Posted on March 7, 2018
About a month ago, I went back to my psychiatrist. We discussed the Venlafaxine and since it hasn’t had the effect we’d hoped for, it was time to think about what to do next. The most obvious option, the one most likely to work in the shortest amount of time, was to add an ‘augmenting agent’ and so I started taking Lithium. I’m aware of the perception of Lithium but it didn’t worry me, not any more than any other medication anyway. I’m always hopeful that a new medication will work, and if that comes with the opportunity to defy expectations then it’s even better. So I was feeling optimistic and, as I did with the Venlafaxine, I took notes so that I could track any progress and/or side effects.
FIRST NIGHT AND NEXT DAY
As the first night and then day was pretty interesting, I thought I’d write this one up separately. I slept restlessly and woke up multiple times with night sweats. The first time I woke up was very surreal: I was overwhelmed by the physical sensations in my body. I remember thinking, “I can really feel my hands. I really have hands.” It was very strange. I struggled to get back to sleep and when I got up in the morning, I felt very nauseous. I had a headache all day and by the evening, I felt very spaced out and tired.
The restless sleep and night sweats continued, joined by complicated and busy dreams. I found it very difficult to wake up and I was so sleepy that I was falling asleep multiple times during the day. When I was awake, I was tired and weak, like there was no strength stored in my body. It was frustrating and upsetting to struggle to do everything I would normally do. I was spaced out and nauseous and shaky; if I stood up for more than about thirty seconds, I got dizzy and nauseous and my vision went white. It was horrible.
I was still having difficulty sleeping and was struggling with sleepiness during the day. I continued to struggle with nausea and feeling spaced out but I also felt low; I think I would’ve felt depressed if I was able to really feel anything. The shakiness and weakness also continued.
And we STILL have difficulty sleeping. It was taking me hours to get to sleep and hours to wake up and in the few hours between, I slept very restlessly. Then when I was awake, I was very sleepy. The shakiness, weakness, and nausea combination was still around. I also started to struggle with almost constant anxiety; there were stressful things going on but I couldn’t seem to shake it off once I’d done those things so it was around all the time.
Continued difficulty sleeping, especially staying asleep and then I was so tired that I fell asleep during the day. Those short sleeps were actually the best I’ve had in months, much better than the hours I got at night. I was also still struggling with the shakiness, dizziness, and nausea, as well as the anxiety.
The restless sleep continued, as did the struggling to wake up. On several occasions, I fought to wake up only to fall asleep again; I also fell asleep during the day multiple times. I was constantly tired. The nausea and dizziness also continued, as did the anxiety.
I did not like taking Lithium. It didn’t actually help my depression – I’m still feeling very emotionally numb and the fatigue has only gotten worse – and the side effects were constant and actually got worse over time: the difficulty sleeping, the shakiness/dizziness/nausea combination as well as all of those as separate symptoms… I was struggling so much that I had multiple doctors’ appointments to make sure that nothing else was going on. I had blood tests and blood pressure tests and even an ECG. They didn’t show anything outside the normal ranges but the fact that it was bad enough to warrant those tests meant that I booked an appointment with my psychiatrist for as soon as possible to look at my medication.
I have now had that appointment and we’ve decided to stop the Lithium; he was surprised and impressed, I think, that I’d stuck with it so long considering how bad the side effects were. Since the Venlafaxine hasn’t done much for me, I’d like to try something else but given how much is happening in the next couple of months, I’m reluctant to put myself through the ordeal of getting off it, the period of no medication, and then getting onto something new. So for now, I’m trying a new augmenting agent and I guess we’ll see how that goes. I think the emotional numbness is preventing me from getting too low about anything but regardless of that, I’m still optimistic about medication, even with all the bad experiences I’ve had recently. I fully believe that it was Phenelzine that made going to university possible and even now, years later, I still remember so clearly how good I felt when I started taking it. It felt like I was flying. It was amazing. Searching for that will always be better than letting the depression take over, even if I have to let it take over to remember that.
