Posted on January 23, 2021
Back in October 2020, I had a long overdue blood test. I think it was actually supposed to be the test that told us whether I’d absorbed and responded properly to the iron infusion I’d had in June 2019 but with starting the Masters and then the pandemic, it had only just become possible.
Going out and going to the Doctors’ Surgery did cause me a lot of anxiety – I’m still struggling with going out and with feeling very vulnerable when I’m out – but the appointment felt very safe and very efficient. I was probably in and out in less than ten minutes. About a week later, we got the results back and my iron was within the normal range. So all good there. However, my Vitamin D levels were seriously low, so low that they wanted to take immediate action. I was prescribed Colecalciferol, a prescription Vitamin D supplement, and instructed to take one a day for ten weeks.
It wasn’t surprising to hear that my vitamin D was low. It’s not uncommon for autistic individuals to have low vitamin D levels and with the pandemic and lockdown, I was staying inside a lot more and therefore not getting as much sunlight as usual, let alone the sunlight I needed. So I wasn’t shocked. I was pretty wary about taking supplements though: my last attempt with supplements had rendered the anti-depressants I was taking at the time completely ineffective, leaving me in a deep, dark hole of depression. Even though I stopped taking the supplements immediately, the anti-depressants never worked again. So I was concerned that something similar might happen again and I’d lose the only consistent (and I use that word loosely) anti-depressant I had in my toolbox. But my doctor explained just how important it was to get my vitamin D up and despite my anxiety, I committed to taking them.
For the first three weeks, I didn’t feel any different. My sleep was as sporadic as ever and I was constantly tired, something that is very much linked with my anti-depressant medication but is also a symptom of a vitamin D deficiency. Week four passed and I still didn’t feel any change but my Mum felt that there had been a slight shift, in my day to day behaviour and my engagement in whatever I was doing. She couldn’t quantify or qualify it any more than that but she did have a feeling that something was slightly different. I was reluctant to believe her, not feeling it myself.
Weeks five and six were tough: I was constantly exhausted and incredibly depressed, although it wasn’t always noticeable, covered up by anxiety-induced busyness. I was sleeping a lot but I was still tired but by the end of that sixth week, I was starting to wonder if I felt different. It’s just so freaking difficult to tell when the change you’re watching out for is so gradual. I wasn’t sure, just cautiously optimistic.
I’d been instructed to go back to the doctors’ surgery for another blood test between four and six weeks to see how I was responding to the supplement. It was closer to six weeks given some difficulty getting an appointment but when it finally happened, it was quick and efficient, just like the first appointment.
During what was the seventh week of this period, I was still tired and sleepy but again, I was starting to think that it wasn’t quite as bad as it had been. It wasn’t drastically better but I did feel a slight – intangible, I guess – difference. But week eight gave me a real sign that things were changing. I was still fatigued easily, still had days where I was really sleepy but I suddenly noticed that I wasn’t needing to drink as much Red Bull as I had been. Ever since I started this round of anti-depressants, I’ve been relying on Red Bull to keep me awake during the day and when the vitamin D first showed up as problem, I was probably drinking three a day – more when I was commuting to university (and yes, I’m aware that this isn’t healthy and have a plan with my psychiatrist to address it, although that has been derailed somewhat by the pandemic). But during week eight, I realised that I was getting through the day on one, sometimes less. Still not super healthy, yes, but a really good step in the right direction. And if I wasn’t feeling like I needed them as much to stay awake, then I had to assume that my energy levels were improving, to some degree at least.
When the blood test results came back, they showed that my vitamin D levels were back within the normal range but still pretty low so my doctor wrote me a new prescription for the rest of the winter with potential for extending it throughout the duration of the pandemic. I’m grateful for that; it’s one worry off my mind at least.
My energy levels still aren’t great. But getting my vitamin D levels under control was never going to be ‘the fix.’ Fatigue is a constant in my life, between my anti-depressants, Chronic Fatigue Syndrome, and other health (physical and mental) problems. But that doesn’t mean I can’t improve my situation. Getting my vitamin D levels back up has helped, hopefully hydrotherapy will help, perhaps the next anti-depressant won’t have such bad side effects (whenever I have time to try a new one – mid-Masters isn’t exactly the perfect time, especially having just reached the modules I’ve been most excited for). Sometimes I need to rage and cry about the pretty constant tiredness, but most of the time I can look forward and focus on the next thing that could help.
Category: anxiety, chronic fatigue syndrome, covid-19 pandemic, medication, mental health, sleep Tagged: anti depressants, antidepressants, anxiety, asd, autism, autism spectrum disorder, autistic, autistic adult, autistic student, blood test, caffeine, cfs, chronic fatigue, chronic fatigue syndrome, colecalciferol, coronavirus, covid-19, depression, disturbed sleep, fatigue, hydrotherapy referral, insomnia, low vitamin d, mental health, pandemic, pandemic 2020, pandemic anxiety, physical health, red bull, redbull, sleep, sleep schedule, sleepiness, supplement, supplements, tired, vitamin d, vitamin d deficiency, vitamin deficiency
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.