Pain Concern

clonezapam- people’s thoughts and experiences x

I’ve been prescribed this, however I’ve been reading up on it online and most people who have taken it have no had great experiences with it.

So just thought I’d put the question out there to everyone on here as I trust you guys more lol

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good for muscle spasms can help with neuropathic pain but weak evidence. Can cause tolerance and addiction - same class of drugs as diazepam and lorazepam but much stronger than diazepam.

I assume you mean clonazepam as there is an antipsychotic with a similar spelling.

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Yeah sorry for mis spelling .

Thank you for that, That’s the reason I’ve been prescribed it for horrendous muscle spasms , I took diazepam but it did nothing I didn’t even feel anything at all so hopefully this helps

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Yes, the ashton manual provides a conversion of benzo's. benzo.org.uk/manual/bzcha01...

Other guides use slightly different conversions but clonazepam 500mcg is approximately 5-10mg diazepam equivalent.

Did they start you on 250mcg ?

I take 500mcg three times a day.

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I’m starting in 500 at night x

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That is good and it will help you sleep. Obviously be careful about drowsiness in the morning and driving etc. I do think it is necessary to dose twice daily, or in my case three times a day, I found spasms kicked in about 7-8 hrs after clonazepam dose.

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I’m completely bed bound anyway so that’s not a problem.

He said I can up it if I need to

Thank you

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Thanks: great link!

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Hi, was that aimed at me ?

sussexpartnership.nhs.uk/si...

Another table. Professor Ashton is an expert and dealt with these drugs for many years.. Personally i feel 1mg clonazepam is way stronger than 5mg diazepam, and the Maudsley thing is underestimating potency.

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Yes! Just wanted to thank you for that great benzo link, fibrosucks!

And now: thanks for this sussex link! Am vvvvv glad to more fully grasp the significance of having been prescribed clonazepam...my autustic epileptic godson (now 21 and severely disabled) was on clonazepam for years...his parents couldn’t understand why i was on it too. You’ve helped me lots to appreciate the significance.!

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No worries, if you use the department of health figure of 250mcg per 5mg diazepam, 4mg clonazepam is a massive dose in diazepam equivalence. It would not be easy to stop I imagine, especially long term i.e months or years.

Interestingly lots of people in the US take it especially for anxiety, and from what I gather a lot of docs use the 1mg clonaz = 10mg diaz. From clinical experience using both medications, if I could "guess" I would go somewhere along there, but my 1.5mg clonazepam daily I definitely wouldn't estimate as being more than 20mg diazepam.

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YIKES....and there i was being ordered to stuff myself with these tabs relatively short term...well, am a much more alert & better informed patient now...especially with your help re the significance of clonazepam!

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Life is a balance between pain and medication. Lowest dose for the shortest time is always best, but anyone with a chronic condition knows it isn't always possible.

Some people who are in their 50's /60's take their diazepam 5-10mg a day and insist they will be on it for the rest of their lives. I can totally understand.

I'm ideally not trying to take more than 1mg a day if i'm honest. That is my comfort zone. But equally if I was in a lot of pain, i'd pop an extra 500mcg tablet. Life is too short to suffer every day and worry about an occasional pill.

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Agreed...my daily rheumatology/immunology cocktail is: hypdroxychloroquine 200/400mg + amitriptyline 20mg + prednisolone 10mg + mycophenolate Cellcept 1000mg + coamoxiclav 625mg 2x...every element is proving to help my quality of life ENORMOUSLY...and these days (fingers crossed) the only pain meds i need are paracetamol & ibuprofen gel...but i’m always ready for something unexpected, so am v glad to be better informed re benzodiazepines: thanks again

(Sorry: not sure if you’re replying to me or bexamy, or us both...but am v glad to meet you 2 here)

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I only take a low dosage.

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Does it help?? How long have you been taking it? Do you get side effects??

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Used for about 10 years. At first made me a bit drowsy in morning, but got used to it.

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I’m always drowsy in the mornings I’ve got a four year old who doesn’t like sleep and I body that hates it even more lol xx

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Yes, but it was a only the lowest dosage which you can take in half and everyone is different. It was to help with sleep.

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Great discussion!