Category: anxiety, depression, medication, mental health, sleep, treatment Tagged: anti depressants, anti-depressant, antidepressants, anxiety, depression, dizziness, fatigue, lithium, medication, mental health, mental health blog, mental health blogger, mental health blogging, mental illness, nausea, psychiatrist, shakiness, side effect, side effects, sleep, venlafaxine
Posted on December 31, 2017
It’s become a bit of a tradition for me to summarise the year on Instagram with a collage of photos and a sappy caption but since I have the blog this year, I thought I’d write something a bit more in depth (although I will still do my Instagram, fear not). I want to collect my thoughts and take a look at what I loved and lost and learned.
This has been a hard year, mainly because of my mental health. I struggled with my medication for a long time before having the worst meltdown I’ve ever had and that was the trigger for a really bad bout of depression that I still haven’t really recovered from. It’s not as bad as it was but it’s been really hard. Because of that, I decided to change medications and that process has swallowed up most of the year. Honestly, that’s been awful. I’ve been in a really bad mental place, it’s made me physically unwell, and probably the worst part is that it’s affected my cognitive functioning, making me unable to write. That has been unbearable. But it hasn’t been all bad, mental health wise. I confronted someone who really hurt me, I got involved with research studies into Autism, I applied to ‘Behind The Scars’ and talked openly about my experiences with self harm. I somehow got over my paralyzing anxiety about moving house and I’ve started communicating more with my family. So while it’s been a really difficult time, I can see that I have made some significant strides this year.
Another big thing was graduating university. I had always wanted to graduate with First Class Honours and while I expected it of myself, I still can’t quite believe that I managed it. I want to write something much more in depth about my experience at uni because there were a lot of ups and downs but ultimately, it was a great experience and I’m really proud of everything I achieved there. I also made some amazing friends who I will hopefully have in my life forever. The UEL graduation was stressful and exhausting but the ICMP graduation was satisfying and fun. And going out afterwards was a bizarre experience but I was proud of myself for defying my anxiety. My only regret about finishing uni and then graduating is that my depression overwhelmed them: when I found out I’d got a First, I didn’t feel anything. I wanted to be ecstatic but I couldn’t feel it. And yet, I would’ve been devastated had I not got a First. I’m trying to accept that situation for all it was though; I can’t change it now.
And then, of course, there is the music. This was obviously massively affected by my mental health but there were still some great moments this year. I wrote my most important song so far and I’ve been working on its release ever since (fingers crossed for early 2018) and that is so amazing to me. I’m so excited for it. I’ve also had some really fun recording sessions and I’ve had some awesome performing experiences: I got to play a songwriters’ circle with Lauren Aquilina, I hosted another songwriters’ circle at my friend’s charity benefit for TWLOHA, I played a showcase for a record label, and I got to play for my local Autism charity, Amaze. I mean, how cool is that? I also had another really special trip to Nashville. And last but certainly not least, I’ve been to some incredible concerts this year, including: The Shires, Sasha, East of Eli and Chyler Leigh, Country2Country, Tin Pan South Festival, Willemijn Verkaik, Kelsea Ballerini, Lady Antebellum, NADINE, and Maren Morris. Concerts are so, so important to me. Those are the moments where I really feel alive and so I always keep money aside for when they come around. They’re the only thing that I really spend money on.
I’m not sure whether it’s even possible to classify this year as a good one or a bad one. It would be easy to file it away as a bad year because of the difficult mental health stuff but there have been a lot of amazing moments. I went back to my two favourite places in the world, I listened to great music and saw some incredible art pieces, I saw my kittens all grown up, and I had some amazing experiences with the lovely people I’m so lucky to call my friends. I even started drinking alcohol for the first time; that’s been an experience! Thus far, I don’t really like it but I’m really, really, REALLY enjoying not feeling controlled by my anxiety, at least not in that area of my life.
Overall, this year has been a year of waiting. It really has: waiting for the medication to work, waiting to feel better, waiting to release my first single, waiting to move, waiting to graduate… Even when I was still at uni, I was counting down the days until we finished (because I didn’t want to leave and I was stressed about getting everything done in time). Always, always waiting. This year has been measured in seconds, minutes, hours, days, rather than experiences, far more than any other year. So that’s my hope for the new year: to wait less and do more. I know that many of these things were out of my control and when there were things I could influence, I did my best to do so. And I did some pretty cool stuff while I was waiting for other things. But I really want next year to feel different. I can’t remove waiting from my life but I’d like to not feel so stuck when I do have to wait.
