Who
Attendees & Locations
Simon — Edinburgh (facilitator, stroke 5.5 years ago, no CPSP confirmed) [Citation]
Nigel — Bristol (hemorrhagic stroke, right thalamus, 4.5 years ago; CPSP onset 4 months post-stroke) [Citation][Citation]
Helen F (Milton Keynes) — Stroke 4.5 years ago; CPSP onset 5 weeks in [Citation]
Tracy — Carmarthenshire, Wales; stroke 3 Jan 2021 (mid-COVID); CPSP onset within days on stroke ward [Citation][Citation]
Helen (Finland) — Stroke at age 8, now 32 years post-stroke; CPSP onset 8 weeks after [Citation][Citation]
Susan/Brian — St Albans; catastrophic hemorrhagic stroke Aug 2023, thalamus/basal ganglia; 5 months hospitalised [Citation]
Ruth — Sheffield; stroke 10 years ago (April 1st); CPSP onset 2 months in [Citation][Citation]
What
First structured monthly meeting of a CPSP (Central Post-Stroke Pain) survivor-led support group, bringing together 8 participants from across the UK and Finland. Members introduced themselves, shared stroke histories and CPSP onset timelines, and exchanged medication experiences and non-drug pain management strategies. The group agreed to meet monthly on the second Tuesday at 3:00 PM, with the next session scheduled for 10th August.
Medications Reported
Gabapentin / Pregabalin — used by most; evidence suggests 5-in-6 chance pregabalin is ineffective for CPSP; similar profile for gabapentin [Citation]
Amitriptyline / Nortriptyline / Duloxetine — commonly prescribed; discontinuation risk noted (Philip’s experience: 1 month of severe symptoms when tapering off) [Citation]
Baclofen / Tizanidine — used for spasticity; Tracy noted dose increases worsened pain [Citation][Citation]
Medical cannabis (THC/CBD) — Susan prescribed via NHS pain clinic referral, sourced privately through “Pure Relief”; Tracy using CBD/THC gummies with significant shoulder pain relief within days [Citation][Citation][Citation]
Opioids / Lidocaine infusion — Arnas’s research cited as stating opioids are ineffective for CPSP; Helen F’s lidocaine infusion trial produced no benefit [Citation][Citation]
Paracetamol / Codeine — Helen (Finland) reduced to these only after codeine was withdrawn due to addiction risk [Citation]
Non-Drug Pain Management Strategies
Heat & warmth — most effective non-drug strategy cited by Nigel, Ruth, and others; heated gloves, heated gilet, warm hydrotherapy pool [Citation][Citation][Citation]
Hydrotherapy — Nigel: warm pool significantly reduces stiffness and provides 2–3 hours of low pain post-session [Citation][Citation]
DBS (Deep Brain Stimulation) — both Nigel and Helen F have implants; neither reports meaningful sustained benefit; Nigel noted a brief “honeymoon effect” on surgery day [Citation][Citation]
TMS (Transcranial Magnetic Stimulation) — Nigel attempted but location (Liverpool only) was impractical; Simon noted NHS infrastructure could support wider TMS rollout as a policy decision [Citation]
Acupuncture — tried by Helen F and Ruth; no benefit reported [Citation][Citation]
TENS machine — tried by Ruth and Helen (Finland); described as more uncomfortable than helpful [Citation]
Myofascial therapy — Ruth: helped migraines but not CPSP pain; valued for relaxation [Citation]
CBD/THC gummies — Tracy: strong shoulder pain relief; caution on THC for those with balance issues (Susan noted increased wobbliness) [Citation]
Key Shared Experiences
Diagnosis gap — multiple members self-diagnosed CPSP after GPs and consultants were unfamiliar with the condition or with allodynia (noted on Susan’s own medical notes) [Citation][Citation]
Cold sensitivity — cold triggers pain and limb heaviness; warmth consistently provides relief [Citation]
Stress-triggered symptoms — sudden demands (e.g., answering the door) cause stroke-side limb failure; interpreted as neurological overload [Citation][Citation]
Post-exertion fatigue — described as complete energy drain, distinct from ordinary tiredness [Citation]
Isolation — Tracy articulated the group’s shared value: stroke causes loss of identity, relationships, and employment; peer connection is critical [Citation]
Decisions Made
Meeting cadence: Second Tuesday of each month, 3:00 PM UK time; next session 10 August [Citation]
Forum access: Simon to assist members with login; Tracy to send Helen (Finland) the forum link via Messenger [Citation]
Topic deferred: “What we want professionals to know” moved to next month’s agenda [Citation]
Guest speaker: Christine Roth has a colleague offering hypnosis for pain management — to be explored for a future session [Citation]
Action Items
Tracy: Send forum link to Helen (Finland) via Facebook Messenger [Citation]
Simon: Host optional tech/forum help session next Monday at 3:00 PM (same link) [Citation]
Nigel: Message Philip to follow up on absence; drop note re: next meeting [Citation]
All: Contribute to “what professionals should know” discussion on forum ahead of next session [Citation]
Next Meeting
Date: 10 August, 3:00 PM UK time (5:00 PM Finland)