Posted on March 12, 2022
TW: Mentions of self harm and suicidal thoughts.
In the last week of January, my psychiatrist told me to stop taking the Bupropion since it was so obviously having such a detrimental effect. In theory, after the wash out period was complete, I’d start taking a new antidepressant, Moclobemide. It’s an MAOI, like Phenelzine (the antidepressant that I’ve ever had the best response to – the only one I’ve had a halfway decent response to), so my psychiatrist thought it was the best option. But I was so depressed that I just couldn’t take it: knowing how these medications affect me, I just didn’t feel emotionally capable to handle the change.
But then, after a hellish few days and some kind of breakdown, I started taking Moclobemide. At that point, it was self preservation: I didn’t want to but I knew that I couldn’t keep feeling that awful – or worse – because something terrible was going to happen if something didn’t change.
This change was somewhat complicated by the fact that I was taking other medications at the same time. I was taking a lot of Diazepam with my anxiety so bad and I was also taking 20mg of Propranolol (recommended for anxiety and POTS – which was diagnosed by a cardiologist after a first round of tests – although I’m not sure it’s doing anything for either).
As is always the case with posts about medication, this is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
WEEK 1 (150mg twice daily)
The first week was bad. I was completely overwhelmed by my anxiety and needed constant Diazepam to be even vaguely functional, just to get out of bed. I was very depressed, feeling exhausted and hopeless and worn down. I was still having thoughts about self harm and suicide although not as much as I had been but I just felt utterly overwhelmed, by everything the world wants from me. Life just felt like too much.
I was still struggling to fall asleep (there was one night when I was still awake at seven thirty am). My sleep schedule was completely fucked up; I was almost nocturnal. And even then, I was falling asleep in the day, regardless of how hard I tried not to. As I said, it was a whole mess. I was exhausted all of the time.
My struggles with food continued too. I could barely eat and on the rare occasion where I did feel able to eat, nothing appealed – at all – or satisfied the feeling. But between my mental health and my sleep issues, food felt like the least of my problems.
I also spent more than half the week with at least a low level migraine, which wasn’t exactly pleasant.
The second week was also pretty tough, although in a few different ways.
I was still feeling very anxious – the Diazepam was only doing so much – and my depression was still very present. I just couldn’t engage. I was miserable. I felt very overwhelmed; life just felt like it was too much.
At the beginning of the second week, I started taking Temazepam – prescribed by my GP – to help with my sleep. It gave me a couple of good nights but after that it didn’t seem to do much. Most nights, I was still awake for hours and struggling up in the afternoons; waking up was miserable. I was exhausted and sleepy and kept falling asleep in the day, despite drinking Red Bull, something I haven’t felt I needed in ages.
I did have one pretty intense day: despite only getting about three hours sleep, I was up early and writing a song from start to finish – something I haven’t been able to do in months. It’s usually a sign of how good or bad my mental health is: things are getting bad if I can’t write. I’m not jumping for joy just yet but I am cautiously optimistic that if this is possible, things are improving. I felt really good for a couple of hours but then all of the bad stuff crept in again: I went to bed feeling exhausted and overwhelmed by my anxiety and depression.
At the end of the week, I spent two days in and out of a hospital in London, having tests done (I wasn’t taking the Propranolol for a few days as advised so that it wouldn’t affect the results). Just being in the hospital and the staff’s general lack of understanding around Autism was stressful and frustrating and exhausting. The first day was quiet but it was hard to relax with the blood pressure monitor going off every twenty minutes. The second day was more involved with more than three hours of tests. It was exhausting – I could barely stay awake for the rest of the day – and my whole body hurt afterwards, so badly that even getting upstairs when we got home was a struggle. I don’t have a whole lot of faith that these tests will show anything different than the first round (which resulted in the POTS diagnosis) or in medical tests in general anymore but I guess we’ll find out what they say in a few weeks.
