Axon Therapeutic Eyewear for Migraine and Blepharospam: Celeste’s Chronic Illness Blogger Review

"I have been given this product as part of a product review through the  Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "

According to the International Headache Society on beta 3 of the International Classification of Headache Disorders, migraine disease has many sub-types. But regardless of the type, many of us experience photophobia. A study published in the peer review journal, Cephalalgia, says approximately 80% of migraineurs experience light sensitivity during an attack. It is also estimated that up to 80% of people with blepharospasm, a facial movement disorder defined by eyelid twitching, experience the phenomenon due to bright light exposure. I happen to be in both groups. That’s why I was so excited to review “Axonoptics Therapeutic Eyewear”.

Studies show filtering out particular light rays contributing to photosensitivity reduces the number of migraines we experience. This is particularly important because these glasses are not the same as sunglasses, which I have used to help my photophobia. Axon glasses are different; they are therapeutic. 

When I first started wearing them, my usual squinting (even with sunglasses) stopped. During a migraine, the glasses really help too. Minimizing photophobia for me also means minimizing nausea and vomiting. I no longer worry about attending a conference or advocacy meeting in fear of the overhead lights triggering a migraine.

The glasses arrived in a handsome box, and a well-designed durable case.  

You can get other frames, send in your own, and get the lenses in your prescription. The frames I got are the Axon Optics JURA - Migraine Glasses for Migraine Relief and Light Sensitivity Relief. They are a stylish, classic, lightweight, unisex style spring frame, meaning they will hug your face without causing undue pressure. I must admit, the universal size scared me a bit at first, but the glasses fit my face with comfort. I hardly know there.

According to Axontherapeutics there are certain things to be considered, which I read before doing this review.

• They can be used every day.
• While the rose tint is not dark, which I love, they are not endorsed for night driving as a safety concern, and no research has been done to know if it would help.
• These lenses are indicated for migraine, light sensitivity, photophobia, blepharospasm, glare, eyestrain or irritation, headaches and traumatic brain injury.
• There are no limitations on how often they are worn.
• The FL-41 lenses have a premium coating that is anti-smudge, anti-moisture, and anti-scratch and block 100% UVA and UVB rays.
• The lenses I got are ideal for when using electronics, such as a computer or television, and protect against flickering or irritating light patterns. They are not indicated for outside because they aren’t dark (they do filter UV rays), but I find dark lenses give me eye strain and intensify my dry eye, so for me they are good for both inside and out, but if you need a dark lens, they also have outdoor lens for use as sunglasses.  

For me, it doesn’t matter if the sun is shining brightly or the sky is thick with clouds, I am sensitive, so even though I got the indoor tint, I also wear them when driving and enjoy knowing my eyes are protected from UV light rays, which can damage anyone's eyes. You might prefer a darker tint for sunglasses, but regardless of your preference, it is reassuring to know that photosensitivity  can now be minimized.

As migraineurs, we seek whatever means available to prevent and treat this horrific disease. And, I am happy to report these glasses are reducing blepharospasm, bringing relief from the incessant distraction of twitching eyelids. 

In healing,,Celeste

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"Adversity is only an obstacle if we fail to see opportunity."  

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Celeste Cooper, RN

Author—Patient—Freelance Writer at Health Central & ProHealth —Advocate

Accepting Your Limitations, Exploring Your Talents by Celeste Cooper

Those of us who live with chronic pain and illness understand that we should respect our limitations. But, it is equally important to stay energetic. There are many ways to be energetic, full of life in thinking, present in our compassion for others, active in mindfulness, and more. Looking at things from this perspective helps us broaden the boundaries of not too much, yet enough. It allows us, gives us, permission to explore our hidden talents.

We discuss all these things and more in Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, Fall Devotions.

Follow Your Passion

It is easy to become passionate about people we admire or things we love.

Fall Devotions, Day Forty-eight

I love:

Having a positive role model.

Nature.

The grandeur of a mountain.

A good cup of herbal tea.

A stream that speaks.

Birds that sing.

Sharing information with people.

Having a network.

A path less traveled.

...

