Diazepam long term use

onedayatatime

Ive had radicular nerve pain in left limb and back pain for over 6 years.

Long story short, had epidural injections, nerve blocks and microdisectomy on L4/l5 with no reduction in pain or symptoms.

I have lumbar scoliosis, stenosis, arthritis throughout lumbar spine, impinged compressed nerves, dehydrated discs, bulging discs.

My back pain has worsened and my left limb is weak and goes numb.

I've been on pregabalin and switched to gabapentin, codeine, naproxen, tried tramadol and take 2mg diazepam twice a day.

The gabapentin zones me out and I really dislike it, I can't seem to function, think clearly on it. I'm on 900mg. My limb still burns.

Neurologist reckons because I didn't get treated quicker the likelihood is nerve permanently damaged. He's discharged me from his care saying come back in another 6 months to talk about spinal chord implant.

In the meantime, my GP is giving me a hard time about my diazepam prescription. I've been on it for several years, first 2mg a day then increased to 2mg twice a day several months ago.

I find it's the only thing that seems to help with the spasms in my back, lower leg and foot.

He's refused to prescribe my last prescription and seems to want to half my dosage of diazepam with any notice.

I don't think I'm on a particularly high dose of diazepam and if anything am more concerned with the gabapentin.

Am I being unreasonable asking for the continuation of the diazepam???

If Ive a chronic condition that all these procedures have failed, is it reasonable to ask to continue with the diazepam if it gives some relief?

At the moment I feel like he thinks I'm some out of control drug taker which has really upset me. He sent me a text message Friday about my 'over usage of diazepam ' and of course I haven't been able to make any appointment with him due to the weekend. I'm prescribed 14 tablets every 7 days! He says I can't reorder for another week!

Sorry this has turned into a rant.

I would really like to ask others who are prescribed diazepam if they have been receiving it long term or if anyone has had difficulties with their repeat prescription of diazepam due to long term use, of their experiences.

Thank you.

Santosha12

https://forum.scope.org.uk/discussion/132285/diazepam-long-term-use

I am so sorry for the pain you suffer and this situation with your diazepam prescription. (I'm not on it; have been in the past but very short term use). But a few pointers (these are what I would do).

Your GP will know they should not be withdrawn abruptly; it doesn't sound as if they have talked to you about an alternative.

My 'go to' re any medications is BNF Online [British National Formulary]. Former nurse and used it regularly in my job.

I would get email address of consultant/secretary to inform them of the problem you're now having. I appreciate they've discharged you but I'd still email for Urgent advice regarding your medication and your GPs approach to it.

I'd be booking GP appt too to discuss but I'd make every effort to get consultant 'on side' re diazepam (and suggested alternative) first, ideally, so you can at least go armed with information to your GP.

Hopefully there will be others here who have better knowledge and experiences that might help you. I do wish you all the very best in getting the right solution for you.

onedayatatime

Thank you so much for your very informative reply @Santosha12

I have spoken to my GP this morning who has understood that there was some confusion with my prescription as the other GP thought I was prescribed 1x 2mg tablet a day.

He has however said that I need to come off of the diazepam as he thinks it could be causing the muscle weakness in my limb??

So he's put my dosage down to one tablet a day, told me to buy some Voltarol max strength (£20) and rub it into my back, foot and leg twice a day. I'm a bit confused because I think you can only use Voltarol for a max of 14 days??

I've also been referred back for more physio.

I am going to try contacting my surgeons secretary as you suggested.

Just feeling a bit exhausted by what seems like a continuation of constantly dealing with all this medical stuff. I felt that the diazepam was the only thing that helped with the constant pinching and contractions in my back and the tightness and contracting muscles in my limb.

I thought I was reaching a point of mental acceptance and trying to get on with taking my meds and doing the best I could.

Passerby

I believe your GP is rather worried about you getting addicted to Diazepam, and they're right.

Because they know if you keep taking it, you would develop tolerance to the 2mg and the dose would need to be increased gradually, which would lead to addiction.

And once you get addicted to Diazepam and run out of it one day, trust me, all your other pains would all of a sudden become minor, as its withdrawal symptoms are unbearable, and coming off Diazepam is a long and tough journey.

Diazepam is the generic name for Valium, in case valium tells you something.

Diazepam, like any other benzodiazepine, brings more problems than it solves. It's easy to get hooked on it, but very hard to come off it.

onedayatatime

Thank you for your reply @Passerby , I really do take on board your point of diazepam addiction and the use long term. Admittedly, I think I have tried to overlook potential risks because of the benefits I've had physically from using it.

My personal experience of taking diazepam has been that is has allowed me to more physically able because it eases the tension and contractions I experience. These contractions in my leg and foot pull my foot under as I walk making it difficult to place my foot properly or to bare weight on my leg. The diazepam helps ease this and whilst I can't walk great distances, it allows me to be that bit more mobile.

It also helps relieve the sharp pinching and tightness I experience across my lower back and the spasms when I move and allows me to lay comfortably at night to sleep.

Unfortunately, I know that Voltarol is not going to relieve these symptoms. I've previously tried the gel at the very beginning of this 6 year journey but my medical condition is beyond aches and pains and is a degenerative one affecting my spine and nerve damage.

On a positive note, I spoke to a different GP today and had a much more productive conversation.

I explained how I had concerns that without the diazepam I would return to how things were before, spending a lot of time laying down and not bearing weight through my back or limb.

They have suggested that I do wean off of the diazepam but have suggested an alternative medication, Baclofen, to trial.

I do feel a lot more relieved today knowing that the GP today has listened and talked me through options and things.

JonnycJonny

Very sorry to hear about your chronic pain.

