Has anyone else experienced coming off of Diazepam or similar benzodiazepines? I’ve been on Diazepam for over 10 months (so a LOT longer than the recommended 2 weeks max to avoid addiction). I’ve been slowly weaning off of it over the last month or so, with doctor’s approval, and for the most part been fine (few days of bad headaches with each dose decrease).
However, I had my final small dose 2 days ago and since then have felt so rubbish! I’m so shivery and in a cold sweat, especially at night. I feel like I’m off that movie Trainspotting lol!
It seems silly to be like this when I was down to only 1mg in the end, but I guess it’s the not having any in my system at all. I Googled and it says withdrawals can be at their worst a couple of weeks after your last dose.
Am I really in for worse?! Gah! Anyway, mainly a rant because it’s my choice to come of them, but also I know you folks have a wealth of experiences. Any recommendations for making this time any easier? Do I just have to ride it out?
Sammy x
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SammySeal
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This sounds very unpleasant for you I don't have any relevant experience to share sorry, I really hope what you're experiencing settles soon.
Try not to scare yourself by Googling too much but do contact your doctor or team if it feels like you need some support with any of the symptoms you're experiencing, especially if you're struggling to sleep. A chat with a pharmacist might be helpful too if that's an option for you, they might be able to advise on likely timescales, any side effects that are more/less common, and anything to look out for that would be cause for concern?
Hopefully others on here will have some helpful experience they can share - I don't know if trying to keep busy in the day helps as a bit of a distraction at all...
Take good care and I hope things start to ease soon.
Yes, definitely keeping busy helps. I still manage to get an OK amount of sleep as I still take another med at bedtime that makes me sleepy, but the weird dreams and nightmares are horrid too. Typical just when the kids are back to school, that I feel like a lead weight trying to get out of bed in the morning!
I think I can deal with it, as long as it doesn't get worse or last too long. If so then I'll see what a doc recommends.
I haven’t taken those particular drugs, but I know that’s why doctors here won’t prescribe them for regular use, because of addiction. The withdrawals you’re experiencing are a kind of addiction, because your body is used to them and is protesting coming off. Here in the US there are medications that can be prescribed to deal with those kinds of reactions and so I think Jenny is correct that a call to your doc may be in order. Whatever you do, don’t cave and take more of them, or you’ll just have to start all over again. When I was hospitalized here, there were people in the unit who were detoxing off prescription drugs (like the ones you’ve taken, not the hard core street drugs), and they were able to be off and get discharged within a week. However I know they had medicinal assistance. You might also look up what kinds of home remedies can be helpful for drug withdrawal, if you haven’t already.
I did suffer through some withdrawal from my antipsychotics and it was tough but usually it meant suffering for a few unpleasant days and then it improved. I also took my hydroxizine which is an antihistamine during those times and that helped. Ask your doctor for assistance.
Good idea about looking up what I can do ease the transition. I found some useful, can't hurt to try ideas, such as drinking extra fluids to avoid dehydration, staying cool to reduce sweating, using distractions to keep your mind off things (like Jenny suggested!), taking ginger to treat nausea and having a support system in place. Nothing much to help with the shivering/jerking, but taking ibuprofen and having salt baths can help apparently.
I read that my current arthritis flare-up may also be related to the withdrawals, as inflammation is increased.
I too have withdrawn from other meds in hospital, but they were always quickly replaced by a different med, and in hospital one doesn't have to get on with life/work.
Oh SammySeal I'm sorry to hear you're suffering with withdrawl at the moment. I hope you can find things to help you with it. I definitely find if I'm too hot at night it causes sweating and weird dreams / nightmares. I sleep with the window open and just a duvet cover over me, to keep me cool if I'm feeling hot.
It will definitely get better in time, and you've done so well to reduce it! It's good you are still managing to sleep well, sleep is so important, as we know!
I'm quite the expert at trying to keep cool, thanks to my age! Can totally recommend fans that go around your neck and blow at your face/neck, if you run hot like me. Wouldn't work in bed though!
I'm afraid it got a whole bunch worse and to be honest I'd like to tell you about it to get it off my chest.
I spent the weekend in agony with muscle spasms, didn't sleep for 3 nights, intense dizziness & nausea and hardest of all, really nasty hallucinations. I've never felt so terrible, in hindsight should have got to A&E pronto, but instead waited until Monday as couldn't face a day in A&E.
Saw a community mental health nurse on Monday who seems to think it was largely a mental health crisis episode. She had the psychiatrist put me back on Diazepam unfortunately, just to get me through it. I felt lots better once I got some Diazepam back in me. However, because I started vomiting up blood in the car on the way to the nurse, I got sent to A&E anyway!
They weren't too concerned about the bleeding (following some hideously invasive tests) as they said it was only slight and likely due to my NSAID prescription for arthritis (I'm not good at remembering to take it on a full stomache). They were however a bit concerned about me having low blood salts (potassium and sodium) as I'd only been sick a few times. The A&E doc basically implied I misuse my laxative prescription which is absolutely untrue, I hardly take it. Sent me home to eat crisps (LOL!) and have another blood test in a week.
Thing is you see, low blood salts can cause all the same symptoms as withdrawal, right down to 'delirium' which could even explain the hallucinations. So now I don't know which of the 3 situations explain what happened - mental health crisis, diazepam withdrawal, low blood salts - or maybe a combination.
I'm really fed up to be back on diazepam, but I feel 90% better, am sleeping, just dizzy and weak. I'm really scared to come off it again as what happened was horrendous, and I'm not being dramatic, I would have gladly asked the vet to come put me out of my misery. I need to talk to someone to better plan a strategy for coming off the diazepam, as I'm convinced that was the main cause.
Oh goodness me SammySeal I'm so sorry you've had such horrendous symptoms and had to go to A&E. It sounds horrible. I'm glad you're feeling a bit better now. It is frustrating that you can't quite pinpoint what might have caused them.
I hope you can maybe get some more mental health support from a psychiatrist etc in weaning of the diazepam, it does sound like you need a bit of a better plan.
That sounds horrendous, I'm so sorry to hear what you went through last weekend. Including the implications made by the A&E doctor.
Hopefully the repeat blood tests next week will give you some answers with regard to the low salts. It does sound as though the diazepam withdrawal played a role if having some back in your system immediately made you feel so much better, but then those symptoms may have also been compounded by the other things perhaps - what a nasty result for you I'm so glad you're out the other side of that experience and hope you can continue to rest and build back your energy.
Yes do try and talk it all through with your team so there can be a plan in place to prevent that happening again. Coming off the diazepam sounds like something that may need to be done in a very controlled way so I hope you can get lots of support in place ahead of the next attempt to come off it completely.
Do write any time, I'm always happen to listen Take good care and take it easy over the weekend.
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I don't have any relevant experience to share sorry, I really hope what you're experiencing settles soon. 
What else could go wrong? 
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