These were created to share with a wider stroke support team. these were additional notes to those created previously. created 6/11/24.


- 95% of survivors with cpsp in recent research have hemi-body impact. For the most part, this is on the survivors impacted side.
- it is very poorly diagnosed. Every review paper produced seems to have widely differing figures on the % of people impacted. Ranges appear showing 3% of survivors up to 35%. Really no one has a firm handle on it.

- onset is immediate or taking as much as 10 years plus to appear. Some will progress to severe or excruciating/destructive pain levels.

- A differentiator to other nerve pain is 70% find cold as the primary trigger. Survivors should therefore try to avoid cold surfaces/weather etc. leggings and gloves, even indoors may be useful. It is a difficult balancing act as hypersensitive skin may not like being covered.
Hydrotherapy works well but maybe necessary to use beach shoes or similar to get in if the floor is cold. Cold could easily be temperature differential rather than outright "cold". A hand outside of a duvet can trigger the sensation.

- Hospital treatments include TMS (Liverpool only, non invasive) DBS (Pilot in Oxford but paused currently for device modification). One cpsp survivor considering cingulotomy.


- The sensory system is impacted to a significant degree. In addition to the generation of pain, at times sufferers can encounter system overload where the sensory feedback is so overwhelming that loud sounds, cold, light can make it difficult to function.

- Unlike contact injuries, once the body alarm has been triggered, the adverse body reaction can last for hours even though the stimuli has been removed.

- Pain and pain type sensations, burning and prickling is very common. Feeling limbs are twisting, being pulled or limbs are exceptionally heavy are also common. What isn't specified so often is the impact of numbness or partial numbness in a limb. When this arises in the foot, it can feel like the survivor is stood on tiptoes if the only sensation is in toes. A strong feeling of falling backwards if only sensation is the back of the heel.
Balance can be a real issue as a result. Suggestion would be to concentrate on feedback from good foot.

- It is very difficult for the survivor to know if they have a genuine muscle/tendon/ligament injury or if it is a sensation. Note that the pain may appear to move intra day and across days. This aspect may need physio assistance.

- For some survivors, sensation issues may extend to the unaffected side.

- Life expectancy is not detailed but due to pain severity, known that self harm and suicide is a higher  risk.

- Medication may be only effective for 20% of people. Two medications rarely mentioned by the wider NHS but much more so in the US are lamotrigine and duloxetine. It would appear the best relief is always from a combination of anti epileptic and anti depressant.

- Some individuals have pain levels which while unpleasant, are tolerable. There are no known details to explain why it stabilises or progresses.