Still on that boat…

Strawberry blonde in a dizzy world!

Simply winging it with the help of Google – because that’s never a recipe for disaster!


By March 2020 Covid hit and with it came the lockdown. This meant that the drug and alcohol service could not see anyone in person for the foreseeable future. The powers that be decided that it wasn’t safe for patients to drop doses of medications as they could not offer any in person support. Everyone was put on a drug reduction pause. Little did they know that the thought of not going in every two weeks to that soulless, depressing place to pee in a cup and to be told everything I was experiencing was just in my head was the best news I’d heard in ages. Thank you Boris!

I know that the drug and alcohol service is very underfunded and does have strengths in other areas, but withdrawal from benzodiazepines was clearly not one of them. I really felt I could have crawled in on my hands and knees wrapped up in tinfoil, declaring that I was the rightful Queen of Scotland and they would have just written it down in my file, told me to ‘just get on with’ it as ‘Diazepam is safe to come off of (it isn’t)- see you in two weeks, bye’. It actually tickles me that they truly felt I was losing my support when they closed, I just felt pure bloody relief.

Just in case you haven’t picked up on it I found the drug and alcohol service no support whatsoever. They just increased my anxiety as my valid concerns were always dismissed as nothing and they forced me into strictly timetabled drug reductions I knew were not right for me. In fact they’re not right for anyone as you never know how you will react to a reduction until you actually do it and withdrawal symptoms can take days, even weeks to kick in. I now had to go to the pharmacy every few days as they put me on an addict’s prescription despite how hard it was for me to get there because of my symptoms. My pharmacist was puzzled as he’d prescribed me buckets of the stuff for years and now that I had asked for help to stop I was being rationed despite never abusing it – I was puzzled too!

I later found out (by mistake) that they actually very rarely dealt with benzodiazepines (not a shocker), but none the less still felt more than qualified to advise me. My GP could not help me as he would not go against the advice of the ‘experts’ and didn’t understand it, like so many doctors – it’s simply not taught. He was forced to follow the advice of the ‘experts’ that I’m not entirely sure had even done it before. Their badges should have read ‘some drugs and alcohol service’ and if we haven’t come across that drug we’ll just wing it. The battles I had with them were relentless. I was once told over the phone that the dose I was on was hardly anything (5mg at this point) and I could just stop it as the symptoms are only psychological so I’d be fine. This is terrible, terrible advice. 5mg is still a huge amount of Diazepam and it should never be just stopped, especially if you have a history of seizures. The symptoms are most certainly not ‘just’ psychological and they’re accompanied by numerous totally debilitating and frightening physical symptoms (especially when you taper too fast). It was terrible and I very selfishly would have been happy for lockdown to stay around forever if it meant I never had to go back there again.

I started to feel a bit better as I was able to stay on the same dose for a few weeks. This is how benzodiazepine withdrawal should go. Go at a rate that suits you. It shouldn’t have taken a global pandemic to allow me to do this. However, it was on my mind that at any point the clinic could decide that I needed to drop a dose again so I planned to get ahead of the curve. They were forcing me to go at 1mg every two weeks. With the help of Google I devised a plan of going 0.25mg every couple of weeks which seemed much more sensible. It literally felt like a race against the pandemic. I needed to be off the Diazepam at my slower (it was still too fast) rate before I was forced to go at the much faster rate. Where others were counting down the days until lockdown ended, I was desperately trying to achieve what I needed to get done, before I was forced to do something that I knew in my gut, would not end well for me.

A big problem (another one) with coming off benzodiazepines is the tiny tablets that only come in big doses. This meant that the only way I could get a small enough increment was to dissolve a tablet in alcohol and tip a fraction of it away. It was very complicated, not very accurate and basically just DON’T DO IT THIS WAY! A benzobrain can be so sensitive even a couple of mls of vodka is just not a good idea. Some people use jewellers scales to try and measure such tiny tiny bits of benzo – it is not easy, especially when you’re going through withdrawal at the same time.  I carried on in this manner for a few weeks thinking I was doing great. Occasionally the clinic would call me to check in and I’d just lie and say I was staying at the same dose that they were prescribing. I wasn’t proud of the deception but what choice did I have? I either waited until I was forced to drop the dose dangerously fast by them, or lied to try and do it in a slower, what I thought was a safer manner. Needs must when the Devil drives and benzo withdrawal is one hell of a ride.

