I have an incomplete C6/C7 injury, seven years on. I am struggling with horrible nerve pain day and night.
I use gabapentin which certainly helps, at least takes the edge off it. I also use a low dose of amitriptylline which was suggested by my GP. I quit mirtazipine due to side effects, and coming off that was a very difficult experience. I am preparing to try duloxitine and pregabalin instead, weaning off/on over a period of time.
I have seen various pain specialists but have not found a better solution yet. I have also tried meditation, acupuncture, and worked with a pain psychologist. Nothing seems to work. I know I’m not going to find a complete remedy but my quality of life is so poor as I have to spend much time in bed.
If you have any ideas or experiences you could share I would be very grateful.
I’m C4/5 incomplete tetraplegia (skiing accident 2002) too with severe neuropathic pain and I’ve tried everything apart from duloxidine. Gabapentin did nothing for me but its successor pregabalin did the trick. It reduced pain by about 80% (average response in the clinical trials) and I add tramadol 25mg in the morning and 50mg at night. I selected the lowest dose of pregabalin that made the pain bearable (75mg in morning and 150mg at night). Occasionally I need something during the day and then I take tramadol 25mg and paracetamol 1000mg.
Strangely, my pain gets worse when I’m having fun such as meeting friends and family, and I take a dose of tramadol and panadol in advance. After 10 years on steady treatment I rarely think about the pain and it doesn’t stop me doing anything.
Hope this helps and Happy to answer any questions
Hey, I’m 10 years injured and started with Neuropathic / Neurogenic pain after about 4 years I saw Mr Baranowski at Queens Square London, i thought he was really good, we tried Gabapentin And Duloxetine but have settled on Pregabalin. I went for a bladder augmentation 3 months ago because it had reduced to a very small high pressure bladder, now its much bigger and relaxed and my pain is loads better again so now on just 2 75mg a day. Hope that may help you.
I am a C6 Tetra and have been since 1997. I too also suffer from chronic Neurogenic pain and have tried the usual gamete of pain relief medication. I found that after so many months I would become accustom to the medication and although we would up the dosages of the medication I still became accustom to the dosages. The only ones that seem to help and what I have at present is a couple of either Pregaballin or Cocodamol about 4pm. But I am still suffering at a level 5/6 out of 10. The only medication that seems to work is a Herbal one which I use with a Herbal (Nicotiine free) tobacco from H&B or one can use with a steam device without the tobacco which I take a small portion as required in the evening which reduces the pain by at least 20%. I am still seeking alternatives to the prescribed medication as my pain is so bad sometimes I don’t want to move. Unfortunately no two people suffer the same so what works for one might not work for another. You just have to talk to others and your Pain Management Centre frequently to keep up to date with new medications/methods. I hope this helps.
i have these pains regular especially after i’ve slept awkardly or been quite active, only thing i find that actually helps is codeine tablets when i get pains i usually have them for a 7-10 days every few weeks or so, so i tend to take 2 x 25 mg codeine and 2 x 500mg paracetamol around 3-4 times a day helps alot but can be quite addictive, i’d only suggest this if you have no other choice as which is why im having to use them nothing else i’ve tried has ever actually helped unfortunately
I find amtripyline helps me,
I’m a complete T9/t10 with multiple other older fractures in L ans S.
I have huge pain..mainly when sitting plus lots of nerve pain allover legs, bum, back and have tried quite a lot of medication.
Just a word of warning on the pregablin..I had bad side effects and stayed on it for four months to try and get stabilised on it to see if the side effects subsided but no.
