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“I’ve been experiencing light sensitivity and have been getting more headaches. Is this common with Sjögren’s?”

Most people who have Sjögren’s will have dry eyes, also called keratoconjunctivitis sicca. Sensitivity to light (also known as photophobia) is one of the common symptoms experienced by people who have dry eyes, though not everyone with dry eyes experiences light sensitivity. However, dry eyes alone do not commonly cause headaches. The most common cause of light sensitivity and headaches would be migraine headaches. If your headaches are primarily located on one side of the head, then there is a good chance that this problem could be related to migraine rather than to dry eyes. Migraine headaches are also often associated with nausea, sound sensitivity, and typically get worse with physical activity. If these apply to your headaches, then you should ask your doctor if you may have migraine headaches, which require treatment different than that used for Sjögren’s dry eyes. 

If your headaches primarily occur after computer work, then the possibility of “Digital Eye Strain” should be considered. The American Optometric Association (AOA) also calls this “Computer Vision Syndrome.” Having poor ergonomics and posture while performing prolonged computer work can cause strain on the joints and muscles of the head, neck, and shoulders which can, in turn, lead to muscle tension headaches. Dry eyes also typically worsen during computer work. While concentrating on computer work, blinking is reduced by a third or more, resulting in increased evaporation of the moisture covering our eyes. Common symptoms of Computer Vision Syndrome include headaches, blurred vision, dry eyes, eyestrain, and neck and shoulder pain. Both the AOA and the American Academy of Ophthalmology recommend abiding by the 20-20-20 rule: take a 20-second break every 20 minutes during computer work to view something 20 feet away to help minimize this problem. Other things you should do while performing computer work include concentrating on blinking more often, using artificial tears frequently, using an anti-glare computer screen protector, using a desk humidifier, and positioning your computer screen so that the center is 4-5 inches below eye level.

Some patients who have Sjögren’s can have other problems with their eyes that can cause light sensitivity but are much less common than dry eye. Inflammation of the white portion of the eye (the sclera) is called scleritis, and inflammation of the colored portion of the eye (the iris) is called iritis (or anterior uveitis). Both of these cause light sensitivity and usually cause the sclera to become red or pink, causing eye pain rather than a true headache. These two conditions are also treated differently than dry eyes.

The best person to sort out these possibilities is an eye doctor, either an ophthalmologist (a medical doctor, MD; or a doctor of osteopathy, DO) or an optometrist (optometry doctor, OD). If you have been diligent with treating your dry eyes with artificial tears every few hours, using a humidifier, not smoking, staying hydrated, etc. and the light sensitivity and headaches continue, I would recommend that you call and see your eye doctor as soon as possible for appropriate evaluation. The correct treatment depends upon identifying the actual cause of your symptoms.

By Donald Thomas, MD

This information was first printed in the Foundation's patient  newsletter for members. 


Comments

— Apr 20, 2020

i had cataract surgery and have cloudy corneas as a result. My eyes are still swollen after 3 months...the eye doctor keeps blaming Sjogrens...what can i do

I have Sjögren’s and have a problem with the sun , Fluorescent lights and white lights especially those used in hospitals . Tv and driving also cause problems. My night vision is also very difficult, I usually try to get a car in front of me but that only works on motorways. Thank you Joan

— Jan 30, 2022

Hello, I am both confused and frustrated. Currently I am 47 years old. Since my teenage years I have suffered from frequent and often intense headaches/migraines. No tests have given a cause. I started having abnormal urinalysis results (proteins) and blood results (enzymes) about 6-7 years ago, which fell to the back burner once I had a lapse in insurance. I had fibroids suddenly appear on my uterus several years ago, and the side effects led to a hysterectomy. My gynecologist ordered a full abdominal sonogram at this time too, and it was noted on my report that my liver was enlarged. My abdominal pain started probably around the same time, 6-7 years ago. (I have always had digestive issues). After several doctors visits and tests (scopes) I was diagnosed with IBS. I have had random issues with dry eyes and super dry mouth, but never thought twice about it. Doctor gave me prescription eye drops and I use dry mouth wash and chew lots of gum. Last year, I had an abnormal mammogram. Once the biopsy needle hit the “lump”, it completely dissipated. About a year ago the muscle and “bone” pain started. And over the last year has gotten worse and is basically a constant ache that intensified during certain times. Now I have had the same abnormal mammogram result in the same breast, close to the same size, with similar characteristics. Dry mouth has gotten worse, sometimes I feel like my tongue is too big for my mouth, the muscle and bone pain seems pretty constant with flares, my headaches are all the time… I have become so frustrated with the constant headaches and aching pains, that I asked to be tested for autoimmune. First I had a positive result for ANA. Doctor said it wasn’t a significant result, but said I could see a rheumatologist for some more tests. The rheumatologist took my history and sent me for more blood work. The results showed again positive for ANA, and positive for sjogrens anti-ss-a 1:80. A few other random e abnormalities, but these being the most significant. I messaged my rheumatologist immediately, because I am anxious for an answer… and she said all autoimmune diseases are pretty much ruled out and that she could prescribe some eye drops for the dry eyes at my next appointment. This was devastating, and I told her that dry eyes are at the bottom of my lists of discomfort, and I could deal with those without prescription. I asked her if the test results for sjogrens could be the cause of all my issues, and she basically said that is very rare and said we will discuss more in depth at my scheduled follow up. I know Google is not a great idea, but everything I have read doesn’t seem to indicate that it isn’t that uncommon for those diagnosed with SS. First, do these results still leave question to an SS diagnosis? Second, is there a way to confirm if SS could be at the root of my discomfort in other areas in addition to dry mouth and eyes? Am I “dead in the water” in regards to finding the source and connecting my symptoms to SS or something autoimmune? I am starting to feel hopeless that there is any relief out there, and that I will have to live uncomfortably for the rest of my years. Also, I would like to note that everyone is thinking I am being “wimpy” and the complaints I have are just normal aches & pains for a 47 year old woman, so I feel like everyone is tired of hearing it and thinks I am crazy now or that I am over exaggerating. I take ibuprofen and Excedrin interchangeably like candy anymore. :(