Start an "I love" list on one of the empty spots in this book, see where it takes you, you will be pleased. (See "Day Seventy-five,” and find more exercises throughout the Broken Body, Wounded Spirit… series.)

I love…

The   2014 Revised Fall Devotions is now available, here  and for Kindle, here.

Barnes and Nobel, here.

United Kingdom, here. 

Canada, here.

A promotional download for the Kindle version will be coming soon. 

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"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

NEW Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. 

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Is the prevalence of joint hypermobility purely a coincidence in CFS and FM? by Celeste Cooper

Shared by ProHealth is Dr. Peter Lowe’s assessment of joint hypermobility in chronic fatigue syndrome.

Is The Physical Examination Normal in CFS? Part 2: Joint Hypermobility, here.

As you will see, I too made this connection in our book “Integrative Therapies for Fibromyalgia, ChronicFatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (rated in the top 100 books on Diseases & Physical Ailments on Amazon in 2013) if you read more about joint hypermobility and Ehler’s Danlos Syndrome on my website here. 

How coincidental could this be?

Another study suggests this phenomenon goes undiagnosed in irritable bowel syndrome, a common comorbid disorder to fibromyalgia, which often overlaps with CFS.

Fikree A, Grahame R, Aktar R, Farmer AD, Hakim AJ, Morris JK, Knowles CH, Aziz Q.. A Prospective Evaluation of Undiagnosed Joint Hypermobility Syndrome in Patients with Gastrointestinal Symptoms. Clin Gastroenterol Hepatol. [Jan 15 Epub ahead of print.]

“Many upper and lower GI symptoms increased with increasing severity of JHS phenotype. Upper GI symptoms were dependent on autonomic and chronic pain factors. JHS is common in GI clinics, with increased burden of upper GI and extraintestinal symptoms and poorer quality of life. Recognition of JHS will facilitate multidisciplinary management of GI and extra-GI manifestations.”

French investigators noted some stark realities in fibromyalgia patients.

“Some patients suffering from fibromyalgia present with clinical signs and alterations in the histopathology, immunohistochemistry and ultrastructure of the dermis similar to the Ehlers-Danlos syndrome, hypermobile type (EDSH). Some types of fibromyalgia possibly represent an undiagnosed EDSH.”

Hermanns-Lê T, Piérard GE, Angenot P. [Fibromyalgia: an unrecognized Ehlers-Danlos syndrome hypermobile type?] Rev Med Liege. 2013 Jan;68(1):22-4.

I can only speak from what I found in my literature review for the 434 page book and my own personal experiences. A stark reality for me is that my own skin is that of someone on long term steroid therapy, but I don’t even tolerate steroids. My wounds heal so slowly that one of my doctors said I should always have a wound care specialist. My skin connective tissue tears like paper and bruises from a feather touch. I have had four shoulder surgeries, one complete reconstruction because it would not stay put, and the other three because of tendon and cuff tears. My hips still pop in and out at will, only contributing to fall risk and aggravation and development of more trigger points, piriformis and sacroiliac pain, and hip bursitis. I have suffered many severe joint sprains throughout my life. I can still put my hands flat on the floor and my therapists are amazed at my flexibility in light of my age and the severe myofascial pain syndrome. And yes, before arthritis, I was what many referred to as double-jointed.

Are our doctors giving this connection serious consideration? 

Could this explain why so many FM and CFS patients 

are susceptible to myofascial pain syndrome?

Keep up the good work Dr. Rowe and fellow astute investigators. A physician should never underestimate the value of a skilled physical exam. We salute you.

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."

Celeste Cooper, RN

Author, patient/ advocate, fibromyalgia health expert

Books:

Read about Celeste and access to her books at Author Central here

Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain [Four book series]

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain 

Advocacy: 

Fibromyalgia expert on Sharecare, here. 

Participant in the Pain Acition Alliance to Implement a National Strategy, here.

