Still on that boat…

Strawberry blonde in a dizzy world!

Acute withdrawal hell


I think most people have an idea of what drug withdrawal looks like; potentially a weekend chained to the radiator shaking, sweating and chugging Gatorade if you go by most TV’s portrayal. If only it was that easy. The cruel thing about benzodiazepine withdrawal is that it can take months, if not years to get through and going cold turkey (or just too quickly) can be really dangerous.

Eventually I got down to 2mg of Diazepam and at this point life was absolutely unbearable. It’s almost beyond words how bad things got but I will try to explain best I can. My neuro sensitivity was through the roof. I was so sound sensitive that I was confined to bed with ear plugs in and ear defenders on and still struggling – bin day was dreadful. Any sound was completely excruciating and would leave my ears screeching with tinnitus and I’d feel like my head was going to explode. I couldn’t run a tap, eat solid food, listen to music, hell, I couldn’t even speak. My mum had to move in with me and it was like living on the set of A Quiet Place. No shoes, no speaking, phones off, doorbell unplugged, plastic utensils and towels on every single surface to dampen the sound. I couldn’t even have hot water as just the hum of the boiler would leave me practically rocking in the corner of the room. I would communicate via pen on paper and even the sound of the pen scratching the paper would be too much. I could not step foot outside the house. I was so sound sensitive any noise was totally debilitating and confusing as I could not identify what it was or where it was coming from. A bee flying past sounded exactly the same as a drill being used a few houses down. Superman must have felt absolutely fooked!

Now, add to that light sensitivity, I lived in my sunglasses and ear protectors – quite a fetching combo. I couldn’t focus on anything, so that made communication rather difficult as I was communicating via Sharpie pen. I learnt British Sign Language years ago but it wasn’t that useful when nobody else knows it, besides I could only remember ‘Liverpool’, ‘Lesbian’ and half the alphabet – not that helpful!  We’d try and play cards to pass the time but after a couple of rounds my eyes would roll into the back of my head and my eyes would twitch rapidly under my eyeballs. The only thing I could do was to lay in a dark room with zero stimulation. I couldn’t use my phone or read. My mum would reply to my text messages for me as people were starting to get concerned as I’d just dropped off the planet, even more so than usual. That’s no sound and no vision. See how slow your day drags when you can’t rely on any of your senses. It’s painfully S.L.O.W!

My mouth became so sensitive my mum made me soup, I couldn’t have anything with any crunch at all, and I accused her of filling it with chilli’s. Everything from that point tasted like the hottest chilli. Strawberries were particularly bad, my mouth would be on fire for hours after. So I had to have totally tasteless, cold, liquid food with plastic spoons as the sound of cutlery was simply awful- hello custard diet.

It got worse. The auditory hallucinations became simply horrific. It would sound like a line from an orchestra, probably about three seconds of it, very loud on repeat. All the instruments rocking out and going crazy. Variations of the same acoustic tune for three seconds on repeat for months and months on end. I still have it now, six months free of the drug, but it is much much quieter and far less intrusive. It was absolute hell. On top of that I would hear sounds that weren’t there. For example I would hear the whirr of he microwave going when it wasn’t even plugged in, but it wouldn’t stop, continuing on in my head until my frazzled brain latched onto another sound. I would hear children giggling in the middle of the night – that was a creepy one. It was like my brain recorded random sounds during the day and played them back to me on repeat. I had to have someone with me at all times as I had no idea what was real and what was not. Just writing now this brings me out in a cold sweat. I would not go through that again for all the money in the world.

