Photophobia

Join the Conversation on
Photophobia
447 people
0 stories
40 posts
About Photophobia
Explore Our Newsletters
What's New in Photophobia
All
Stories
Posts
Videos
Latest
Trending
Post

Autism/Autism Spectrum Disorder (ASD): Differentiation and Treatment Management of Migraine and Headache

People with autism/autism spectrum disorder (ASD) may experience various types of headaches, and studies have shown that the prevalence of migraine in ASD patients is higher than that in non-autistic patients. Studies estimate that approximately 50% or more of ASD patients suffer from migraines or frequent headaches. This prevalence is significantly higher than the general population. Like the general population, women are three times more likely to suffer from migraines than men, so autistic women are particularly susceptible to this type of headache. Migraines and tension headaches are the most common types of headaches in the ASD patient population, and the chances of migraines are higher than those of tension headaches.

Description of headache types in patients with autism/autism

Main types of headaches in patients with ASD

Migraine: characterized by moderate to severe throbbing pain, often accompanied by sensitivity to light and sound, nausea, and visual disturbances. Migraines can seriously affect daily function and may require specific treatment under the diagnosis of a professional doctor.

Timely diagnosis is essential to avoid debilitating consequences. Migraine aura is a sensory symptom (neurological, gastrointestinal, and autonomic) that may occur before or during a migraine attack. These symptoms may include visual flashes, blind spots, or tingling in the hands or face. When stimulated, nerves send electrical signals to the brainstem, which connects to nerves in the cortex and its covering, the dura mater.

Tension headaches: Often described as a dull ache around the head or neck. Tension headaches can be caused by muscle tension or stress and can vary in intensity. People with autism may be more susceptible to tension headaches due to heightened sensory sensitivities and emotional factors.

They are often called "hatband" headaches because they usually ache around the back of the head, temples, and forehead, like wearing a tight hat. Tension-type headaches (TTH) are recurring headaches that last from a few minutes to a few weeks. The pain is usually compressive or tight in nature, mild to moderate in intensity, and bilateral in location, and is not worsened by daily physical activity. Nausea and vomiting are not usually present, but photophobia or phonophobia may be present. Tension headaches can coexist with migraines, and one headache can transform into or trigger the other. Tension headaches often respond to physical therapy, relaxation therapy, and anti-inflammatory medications or muscle relaxants.

Sinus headaches: Sinus headaches are characterized by pain or pressure in the forehead, cheeks, eye sockets, eyebrows, or bridge of the nose. These headaches may be headache-only and not accompanied by sinusitis symptoms. Sinus migraines occur due to overactivity of the trigeminal nerve and the autonomic nervous system. The first branch of the trigeminal nerve is responsible for the head pain caused by migraines, but the second branch connects to sensors in the sinuses, which can cause pressure and pain in the forehead, behind the eyes or in the nose, and under the cheeks, mimicking some of the symptoms of sinusitis.

Cluster headaches:

Understanding the prevalence of headaches in autism and recognizing common headache types can help patients and their families seek appropriate support and develop personalized interventions. Attacks typically last 15 minutes to 3 hours and occur from once every other day to 8 times a day. These frequently recurring attacks occur in clusters (cluster periods), usually separated by periods of symptom-free remission, which often last for several months. There are diurnal and seasonal differences in the frequency of attacks, with higher frequencies at night and in spring and autumn. Phonophobia and photophobia in cluster headaches occur unilaterally (usually on the side with pain), while in migraines, phonophobia and photophobia occur bilaterally.

Symptoms of headaches in patients with autism spectrum disorder (ASD)

Sensory impairment: Many patients will experience sensory impairment, such as sensitivity to light, sound or smell. Some patients may also experience visual impairment, such as seeing flashes or blind spots, due to the sudden need to be in a dark and quiet space (photophobia and phonophobia).

Severe headaches: Young patients usually experience severe headaches and strong irritability. Some children even show aggressive or self-harming behaviors. Headaches may last for hours or even days, which may make patients more withdrawn or irritable and difficult to concentrate. These headaches are usually aggravated by physical activity and may be accompanied by dizziness, nausea, abdominal pain or vomiting. Child patients will repeatedly touch or hit their heads, use their heads to press against the wall or other hard objects to press on the head and nose bridge, and bite clothes, pillows and the back of the hand when they have a headache.

Fatigue and mood changes: Headaches can cause fatigue and mood changes in patients, including irritability, depression or anxiety, which can seriously affect daily functions. Some autistic children do not have the habit of taking naps, so they feel tired between 5 and 6 in the evening. Many patients are prone to headaches during this period.

Sleep disorders: Headaches can disrupt patients' sleep patterns. Children with ASD may have difficulty falling asleep or frequently wake up and cry at night

Phantom tooth pain: Many headache patients have trigeminal nerve conduction problems. Trigeminal neuralgia can cause pain in the upper teeth of patients. Some children still have unresolved pain after tooth extraction or root canal treatment

Relaxed satisfaction: Sometimes after the headache attack ends, children will show a happy and relaxed satisfaction

It is worth noting that not all autistic children will show the same signs and symptoms. Headaches vary in manifestation, and some children may not be able to express their pain or the type of experience in words. Therefore, parents need to closely observe their children's behavior and consult a professional doctor if they suspect that their children have headache symptoms.