For many years i’ve been prescribed clonazepam for muscle spasms related to early onset cervical spondylosis following on from a childhood spine injury. I only took it when my chronic spine pain went into flares of extreme nerve firing + pain as well as severe muscle spasm

My pain consultant prescribed the clonazepam alongside meptazinole (an opiod analgesic) saying this is the combo he gives delicate elderly ladies (at that point i was in my 40s). He never explained clonazepam is many times stronger than diazepam! So am v grateful to learn this here. I can’t recall the dose i was on, but it wasn’t low.

This combination really did help me stay functional during flares of terrible pain....probably for maximum 2-4 weeks or so at a time? It didn’t make me sleepy and i never had any trouble coming off clonazepam..if i can remember, i’ll add the dosage to this reply when i get home

I’m lucky: my pain consultant performed a series of bilateral cervical, lumbar & sacral spinal facet joint denervation procedures...these have numbed my chronic spine pain enough so i haven’t had to take clonazepam for years. But i did resort to taking it once and was surprised cause it made me vomit for the first time ever...which has put me off taking it again...i think the reason i vomited is that rheumatology had put me on a lot of heavy duty daily meds for lupus which combined badly with the clonazepam

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Thank you so much for this in-depth response!!

That’s great to hear it did work for spasms as mine are just uncontrollable and others I’ve tried have done nothing :(

I’m so glad your much better now you must feel amazing. Yeah I don’t blame you that it put you off lol. I’ve been on very strong painkillers for around ten years so what’s another one eh lol

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Take care & good luck...hope you’ll let us know how you get on...if i can find my dosage info i’ll let you know! XOXO

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Yes please that would be a huge help. Thank you so much I will let you know how I go , did you find it helped from the first dose x

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Here, as promised, are those details from my files:

Clonazepam: 1-2mg, 2x daily as required...i don’t remember having to be on it for more than, say, 2 weeks continuously. My notes say this dosage helped within 5 doses (eg 3 days) with severe nerve pain+firing & muscle spasm. It made me feel queasy & slightly headachey, also a bit agitated/manic - but my husband says i seemed to be going around in a happy daydream (he quite liked the effect). Each time i stopped taking it, i needed 3 days for its effects to clear my system

Meptazinol 200mg every 3-4 hours as required, and i did take this more than the clonazepam

XOXOXO

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Thank you very muc this has been very helpful. I’ll be starting it tomorrow so fingers crossed it helps

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Yes: fingers crossed...please let us know how things go XOXOXO

PS i am diagnosed with Hypermobile Ehlers Danlos Syndrome as well as infant onset systemic lupus + early onset sjogrens & small vessel vasculitis...also hypogammaglobulinaemia (an immunodeficiency)...in case this overlaps with your diagnoses

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Oh bloody hell you poor thing, how do you cope with all of that? Where is your pain with the hyper mobility ED? Ive got that in my hip and problems with my overies and now something with my thyroid , it’s all fun and games lol xx

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Fun & Games is Right!

My hEDS issues are all over my bod...eg paroxysmal haematomas everywhere, resistant to pain meds/anaesthetic...my most typical joint issues are: spinal facet joint + shoulders/fingers/thumbs + sacroilliac joints subluxations + feet/ankles generally....etc etc

my gyn issues are complex because am a DES Daughter (internal repro organ birth defects + infertility + endometriosis caused by 5 months of daily exposure in utero to the notorious endocrine disrupting artificial oestroegn diethylstilboesterol...officially proven to give us high rates of rare vag cancer & pancreatic cancer)

But, hey, i’m OK cause the NHS pays me close attention/monitoring now...and my collection of multisystem treatment plans really are helping + i practice lots of self help/ lifestyle stuff...i reckon every day is a bonus...which is “easier” now i’m a pensioner...

XOXO

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Oh wow, you sound so positive though that’s great! I’m glad they are paying close attention to you, a lot of the time people are just so overlooked and it’s not right.

I’m only 27 and every year another issue comes up so not looking forward to what the future holds lol x

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Courage...if things can turn around positively for me after 5 decades of being really really poorly/ housebound etc, they can for you too. Research into immune dysfunction & connective tissue disorders is FINALLY yielding benefits to us all...your generation should get more recognition & better care than mine. Hang on in there...i think you’ve got a great attitude...stay as well informed and self aware as you can. Am giving you a big hug

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Thank you for that sending a big hug back!

Yeah that’s what I try to do and do a lot of research, luckily my mum is a nurse and works in the hospital I’m now being treated at so that helps a huge amount and having the right doctors is such a huge part of that and I feel I finally do have great doctors looking after me and actually listen to me lol

Xx

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My goodness, you have a lot to deal with!