After a few weeks I noticed that my neighbours were playing their music too loud and when my mum visited she just wouldn’t shut up or use an ‘inside voice’ like…ever. What I didn’t realise that this was the start of the neuro sensitivity and it was to get much worse. I think it was a normal reaction to think everyone around you is loud and inconsiderate rather than realise that it’s your brain that just can’t cope with anything. That it wasn’t in fact the neighbours playing random music at all hours but the start of my auditory hallucinations.

My sleep, well you can’t call it sleep, got worse and worse.  I actually got to the point where I was lucky to get 20 mins at about 10.30am and I thought that I was going to lose my mind completely. People would tell me that ‘you fall asleep and kind of drift off’ and its ‘perceived sleep loss’ as people can’t live that long without sleep. Anyone who has been through intense withdrawal will join me in a big eye roll to that statement. I’m pretty sure you can’t fall asleep and not realise it when you’re literally pacing around the house all throughout the night. I’d also get the advice to do more and not nap. Another eye roll to that. You can’t nap it’s like you’re totally exhausted you can hardly think straight but you’re on high alert, totally wired. Could you take a leisurely ‘nap’ with a psychotic killer screaming that they’re going to skin you alive, chop you into pieces and eat you as soon as they manage to break the door down? No, didn’t think so. That’s what it feels like. Yes it turned out, my ‘safe way’ that I researched online wasn’t working either – imagine that, shock horror!

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2 Comments to

“Simply winging it with the help of Google – because that’s never a recipe for disaster!”

  1. Avatar August 25th, 2021 at 9:24 am Emma Says:

    Just catching up with your blog Sues and sending you love x

  2. Avatar August 28th, 2021 at 12:58 pm Susan Cartwright Says:

    ha ha thanks for continuing to read my ramblings. Hopefully I’ll write more positive news one day, you never know 😉

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Who am I?

Was – independent, intelligent (with plenty of dizzy moments), successful, busy, funny (depending on how much Prosecco I and the people around me had!), quite stressed out but overall happy, without even realising how lucky I was.

Now  – ? just a mess really! I was diagnosed with Migraine Associated Vertigo (MAV) eight years ago when my life changed dramatically. It’s a variant of migraine that means I feel dizzy and tired nearly all of the time. If I try and do anything ‘normal’ this sparks of vertigo which gradually gets worse and worse until I pass out unless I lie down for hours, sometimes days. What this means is I spend 90% of my time in bed in a quiet dark room. Normal activities like shopping, walking, going anywhere bright or busy, the cinema even visiting friends who have patterned wallpaper or a gravel drive is a nightmare!

I’m continually trying new medications, all of them with quite nasty side effects (worsening of vertigo, weight loss, hair loss and sense of humour loss to name but a few) to try and find the magic one that will work for me. Fingers crossed the one I’m on now will work, time will tell.

A good friend set up this website so I could become a ginger whinger. No I’m kidding, so people can understand what I’m going through and maybe it would help me to have a bit of a rant. I have quite a dark sense of humour, I think that’s the only reason I haven’t gone completely bonkers! I clearly don’t have the most exciting of lives but I live in a small village with some entertaining characters and I’m always having blond moments (I blame the meds but I’ve always been a bit dappy!). Who knows I may even get better, and I can assure you life will be filled with amazing adventures then!

Scrap that! After zillions of Consultants all saying that they know what’s wrong with me and that they can get me better. Endless drugs and procedures I was finally Diagnosed with Chronic Lyme which was great – until I find out that nobody in the UK has a clue how to treat it. That complicates things some what 😉