Answers for Alice - pain management

Alisa is looking for advice for her sister-in-law. She says, “My sister-in-law had a stroke in September 2020. In May 2021 she started having head, neck, and face pain. She can't sleep through the night because of it and is exhausted. Has anyone experienced this, or has thoughts or advice about pain management? I will make sure that she sees your advice and support. Thanks in advance.

(Apologies Alisa for calling your Alice)

Sherree Morgan

Hi Alice, so sorry to hear your SIL is suffering with sleep deprivation and pain surrounding the head neck and face!! Up until recently I have been suffering terribly with such pain, diagnosed with cluster headaches and migraines, I have started to take propranolol and the difference is incredible, it’s not only helped with sleep and pain, but also my tremors, brain fog (I’m so much clearer) and anxiety! Perhaps a suggestion to the gp on her next visit as everyone is so different! Hope her recovery eases up a little bit for her xx

Karen Michelle

Not personal to Alice or her s-i-l, but I'm just a little bit wary of 'I'm looking for advice for someone else' requests. They always come from a place of great care but to the greatest extent practicable recovery and goals should be led by the person who has had the stroke. We need to be cautious of giving people living with stroke well meaning, unsolicited advice or seeking to 'fix' another person. I respect that Alice's relative may not be in a position to drive her own recovery or advocate for herself.

Of course it will be important to talk to a neurologist to establish the cause of the pain as the treatment will differ depending on the cause.

I have chronic central post stroke pain. It is debilitating and until I got treatment I couldn't sleep or function.

To my knowledge the most common medication is Lyrica, which slows down impulses in the brain. Even more severe post stroke pain is treated with opioids (morphine). No medication is going to remove all post stroke pain but it can take the most debilitating edge off and help with sleep.

I found seeing a pain clinic helpful in understanding that I couldn't control the pain but I could control my responses. Most hospital pain clinics have waiting lists years long, but there's private clinics.

Stress and cognitive fatigue both make my pain significantly worse, so managing these is important for me. Relaxation, meditation and yoga can be helpful. I saw an excellent pain psychologist for a while who taught me how to relax through my pain and the meditation in a yoga sessions helped me hone this skill.

For some temperature changes can be a pain trigger. For some it is hot days. For others it is cold days. Aircon and central heating are helpful to these people. When it's seasonally appropriate, I find an electric blanket very helpful in relaxing through pain.

Not uncommonly people who have central post stroke pain may also have tactile defensiveness and/or proprioception issues. I have both and both impact on my pain.

For tactile defensiveness wear the most comfortable clothing possible and ditch the jewellery and the bra. If pain impacting sleep is an issue experiment with different types of sleepwear. Some people with sensory issues find bamboo sleepwear comfortable.

For proprioception, I have no internal knowledge of where my affected side is in space. Bedding adds to the confusion. It really amps up my pain when I'm trying to get to sleep. I sleep on my unaffected side. As my pain is worst through my affected arm, I sleep with my affected hand between my cheek and the pillow. That way the unaffected side of my face gives my brain information about where my affected hand is and I can calm my way through the pain.

If the pain is caused by spasticity, Botox helps.

Potentially not entirely appropriate for this forum, but orgasm is hands down best thing I've found for pain relief. If all else fails, I find two or three glasses of wine takes the worst edge off my pain and helps me fall asleep. I recommend a dry white!

Matt Picone

I was put on melatonin for a while in the days after my stroke, it was to help regulate my sleep rather than for any pain relief (I was in the “it’s funny now” situation of my stroke bringing about the end of a 12 day migraine) but had a mind that raced like watching a kaleidoscope while riding a rollercoaster whenever I tried to close my eyes.

Hope she finds an answer.

Narelle Huett

See the Neurologist and find what they recommend.

I haven't had a stroke but I have had acupuncture for pain management and it has gone. Not sure if she is allowed though - consult medical advice

Lolita Small

My partner had a stroke 2 years ago & describes the same issue, we have tried a few different medications but most drugs make him extremely tired so then he ends up sleeping all day…frustrating! Im interested if any suggestions come up 👍

Linda Steuer

I have tried heaps for all my pain and finally got referred to Metro Pain and they have suggested a Continuous Subcutaneous Ketamine Infusion. If it works it could solve the pain for up to 9 months. With doing research it is a bit scary as has so many nasty side effects but apparently dripping in slowly over 7 days it is not as bad.

Graeme Marshall

Yep I go to a neurologist who injects steroids into the back of my neck, it does help

Tara Webb

We had a satin pillow case made for my mum. Good quality thick satin, not the cheap scratchy ready made satin pillow cases. Using this helps her a lot with face pain at night.