Hi, Heather, I’m sorry you’re going through all that. If I were you I would consult another rheumatologist who knows about Sjogren’s

I am 81 and have been diagnosed with Sjogren’s since 2007. Dry eye was very bad.I am
now on Autologos Serum Eye Drops which have been a god send. Now having what
seems to be cluster headaches. Have had four sinus surgeries but none in the past
several years but sinusitis is a problem with Sjogren’s. All attributed to dryness. I
use NAVAGE to keep sinuses clear. Sjogren’s is an annoying and discouraging ailment.
I have been off of Methotrexate since Jan 2022 and doing fine without it.
Had constant UTI’s but none since I stopped Methotrexate. Try to keep you spirits
up.
Maureen

— Mar 7, 2022

I have SLE & Sjogren’s. I recently developed scleritis. It developed suddenly during the night, and I kept waking up thinking I had a corneal abrasion or something. My eye hurt and felt irritated. I kept putting gel drops in my eyes to sooth them. In the morning my sclera in just my right eye was reddened. The Urgent Care doc ruled out corneal abrasion using dye eye drops & slit lamp and ruled out infection (no drainage or swelling). He ordered Naphcon A (anti inflammatory) for my eyes. The condition cleared up in 7 days. Is scleritis a lupus or Sjogren’s flare?

Don’t give up…find another Rheumatologist as suggested. It is important to repeat testing frequently as titres change often. Also see an opthamologust who can do a Schirmers test for dryness. That’s how my sJ was finally caught and led to a proper diagnosis. There is also a lip biopsy which can be done to rule in or out. Listen to your body and know that you know it best. You are not „going crazy“ as many Drs prefer you to believe esp as it’s a mainly women’s disease. 🙏

— Oct 31, 2022

My eyes started with either one of my eye lids closing when looking at the television or mobile phone.
After a month of this my eyes started to burn and visited A&E which concluded Dry Eyes. They have got progressively worse with photophobia and chronic pressure headaches.
I have had an ANA blood test for sjogrens and it was negative.
No one knows what is causing this and it is getting no better.
I am unable drive since my eye problem, photophobia and my eyes want to close and they burn. My life due to my eyes are limited and I’m looking for hope.
If anyone has had this before or has any suggestions. Please can you reply, with the upmost appreciation.

— May 9, 2023

<a href="https://www.atlanta2020.com/laser-eye-procedures/dry-eye/">I agree with the information provided in this statement. It is important to note that light sensitivity and headaches can have various causes, and it is crucial to identify the underlying cause to determine the appropriate treatment. While dry eyes can cause sensitivity to light, it is not typically associated with headaches. Migraine headaches, digital eye strain, and other eye conditions such as scleritis and iritis can also cause light sensitivity and headaches. It is important to seek the advice of an eye doctor to determine the cause of these symptoms and receive appropriate treatment. Thank you for this.</a>

— May 22, 2023

I have dry eye from Sjogren's but I do not get headaches. However, photophobia has been awful since I developed Sjogren's. My eye specialist says that my eyes are still in very good shape and the dryness is the only issue at this stage. No doctor that I have seen has been interested in investigating my photophobia further. So for me I can only attribute it to dryness. Having said that, even if I apply eye drops immediately before driving I still have the same glare problem from LED daytime running lights on cars, and from LED billboards etc. I now only drive when I really have to since it's so uncomfortable to be confronted by the glare from all the LEDs in our modern environment.