT) – This has been the most effective flavour of therapy so far, It has helped reduce my social anxiety and health anxiety, I am interested in its effect on depression but I have yet to test it. CBT involves a more practicable method to reduce mental health issues via homework and behavioural experiments to “prove” to yourself that your beliefs aren’t as strong as you once thought.

Talk Therapy/Humanistic Approach Therapy – This I have had mixed results with, I feel like it does improve symptoms, but it is much more subtle in its teachings than CBT and it has you coming away from a session feeling positive, but without the “takeaway” of CBT that needs you to repeat lessons so that they stick, the Talk Therapy seems to be more like a stress release and an indefinite method of relying on someone to vent to. Now, I know plenty of people who have a few sessions and they’re significantly better, maybe I’m just unlucky in that regard. 

Alternative Therapies – EMDR I’m looking at you! (Eye Movement Desensitisation and Reprocessing), Hypnotism…you don’t escape either! 

These therapies (in my opinion) were an absolute waste of money, granted I did only go for one session of each, but for good reason – I took home 0 value other than the strange experience I had just had.

A note on the therapist – This is MASSIVE, not only is it the type of therapy you practise, but also the person that you have practising it on you that matters a MASSIVE amount. I can’t tell you enough how important it is to “click” with a therapist, you’d think that therapy is therapy, but no, a good therapist to a subpar one is the difference between your best friend and a drinking acquaintance you see quite infrequently down the pub. Yes, you like both and ultimately they serve the same purpose in life, but the best friend will do so in a way that makes you appreciate the DEPTH of the relationship and just how much more that brings to the table.

I’ve heard a lot about meditation…what’s all that about?

Meditation has helped me quite a lot. I still consider myself a complete beginner, but I think I can testify to its usefulness and benefits.

MY CONCLUSION:

As of today I am doing just fine on 2.5mg of Escitalopram daily and Methylphenidate 5mg 3x daily.

Note: we are still trying to find the right dosage.