On taking my second dose of pregablin I began talking as though drunk then stayed awake all night becoming paralytic by the morning…so much so that an oncoming nurse thought for a mo I’d had a stroke as I was sooo slurey and lopsided. The drunkeness was replaced by three days of non- stop talking, every waking second it seemed and then came the ants on the ceiling..that lasted a long time, plus some other hallucinations. These dramatic side effects lasted two weeks…ants lionger..but I did have a reduction in pain at that time (to some degree) but when that two weeks was up, my pain went sky high and for the remaining four months I was in a total bubble..no spatial awareness, no memory, unable to read or watch movies no concentration, talking nonsense..unable to find words, using wrong words..totally random ones…and slurring. After four months of no change I was taken off pregablin and given gabapentin. Instantly I was more lucid. I do still have cognitive issues (it has taken me many weeks to write this), memory terrible but I am soo much better off than pregablin. Pain levels about the same. A warning on gabapentin though..from the first day I started to take it I zonk out unexpectedly for hours in a coma like sleep of which nothing will interrupt..ie in the middle of getting undressed for bed or mid transfer so legs off bed and bottom on it, I’ll fall asleep for like 12 or 14 hours and regardless of tiredness..I’ve diarised it. In the day I’ll mini dose repeatedly too. If I have visitors I’ll talk to them but the second they close my bedroom door, no matter how wide awake I think I might be or what jobs I’m just about to do or watch tv I will zonk in the blink of an eye. Last week A friend came to stay, I lay down in the afternoon due pain so we chatted and then my friend closed the doir. I thought I was wide awake etc, but the following morning woke at 8 am in exactly the same position n dress..like a statue..my friend was amazed..I’d obviously not moved for 14 hours! And that was on my back..which is most painful position so adds to next days pain etc. The times I zonk are usually at the most inconvenient times and without moving such long time is dangerous for pressure sores etc, continence if not yet plugged in if that’s part of personal care etc. It’s not a great place to be but it’s still sooo much better than pregablin. I know everyone has different reactions to meds and sometimes it’s the mix of medication you’re on so it may not be applicable to you but just wanted to warn you. Especially as I have spoken to soo many other people that have tried pregablin and had similar effects.
My pain clinic have reduced my gabapentin slightly over time to try and improve the sleeping situation and put me on amitriptilin with an increasing dose (but eyesight started blurring) so back to a medium dose..I thought it was to replace gabapentin, but no, it’s in addition. It has taken a while, but it has now started to help a bit with the pain. Spasms in legs increased though so another appointment needed if does not change soon. I also take Tramadol, lidocaine patches, have injections in my back every three months (cannot remember the medication but with steroid and analgesic too).
Sorry for such a long message but I’ve not heard anyone say anything good about pregablin.
Hi I’m new to this but injured in 1998….C5/6 incomplete walker…..I also use yoga and aromatherapy massage to help with stiffness and tight muscles….. Trying to avoid analgesics but use ibuprofen 400 as required……. As others have said what works for one may not work for another….good luck x
I am struggling to find some evidence on what is called adjuvant drugs. In pain management in general, we can use say paracetamol alongside an opiod drug such as morphine. This enhances the analgesic effect of the morphine. I am unsure as to whether this works with neuropathic pain. I would certainly not advise you simply start taking paracetamol as well with you prescribed drugs, but it may be a subject you could discuss with whoever manages your pain with you.
If anyone knows, or has experience of this, let us know.
It’s difficult with pain issues, as everyone is different, and some things work with people and not others. I find exercises given by physios help, and keeping active in the house, standing up (having to lean on things for balance!), rather than sitting down helps. Lying down or sitting for long periods of time makes any pain worse. I use a walker and cannot walk with that for long, then get pain in upper legs. Paracetamol before I go out does help a bit.
I hope, Nina, you find something that helps you. It’s horrible when you know it’s long term.
I pray that everyone will get some respite, and get the help they need.
Thank you Biastai for your advice on motor neurons. It was very helpful, and I have been researching it.
im new to this site, but not new to pain. I have had to laminectomy ops, cervical and lumber. Pain for 30 years +……. meds include 120mg MST, oramorph 15mg/daily, 800mg x 4 daily Gabapentin, 3 types of anti-d’s, naproxen 2 x 25mgs daily……
i suffer from horrendous sciatica plus horrible nagging “tooth ache” type pain in lumber… PLUS neuropathic pain down left arm.
i see my chronic pain specialist tomorrow to see up to date MRI results…… i have been researching SCS (spinal cord stimulator)……. SO I CAN DRASTICALLY REDUCE MY MEDS??
what do you think….. really appreciate any advice
thank you from a very anxious lady from Suffolk
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