“2017 was the year of waiting: waiting to release music, waiting to move house, waiting for medication to start working, waiting to feel better. It’s been slow and painful so I’m grateful to be moving on. But there have been some great moments this year too. I wrote some songs I’m really proud of, saw some amazing concerts, and went back to Nashville. I tried to see my friends as much as possible and worked hard on my mental health. Hopefully I’ll start to see some of that work pay off in 2018.” (x)
Posted on December 29, 2017
I meant to post this yesterday, which actually was the 100th day, but then I managed to break my memory stick, where the file was saved. So that threw a spanner in the works. But here we are. The files were recovered. No harm done.
I’ve been taking Venlafaxine for 100 days now so I thought it was time I compiled my notes and summed up the whole thing. I know that when I started taking it, it would’ve been really helpful to know about someone’s experience. My psychiatrist gave me all the medical information but that didn’t really prepare me for what it felt like. So if you’re about to start taking Venlafaxine or are thinking about it, maybe this will help you. And if not, maybe this will give you a little insight into one experience of taking medication for a mental illness.
Week 1 (Dose: 37.5mg)
The nausea was so strong that all I could think about was not throwing up. I was very dizzy and tired all the time. But it was much easier to wake up in the mornings, quickly rather than having to drag myself into consciousness.
The nausea faded a bit. I had headaches and was exhausted all the time. I continued to wake up early.
Week 3 (Dose: 75mg)
I was so tired that I fell asleep at random but I was still waking up early. I felt very faint and was too shaky to do anything but I had no concentration so I couldn’t do much anyway.
The week was overshadowed by severe, unexplained leg pain. I had several doctors’ appointments to rule out the medication and DVT, the next most likely explanation, but eventually it faded by itself. Aside from that, I felt a bit lighter emotionally.
I had some leg pain but it faded much more quickly. I was exhausted and very sleepy, regardless of how much sleep I got.
I was so very, very tired, so tired that I could barely do anything. But I was still waking up very early.
Again, still very, very tired but I was also feeling very anxious and depressed. I also noticed lots of bruising, especially on my legs that didn’t seem to have a cause. All I had to do was lean on something hard, like the edge of a table, and I’d have a bruise.
Week 8 (Dose: 150mg)
A bad week. I felt very disconnected and depressed. I was also exhausted so I didn’t have the energy to do any of the things that can help. I was also pretty unwell for a couple of days but I don’t know if that was related or just a coincidence.
I started struggling desperately to wake up. It was like being trapped between being awake and asleep. It took all my concentration to wake up but all I had to do was blink and all that effort is wasted and I have to start all over again. I was exhausted and sleepy all the time.
I was struggling desperately to wake up and still exhausted and sleepy all day.
I reduced the Quetiapine from 125mg to 100mg (which I was prescribed while taking Phenelzine to help me sleep – I’d wanted to come off it straight away but was advised to wait so that I wasn’t dealing with reactions from both medications), which made waking up easier but I was still exhausted, depressed, and without any motivation.
The sleepiness started to creep back in and I was still exhausted and without motivation.
Again, I was really struggling to wake up; I couldn’t stay awake but I also couldn’t get back to sleep either. I managed to get the Quetiapine down to 50mg but I wasn’t sure if it was helping or not. I still had very little concentration and motivation which was really difficult and upsetting.
Week 14 (Dose: 225mg)
To combat the sleepiness, I reduced the Quetiapine to 25mg so my sleep was very all over the place. I was waking up really early and not getting more than about six hours. But I did feel more awake and alert which was a relief. I had several really productive days and wrote two songs after not being able to write for more than six months. That gave me an evening of complete joy, something I can’t remember feeling. Unfortunately that only lasted one night and my mood dipped afterwards because I missed it so much.
My mood was fairly stable, no major ups or downs. I wasn’t depressed but I wasn’t feeling that positive either. I was tired and sleepy and feeling a bit lost.
I just wanted to draw particular attention to how long this process can take. When I started my last medication, I felt better very quickly but it’s been a very different story this time. It’s not as simple as taking the pills and feeling better. There’s the time it takes to decide or justify that you need a new medication (or a first medication), the time it takes to come off the old one, the time it takes to build up and adjust to the new one… I started this process in May and it’s now December. Seven months and I still don’t feel that much better. I’m hanging on to hope that things will start to get better – I’m holding on to that one really good day – but it’s hard.