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Am not alone...my lupus & hEDS & PID and other health forums include people with overlapping comorbidities more or less like mine...and i’ve run into people like me here to...thank goodness for our wonderful forums...feeling isolated by illness is dreadful (i had 40 years in the diagnostic wilderness having medics blame my chronic spine pain for my multisystem signs & symptoms before the nhs finally figured out my immune dysfunction & connective tissue disorders...it is what it is)

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Not heard of meptazinole being used in 20 odd years, at least not often..

Interesting.

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When clonazepam + meptazinol were prescribed to me in combo, i was still relatively young, but progressive multisystem debilitation had rendered me very frail (my infant onset lupus diagnosis had been kept secret, and the NHS didn’t connect the dots of my many manifestations until my 50s... so i am a great example of what happens when very early onset autoimmune disease patients go without daily immunosuppression for decades)

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sorry to hear, so meptazinole was prescribed at least 10 years ago... is that right ?

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My notes say i last fulfilled a prescrip for meptazinol in 2011...but i had a big bad session taking clonazepam + meptazinol in 2007

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I’ve been on Clonazepam for years and it works great for me. I don’t find it addicting, only take it as needed. No side effects.

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That’s great thank you. I’m really looking forward to trying it tomorrow now I just hope maybe I can have a good few hours at least for mother’s day lol

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What are they prescribing it for?

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Severe spasms in my thigh and hip

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Good luck!

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I take it for bad muscle spasms. Makes me sleep forever, and turns me into a zombie the next day, but I'm willing to deal to stop the pain!

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I am very sensitive to benzos, though. I take 1mg of diazepam, or 0.25mg of clonazepam. ;)

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So far it’s an ok tablet doesn’t stop my spasms but helps me closer my eye for a few hours at least lol

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what dose are you on now ? Have you tried the non benzo's - there are a couple of muscle relaxers.

Was the diazepam you tried previously a high enough dose ?

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500 I think. The pain and the spasms I get are so strong I need something strong.

I was on a high dosage of diazepam I’ve had it before for my stomach pains and it did nothing then but only did them for a week this time as it did nothing so didn’t see the point. I tried quinine that gave me restless horrible legs.

The clonezipan is working ok at the moment it helps slow them down and not be so sharp and excruciating. Not helping me sleep like some people said.

I won’t try anything else none benzo it’s just pointless. I’ve been on strong painkillers for such a long time now things that aren’t strong just don’t even touch me

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Except non benzo's like baclofen and tizanidine are often better for muscular spasms as proven by their licence. 500mcg a day isn't strong.

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I’m going off what my senior pain specialist consultant and anaesthesiologist and senior nurse mum are saying and doing my own reason. It’s all still trial and error at the moment , I report back in a few weeks so they can up the dose or try something else.

I’ve taken baclofen a few years ago it didn’t do anything. I’ve been in this state for a while so I’ve tried what most people have are there are a large number of tablets I am allergic to or can’t take because of my mental health.

So all my doctors are taking this into consideration when giving me tablets to try they know my extensive history

Thank you though

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Yawn - senior nurse. I'm on such strong painkillers look at me. (except you are not). There is no reason to take medication if there is no functional improvement and still bed bound. (just my opinion) but go make a post on it.

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Wow what a rude reply you don’t even know what I’m actually in.

My mum is a senior nurse why exactly is that yawn.

Please don’t comment on my posts again thank you

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A nurse knows nothing that is why. They get the medication and do as the Doctor says.

Everyone is in bloody pain but life is what you make of it. I would often stay at home and not go out, but realised that the pain is the same so I might as well live a life. You will realise that after going on the course at St Thomas's and after they cut your medication and clonazepam.

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Wow your such a lovely person thank you so much for your input

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Get up off your arse and start pacing your self. A few minutes out of bed a few times a day, to the point you are pacing yourself.

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I was directed here by your other post complaining and yet again you come across self entitled.

It is anaesthetist - and then they specialise in pain, it’s not like it’s two separate specialities like Emergency Medicine and Anaesthesia are.

A ‘senior nurse’ what exactly does she know ? Ask her if she can even give an ibuprofen without a Dr’s signature ?

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wow that is a bit harsh and mean

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I take 1 mg of clonazepam at night to stop my R.E.M. Sleep Behaviour Disorder. It works well and stops me thrashing around.

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