At the beginning of the week, I officially gave up on Temazepam since it didn’t really seem to be doing anything. My GP had prescribed melatonin for when the Temazepam ran out so, with her blessing, I started taking that instead. It definitely improved my ability to sleep: after months of being awake for hours on end, I was falling asleep within half an hour every night. But I was still sleeping late – into the afternoon – and feeling sleepy in the day. I had several RedBulls in a week for the first time in months, which is a step backwards that I’m not happy about. I don’t know whether it was the melatonin or a side effect of the Moclobemide (not unlikely since I had the same side effect with Phenelzine) but, regardless, I hate it. This was one of the reasons I was so excited to try the ADHD meds; I thought I might finally feel something other than exhausted or sleepy or tired.
My chronic pain kicked up again, which was deeply unpleasant. My whole body hurt all week: every joint felt ache-y and crunchy and grind-y. I took painkillers throughout the day but the pain woke me up at night almost every night. But the only painkillers that help are ones that I can only take for a few days at a time and when those three days ran out, I was back to Ibuprofen and Paracetamol – neither of them do much – which was miserable and so frustrating: this has been going on – on and off – for almost two years and all I have are sporadic three day periods where I’m somewhat pain-free. The lack of progress is enough to reduce me to tears.
Mental health wise, things were up and down. Some days were okay and I actually got things done for the first time in ages, but some days were really hard. My anxiety was still bad and I was restless and uneasy; I didn’t know what to do with myself. I just felt like I was making everything I worked on worse. I was depressed, feeling overwhelmed and hopeless.
WEEK 4 (450mg daily)
I was sleeping but sleeping restlessly and waking up a lot. And come morning, it was such a struggle to wake up. I would fall asleep again and again; staying awake felt impossible. I don’t know if that’s the melatonin or something else but it’s pretty miserable. I feel like I cannot open my eyes, cannot make my hands work. It’s not fun. At the other end of the day, things are generally better. It can take a while to get to sleep but it’s nothing like it used to be. It can take a while to get comfortable, wind down, relax but I’m still getting to sleep easier than I was without the melatonin.
In the daytime, I was getting sleepy within an hour of getting up and drinking Red Bull almost daily again. It’s not something I want to make a habit of but I was just too tired to figure out what the right thing to do was so I just focussed on getting through the day. But even with the Red Bull, I was tired and sleepy and all I wanted to do was close my eyes. Again, I don’t know if this is the melatonin or the Moclobemide but either way, I don’t know what to do. If it’s the melatonin, I can stop taking that and hope my sleep stays okay but if it’s the Moclobemide, then I’m pretty stuck. I really don’t want to spend my whole life feeling tired and sleepy because this is the only medication that works.
I’ve started working again – a bit, given how unpredictable everything’s been recently – after being completely unable to since the end of last year. That’s been good and hard (and completely exhausting) in equal measure, socialising too. It’s nice to be in contact with people again but so often, at the moment at least, it also makes me feel defective and broken. My friends are telling me about their jobs and their relationships and so on and all I have to talk about are the new meds I’m trying and the new therapy I’ve been thinking of trying. When you’ve been depressed and suicidal for the past four months, there aren’t a lot of light and fun conversation topics to reach for. So I just felt very lonely. I’m not putting that on my friends – I want to hear about their lives – but the disconnect is hard.
My chronic pain was bad too. My whole body was hurting, my joints aching, even my fingers. I still haven’t heard anything from the Pain Clinic so all I’ve got are over the counter painkillers that I can only take for a few days at a time. What I’m supposed to do on the other days, I don’t know; nothing else helps at all.
I’ve realised that I’ve been feeling cold a lot, pretty much all of the time. I’m not sure when it started but it’s been going on for a while. Even with a thick jumper, a scarf, wooly socks, and a blanket, I’m freezing.
Mentally, it was a tough week. I felt very anxious and overwhelmed. My depression was pretty bad too, although not as crippling as it has been, and I was just miserable really. I cried a lot. So, yeah, a tough week.
