So, here we are nearly a year after my last blog post. I think most people found 2020 to be a rather trying year. To me it will always be remembered as my year of living through absolute hell, but also the year when I overcame and survived withdrawing from benzodiazepines. It has hands down been the hardest thing that I have ever gone through.

I have plenty to say about my experience but I’m having difficulties with reading, typing and looking at screens which clearly makes blogging rather tricky. Reading more than two lines makes my brain spin out. Today I’ll start with what happened when I tried to come off my medications too quickly. Just a warning that this blog post could be potentially quite triggering if you’ve had a bad withdrawal experience or if you’re thinking of coming off benzodiazepines yourself. This all happened because I did not get the right help and withdrew way too fast for me.

I’ve been trying to come off benzodiazepines for what feels like forever, but I guess in reality it has been more like eighteen months in total so far. I have been slowly coming off the equivalent of 35mg Diazepam. As of this week I am not currently taking any benzo (big whoop whoop) but my brain is still very much desperately staggering around trying to work out what’s the new normal – I’m far from recovered but I am finally starting to heal.

So, back to November 2019 when I had a massive wakeup call as to how dangerous these drugs can be. I’d already spent over two years getting off several other drugs which had been a pretty awful experience. I felt through having these experiences I knew what was in store for me – I was wrong. I was making what I thought was the last push to try and get free of all the drugs which had once helped but were now making me feel much worse. This is the way such addictive drugs work. Your brain chemistry adapts so you need higher and higher doses to get the same initial effect. Unfortunately, I’d got to the maximum doses on all of my medications. Each time I hit the ceiling on a dose of medication, another was added in. Eventually the day came when the mammoth task of getting off them all began. It was always something I pictured doing when I was 100% better but that day never came, I now realise it never would whilst I was so highly medicated. I was on so many drugs at such high doses I often had Doctors impressed that I was even still standing. I think that I’d lived in such a flat, foggy haze for so long it had just become normal. I really didn’t know if the fatigue and crazy symptoms I was getting could even be all put down to Lyme disease. The picture was pretty muddy. Feeling tired and ‘out of it’ was just my default mode

In preparation I went online, like you do, and read all the information on the addiction sites about what to expect from Clonazepam withdrawal. Clonazepam is a long acting benzodiazepine. I expected some of the side effects, having had some of them from trying to come off Lorazepam (another benzodiazepine but a shorter acting one) over the previous year. It appeared that some people were fine, others struggled and some had a total nightmare. I ignored the complications of seizures, coma and death (because who wants to think about that?!?) and decided that that wouldn’t happen to me. I was working with a Doctor that I liked, I was dedicated to my super healthy diet, Yoga, Wim Hof breathing followed by an ice bath, and Dr. Joe Dispenza guided meditations to help me through the withdrawal. I truly thought with this strategy I’d have it under control and be off the medication in a matter of weeks. I think that will sound pretty funny to anyone who has ever got off addictive medication. There is always a place for positive thinking and coping strategies but I think I had my head in the sand about the reality of the situation.

I did the first reduction and I didn’t feel half as bad as I thought I would. I dropped from 750mcg to 500mcg of Clonazepam. I had insomnia and some anxiety which was to be expected. I experienced worsening of my vertigo, dizziness/disequilibrium which I also expected. I was coping with it well and my Dr had told me to drop down another dose after a couple of weeks if I felt ok. ‘Brilliant, drop another dose and I’ll be off this c**p by Christmas’ I thought to myself. I dropped it to 250mcg two weeks later as planned.

Four days after the drop, I’d just done my Wim Hof ice bath and felt really exhausted so decided to put a ‘bubble gum’ film on TV to try and relax. Halfway through the film I started to feel really confused and could not follow the plot. I turned off the TV and realised I was really confused about absolutely everything, not just the plot. I felt really distressed and scared. I thought I’d try and sleep it off but thoughts were racing around my head rapidly, my eyes were twitching like crazy under my eyelids. It felt that my thoughts were getting faster and faster, unable to stop on anything long enough for me to work out what it even was. It was like I was falling through my mind. It’s very hard to explain. I somehow called my Mum as I knew something really odd was clearly happening. By the time my Mother arrived I was screaming at her to get an ambulance. My poor Mum has tried to get me to hospital multiple times in the past if I’ve had worrying symptoms but I’ve always flat out refused to go. So, she knew there was something seriously wrong for me to be screaming at her to dial 999.