I think there is a lack of understanding when it comes to this stuff. From the outside, it can seem like you’re not doing anything to get better and there’s a lot of guilt attached that, from other people and from yourself. But on top of whatever mental health problem you’re dealing with, there’s adjusting to the medication and whatever side effects come with it. That’s a lot. It’s exhausting physically, mentally, and emotionally and you shouldn’t feel pressured to do things you feel unable to or feel guilty about whatever you need to do to get through it. I’m still trying to learn this. I constantly feel like I’m not trying hard enough, even when I’m so exhausted that I don’t think I can get out of bed. But that’s a topic for another day.
I hope you all had a lovely Christmas and I’ll see you in the next post.
Posted on November 1, 2017
Just over a month ago, I started taking Venlafaxine for my depression. I’ve tried lots of different anti depressants in the past, many of which I had a bad reaction to, so I was nervous. Weaning myself off the Phenelzine was hard and I was very, very depressed but somehow, I reached a point where I felt ready to feel different. It was a bit like breaking the surface after being underwater. I was, and still am, desperate to feel better.
I started on a very low dose, half the lowest therapeutic dose, so that my body could get used to it. But despite that, I felt the effects straight away and incredibly strongly. I was very nauseous. It was so bad that I couldn’t really concentrate on anything else; all my concentration was focussed on not throwing up. It made me dizzy and I was tired all the time. I did check with my psychiatrist to make sure it was okay to keep going with it and he said it would pass so I focussed on tolerating it.
The other immediate change was my sleep. I went from struggling to wake up before eleven (and I mean really struggling: it felt like I was drowning) to being wide awake at eight o’clock in the morning. It was bizarre.
The nausea faded around the beginning of the second week, which I was very grateful for. My mood, while still pretty low, was stable, and I was still waking up much earlier than I had been able to previously. However I started having headaches and I was exhausted all the time, which made it very hard to do anything.
In the third week, I went up to the lowest therapeutic dose. This caused a pretty dramatic reaction. For the first few days I was so tired that I fell asleep in the middle of the day, something I haven’t done in years. But despite that, I was waking up even earlier, between six and six thirty am.
By the middle of the week, I couldn’t concentrate at all. I couldn’t hold a conversation, I couldn’t follow the storyline of a forty-minute TV episode, I couldn’t even play a game on my phone… That was scary, but I couldn’t even really feel that because I couldn’t seem to process the emotion. I started to feel faint and very shaky and that went on for several days. If I stood up for longer than a couple of minutes, my legs started to shake and my hands shook so badly that I couldn’t hold a pen. That was very unpleasant.
Most of the fourth week was lost because of severe, unexplained leg pain that had me in tears. My psychiatrist didn’t think it had anything to do with the medication and DVT was ruled out but other than that, we don’t know what caused it. I’ve been taking painkillers since and it’s been better. So that tired me out and overwhelmed everything else. But since then, the shaking has mostly stopped and I’m back to waking up between eight and nine in the morning.
This week is the first where I’ve felt different mentally and emotionally while taking Venlafaxine. I wouldn’t say I feel better but I’ve been feeling a bit lighter. That feels very strange and a bit scary. With this new lightness, I’ve been feeling a bit lost which I’ve written about here. I’ve been so depressed for so long that I can’t remember what it’s like to not be depressed. But despite all of those confusing emotions, I am pleased that this medication is starting to work. It will probably take another month or so to really know how it’s affecting me but it’s looking positive and I’m really grateful for that.
Posted on October 21, 2017
Since taking the Venlafaxine, I’ve felt different. I’ve felt a little bit lighter, mentally and emotionally. In some ways this is better but in some ways it’s not. Depression is such a heavy feeling but now I feel a bit like I’m floating away. I feel kind of lost, or like I’ve lost something really important. In a weird way, I miss feeling depressed. No, that’s not right. I don’t miss it, but I feel kind of lost without it. And feeling like that makes me very anxious.
Objectively I understand why I feel this way: I’ve spent a lot of time feeling depressed. It’s familiar. It’s certain. It’s a world where everything is in focus with clear and sharp edges. Now the edges are fuzzy. I feel like I don’t know who I am or what I’m doing. And emotionally, I’m finding that really hard to get my head around.
