Tampenadol

[Megnstan]

My pain specialist has suggested trying Tampenadol 50mg twice a day for chronic back and leg pain.

I've been on it a couple of days so far it's not been enough to cope with flare up pain during the day so I've had to either use oramorph or tramadol to cope .

What doses are people on and how long do I wait till I get my gp to up the dose?

I've never heard of this pain medication in the 5 years of being on all sorts .

My gp said it's not prescribed very often.

I have a lot of damage to my lumbar spine after complications from a discectomy needing a further two more operations for a large csf spinal fluid leak and then a spinal sepsis infection got into the discs and bone.

It looked like I needed a spinal fusion but the history of infection and scar tissue look like that won't happen now.

I'm waiting for a trial for a nevro spinal cord stimulator so the Tampenadol was suggested for now.

If anyone has any information on how Tampenadol has worked for them and what dosee. Or anyone had a nevro spinal cord stimulator?

[Pam6971]

Tapentadol is the sister to tramadol so I was told by gp so I’m surprised you’re still on tramadol, I was given them as I refused to take tramadol again, I was on same dose, they’re 12 hourly medication, done nothing for me, I had severe nerve pain in my left arm for 6 weeks June 2017, doctor put me on zomorph instead, didn’t help with nerve pain but eased my neck pain, saw another gp who prescribed sevredol to take once or twice a day, nerve pain stopped, doctors can’t understand why as sevredol is a morphine sulphate like zomorph, I usually only take 1 off them a day unless pains bad then I’ll take another, 1 gp tried to get me to stop taking it, told her no chance as it’s the first tablet that’s actually worked for me, think I’ve tried majority of painkillers, just be careful with the tramadol, they’re a nightmare to come off, withdrawals from them are horrible, I missed a few doses one day as wasn’t feeling great, had an early night, woke up with hot and cold sweats, spent the whole day in bed, following morning I rang nhs24, had to put towels on my bed and wrap myself in them, never sweated like that in my life, spent 8 hours in hospital, they put it down to a viral, got home and felt the sweats starting again, took 1 tramadol & they stopped, then I realised it wasn’t a viral but withdrawals, weaned myself off them gradually, wouldn’t touch them ever again, I was on 8 a day for about 2 years. Speak to your gp and tell them tapentadol is doing nothing for you, I’d never heard of them till I got them, others I know who’ve tried them say they help with their pain and they get a great sleep on them, your gp will have to try you with something else, I hope you find something that works for you.

[Megnstan in reply to Pam6971]

Thank you

I've found my sleep has improved so I'm going to stick with it for a few weeks. I've got to phone my gp Monday to let her know how I'm getting on. I'll get her to up the dose a bit see how that works.

They want to swap my gabapentin to pregabalin to see if that helps me more for nerve pain once this is sorted out.

[Pam6971 in reply to Megnstan]

My friends have said they got a good sleep with tapentadol, pregablin didn’t work for me either, but if gapapentin aren’t working then no harm in trying the pregablin.

[Hidden in reply to Pam6971]

Hi Megnstan

I am so sorry you're in so much pain. First bit of advice in take time off work for 6 weeks if you can afford it or ask you Doctor to write a letter that states due to your injuries and incapacitating pain you will only be able to due light duties and there may be times when you need to lay down in the sick room. You really need to get your pain under control. Ask your Doctor for 100 mg of Tramadol twice a day and also breakthrough medication. He doesn't know what you are trying to cope with with regards to your pain. If 50mg isn't working then your pain won't respond to it. You should try every thing your Pain Management Doctor advises. It's possible that you have neuropathic pain. It is now 15 years and it is dat to day.my dose it much greater than yours but I also take lyrica and Rivotril. I am under the best contro I have been on. I wish you luck. Read what ever you can on Clinical Trials and articles in pain journals. Understand you condition and don't let Interns at Hospital intimidate you.

Love Anna X

[Megnstan in reply to Hidden]

Hi Anna

Thank you for your reply, I got a 2nd opinion from a London hospital and i had a 360 L4/5 fusion in November 2019 ,my leg pain reduced a lot which is amazing so far, my back pain not so good but it's still early yet to be sure of the outcome on that as I'm only just starting PT and some gentle swimming.

I'm off work at the moment to concentrate on getting better or at least as best as I can be before I return. I know I'll never be pain free , I understand that but this has made a difference to part of it.

Some days better than others.

I work with autistic children so taking a break when I need to isnt an option but I cut my hours to 3 afternoons so at least when I go back it's not full time .

Do you have spinal problems too?