Initially I thought I must be having some sort of panic attack. I clearly remember thinking to myself ‘bloody hell this is awful, I can’t believe people go through these on a regular basis’. Then I started violently jerking and shaking and I knew something was really wrong. Unbeknown to me I was having an extreme withdrawal reaction from reducing the benzodiazepine too quickly. I thought I was coming off the benzodiazepines slowly with the help of my Doctor, but that was another important thing I had totally wrong.

I would have a brief period of lucidity for a few seconds and then my arms and legs would start to jerk violently. I would then lose the sensation down the left side of my body and start to slur my words. It would just get worse and worse until I could feel myself slipping away. Leaving my body. I could see everything was going on but I was drifting away into a tiny corner of my brain where I had no control over my body. Everything would then go completely black and I would think that I had died. I had to claw myself back again to lucidity to then go through it all again. This happened over and over and over. Writing this now brings me out in a cold sweat. It was almost too horrific to even feel real.

In a brief period of lucidity, I eventually realised that it must be the withdrawal causing the seizures and I remembered I still had some short acting benzodiazepine (Lorazepam) in my cupboard. I knew my brain needed benzodiazepine quickly but getting that across in my state wasn’t exactly easy. My mum was absolutely amazing and God knows how, but she managed to work out what I was trying to get across. Bear in mind I could hardly talk, I was trying to point at the cupboard even though I had no control over my limbs. Thank goodness for all those years of charades at Christmas! After about twenty minutes of taking the lorazepam (the fast acting benzodiazepine) the severity of the seizures lessened.

An ambulance took me to A&E. Time had been totally distorted. Waiting for the ambulance had felt like an eternity and I thought I was in hospital for about an hour. I had blood tests, examinations and scans that I don’t even remember. I was fortunate that I saw a Doctor whose best mate worked in Psychiatry and had witnessed patients having seizures from coming off benzodiazepines first hand. So he understood that what I had experienced was a reaction to coming off benzodiazepines. So many Doctors are not aware of the problems of prescribing these drugs for more that four weeks, let alone the dangers of trying to navigate coming off them.

I will never forget this episode. I’ve never been so scared in all my life. I’m very independent (when I can be) and I like my own space but bloody hell, I didn’t want to be on my own for a long time after that. It haunts me still. I have had a few more episodes since that awful experience, always when my brain isn’t happy with the taper speed, but never as bad as that day. During my year long taper the worry is there with every single drop. Will this drop cause another seizure? It is a very hard way to live and not at all relaxing…even less so for my poor Mother who has pretty much been on emergency stand by all year.

It’s funny what goes through your head in such crazy circumstances. I very clearly remember laying there on my floor during one lucid moment thinking to myself ‘that’s just great. I’ve done all this crazy stuff in the pursuit of my health. I’ve been so strict on my diet, I’ve not had chocolate for years and what was all that deprivation for? To be taken out by a little white pill!’. The following week I had chocolate profiteroles. Yes, the works – chocolate, processed sugar, wheat, butter, egg and cream. Do not judge me, they were my NDE (near death experience) treat. It made me realise that it’s so important to get a balance with things, you really don’t know what’s around the corner. If you’re desperate for a piece of chocolate just have it for goodness sake!

I’d like to say that I learnt from this experience, got the help I needed and breezed through the remainder of the benzodiazepine taper but that’s far from the truth. I had a lot more to learn that I plan to share on my blog over the coming months. Don’t do drugs kids, even if they are prescribed really do think about it first.

I have to add that this has taken me an absolute age to write this post. Very slowly writing this sentence by sentence. Printing off and correcting each paragraph so that my brain doesn’t ‘flip out on me’ (not quite the right medical terminology but it describes it best) has taken weeks. I am very proud that I’ve managed it though. This is a big win for me and I’m looking forward to writing more as I have so much to share.