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
Posted on April 28, 2019
The last few months have been tough, medication wise. I had a wonderful, un-depressed Christmas (which I’m massively grateful for) but since then, I’ve been struggling. My mood just kept dropping and my anxiety just kept getting worse and we tried to alter the medication to compensate, to find that perfect balance, but it’s gotten to the point where we just need to try something new. So I’m taking stock of everything and trying to figure out how I feel about all of it.
The Clomipramine (a Tricyclic anti-depressant) worked for a while. As I said, I had a really good Christmas where I felt joyful and energetic and actually happy for the first time in a really, really long time. But then it seemed to lose its effectiveness and my mood dropped, whether that was because I was taking a magnesium supplement (I talk about that here) or because it just had a short shelf life. I don’t know. But it stopped working and my depression returned. Since then, my depression has been stifling and I’ve really struggled with suicidal thoughts, at an intensity I’ve never experienced before.
My anxiety also skyrocketed so, in addition to the Pregabalin (also known as Lyrica) I was already taking, I started taking Flupentixol to help manage it. At first I felt no different but after adjusting the dose, my anxiety decreased dramatically and I started to feel a bit more functional. But in the months since then, it seems there have been a number of difficult side effects: my energy levels dropped dramatically, to the point where even a shower is a real struggle. Standing for any length of time is impossible and I ended up being wheeled around multiple airports in a wheelchair during my Nashville trip. The worst part though was that my hands felt thick and clumsy, like my fine motor skills had just evaporated into thin air. Playing guitar was practically impossible.
At first I didn’t realise that these things were connected to the Flupentixol but thanks to my Mum and her incredible attention to detail, we realised that the dates all seem to match up and since we reduced said medication, these problems have disappeared. I’m ridiculously grateful to have my hands back, even if my anxiety has flooded back in.
We’ve reached a point where I can remain where I am or start over. So I’m starting over. I don’t want to live like this. So, after a lot of thinking and talking to my psychiatrist, I’m coming off both the Clomipramine and the Flupentixol. I’m not a massive fan of the Pregablin either to be honest but even changing two things at once is ambitious. So that one can wait. I’ve already started reducing the meds and I’m bracing myself for a barrage of mood swings, depressive episodes, and more. It’s not going to be fun. But it will be worth it. Hopefully.
The current plan is to come off the two drugs, go the ‘wash out’ period (two weeks of no drugs – apart from the Pregablin – so that there aren’t any negative interactions between the medications), and then start Phenelzine again. Yes, Phenelzine – the drug I stopped taking two years ago because it had stopped working, because the joyfulness it gave me felt fake and suffocating. BUT it’s the only drug that’s allowed me to be functional – creatively and otherwise – so we’re giving it another try. It did work for a long time and if it doesn’t, we’ll try another MAOI (monoamine oxidase inhibitor) anti-depressant.
I’m not sure how I feel about it, to be honest. Part of me is frustrated and disappointed. I’ve spent two years trying to find something better only to end up where I started. But on the other hand, that’s two years of knowledge, experience, and confidence that I didn’t have before. I’m a different person and chances are, my reactions will be different: our bodies change and our chemical makeup is constantly shifting. These medications all but cause a hurricane inside us. So I’m trying to be optimistic. I’m trying to be hopeful.
Category: medication, mental health, treatment Tagged: actuallydepressed, anti anxiety, anti depressants, anti-depressant, antianxiety, antidepressants, anxiety, anxiety disorder, clomipramine, depressed, depression, flupentixol, maoi, maois, medication change, medication review, mental illness, mentally ill, mentally unwell, mono amine oxidase inhibitors, phenelzine, pregablin, side effect, side effects, treating depression, tricyclic antidepressants, tricyclics
Posted on February 23, 2019
I’ve now been taking various medications for four and a half years. It’s been a very mixed experience but through it all, I’m an advocate of medication because when we get it right, it’s incredible. A whole new person emerges, a person you’d forgotten you could be and that is the most amazing experience. It’s the closest thing to freedom that I’ve ever felt. But during that time, there have been a number of interesting and strange experiences. I don’t know if reading about them will be helpful to anybody but all of this stuff can be so scary if you think you’re going through it alone. So I’m putting it out there, just in case.
