My Eye Journey - Part one
If you’ve seen some of my Instagram stories you’ll would know that I’ve been trying different treatments for my dry eyes. I thought I’d write a blog post to fill you in on my journey and give you an insight into my current eye regime.
One of the ‘hallmark’ symptoms of Sjogrens syndrome is dry eyes. ‘There are two main causes: decreased secretion of tears by the lacrimal (tear-producing) glands and loss of tears due to excess evaporation. Both can lead to ocular surface discomfort, often described as feelings of dryness, burning, a sandy/gritty sensation, or itchiness. Visual fatigue, sensitivity to light, and blurred vision are also characteristic of dry eye’. https://www.sjogrens.org/home/about-sjogrens/symptoms/dry-eyes
From my early teenage years I started to experience dry eyes and I was quickly referred by my primary Sjogrens specialist to a Opthamologist. They advised to put in various different types of lubricants (eye drops) throughout the day. I also had punctual plugs put in when I was about 16 to reduce evaporation (these have fallen out over the years but I have had them replaced). Over the years I had various flares which resulted in me ending up in at the eye hospital on various occasions, being put in dark rooms, prescribed short term steroid eye drops and at its worst , developing cornea ulcers.
My eyes can go from 100 to 0 in a matter of minutes - I find it hard to explain to people as one minute I can see totally fine then the next it can be sooo blurry- I put an eye drop in and they can be okay for for a few minutes and then straight back to being blurry. It can be exhausting, it gives me headaches and I find it really effects my mood as not only I can’t see properly at lot of the time its also really painful.
However, nothing could have prepared me for what was to come over the past months. My eyes had been pretty bad leading up to coming home from London to renew my Visa but I hadn’t had too much time to think about it I was just trying to solider on as I was so busy and trying to tie up loose ends before coming home for a month. As soon as I got on the plane my eyes deteriorated - the air con completely dried them out and no amount of eye drops were making them better or providing any relief. I was straight off the plane and into the eye hospital as was worried about developing a ulcer. I was given antibiotic drops and told to come back in a week. A week later with no real improvement I was put on steroids to help settle them down. This helped slightly and after a few weeks my vision was slowly returning. I had been back to my specialist a few times who really didn’t provide many more suggestions other than ‘to up my eye drops’ and ‘she didn’t have a magical pill’. A few weeks later my eyes started to deteriorate again - super dry, very sensitive to light, seriously blurred vision and all the eye drops in the world weren’t helping. It was relentless, I was taking pain killers every 4 hours, couldn’t drive at night and barely could drive during the day. I couldn’t look people in the eyes when talking because looking up involved looking into too much light and couldn’t leave the house without a cap and sunglasses (even if it was raining). Most days I would end up crying to myself as I struggling to see how it would get better.
After some serious research, finding a new Opthamologist - who is AMAZING!! Yes he still tells me the main thing to do is put in ALL the drops but he’s also trying some new things. He believes I need to just throw everything at it. Which is exactly what I’ve been doing and will continue to do. I’ve also been trying some new holistic approaches (below is my current eye regime). I feel like I’ve finally turned a corner and my eyes are in a better position. My goal is to keep the inflammation in my eyes under control and continue my eye regime so they never get to this state again. Unfortunately, there isn’t a magic pill (yet) to cure it but my goal is to keep my inflammation in my body down, try and keep my eyes under control with my eye regime and hoping they don’t end up in that state for as long as they were.
My approach to my eyes is a combination of traditional medicine and natural approach.
Current eye regime:
Eye drops: I use a variety of eye drops throughout the day (including eye drops made from my blood) and at night that range in thickness (aka vary in how they effect my vision) - at its worst I put in them in every 10 minutes or so, when my eyes are on their A game - its about once hourly.
Hot compressions: I sit with a hot eye wheat pack on my eyes for 5-10 mins ( I usually meditate during this time) then apply pressure around the around the top and bottom edges of my eyes to get my oil glands moving before washing them thoroughly with sterilised eye cleaner.
Intense Pulsed Light Therapy (IPL): I’ve had two of a three round treatment and it has a cumulative effect so I’m not expected to notice a difference until after the end of my third treatment. ’the treatment has been shown to help relieve dry eye symptoms, particularly when associated with congestion of eyelid glands (Meibomian gland dysfunction)’ https://www.eyeinstitute.co.nz/About-eyes/A-to-Z-of-eyes/Treatments/Dry-eye-treatment
Long coarse antibiotic / anti inflammatories: I’ve taken a coarse which is a slow release over 3 months which is supposed to help with my eye health and assist in reducing the inflammation in my eyes. Its too soon to say if this has had any impact yet.
Sunglasses: Even if it isn’t sunny you’re find me wearing sunglasses - this is to help protect my eyes from sunlight (they are super sensitive), wind and dust.
Moisture chamber glasses: These are normal glasses with added silicon that wraps around your eyes. This helps to retain tear moisture so that your eyes remain more lubricated, and also protecting them from environmental irritants like wind, dust, air-con and heaters.
Punctal Occlusion: A surgical procedure where they temporarily or permanently close off the tear drainage channels, to retain as much of my own natural tears. I’ve previously had only had this done temporarily with punctual plugs but I’m in the process of having them lasered closed permanently.
Acupuncture: I’ve had 6 sessions so far and I think its really helping. My acupuncturist does a serious massage around my sinus and then puts needles in my face and various other points around my body. I also have been taking Chinese herbs given to me and I am have noticed a positive improvement.
Omega’s: Taking fish oils daily