Take care

Mandy x

[Hidden in reply to Megnstan]

Yes, my spine in concaved and convexted. The are facet joints and other things in my lumber spine need surgery but I cope with the pain most of the time because the meds I take help with the pain in my lumber spine assist my lumber spine. I have a great deal of trouble sitting. I have a blood cancer and the back pain became very active again in 2008. I had a nerve simulator installed along the nerve path that caused the most incapacitating pain. I still needed meds but I left the machine on day and night. After four years, I couldn't find a doctor who would reconnect 8 of the contacts that had disconnected so I had it removed. Take care and try not to injure your back anymore. God Bless. Anna

[Jtal19305]

Hello Meg,

I've taken this drug in the past for my leg and foot pain caused by a failed back surgery (imo no one should ever get back surgery unless your in an accident or close to being paralyzed, as intervening with the bone, tissue and nerves near the spine is not well tolerated by most and the nervous and Musculoskeletal system gets out of wack). With that said, Tampenadol did nothing for my pain, it is no better than Tramadol at 10x the price. What works for my chronic nerve pain is oxycodone. I know this opiod has been wrongly vilified and conflate with the many OD deaths caused by fentanyl, herion and those seeking to only get high. For true chronic pain sufferers, these opiod drugs are a lifesaver. It's too bad what's going on now and we need to get a collective voice to have our concerns dealt with. Good luck

[Megnstan in reply to Jtal19305]

They don't seem to prescribe oxycodone in the UK. I've never been offered it.

Morphine sulphate I've been on before and I have oramorph the liquid form for breakthrough pain. I don't really want to go back to morphine tablets not at the moment yet anyway.

I think you are right spinal surgery is so risky I did need a decompression and discectomy as my foot was going numb and my leg was starting to as well and the shooting pain was horrible. I thought it was going to be ok and didn't expect all the complications after.

Did you have the long acting tampenadol? What dose did you Try?

Thank you for your reply

[johnadams in reply to Megnstan]

They do, they just don’t like prescribing it as it’s stronger and liked more - I.e more euphoric. I’m on it since 2012.

[nevro1]

Hi

Over the years (40+), I have had too many proceedures to remember and two major spinal (lower back) Op's. Worn the T-shirt on most nerve and pain pills....of which combined turned me into a depressed Zombie.

Finally got a place at St.Thomas hospital, London....Input Pain centre. This was a....Right time... Right place for me as a company called Nevro were trying to introduce their new Spinal Chord Stimulator to the NHS. After interviews and some testing I was lucky to be chosen to be part of the clinical trials.

So it is now nearly 10 years later and for me it was the best thing. I estimate it gives me a 70% reduction in my pain.....it has almost completely eliminated the pain/pins n needles/hot n cold sensations in my legs and feet.....but as you know the pain you get that only similar sufferers can understand is still there in the background and (for me) kept at bay by...Longtec 30mg 2x daily. But bear in mind this is now and over the ten years since the Op I have got rid of all the nasty nerve pills and the rapid acting CD pills.(still have some for the occasional bad days that I don't know what to do with myself, but not taking them daily....sometimes like sweets ... You know what I mean!!!)

Long and short of it is what works for you, but I now have colour in my face. Not the grey drawn look...I want to go out and meet friends....not lay on the floor not wanting to see or speak to Anyone.

Try...try...try to be as positive as you can, it seems impossible with pain that fucks you up (can't think of a better word to describe...apologies)

[Megnstan in reply to nevro1]

Thank you for your reply it's great to know that the spinal cord stimulator can help when all else fails and to get off medication or most of it is Brilliant.

I had been on the waiting list last year they said 18 months is an average time to trial .

While I was waiting I got a second opinion from RNOH stanmore London and they said a spinal cord stimulator is the last resort and at my age i shouldnt be there yet. They said my best chance at reducing the leg pain was a 360 L4/5 fusion.

So after a lot of thought I went ahead in November 2019 and had the fusion , I'm 12 weeks ish post op and my leg pain has very much improved and am cutting down gabapentin.

My back pain however is still not good but it's still early and I'm sure have screws hammered in there is part of that and needs to settle down .

My follow up appointment was all good xrays looked fine . So I know it's a long recovery and I need to work on getting strength back especially the left side but I think I made the right decision and the pain clinic has kept my file should I need a spinal cord stimulator in future .

[nevro1 in reply to Megnstan]

That is very good news and a positive out of a shitty negative. I agree that don't have something unless it's absolutely necessary. Mine all stated from a car accident in the late 1970's and I was 51 when my SCS was implanted.

Try to keep your core strength up (it really does help) and sadly there is no wonder cure that you wake up the next day and all is well in the world....it takes time...forever it seems, but any improvement is very gratefully received.

Be lucky and don't let the bastard get you down...,