If I had too much stimulation, and I’m talking hardly anything as I was in a dark, soundless room for months, my brain would ‘flip out’ – perhaps not the right medical terminology. It’s hard to describe but it was like I lost control of my mind. It would feel like I was falling through random thoughts not stopping on one long enough to work out what it was. It was like flicking through the channels on the tv so quickly that you get a glimpse, but not quite enough to ascertain what it even was. I had this same sensation when I had my initial seizures. It was frightening and it would come on out of the blue and could last hours. All I could do was stay still in my dark room and take deep breaths until it passed. I swear if I hadn’t had already explored so much meditation and the Wim Hof method I would have had to have been sedated to just cope. This would never have helped the withdrawal and I’d probably be medicated up to the eyeballs and locked up somewhere to this day.

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It would have been great if I could have distracted myself with a film, or music or a chat but that wasn’t possible. I was in my own private and very isolated hell. I still could not sleep because of the insomnia and then add trying to sleep when you have a jazz band going off in your head on repeat – impossible. When I did finally sleep I would have night terrors. I’d wake up soaked through and shaking for hours, questioning what was real or not, embarrassed that my subconscious could imagine something so violent. My anxiety, understandably, was through the roof. It’s not something I have ever had trouble with before withdrawal. If someone did not get back to me immediately via text I’d pretty much assume they’d died in a horrific accident. I just could not cope with anything.

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To be quite frank I pretty much wanted to die most days. No correct that, I didn’t want to die, I just could not live like that for another second, it was pure torture. I just needed a break from the relentless symptoms – I was desperate and terrified of things getting even worse. The symptoms were so bizarre I really never knew what would pop up next, anything goes. I lived in a state of constant terror. What do you have when you can’t rely on any of your senses and you’re plagued with endless hallucinations? When do you say enough is enough? It was that bad.

The Bristol Tranquiliser Project were wonderful. My poor GP was totally out of his depth and wanted me to see a Psychiatrist because he was still on the,  ‘this doesn’t happen with benzos as there’re safe’, train. The charity helped my GP and my family thorough it all. They explained that all my symptoms that I was having, although shocking, were completely normal. Read that again. TOTALLY NORMAL. The Bristol Tranquiliser Project are on the phone to people like me all day long. It’s unbelievable. How does nobody seem to be aware of how bad these drugs can be if this hell is considered normal?

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Not only was it shocking that this horror show of symptoms (and I’m just explaining the predominant ones) was just normal, this can last for up to two years AFTER getting off of the evil stuff. I hadn’t even got off it yet. It wasn’t a case of getting through each day, it was about surviving the hour. My poor mum and dad really stepped up to the plate and did absolutely everything within their power to help me. I know it was horrendous for them to watch me suffer for so long and not be able to do anything about it but wait it out with me.

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We knew there was no point paying large amounts of money and packing me off to a detox centre. These centres advertise the freedom from these drugs sometimes in as little as two weeks. To someone trying to get free of them this sounds like absolute heaven and too good to be true – that’s because it is. Yes, they can get you off Diazepam in two weeks but Diazepam has such a long half life the withdrawal symptoms may not even start to hit you until you’ve packed your bags, said your goodbyes and left the facility. Just imagine that, paying vast amounts of money for ‘expert’ help and they haven’t even helped you with the withdrawal, just put you in it, anyone can do that. I can only imagine how fun that rapid withdrawal is after the problems I encountered over months and months. I’ve heard many horror stories about these facilities.

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And the worst part of all of it? If I’d got the right help in the first place (it wasn’t for lack of trying) all of this could likely have been avoided. My taper speed was simply too fast for me.  It’s awful that I went through days of seriously contemplating ending my life (and a lot of people sadly do act on those desperate thoughts) over something that could be totally avoided if only it was educated properly and people were more aware of the dangers. Hence me harping on about it on my blog and social media. Despite the dangers of these drugs becoming more and more apparent the amount prescribed is still rising year on year. There has been a 29% increase in Diazepam prescriptions over the last 12 years. This has to change.

If anyone is UK based and searching for help with withdrawal from benzodiazepines or antidepressants I highly suggest the Bristol Tranquilizer Project (they’re NHS): Bristol Tranquilliser Project – Home (

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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 😉