Website: http://www.TheseThree.com

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Is sleep keeping you awake at night? Poor sleep in people with fibromyalgia and chronic fatigue syndrome by Celeste Cooper

Dysfunctional sleep—something those of us with FM and CFS know only too well—no surprise—can cause agitation, phobia, sleep deprivation psychosis, headaches, cognitive deficit, problems with gait, weight problems, and it can affect our mental, physical, emotional, and spiritual health and weaken our body’s immune response. Though sleep dysfunction can be part of any chronic pain condition, its effects are prevalent in fibromyalgia (FM), and chronic fatigue syndrome (CFS). Both disorders affect multiple body systems and have particular overlapping conditions of bruxism, severe headaches, and periodic limb movement, which are present or affected by sleep. Whether it is from sleep apnea, narcolepsy, insomnia, or disordered patterns, sleep disorders have a profound effect on our symptoms and  affect our daytime quality of life.

Researchers have been looking at sleep function in FM and ME/CFS disorders for decades. A subgroup of fibromyalgia patients also have restless leg syndrome (RLS). When RLS occurs during sleep, it is called periodic limb movement (PLM). Those of us who experience this phenomenon, PLM, are unaware until we are told by our bed partner or the disarray of our bed linens. It’s no wonder we don’t feel rested when we have been running a marathon all night. In these cases, and in the case of suspected sleep apnea or other issues mentioned previously, a sleep study is order to determine if there is something interfering with sleep that can be treated.

Poor sleep not only affects our mood, it also affects our body. When we don’t feel rested, we are less likely to move very far away from our recliner. But, not only do we need to move to help fibromyalgia muscle symptoms, we also need to move to improve the circulation of lymph. The lymph system, unlike blood vessels, relies solely on physical movement to catch cellular debris, waste and toxins in the filters, called nodes, and move it out of the body via the lymph system. If it is not functioning reliably, peripheral swelling occurs and our general health is affected.

Because both FM and CFS are thought to affect the nervous and immune systems and/or vice versa, it is important to address sleep issues so we can minimize other symptoms.. (See my last blog, Exercise and Fibro.)

Helpful strategies and aggravating comorbid or co-existing conditions are covered in IntegrativeTherapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: TheMind-Body Connection.

Celeste’s other blogs related to sleep:

•  Don't Snooze? YouLose - Sleep Deprivation in Pain Disorders
• The Mystery of Sleep in Fibromyalgia and Chronic FatigueSyndrome
• Sleepoh sleep, where art thou? Could your fibromyalgia medications be causinginsomnia?
• SnoozeNews - The conundrum of sleep deprivation
• WakeUp Sleepy Head - Non-Restorative Sleep in FM and CFS

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Update as of April 2015

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

New Website

Celeste’s Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Resources:

Civelek GM, Ciftkaya PO, Karatas M. Evaluation of restless legs syndrome in fibromyalgia syndrome: An analysis of quality of sleep and life. J Back Musculoskelet Rehabil. 2014 May 27. [Epub ahead of print]

Drake CL1, Vargas I, Roth T, Friedman NP.Quantitative Measures of Nocturnal Insomnia Symptoms Predict Greater Deficits Across Multiple Daytime Impairment Domains. Behav Sleep Med. 2014 Mar 11. [Epub ahead of print]

Ablin JN, Clauw DJ, Lyden AK, Ambrose K, Williams DA, Gracely RH, Glass JM. Effects of sleep restriction and exercise deprivation on somatic symptoms and mood in healthy adults. Clin Exp Rheumatol. 2013 Nov-Dec;31(6 Suppl 79):S53-9. Epub 2013 Nov 15.

Kishi A, Togo F, Cook DB, Klapholz M, Yamamoto Y, Rapoport DM, Natelson BH.The effects of exercise on dynamic sleep morphology in healthy controls and patients with chronic fatigue syndrome. Physiol Rep. 2013 Nov;1(6):e00152. doi: 10.1002/phy2.152. Epub 2013 Nov 13.

Light KC, White AT, Tadler S, Iacob E, Light AR. Genetics and Gene Expression Involving Stress and Distress Pathways in Fibromyalgia with and without Comorbid Chronic Fatigue Syndrome.  Pain Res Treat. 2012;2012:427869. Epub 2011 Sep 29.

Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC. Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. J Intern Med. 2011 May 26. doi: 10.1111/j.1365-2796.2011.02405.x. [Epub ahead of print]

McBeth J, Lacey RJ, Wilkie R. Predictors of new-onset widespread pain in older adults: Results from a population-based prospective cohort study in the UK. Arthritis Rheumatol. 2014.  66(3):757-767.

Prados G, Miró E, Martínez MP, Sánchez AI, López S, Sáez G. Fibromyalgia: gender differences and sleep-disordered breathing. Clin Exp Rheumatol. 2013 Nov-Dec;31(6 Suppl 79):S102-10. Epub 2013 Dec 2.

Sivertsen B, Lallukka T, Salo P et al.  Insomnia as a risk factor for ill health: results from the large population-based prospective HUNT Study in Norway. J Sleep Res. 2013. [Oct 30 Epub ahead of print.]

Exercise and Fibro by Celeste Cooper

Because we are all unique individuals with varying comorbid or co-existing conditions, you will want to experiment with different types of what I like to call “movement therapies.” For instance, a person with lung disease will not have the same abilities as someone who is able to swim and jog without an increase in their

symptoms. A fibromyalgia patient who also has myofascial pain syndrome will want to make sure their myofascial trigger points are being successfully treated before exercising a shortened and weakened muscle. 

Exercise that keeps your muscles from wasting and keeps them from becoming stiff is the one that will help you most. Try not to become so afraid of pain that you stop moving all together, because research tells us a static or sedentary lifestyle is not good for the FM patient, and non movement can contribute to pain not to mention add other health complications.  If you have other physical limitations, try rocking in a rocking chair. If you have difficulty with balance or you have severe joint disease, you may want to try Yoga that incorporates the use of bolsters. T’ai Chi is also a good movement therapy because it requires focus and slow movement. If you choose to swim, do so in a warm water pool to avoid putting your muscles under any undue stress. Aerobic exercise is important too unless you fall into a subgroup of fibromyalgia patients that has heart rate and blood pressure drops, in which case the autonomic nervous system isn’t working quite right and aerobic exercise could be harmful. In other words, let your body be your guide.

"Keep a “Movement Report Card”

As with all things fibro, our bodies don’t respond normally, so soreness may not occur until several days later. A mild increase in muscle tenderness will occur in anyone so don’t let this stop you. However, if you find the tenderness is extraordinary, back off, change your movements, or rest for a few days before beginning again. Check your records to see if there is anything in particular you added that might be causing more problems. This might include a new yoga position or an increase in your time walking. Always be respectful of any other conditions you have in addition to fibromyalgia, and unless your doctor tells you otherwise, drink plenty of water.

Hobbies that require physical movement, such as gardening or chasing butterflies around with a camera are good movement therapies too. Use caution, and control movements so you don’t put undue stress on the same muscle groups, your spine, or your joints. Hobbies that require you to move and get outside not only helps physically, it helps us spiritually too. 

“Musical ideas sprang to my mind like a flight of butterflies, 

and all I had to do was to stretch out my hand to catch them.”

~Charles Gounod

Don’t forget to stretch. You don’t have to go overboard, be gentle with yourself. You might try incorporating a stretch while in the shower and then use your towel as an exercise tool while drying off. Put frequently used items at a level where it will provide a mild stretch to reach them. When up an about in the house, try bending over and touching your toes several times a day. Speaking from experience, come back up slowly so you don’t topple over. When you are not in a flare, try parking further away when you are on an outing. Try walking backwards from time to time, supposedly, it burns more calories and exercises the mind. Unrealized exercise works the same as a movement routine.

Always start low and go slow.

Use as much of your battery as possible without completely draining it.  If you expend all your energy in one day, it can set you back several. Whatever you choose, do it wisely and document your symptoms and tolerance. Always start low and go slow. Your best choice is a type of movement that you like to do.

You can read more about many different types of exercise, therapies, and precautions in 

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome,and Myofascial Pain: The Mind-Body Connection.

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All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and author of books related to chronic pain and illness. You can read more about Celeste and her work on her Amazon Author Profile, here , or look to the right of this blog for direct links to her work.