I’ve written about this before but it makes sense to include it here as well. Because of several very busy days, I forgot to take my Venlafaxine and accidentally went into withdrawal. It started with an almost debilitating headache and on day four I woke up unable to think clearly. I couldn’t hold on to a thought: they were moving so fast that it made me feel dizzy and sick. On my Psychiatrist’s advice, I resumed the medication and I started to feel better pretty quickly although it took about a week before I felt like myself again.
Too much Pregabalin
At one point, I picked up my prescription and didn’t realise that the pills were at different doses than the previous prescription had been. So when I thought I was taking 150mg, I was actually taking 450mg. I woke up the next morning feeling shocking: I felt like my head was filled with cotton wool, the ground was moving under my feet like ocean waves, and my legs and hands kept twitching. It was awful and because I wasn’t aware that I’d changed my dosage, I was really freaked out. I ended up at the out of hours doctors because both me and my family were so worried. They didn’t find anything serious so we were left to wait and see but then my Mum realised what had happened. So that was a scary experience that I have no desire to repeat; I’m much more diligent about checking these things now.
Obsessive eating with Amitriptyline
Almost from the moment I started taking Amitriptyline, I was obsessed with eating, constantly thinking about what I could eat next, what it would taste like, what it would feel like. It was very much about the sensation of eating rather than being hungry. And the higher the dose, the more I wanted to eat. It was all I could think about. Seriously. I couldn’t think about anything else; I couldn’t function. It eventually caused me so much anxiety that I had to stop taking the Amitriptyline and try a different medication. I’d lost a lot of weight while on previous medications but I gained it all back while taking Amitriptyline and I found that very stressful and upsetting.
Taking Diazepam with Redbull
During a period of particularly high anxiety, I was taking Diazepam regularly throughout the day. The anxiety lifted but what was left was this overwhelming tiredness and sleepiness that had me falling asleep in the middle of the day, sometimes mid sentence. So I started drinking Redbull to keep myself awake and functioning. It wasn’t until a few weeks later – when I used Redbull to wash down the Diazepam – that I realised that it was the Diazepam that was making me so sleepy and that this was not something I could continue to do (not that Diazepam had ever been a long term strategy). I’d been taking it to ease the transition between medications and fortunately my anxiety started to go down and I didn’t feel the need to keep taking it.
Running out of Pregabalin
At one point, I ran out of the 225mg capsules, which didn’t seem like a problem because it was less than a week until my next appointment and we still had a load of Pregablin pills from earlier prescriptions, when we were still trying to get the dosage right. But then we realised they were 50mg capsules that you couldn’t split in half so I wasn’t going to be able to take my full dose of 225mg. I’d have to take 250mg or 200mg and the safer course was the latter. So I did several days on 200mg with pulsing headaches to remind me exactly why you take the exact amount you’re prescribed.
Too Much Magnesium?
This is speculation but not long after I started taking a Magnesium supplement, my mood seemed to nosedive. I’d been doing pretty well and was actually having bursts of what I think was happiness and so I’d felt able to add the (nutritionist) suggested supplement into my system. Nothing happened straight away and taking it became a habit but then depression started to creep in again. The only thing we could attribute it to – the only change – was the addition of the Magnesium. I’ve always been incredibly sensitive to stuff like this (I once threw up moments after taking a different supplement because it had too much copper in it) so I stopped taking it and within a couple of weeks, I felt more like myself.
Twitching on Pregabalin
The one real side effect of taking Pregabalin – in my experience, at least – is that it causes twitching, mostly in my legs but sometimes in my hands and arms too. It’s very disconcerting to not feel in control of my body and I really, really don’t like it. But as of now, Pregabalin is something I need to get through the day. It helps me manage my anxiety but if another option became available, I would jump at the chance to change, even with all the potential problems of switching medications.
I hope I haven’t put any of you off medication. These experiences weren’t fun but as I said, getting it right is worth it. At least I hope so.
Category: depression, medication, mental health, treatment Tagged: amitriptyline, anti anxiety, anti depressants, anti-depressant, antianxiety, antidepressants, diazepam, magnesium, medication review, medication withdrawal, mental health treatment, pregabalin, supplement, treating depression, tricyclic antidepressants, venlafaxine
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.