WEEK 5 (600mg)
My energy and sleep continues to be troublesome. It’s so hard to wake up in the morning: I keep going back to sleep, I can’t keep my eyes open, and my hands won’t work. I’ve found that eating right away helps but I hate it as a strategy; food is the last thing I want right after I wake up. Despite the difficulty, I have been managing to wake up earlier than I have been over the last few months and getting to sleep has been a bit easier (with the help of the melatonin – although it does sometimes feel like I have to focus really hard on falling asleep sleep, which seems to be somewhat counterproductive). But I was still very sleepy during the day, falling asleep accidentally a couple of times, and so tired, although it was a busier week. I was doing more, socialising more, and feeling everything more intensely. There were some really good moments but it was hard too.
And, of course, more activity has resulted in more pain. I’ve been in pain constantly but it’s gotten worse. Multiple long car journeys and more time on my feet has caused problems with my back; I’m sure that with time, sensible exercise, and slowly building up my stamina, things will get better but it’s really hard to be patient. The pain has also been really bad in my hands (from my elbows down to my finger joints), which instantly instills a cabin fever-like feeling inside my own skin. I’m still waiting to hear from the Pain Clinic but experience doesn’t exactly encourage high hopes for what they’ll come back with, if they ever do.
My mental health has been all over the place. Five weeks of this medication and I still don’t feel like I’ve got my head on straight. As I said, I’ve had some good moments this week but I’m still struggling, more than I feel like I should at five weeks of a medication. I’ve had a lot of anxiety and my depression is still very present. My suicidal thoughts aren’t as constant as they were but they are still there. I guess, I just would’ve hoped that, at this point, I’d be feeling better mentally. It’s hard to not lose hope.
So, I’ve been taking Moclobemide for five weeks and while things are very different from day one, I’m still not feeling great. My depression is still a constant, day-to-day battle, which is one thing if I’m waiting for medication to kick in and for it to get better but if this is it, it’s not enough. I’m grateful that things are better – that I can write songs again – but living like this is really, really hard. I just want to feel better. I don’t want every day to feel like a mountain that I have to climb. I guess, I just want to feel normal. Although, having said that, I don’t know if I even know what normal feels like.
Category: adhd, anxiety, autism, chronic fatigue syndrome, depression, emotions, food, heds, medication, mental health, music, self harm, sleep, suicide, treatment Tagged: adhd medication, antidepressants, anxiety, bupropion, caffeine, chronic fatigue, chronic pain, creative block, depression, diazepam, drowsiness, eds, heds, hypermobile ehlers danlos syndrome, hypermobility, insomnia, loss of appetite, maoi, maois, medication, mental health, mental illness, migraine, migraines, moclobemide, pain, pain clinic, pain management, pain medication, phenelzine, pots, propranolol, red bull, self harm, self injury, sleep, sleep schedule, sleep wake cycle, sleepiness, songwriting, suicidal, suicidal ideation, suicidal thoughts, suicide, temazepam, trigger, trigger warning, tw, writers block, writing
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
Posted on June 12, 2021
It’s been a while since I last talked about my ADHD so I thought it was time for a little update. A lot has happened since I was diagnosed, some of which I thought might be worth sharing…
It was a lot to process that I did my BA and have been doing my MA with undiagnosed and unmanaged ADHD but the diagnosis had me looking back over the last few years and a lot of things started to make sense: why I’d excelled in certain areas and struggled desperately in others. Part of me was impressed with how I’d done, factoring in this new obstacle that I’d been unknowingly battling against, but on the other hand, it makes me sad that I’ve had to, you know? It makes me sad that I’ve had to work against my own mind all this time without anyone noticing or supporting me – in this sense, at least. Life could’ve been so much easier.
And now I have to finish my Masters unmedicated.
Because I take Phenelzine for my depression, there’s the risk of interactions with stimulant-based ADHD medication so I can’t take those; both medications have the potential to raise a person’s blood pressure and together, that could be very dangerous. However, given the extreme drowsiness I experience as a side effect of the Phenelzine, I can’t take a non-stimulant medication either due to the high chance that they’ll add to the drowsiness. It’s hard enough staying awake and (somewhat) focussed during the day. I can’t afford to make it worse, especially in this final module of my Masters, the one I’ve been looking forward to since I started the Masters. So it looked like a dead end. But I wasn’t giving up at the first hurdle so I did what I always do: I started researching.