I too take Diazepam for spasticity alongside Gabapentin / Nortriptyline for neuropathic pain relief and Lidocaine plasters for cutaneous dysesthesias / allodynia.

You are far from the maximum recommended dosage for this drug when used as an antispasmodic.

As you are fully aware, Diazepam is primarily prescribed for 'anxiety issues' and so comes with a high risk of dependency in the long term. Then again, all my medications come with the same risk.

I personally find it beneficial - enables me to get through each day which is what matters most to me.

Raise all issues with your GP / Consultant - we can only sympathise but not advise here.

Best wishes

Santosha12

https://forum.scope.org.uk/discussion/comment/1010718#Comment_1010718

I'm so sorry I didn't reply back in good time; and I am very pleased you've been able to speak to a different GP. Baclofen was on the tip of my tongue, but I couldn't remember the name but have nursed patients (with MS) and muscle spasms and it worked well for them. I do hope it works well for you🤞.

Many pain relief medications can become addictive but when somebody has degenerative/progressive disease quality of life has to be the major consideration - this second GP has given proper consideration imo 👌 and the one who was merely reducing it without proper consideration is not doing their job properly and for suggesting Voltarol.... I personally would be avoiding them like the plague.

I sound like I have little patience with some of the GPs but for a very valid reason. My mum had two dementias and two cancers (surgery for one of the cancers and radiotherapy on her face and neck in 2020), two years before she passed away. She'd been on bupranorphine patches for c 2 years and I cannot begin to tell you my frustration, and anger, that her patches were stopped 'because they can become addictive' and without discussion with me or alternative medication. The phrase 'I did my nut' is probably the most apt although fairly calmly considering the circumstances. Mum was put back on them immediately. She was 80 bless her and passed away two years later.

So you have to watch like a hawk what some of them do. I have a huge respect for most of the GPs I've interacted with and absolutely zero for (fortunately) a very small number.

I've mentioned it in previous post but I cannot recommend highly enough the BNF (can be accessed online). I wish I'd used it myself in December when I was prescribed Indapamide incorrectly, alongside my other high dose meds, which is likely to have contributed to 30% loss of kidney function.

I hope you hear back from your consultant too with their opinion. Wishing you all the very best and take good care of yourself 🙏

JonnycJonny

Just to add botulinum toxin injections could help for focal spasticity / muscle tightening - usually given at Movement Disorder Clinics in a hospital setting.

I get such injections every 5 months. Again talk to your consultant as it may be preferable to adding further daily medication such as Baclofen.

Will all depend on your need and the advice of a specialist.

onedayatatime

Hello @JonnycJonny. As you say, many of these medications come with some associated risks and withdrawal symptoms, but agree with yourself and Santosha12 , there must be some sort of balance when considering the benefits that they can bring. I am pleased that you also find the diazepam beneficial.

I don't like to think of myself as being 'addicted' to diazepam but more dependent on its benefits if that makes sense. I'm not sure if there is a proper terminology for that? I am willing however to trial the Baclofen and hopefully it will give the same benefits to my leg/foot that the diazepam does.

I've noted that the diazepam has now been removed from my repeat prescriptions at the GP surgery which means I will have to make an appointment every 7 days and go through the same conversation with another GP each time. I don't have the energy to do that. So I've made note of the GP who discussed Baclofen with me and will make sure I get to speak to them again. They have requested that I get new blood tests done first before transitioning over, something about checking my liver or kidneys to make sure there's no type of build up ( or words to that affect) to make the transition safe.

I wasn't aware of a Movement Disorder Clinic. My journey has been somewhat of a challenge through the NHS system and I was stuck in Podiatry for a couple of years before and during COVID until eventually being passed to the Lower Limb Surgeon and Neurologist/Spine surgeon. I'm still on a waiting list for an orthopedic spine surgeon. It's been a mixture of NHS hospitals and being seen at private hospitals as an NHS patient. I'm not sure everyone communicates or what information gets shared. Right now I've been discharged from everyone.

@Santosha12 I would just like to say that I am very sorry for your loss of your dear mum. My mum passed away last year and I can unfortunately relate to your own experience of perhaps not having the best of support for her from her medical team. Thankfully, there were some very exceptional people who did do there up most to make sure her final days were made as comfortable as possible. My thoughts are with you.

Thank you all for your help and advice with this post. I will try to keep you updated with the Baclofen transition and fingers crossed 🤞 we'll all get to enjoy some of the sunshine out there.

Santosha12

@onedayatatime thank you very much for your very kind words and my very sincere condolences to you; it still feels very recent to me even though it's just over two years ago.

I do hope the Baclofen works well for you and that you can get your blood test very soon so as not to be without that, or the diazepam, in the meantime.

I didn't realise Indapamide was so tough on the kidneys, especially in combination with everything else so I'm on regular bloods now and it's the eGFR (estimated glomerular filtration rate) that is being monitored as mine was very good c 90% but shot down to 67% then 63% (kidney functioning). Not trying to worry you at all, and these were diuretics so very different medications, just fyi, and 63% is still considered reasonable function for my age (62) I'm just miffed because it was an error in prescribing and I'm not complaining about it to them as my problem with blood pressure is weird and a bit of a mystery but maybe because of Long Covid.

All the very best to you and yes, let's enjoy this sunshine (this could be our summer 🤣🤣).

egister

https://forum.scope.org.uk/discussion/comment/1010960#Comment_1010960

I can't agree with you. My experience of gradually withdrawing from diazepam tells me that the horrors you describe are fiction. The mechanisms of action of diazepam, clonazepam, ... on healthy people and people suffering from chronic pain are different.

Passerby

https://forum.scope.org.uk/discussion/comment/1013812#Comment_1013812

Take Diazepam for an extended period of time and quit it cold turkey without switching to any other medication and then we talk.