I know who I am when I’m depressed. Those emotions overwhelm me, they define me. Depression takes over my personality, or becomes the biggest part of it. It affects everything. It’s like depression takes up all that space. But now, there’s suddenly all this space that wasn’t there before. It feels a bit like when you stand in the middle of a really massive empty room. It’s quiet. It’s cold. It makes you feel so small and lonely. And if I look at myself in that big white room, I don’t know who I am. I don’t know if I’m optimistic or pessimistic. I don’t know if I’m a good person or a bad person. I don’t know if I’m loud or quiet. I know some little things but not the big things.
I do recognise the opportunity here, the opportunity for things to be different: to fill the room with new things. That thought is both thrilling and terrifying. But I’m not sure I’m there yet: I’m still pretty overwhelmed by how big this room is, how empty it is. I don’t know where to start.
I’ve thought a lot about identity, both mine and in general. It’s something I’ve struggled with for a long time and something I want to write more about. But I think your identity is made up of the things about you that don’t change, the fundamental aspects of your personality. I don’t know much about myself but I do know that I’m very sensitive. I’ve always been sensitive and I can’t see it ever changing. So I guess that’s a part of my identity.
I’m not sure my depression is gone but I’m not drowning in it anymore. And that’s scary. I’m so used to it that I’m not sure who I am without it. When I’m depressed, that big white room is so dark that I don’t know that all that space is there, so I don’t even know the room is that big. But now I know it’s there and it’s very compelling. I keep turning it over in my mind. As I said, I know who I am when I’m depressed. I want to know who I am when I’m not. So I guess that starts now. It’s a brave new world.
Posted on September 27, 2017
Just over a month ago, I decided to change medications. It was a long time coming but I eventually managed to speak to my psychiatrist and we came up with a plan. The first step was weaning myself off the Phenelzine and the second was going drug free for at least a couple of weeks to make sure it was out of my system before trying the new medication. I kept notes to track any patterns in mood and since I couldn’t find many accounts of coming off Phenelzine when I searched online, I thought I’d write about my experience. As always, this is only my experience, which will be specific to the dosage I took and the duration for which I took it.
I was already on half of the prescribed dose so, to start the weaning off process, I went down to a quarter of the prescribed dose. Very quickly I felt very irritable, snapping at people over things that normally wouldn’t bother me. I was also overly emotional and ended up in tears a lot, sometimes multiple times a day.
In the second week, I stopped taking the Phenelzine altogether. My anxiety skyrocketed and remained really high, higher than it’s been in a long time. My mood was also very fragile, so even small things made me very upset and depressed.
In week three (the second week without any medication), I felt completely exhausted; some days, I was so tired that I could barely get out of bed. I was very depressed and felt blank, empty, completely disconnected. It was like everything just bounced off me. I’ve gone through periods of feeling like this before so, even though it isn’t pleasant, it wasn’t unfamiliar.
Although I’d already been off the Phenelzine for two weeks, I decided to wait a little bit longer before trying the new drug. It was two weeks minimum and I’ve always been very sensitive to medication so I wanted to make sure it was completely out of my system before starting the next one. I didn’t want any chance of an overlap distorting that experience; I didn’t want to risk writing off something that could help over something as small as a few more days. For that last week, I was just really tired. My mood seemed to stabilise a bit and everything just felt less turbulent. It was that settling of my mood that made it easier to think more clearly and I felt ready to try the new medication.
It’s worth pointing out that my mood has been consistently low throughout all of this. I’ve had a couple of days where I felt a little bit lighter but on the whole, I’ve been feeling very depressed, hence the change in medications.
And now I’m onto the next stage: trying the new medication. I’m nervous but I’m really ready not to feel like this anymore.
Posted on August 26, 2017
It’s time for a change.
I’ve been taking Phenelzine, also known as Nardil, for almost three years now and while it’s been a great help to me, I need to try something else. The last few months have been very difficult and to cut a long story short, I’ve been diagnosed (for the second time) with Clinical Depression. I’ve been finding it really hard to take my medication, knowing the effects it will have on me. It might sound strange but, when I take the Phenelzine, my mood lifts and feeling the way I do at the moment, I’m really struggling with that. I find it really hard to try and feel ‘okay’ when everything is ‘not okay’. To me, this makes complete sense but I can also recognise that I’m waiting to feel better while avoiding things that actually might help.
