Posted on March 30, 2022
Being autistic is complicated (to state the obvious). It’s never just one thing, in my experience at least. It’s not even one thing on one day, one thing in one moment. It’s good things and bad things all wrapped up together and while I can advocate and applaud ‘Autistic Pride,’ I’m not sure I’m there yet. But I can appreciate the good and the bad and so, considering it’s World Autism Acceptance Week, I thought I’d post something about just that: the good and the bad and learning to live with them…
Autism, as we know, is a neurobehavioural condition so the traits associated with it are right down in our wiring, just like the rest of our personality traits: being autistic is at the very core of us and everything else is built upon that foundation. There are some things about being autistic that mean a lot to me, things about myself that I love and value, including…
But there are also things about being autistic that I hate, that I struggle with, that cause me problems, and upset me deeply. I know it’s not healthy to focus on the difficult parts (unless you’re, for example, working on something specifically in therapy or counselling) but I do believe that acknowledging the negatives is important and validating. Endless positivity is not helpful and can end up being harmful so here are some of the things that I hate about being autistic…
So, this was a bit more exposing than I’d expected when I started writing. But there it is. Almost a decade later and I’m still figuring out what it means, to me, to be autistic. It’s complicated and it’s hard and some days I’m really proud that this is who I am. I guess the goal is to have more of those days.
Category: about me, adhd, anxiety, autism, bpd, chronic fatigue syndrome, depression, diagnosis, emotions, favourites, food, mental health, music, ocd, writing Tagged: adhd, adhd inattentive type, anxiety, asd, attention deficit hyperactivity disorder, authenticity, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, borderline personality disorder, bpd, depression, honesty, inattentive adhd, inattentive type, independence, lack of independence, loyal, loyalty, mental health, mental illness, obsessive compulsive disorder, ocd, passion, passionate, purpose, sensory issues, sensory overload, sensory sensitivity, stubborn, tenacity, waaw, waaw 2022, world autism acceptance week
Posted on December 18, 2021
TW: Mentions of self harm and suicidal thoughts.
And ten months after being diagnosed, I finally started taking medication for my ADHD. If you’ve been following this blog, you may remember that I was diagnosed back in January and, due to the disruption it would’ve caused at a crucial point in my Masters, I had to wait to come off my antidepressant (Phenelzine is contraindicated with stimulant medication for ADHD) and then start the ADHD meds. But, as of mid November, I could start taking Xaggitin XL (definitely my most strangely named medication so far); I’d researched it and read multiple accounts that it hadn’t affected creativity and my ADHD specialist didn’t have a problem with trying it when I suggested it. And as I always do, I kept notes; it helps me to remember what each medication was like and hopefully it can be helpful to anyone who might be taking or about to take the same medication. But, as always, it’s important to state that this is a medication I was prescribed by my doctor, according to a plan that we decided on together. This is just my experience; please speak to your doctor if you have any questions about your medication.
WEEK 1 (18mg)
I started to feel the side effects straight away. From the second day, I was experiencing overwhelming, almost constant nausea. It got worse if I rushed around or even stood up for too long and I’d end up curled up on the floor, focussing on just breathing until it passed (by the end of the week, I had figured out and was getting better at avoiding the things that made it worse). That combined with a massive loss of appetite meant I really wasn’t eating much, although most days I managed to force at least one meal down. I also started having trouble with my sleep. It would take me hours to get to sleep – usually between two and four am – which meant that my sleep schedule started to shift. It was so hard to wake up in the morning and that just meant I ended up going to sleep later and as hard as I tried, I couldn’t keep my routine from moving several hours around the clock.
My mental health also took a hit, which wasn’t entirely surprising since I no longer had the Phenelzine in my system. I started to feel overwhelmed and fragile. My anxiety increased and I even had a panic attack, not something I usually struggle with. My depression started to creep back in too; it wasn’t too bad but it was there.
The cough was still hanging around and I had multiple migraines (some that I managed to cut short with medication and some that took me out of commission completely) but both of those could’ve been left over from coming off the Phenelzine, having been big problems throughout that process. I’m not sure.
The nausea, the lack of appetite, and the trouble sleeping persisted. As did the cough (I’ve taken several COVID tests since it started and they’ve all come back negative). I also felt even more scattered than usual: I couldn’t focus on whatever I tried to do and I started losing my train of thought mid-thought, which was very stressful. I felt completely unable to do anything.