After a bit of searching, I found a research paper about a series of studies done, combining medications when traditional routes failed to work. One of those cases detailed a man who only responded to an MAOI (which is what Phenelzine is) and a stimulant-based ADHD medication. He had to continuously monitor his blood pressure but had no problems and continued on the two medications indefinitely, which allowed him to live a normal, productive life. That seemed very promising, as a starting point for discussion at the very least, so I sent it to both my psychiatrist (who’s been managing my medication for years now) and the ADHD specialist.
My psychiatrist was willing to try, provided I was diligent about checking my blood pressure. Despite our initial ups and downs, we have a really good relationship – and we have had for a long time now – and he always takes my thoughts, opinions, and research into consideration, which I really appreciate even if he ultimately opts for a different approach. So that felt good, like a step in what felt like a positive direction.
We didn’t get a response from the ADHD specialist for weeks. To begin with it was just frustrating but as time went on, I started to swing between despair and anger. I felt like I’d just been abandoned, dropped without a word (something that’s unfortunately happened enough times that it’s become a big trigger for anxiety attacks, episodes of depression, and even autistic meltdowns, depending on the situation); sometimes it feels so upsetting that these medical professionals can just go home at the end of the day and leave all of the struggles of their patients/clients behind while we all have to keep living (and suffering) from them. I know it’s not that simple – that they don’t just stop caring, that they can’t and shouldn’t have to work ridiculous hours – but in my desperate moments, in situations like this, it feels hard to feel supported, to believe that they do care, that you’re not just another file rather than a person struggling through each hour.
After some extra complications due to communication problems, we finally heard back and she was saying a categorical no, having had previous patients respond badly to the combination. While I can understand that, I found it frustrating that she wasn’t even open to trying it. I’ve always responded unusually to medications (proven again and again by my experiences with more than fifteen medications/combinations for my depression – the only one that’s worked is one that’s rarely used) so I was frustrated by the brick wall approach she was taking. My psychiatrist was still open to trying and said he’d talked to her about transferring the medication aspect of managing my ADHD to him since he’s been treating me for so long and has a detailed understanding of my history. But she said no.
So that’s it as far as I can tell. Unless I change my antidepressant, (I have to point out again) the only one that’s helped me, I can’t take medication for my ADHD. It’s essentially come down to choosing which of the conditions to treat, my depression or my ADHD, which just makes me feel so upset and frustrated. Treating my ADHD could make a huge difference in finishing my Masters but I’m getting blocked at every turn. It’s almost worst now than before I knew about the ADHD. Before, I was struggling; now, I’m struggling and I know why but I can’t do anything about it. The whole situation makes me so angry, so angry that I couldn’t do the most recent online appointment. I wasn’t in the right headspace and I doubted my ability to be receptive when my emotions were so all over the place.
My Mum took the meeting but it hasn’t changed anything. I’m still not getting any treatment, any support. I feel like I’ve been given this great weight to carry but abandoned to carry it without help or advice. I don’t know what to do. I don’t know how to move forward. I feel like I’ve been let down by someone who’s job it was to help me. Again. It’s upsetting and exhausting and stressful.
I don’t say these things to encourage a mistrust of doctors or because I regret the ADHD diagnosis. I just need to be honest – for the sake of my own mental health – and while I generally try to see the positive, sometimes the situation just sucks. It’s just bad and hard and makes a mess of you.
Category: adhd, anxiety, autism, depression, diagnosis, medication, mental health, music, research, treatment, university Tagged: adhd medication, adhd support, anti-depressant, antidepressants, anxiety, attention deficit hyperactivity disorder, depression, inattentive type, masters degree, medication, mental illness, neurodivergent, neurodiverse, neurodiversity, phenelzine, stress, stressful, treatment, university
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.