Can anyone tell me how they deal with central post stroke pain. I am currently on 600mg Pregabalin and 60mg Duloxatine a day as well as osteo and physio and various other exercise's. I feel the medication is no longer working.. Any ideas on what meds others take would be og help..
Hello Mick,
Thank you for reaching out to StrokeLine at the Stroke Foundation in Australia. We’re sorry to hear about your stroke and the difficulties you are having with ongoing pain despite trying a number of approaches.
Unfortunately, pain can be very common following a stroke and it can be difficult to say just how long you may experience it for.
You mention you are experiencing ‘central post stroke pain’ (CPSP). This is neuropathic pain caused by damage to the brain’s pain-processing pathways, rather than because of any injury. This type of pain occurs more often when sensation is reduced after a stroke. The brain is used to receiving normal sensory inputs, and when it doesn’t, the brain itself produces painful sensations.
CPSP may feel like burning, stabbing, prickling, tingling or numbness on the skin. It mostly occurs on the stroke-affected side of your body. Often this pain is made worse if you are touched or moved, or the affected area is placed in water. CPSP may start days, months or years after your stroke.
If you find that medication and or allied health input such as physio or osteo, have not helped to relieve your pain, there are some other approaches you can try.
Pain clinics and pain management programs can help you find ways to manage your pain in the longer-term to improve your quality of life. If you are in pain despite treatment, and it is causing you distress or significantly limiting what you are able to do, your GP can arrange access to a pain clinic if appropriate for you or you can find available pain clinics or services here on the Pain Australia website. They are Australia’s leading pain advocacy body working to improve the quality of life of people living with pain and those around them.
Pain clinics provide different treatments and advice to help you manage your pain. They use psychological and practical methods to deal with managing your pain, and the effect that it has on your life. The programs usually run for a set amount of time over a number of weeks. Doctors, nurses, psychologists, physiotherapists and occupational therapists may be involved with the program. For example, a physiotherapist might help you to work on the physical difficulties that the pain causes by strengthening your muscles, and a psychologist might help you to manage the mental and emotional effects that pain can have.
It might also be worthwhile to seek advice from a neurologist, if you haven’t already done so. You can get a referral from your GP to a suitable neurologist. It’s important to find a neurologist who specialises in your specific condition of CPSP.
Electrical stimulation and acupuncture may also be beneficial for pain management. Consider discussing these treatments and your eligibility with your therapists and doctor.
Additionally, you could look at registering for any clinical trials or research that may be relevant in the future on pain. You may find some current research trials here, or at the Florey Institute here. One of their pain researchers and specialist in the field is Brendon Hasslam.
For more information and resources on pain management, please visit our EnableMe website here or our pain after stroke factsheet here. Some other resources that may be of interest, offered by Pain Australia are located Here.
Mick, we wish you well in your ongoing journey to find some relief from your pain.
If you would like more information, please do not hesitate to contact us on StrokeLine 1800 787 653 or email
strokeline@strokefoundation.org.au. We are available Monday to Friday 9am to 5pm AEST.
Kind Regards,
Ariane and Alicia
Hi MIck,
I have central post stroke pain in the left side of my face, so it's a bit like trigeminal neuralgia in that sense. It started maybe a few months after my most recent stroke, developing out of numbness. I used to take Pregabalin, but it did seem to lose its effect. Now I take Carbamazepine, 600mg a day. It really just takes the edge off. I also take this stuff called PEA powder, which also takes some of the edge off, but nothing takes the pain away completely.
It goes up and down in waves. Some days I'm almost ok, and other days the pain is just roaring. I also get spikes of pain in various parts of my face, the worst being in my eye or inside my nose (nasty).
The pain specialist I saw basically said I have to take the pharmaceutical path (i.e. drugs) because I don't have private hospital cover. So be aware of that.
One day at a time.
Tim.