By the end of the week, it felt like everything was starting to fall apart. I was really struggling to write. What I’d thought was just a few bad days (unpleasant but not unheard of) turned into an awful week; the internal flow that makes writing so easy and so calming was suddenly absent and even the forms of writing that have always felt easy (regardless of whatever’s going on with my mental health) felt awkward and forced. My mental health had started to get really bad – my anxiety and depression had gotten a lot worse – and that just made it worse. And on top of that, I had started to have suicidal thoughts again, which I haven’t had – consistently, at least – for years.
WEEK 3 (36mg)
The nausea and lack of appetite were still really bad so I wasn’t eating much. I tried but it was really hard. Sleeping was also difficult. I was wide awake all of the time – like I was highly caffeinated – even late into the night, which didn’t help in my attempts to get my sleep schedule back to normal. Most of my nights were disturbed one way or another and I had one night where I never went to sleep at all; I didn’t even start to feel sleepy until I’d been awake for over thirty six hours. It feels very strange considering that even three months ago I could barely stay awake, even with two Red Bulls in my system; talk about from one extreme to another…
I was still struggling with concentration and my mental state was only declining. I was consistently depressed – feeling hopeless and alone – and there were days where I struggled to get up, not just because of the nausea but because everything felt so overwhelming and difficult. The suicidal thoughts continued and I did self harm once. My anxiety also got worse and I had another panic attack.
The nausea got even worse, lasting all day and making it even more difficult to eat (or do anything at all, to be honest). And having no appetite didn’t help with that. My sleeping was still awful too, despite how physically exhausted I was starting to feel after so many nights of poor sleep. The cough and difficulty concentrating continued and I had a couple of days that were monopolised by migraines (or maybe one migraine that never quite went away).
My mental health deteriorated further. I was incredibly anxious and my depression just got worse. I’m pretty sure it’s the worst my depression has ever been, based on what’s been going on in my head. The suicidal thoughts continued but they are different to what I’ve experienced in the past. It’s been a lot. I can’t know for sure whether this is down to the lack of antidepressant in my system, a reaction to the ADHD meds, or both.
That last week was a big week, which was unfortunate considering how awful I was feeling; it made it hard to enjoy or get the most out of those events – going back to therapy after several months away, my Mum’s birthday, and a visit from a friend for both work and fun – and then I felt physically worse afterwards, physical exhaustion and pain in addition to the ongoing side effects of the medication.
So it’s been a rough month. The nausea and trouble sleeping has been awful but the anxiety, depression, and suicidal thoughts have been worse by far. And losing the ability to write has been unbearable. After speaking with both my psychiatrist and ADHD specialist, it’s been decided that I’m going to stop taking the Xaggitin and try Bupropion, which should – hopefully – help my depression as well as my ADHD. So that’s another month gone and the waiting game begins again.
Category: adhd, anxiety, depression, emotions, food, medication, mental health, self harm, suicide, treatment Tagged: adhd, adhd inattentive type, adhd medication, anxiety, attention deficit hyperactivity disorder, concentration, cough, depression, focus, inattentive adhd, inattentive type, insomnia, loss of appetite, medication, mental health, migraine, nausea, panic attack, side effects, sleep, suicidal, suicidal thoughts, trigger warning, tw, xaggitin, xaggitin xl
Posted on November 20, 2021
The decision to change my medication has been a long time coming. I was diagnosed with ADHD back in January but, for various reasons, I haven’t been able to take any medication for it up to this point. As I said in this post, my specialist wouldn’t allow me to take any of the classic, stimulant medications for ADHD while I was still taking my current antidepressant, Phenelzine. So, in order to take anything for my ADHD (other than the less common medications that would only make me even drowsier than I am currently), I would have to come off the Phenelzine and either try a different antidepressant or try going without one. That all felt too much to manage while I was doing my Masters – it feels like a lot to manage now – but now that the Masters as is over and I’m already in a period of transition, it felt like it was time to come off the Phenelzine. The side effects were going to throw a wrench in several plans but that was going to be the case regardless of when I decided to do it and I hated the feeling of having it hanging over me. I know I need to do it but a big part of me really didn’t want to (and is still sceptical to a certain degree): over the last ten years, I’ve found it all but impossible to write songs during the periods when I wasn’t taking Phenelzine so it’s not surprising that it’s not exactly an easy decision. But if I want to get out of this limbo state, then I need to try.
