Neuropathic pain

JonnycJonny

Those of you out there with varied neurological conditions how are you managing with Gabapentin or Pregabalin - this first line medications for keeping neuropathic discomfort at bay. Do they help or come with too many side effects ?

onedayatatime

Hello @JonnycJonny I was on pregabalin for a long time with the dosage being increased continuously. It made me feel 'toxic' and I didn't like it at all. That is just my experience though and others have had more positive results. I was switched over to gabapentin and slowly had dosage increased. It knocks me out, makes me sluggish but I feel less 'toxic'. However, I don't feel any benefits with pain and don't want to keep increasing dosages . I plan to come off of it because I don't like feeling or being so sedated. This may be because of interactions with other medications I also take (naproxen, codeine and diazepam) But I feel these help manage my own pain better and have less side effects , for me personally, than pregabalin or gabapentin .Just to add, as it may be relevant to your question, they've been prescribed for radicular nerve pain in my lumbar spine.

chiarieds

Hi @JonnycJonny - this just shows that with different meds everyone can get different results.

I was started on Gabapentin & it made me feel so sleepy that I didn't wish to continue with it. I was then put on Pregabalin & have found it so much better & have been on this for years (I don't take any other meds for pain relief). I still have chronic daily pain, but Pregabalin dampens it down a bit.

Generally speaking, Pregabalin does have some benefits in that it can be prescribed at a lower dosage than Gabapentin yet gives the same amount of pain relief (& therefore hopefully fewer side effects).

Personally speaking, I haven't had any adverse side effects with Pregabalin, but, as I say, we're all different, & what works for one may not work for another, so it can be a case of trial & error, with your Drs help. My current GP changed my Pregabalin to twice a day rather than the 3x a day I was used to, tho keeping the dosage the same over a 24 hour period, as he'd found his patients did better with this.

Mine is a central nervous system problem due to Chiari 1 Malformation, so quite different to onedayatatime's problems.

JonnycJonny

Very interesting to hear your experiences. Thank you both for sharing.

I am transitioning to Pregabalin from Gabapentin having been on the latter for a number of years for dysesthesia. The step wise move is proving troublesome - was suggested by my Consultant as the half life of Pregabalin is longer. It is still early days.

Additionally, I have spasticity to contend with - Diazepam and six monthly Botox Injections help to manage the symptom.

It just so happens that I have Chiari Malformation type 1 and Syringomyelia - both treated with previous neurosurgery ( posterior fossa decompression and a syringo-pleural shunt respectively ). Unfortunately, my condition has gradually deteriorated despite the interventions. It has been a slowly progressive decline leading to severe muscle loss.

Very best wishes to you both.

chiarieds

Hi again @JonnycJonny - I've seen you posting but had no idea you also had Chiari 1 Malformation, & sorry to say syringomyelia. Posterior fossa decompression doesn't always help, as I'm sure you've found.

Myself & family have Chiari 1 Malformation associated with Ehlers-Danlos Syndrome (a genetic disorder, & we have the hypermobile type).

I've rarely seen anyone here with Chiari 1 Malformation(CM1) so thank you for saying. I was very fortunate in that I met a New York neurosurgeon online who was just beginning to find some of his Chiari patients also had Ehlers-Danlos Syndrome (EDS) at the same time I'd become convinced that there must be an association between these disorders in 2000. Thankfully he therefore kept me in the loop & has helped me a lot.

I'm sure you know an awful lot about CM1 & syringomyelia, but, if you'd like to look a little further, I've found the resources on the American Syringomyelia & Chiari Alliance Project's website, especially their past video conferences for patients, really good with their info:

https://asap.org/conferences/past-conference/

The neurosurgeon I know is a frequent contributor to these conferences talking about Chiari 1 Malformation & EDS, but his colleagues are equally interesting giving talks about different aspects of CM1 & syringomyelia.

Thank you for your kind wishes & I wish you well. Yes, the half life of Pregabalin is longer, another of it's benefits, so I hope changing from Gabapentin may help.

The only other thing I take is cannabidiol (CBD); it does help with the EDS side, but sadly doesn't do a thing for my neuropathic pain.

older01

I can’t speak for anyone else, but I am on the maximum dose of Gabapentin and I have to have it combined with other pain killing medication. I think that it’s very good for peripheral neuropathy, but my nerve impingement is such that it’s not 100% effective alone.

JonnycJonny

Thank you for your comment. It is so helpful knowing how others are 'coping'.

Very best wishes to you.

JonnycJonny

I know ASAP. I have watched a number of their annual conference videos on You Tube. They have been extremely informative. The Ann Conroy Trust here in the UK has also been helpful as part of my self education over the years - though an inability in the UK to have the type of open QA sessions you see in the States is frustrating.

The natural course of our conditions - whether treated with surgical intervention or managed conservatively - is so unpredictable. Symptom stability - rather than any sort of cure - being the goal of of the neurologists / neurosurgeons / physiotherapists.

Pain management is one of the most difficult things I face as is the muscle wasting. I say I selfishly. I mean we - my wife has to deal with all of this too. You understand.

I believe there is a specific Chiari Institute in New York - perhaps you are referring to them. Dr Milhorat being one of their most renowned research specialists.

Here's to brighter days for us all.

chiarieds

Great you know about ASAP @JonnycJonny - their conference videos are very good indeed.

I do also know about the Ann Conroy Trust, & my son & I were referred to see Graham Flint in Birmingham many years ago, tho he's now retired as a neurosurgeon.

As you'll likely know Dr Milhorat founded the Chiari Centre with Dr Bolognese, which later became the Chiari Institute. Dr Milhorat had written over 800 medical papers about syringomyelia & was considered the world's expert about this at the time. It's Dr Bolognese that I know the better (& he was the assistant director of the Chiari Institute under Dr Milhorat). However it was Dr Bolognese that noticed some of their Chiari patients also had EDS, something Dr Milhorat was initially sceptical about!

Dr Milhorat retired some time ago, but not before he also helped me. At the time our UK specialists didn't believe there was an association between CM1 & EDS & Drs Milhorat & Bolognese both helped me raise awareness about this here in the UK.

Pain management is very difficult & I feel we sometimes may need more resources to add to any beneficial medication. I write this as a long retired physio who now does some of the exercises I used to teach (particularly diaphragmatic/abdominal breathing which does reduce pain)! You may find something of interest in the following link helpful; it's often a combination of things that seem more effective. Again, we're all different, so trial & error. Please see: resouces about chronic paindiscussion/102784/resources-and-tips-for-those-living-with-chronic-pain

JonnycJonny

Thank you for referring me to the resources you have posted on this forum - very useful.

I have read a little about EDS - a complex hereditary syndrome. Must be a daily struggle dealing with symptoms that can only be treated through physio.

I have found deep breathing does take away some of my chronic pain severity - unfortunately, shallow breathing is my main 'state' caused by paraspinal muscle spasticity & chest wall tightness. I feel the meds also contribute to shallow breathing.

You are very fortunate to have been under the care of Dr Flint - the UK's expert on Chiari and Syringomyelia.

Best wishes to you & your family.

egister

For me, local cooling, for example with a piece of ice, slightly reduces the pain.