On twitter this month I have been following the hashtag #NERVEmber raising awareness for all sorts of nerve pain. It has been absolutely fascinating and surprising to read about all the different variants, causes and the impact on its suffers. So felt I shouldn’t let the month end without sharing my experience of nerve pain.
As a result of my strokes I have Central Stroke Pain all down the left side of my body. It came on a long time after my strokes, when the complete numbness of my left side started to change and I started to experience some returning sensation. At the time I had assumed this was part of the process of regaining the feeling in my left side. Sadly this didn’t turn out to be the case. Normal feeling didn’t and hasn’t returned to my left side and instead it is replaced with a mixture of numbness, confused sensation and pain that presents itself in many different forms.
I wanted to share the link to The Stroke Association Leaflet that I found so useful when I was diagnosed with this. But am astounded to find it is no longer listed. After a lot of searching I only on their site I only managed to find a paragraph on a general pain publication on their site. In fact to my surprise I found it really difficult to find much UK based information from NHS or Stroke charities I am assuming this is because only about a small percentage of stroke survivors suffer with this post stroke
What is Central Post Stroke Pain
“Is also known as thalamic syndrome or thalamic pain syndrome, is a neurological disorder. The thalamus or parietal lobe processes sensory stimuli like heat, cold and touch and as a result of damage the brain registers all stimuli as pain” http://www.paincommunitycentre.org/content/central-post-stroke-pain?
What stroke pain is for me:
Pins and needles sensations
Various strange and uncomfortable sensations responding to even gentle touch or change in temperature.
These symptoms effect my entire left side. However, my hand is the far worse area. I assume this is because by necessity it and the finger tips are most sensitive to touch. In my hand it tends to be sensations of intense burning, that confused feeling you get from being extremely cold then go into a very warm place.
My face come in second place as worse effected, for some strange reason my eye socket is an area by my eye can be really uncomfortable. Here its much more itchy feelings that you can not soothe or reach when you try and scratch it. It feels like its under the skin instead of on top.
It bloody vile, distracting and without treatment quite debilitating. All this said I also have always counted my blessing that I am gifted with the return of movement in my left side. As initially this was not the case. Over time with lots of practise I have learned to do things regardless of my sensory impairment and regardless of this pain condition. There is always a silver lining to be grateful for.
When this pain started it was relentless and nothing I tried would soothe it. None of you normal go tos for pain. I literally tried everything, painkillers gels heat, cold even tried a tens machine which was a crazy idea as this just made the pain more intense. As I had always been under cardiology I didn’t actually have a stoke doctor to consult. And at no point did my GP diagnosis and treat this onset of bloody awful pain.
When it became clear it wasn’t going away I was referred to the Pain Clinic and it was there that I got a diagnosis of what they called Central Stroke pain. This was my turning point, thankfully as I was quite desperate by this point, as this
I am not offering unqualified medical advise here, I am merely sharing what has worked for me. I didn’t take the decision lightly to take medication but I also knew I had to try everything available to me at the time as the alternative. Living with the pain was not a viable option as this pain was effecting my ability to function.
I was prescribed Gabapentin. Over a long period of attending the pain clinic and with the supervision of the consultants, we increased the dose until finally we reached a dose that gave me some heavenly relief. Over a decade later I continue to be take daily Gabapentine and it continues to keep my pain at bay. My medication is not a cure for this pain. There is always background sensations that I would prefer to be gone and there are also times when the medication does not work. There are things that trigger increased pain regardless of my medication, such as rapid or extreme change in temperature, being unwell, fatigue, at touch or sensation of certain material. My hand continues to be the culprit that gives me the most jip.
I also take Nortriptyline at night to manage post stroke headaches but would assume this compliments Gabapentine in tackling central stroke pain. I also have to take a variety or other pain medication as an when pain arises such as for spasticity and muscle pain etc. So my daily medications are not a one type fits all pain that can arise from having had a stroke.
I think there is always a price to pay when taking medication in terms of suffering side effects. This is very individual, for me some side effects are worth enduring for the positive outcomes that the medication bring, some are not. This is again something you need to work closely with your doctors to manage and should never stop any medications suddenly without seeking advise.
For me the side effects I live with include having a very dry mouth most of the time regardless of what I drink. Plus I am although unsure of what role my medication plays in adding to my fatigue, I am sure it doesn’t help. But these are sacrifices I have to make to be able to live with this condition.
Also I have chosen ignorance when thinking about the long term effects, if any on my body of taking these daily medications. Mainly because there has been no alternative available to try and I there is no cure, so I haven’t seen the point looking into what could happen some day in the distant future.
However, the long term is something I have starting to consider more and more as I get older and as a result of pursuing a holistic healthier lifestyle. Medical and health research and information is always changing and developing. Meaning in my lifetime I may find a different solution for managing my stroke pain sometime in the future. Especially now that people can research and share information so easily via the internet. Awareness months like #NERVEmber on twitter are a great and have opened my eyes to how varied the cause of nerve pain are and how many people are living with it every day.
Have you found different solution to medication to managing stroke or nerve pain? if yes would love to hear what is working for you.