So, beginning the 18th November, I started to reduce the dosage of the Phenelzine. For two weeks, I took half my normal dose and then I went another two weeks without anything in my system, giving my body the time to filter out any traces of the Phenelzine (known as the wash out period) and ensuring that way any new drug I take won’t result in a negative interaction. As always, it’s important to point out that this is a plan I’ve worked out with my psychiatrist and my ADHD specialist and is specifically tailored to me. If you’re making any changes around any medication you’re taking, please consult your doctor first.
WEEK 1 (Monday 18th October – Sunday 24th October)
For most of the week, I felt fine, which surprised me: usually, if I miss a dose of Phenelzine, I get hit with a headache pretty quickly but for some reason, that didn’t happen this time. I was tired and a bit more emotional than usual but nothing that out of the ordinary, nothing that couldn’t just happen anyway. I think those first four days lulled me into a false sense of security.
It hit me on the Friday. I felt weak and shaky and had a really unpleasant headache. And that turned into feeling absolutely awful over the weekend: I had debilitating migraines; I felt nauseous, shaky, and lightheaded; I thought I might faint every time I stood up. I also developed an annoying cough and, after multiple COVID tests, I had to assume it was part of the withdrawal and not COVID related (thank goodness – I don’t think I could’ve coped with that as well and I’m glad my family didn’t either).
WEEK 2 (Monday 25th October – Sunday 31st October)
The cough and the migraines continued into the middle of the week and then, fortunately, they started to let up. My sleep schedule was utterly screwed up: I was struggling to get to sleep and not drifting off until between two and five am and then, because I was so exhausted, I was sleeping in to the middle of the afternoon. And as hard as I tried, I couldn’t correct the schedule. I also had really weird, really vivid dreams that took me a while to drag myself out of and separate dream from reality. I did have a sudden, deep dip in mood where I felt really awful and discouraged about the various things I’m currently working on, which was scary: my big fear about coming off the Phenelzine has been returning to that really depressed place I was in before so to feel it happening was horrible. But fortunately it didn’t last and I’ve tried to just stay away from things that trigger those kind of feelings, for the duration of this changeover at least.
By Sunday, things had started to improve and I was feeling a bit more human. Having said that, I was not looking forward to the rollercoaster that the next two weeks were likely to be.
WASH OUT PERIOD
WEEK 1 (Monday 1st November – Sunday 7th November)
The beginning of the week was okay with just minor headaches and some nausea, both of which were pretty ignorable. And apart from sleeping really deeply and the continuation of the weird, vivid dreams, I felt okay. But by the end of the week, I was feeling very tired and just generally unwell again. The cough had faded but it picked up again and then, on Sunday, the nausea was back in full force.
WEEK 2 (Monday 8th November – Sunday 14th November)
This was a very big week. Unfortunately. It was a really bad time to be coming off a medication but, as I said, it’s almost always a bad time. There’s always something happening so I just had to get it over with. But this week held both my graduation from university (I had a great time but physically, I did spend the day counting down to the next dose of painkillers and – on several occasions – actively focussed on not throwing up) and my Granny’s Celebration of Life service (thankfully, by that point, I was feeling a bit better and was able to just focus on the day without too much distraction). Given those two huge things, I spent a lot of the week dealing with a lot of physical exhaustion and pain.
The cough was ongoing and I had migraines for most of the week, although they did lessen in intensity by the end of the week. I was nauseous, shaky, and overly emotional but, again, that had mostly passed by the weekend. On the Sunday, I was a bit weak and nauseous but I felt a lot more human than earlier in the week.
So, four weeks later, I’m finally starting medication for my ADHD. I’m excited but I’m also nervous; I haven’t had many good experiences with medications and it’s taken a lot of trial and error to find the only one that’s helped so far. So it’s a bit scary to be starting over with a whole new category of medications but I’m trying to stay… cautiously optimistic. I’ve started Xaggitin XL and now, I guess, I just have to wait and see.
Category: adhd, depression, diagnosis, heds, medication, mental health, treatment Tagged: adhd, adhd inattentive type, adhd medication, antidepressants, anxiety, attention deficit hyperactivity disorder, depression, inattentive adhd, inattentive type, maoi, maois, medication, medication withdrawal, mental health, mental illness, mono amine oxidase inhibitors, nardil, phenelzine, wash out, withdrawal, withdrawal symptoms, xaggitin xl
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.