Patient Stories
Participants from a proof-of-concept study in the UK with a variety of neurologically related conditions verbally reported their own experiences with Alevia.
Based on their experiences, Alevia was shown to reduce chronic pain associated with a wide range of conditions and substantially improve an individual’s quality of life (QoL), with a low risk of adverse events.
Chronic lower back pain was reduced using Axon, leading to improved mobility and activity.
Although back pain is very common, it is not always possible to identify the cause of back pain. It can last a long time or keep coming back. Chronic back pain is a major healthcare issue, and the economic impact can be substantial often running to billions when the direct (treatment, healthcare visits) and indirect (absenteeism, poor productivity) costs are taken into account (British Pain Society).
Fisher was a former sportsman who developed chronic lower back pain from various injuries. At 58 years of age, he still loved sport, but any activity would result in increased pain, fatigue and stress. When attempting sports, he would “get angry with myself” and shout.
“The pain is now mild all of the time and very manageable … I’m now not expecting to feel pain anymore … I’m not waking up with back pain, or pain in my hip or sciatica anymore … I don’t feel overwhelmed by the negative emotions anymore … So, I’ve been able to play cricket again and tried bowling and it was great and that was something I haven’t done for years … The [neurofeedback] training has really helped with my concentration.”
Post-operative chronic neuropathic pain was reduced, leading to increased mobility and improved mood.
Chronic neuropathic pain after surgery is a significant clinical problem (Borsook et al 2013). People with this pain condition may experience shooting, burning pain, numbness or pins and needles, or hypersensitivity to pain. The pain may be constant or may occur intermittently. Unlike most other types of pain, neuropathic pain does not usually get better with common painkillers, such as paracetamol and ibuprofen. Other medicines commonly used include anti-depressants and anti-convulsant.
Two patients with chronic neuropathic pain following back operations successfully used the Axon intervention to reduce pain and increasing mobility.
“Because my pain has decreased, it’s made me feel like I can do more. I feel more in control again … I feel stronger and more confident … Before I did the training I couldn’t get on a bike. I just didn’t want to be in any more pain. But now I can again.”
For Marie (aged 43), a lack of mobility following two spinal fusion operations led to chronic pain in her knees and low mood.
“[The pain] is much less noticeable, less in the foreground, more in the background, less conscious – like it’s muffled … I’m blown away by how much less pain I’m in these days. I feel a lot more agile; I didn’t ever imagine I would get back on a horse again … Feeling more happy, relaxed, more chilled out.”
Psoriatic arthritis sufferers experienced reduced pain and improved QoL for up to 6 months, as well as a pronounced reduction in swelling.
Psoriatic arthritis has no known cure and can lead to severe swelling and pain in hands and fingers (known as ‘sausage fingers’), making even simple tasks difficult and leading to a dramatically reduced QoL. It typically causes affected joints to become swollen, stiff and painful. But early treatment can minimise permanent joint damage.
Another symptom associated with progressive inflammatory conditions is a dysfunctional sense of smell (Yalcinkaya 2019).
Axon was used to treat Doris and William, both suffering with psoriatic arthritis. The swelling on 68-year-old Doris’ fingers was so severe that “you couldn’t see the individual knuckles”.
For William, 60, the pain was just getting “worse and worse” despite various medications. This pain led to erratic sleep, anxiety and “terrible” quality of life.
Doris: “I’m having the best sleep I ever remember having in my entire life … I’ve gone from 5 hours sleep maximum a night (waking several times each night) to 7-8 hours regularly … The swelling is going down so there is loose skin. There wasn’t any loose skin, it was just really tight across on both hands … All of the things that I used to be able to do before the psoriatic arthritis took hold, I can do again. It doesn’t hurt when I write anymore. And I can cook things … I’m really happy with my life at the moment.”