I think my problem with Phenelzine is how familiar I am with how it affects me. Having taken it for so long, I know exactly how it changes my mood. That used to be a good thing but now… Now, the ‘happiness’ it makes me feel just feels fake because I know it’s caused by the Phenelzine. I think it’s important to point out here that, objectively, I know that there is no difference between ‘real’ happiness and happiness caused by medication, and that I have always been a real advocate for taking medication (if you need it and it’s recommended). That belief hasn’t changed. But my familiarity with this medication is now making it difficult for me to take it so I need a new approach. It’s time to try a different one. Hopefully not knowing whether it’s the medication affecting my mood or the world around me will make it easier to take and therefore help myself feel better.
So I thought I’d do a little review of Phenelzine as a goodbye.
I started taking Phenelzine in the summer of 2014, after meeting my current psychiatrist. I’d taken various medications before (I’ll write about those at some point), all of which I’d had bad experiences with. So my Psychiatrist suggested Phenelzine, a drug not commonly used (in the UK at least) because of the dietary restrictions but one used when the other options haven’t worked. I’d never tried an MAOI (a monoamine oxidase inhibitor, one type of antidepressant) so I was optimistic that I would react differently than I had to SSRIs (selective serotonin reuptake inhibitors, another type of antidepressant). And I really did.
Almost straight away, I felt completely different. I had previously been almost unable to get out of bed, let alone do anything else, and suddenly I had more energy than I knew what to do with. My thoughts were like fireworks going off one after another after another after another. It’s the closest to mania I’ve ever experienced and my family were genuinely worried about me. I could barely sit still and I couldn’t shut up. I’m not kidding, I couldn’t stop talking and that was pretty embarrassing as I was just starting university. It was a bit scary but at the same time, I was absolutely ecstatic to be feeling so much better.
It took a bit of messing around with the dose (with my Psychiatrist’s supervision) but that did calm down. After a couple of months, I felt a bit more normal: I had more energy, I could concentrate and complete tasks, and my anxiety wasn’t as overwhelming as it had been. On a lower dose, I wasn’t so manic but I could still function a lot better than I could before. My almost perfect attendance in my first semester at uni is a testament to how much it helped.
Since then, with the exception of the last few months, it’s been a massive help to me. I’ve managed to complete my degree and graduate with a First, while commuting up and down to London. I mean, it was freaking exhausting but it would have been impossible without the Phenelzine. As I said, before I started taking it, I could barely get out of bed. The exhaustion that I experience with Depression is awful and I didn’t have the energy to walk my dog around the block. So Phenelzine was a godsend.
Side effects wise, there was only one that I struggled with (although I was initially a bit light headed and nauseous but that passed pretty quickly). My main battle was with the insomnia the Phenelzine caused. It’s has an alerting affect so it’s not that surprising that I had trouble sleeping. I struggled to get to sleep and when I finally did, I never slept more than four hours a night. It was exhausting. On multiple occasions, I fell asleep on the sofas at uni during my breaks and I’m pretty sure I fell asleep during a lesson once or twice: I have a very vivid memory of ‘blinking’ and finding the white board covered in writing…
This has been an ongoing difficulty. I ended up going back to the psychiatrist and left with a prescription for Quetiapine. I still have to take it every night to get to sleep and while I’m definitely grateful for that sleep, it also has it’s own downsides. It’s incredibly difficult to wake up; it feels like my eyes are glued shut, like I’m swimming through deep, dark water with no idea where the surface is and it can take hours to shake off the drowsiness. And it’s scary to feel like you will not sleep without it. I’m hopeful that, when I stop taking the Phenelzine, the insomnia will disappear and so I can stop taking the Quetiapine. That’s both exciting and scary. I haven’t slept unaided in almost three years; I’m going to have to learn how to do that again.
It’s going to take a little while to wean myself off Phenelzine and I have no idea how the new medication will affect me. So the next few weeks are going to be interesting.
Hey! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as a number of other mental health issues. I’m also a singer-songwriter so I’ll probably write a bit about that too.