William: “One of the first things I noticed was that I could put my socks on in the morning without any pain … My joints don’t ache anymore and I can walk up and down stairs without pain … I regained my sense of smell after 15 years. At first it was a bit frightening. I can smell the chips in the fish and chip shop … Mr Grumpy has left the building and Mr Happy is now a resident.”
Reduced pain and ongoing relief for symptoms of fibromyalgia.
Fibromyalgia is a long-term condition that causes widespread pain, fatigue, muscle stiffness and issues with concentration / memory (‘fibro-fog’). Treatment eases the symptoms and improves quality of life, but there is currently no cure. As fibromyalgia has numerous symptoms, no single pharmaceutical treatment will work for all of them. Therefore, patients usually receive numerous medications.
Derrell, 53, had been suffering from fibromyalgia for 15 years. As well as chronic pain, she experienced difficulty with many daily activities that most people take for granted.
“I now have no chronic pain. It has gone and I can lift my arms … I can wash my hair in the shower with my hands up. I can even put on mascara now … That was the first time I realised; I didn’t have to look at my notepad. I had total recall.”
Relieved symptoms of FMS despite flare-up due to COVID-19
The disruptions and stressors associated with Covid-19 have disproportionately impacted sufferers of chronic pain, especially with regard pain management (Fallon 2020). For example, stress may trigger or aggravate symptoms of FMS. In addition, the Covid virus itself can exacerbate any symptoms, especially chronic pain. The continuing impact of the pandemic has highlighted the importance of non-pharmacological interventions that could be used independently at home to manage pain.
Although Jack was only 29 years old, his chronic pain due to FMS worsened considerably after contracting Covid-19. Jack hardly ever left his home due to pain and other symptoms, such as dizziness and nausea due to a condition called central vertigo. He stated that “my whole life before [using Axon training] was just uncertainty”.
“I’m not waking up in pain and I’m sleeping better … “[About the vertigo] I don’t feel so sick and dizzy anymore and I can do loads more now … I wish I had been able to do this a lot earlier in my life … It has made me feel good, like I’ve got more of a purpose and hope to recover as well.”
Reduced pain and improved QoL in Ehlers-Danlos syndrome.
Ehlers-Danlos syndrome is a group of rare inherited conditions that affect connective tissue providing internal support in the body for organs and joints. This tissue becomes weaker in people with EDS leading to chronic pain and complications (such as unstable joints that dislocate easily or problems with internal organs). There is no specific treatment for EDS, except symptom management. Apart from long-term pain, EDS is often associated with sleep disruption, mood disorders, migraines and reduced functionality (Hakim et al 2017), leading to a reduced QoL.
Sophie, 57, felt resigned to living with chronic pain from EDS, anxiety and poor sleep for the rest of her life until she tried Axon. In particular, Sophie enjoyed the relaxing effect of the Axon games.
“I have no more neck pain, absolutely … I suddenly thought: ‘wow, I haven’t had a migraine for ages’ … I haven’t had sleep this good for years and years and I’m starting to dream, which I wasn’t doing before … I have got my energy levels back which has really helped. I feel so grateful and lucky to be alive now.”
All pain associated with degenerative myelopathy was lessened.
Myelopathy is the medical term for spinal cord compression in the neck (cervical) or chest (thoracic) regions of the spine. Symptoms usually develop slowly over time and include neck and shoulder pain, headaches, lack of coordination and balance. This condition usually affects people who are over 50, as ageing causes wear and tear to the muscles and bones. Apart from painkillers, physiotherapy is usually recommended, and surgery is only considered in cases with spinal cord issues. Even then surgery will not cure the condition.
Grace was only 38 when she was diagnosed with degenerative myelopathy. Despite undergoing surgery, she has permanent damage to her spinal cord, reducing her mobility and increasing her chronic pain, which felt like a “big cloud of all-encompassing pain”.
“The pain cloud turned into a pain dot … I feel like it has literally changed my life … I feel much more resilient. I’m just really grateful for the opportunity to have been able to take part. I’ve loved it … Neurofeedback made me feel more in control of my life.”
In other’s words