Some common symptoms of autism and migraines

Sensitivity to light and sound: People with autism and migraines may both be highly sensitive to light and sound, which may exacerbate their symptoms.

Headaches: Both conditions can cause headaches, although the nature and intensity of the headaches may vary. People with autism may have difficulty expressing their pain or describing the feeling of a headache, so healthcare providers must consider their unique communication style.

Disrupted sleep patterns: Both autism and migraines can disrupt sleep patterns, making it difficult to fall asleep or stay asleep. This can lead to increased fatigue and worsening of other symptoms.

Difficulty in diagnosis

Diagnosing migraine in children with autism can be complicated due to a variety of factors. These challenges may include:

Communication difficulties: Children with autism may have difficulty accurately expressing their symptoms or describing their pain. They may have limited verbal communication skills or difficulty expressing themselves, making it more difficult for parents and healthcare professionals to identify migraine.

Symptom overlap: Migraine symptoms may overlap with core symptoms of autism, such as sensory sensitivity and behavioral changes. Distinguishing these symptoms can be tricky and may require careful observation and tracking of patterns.

Nonverbal children: Nonverbal children with autism face additional challenges in expressing pain or discomfort. Parents and healthcare professionals must rely on other communication methods, such as observing behavioral changes or using visual aids, to assess the presence of

2 reactions
Post
See full photo

What symptoms do you usually experience during a migraine attack?

From head pain to nausea and mood changes to vision loss, migraine sure can cause a lot of symptoms! We asked our Mighty community which symptoms they experience during their “typical” migraine attack and their experiences are just as varied as the symptoms themselves. Photophobia (sensitivity to light) and headache were the most common symptoms and headache only came in second by one vote. Phonophobia (sensitivity to sound) was the third most common symptom experienced by our migraine community.

What symptoms do you usually experience during a migraine attack?

#Migraine #mightywithmigraine #ChronicIllness #ChronicPain #Disability #Fibromyalgia #EhlersDanlosSyndrome

17 reactions 12 comments
Post
See full photo

The Incandescent Light Bulb Ban Harms Many

I have photophobia and over 10 years dealing with it, I have found incandescent bulbs are the only light I can tolerate for long periods. This year, the US president, Joe Biden has pushed forward on a ban of all incandescent light bulbs in an effort to support reductions in carbon emissions. I am terrified of this because it means I will never be comfortable in my own home anymore. I cannot tolerate the greener options available (fluorescent and LED) and being around these lights cause me significant pain and mental distress to the point where I become non-functional.

Does anyone know where I can start to get the needs of people with photophobia and other visual sensitivities heard on this issue? I was thinking about contacting an optometry group, a news station, The American Foundation for the Blind, The ADA, writing a letter to local state reps, even the president.

There isn't really a group specifically for photophobia and light sensitivity and our needs often go overlooked because eye problems that require brighter lighting are more common.

Also I don't have all the illnesses I hashtagged, I just wanted to bring other people with conditions that can cause light sensitivity into the conversation.

#Photophobia #EhlersDanlosSyndrome #Autism #Migraine #ChronicMigraineSyndrome #HemiplegicMigraine #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Meningitis #BrainInjury

18 reactions 11 comments
Post

A Miracle, A Solution… I am so happy! #Photophobia #VisualImpairment #Blindness #Migraines

Update: A miracle has occurred sooner than expected! My new corrected tinted filter and filter cap for my glasses are in and am very grateful as insurance covered the cost. All I need to do now is get over this cold so I can pick them up! This is such a huge relief as I haven’t been able to go out in months without #Migraines , #Photophobia , eye pain, meaning I wasn’t really going out. And now I can be pain free very soon! Now I just need to advocate and figure out how to get the other custom pair that is for everything else that isn’t distance magnification or telescopic use covered!

Post

Oh… #Photophobia

This past month my #Photophobia has been horrendous. It’s been so bad that I can’t even go outside most days even if it is cloudy because it is too bright for my eyes to handle. This leads to #Migrane I’m already #LegallyBlind / #functionallyblind / #VisuallyImpaired so… now I have too keep my eyes completely shut which just makes things harder. Thankful for my #MobilityAids This has lead to a #Depression episode and of course my #Anxiety has been troubling a bit too. Mainly my #Trich has gotten out of hand because of the anxiety. But, good things are coming as I did have a tint evaluation for specialized glasses for the #Photophobia now we just play the waiting game and hope I can somehow obtain enough money for the second specialized pair that I can use for daily tasks once I find out the cost!

4 comments
Post
See full photo

What kind of eye masks have you tried?

You know you live with migraine when one of your favorite holiday gifts is a new eye mask. My parents got me a weighted one (called the “eye pillow”) from the compression brand IMAK. It’s full of ergoBeads to create a very subtle massage feel. The box says it can provide relief from migraine, eye strain, post-surgical pain, puffy eyes, and sinus pain. (Bonus: You can pop it in the freezer for a chilling effect as well!)

Since I spend a lot of my time on screens talking to you lovely humans, I am really looking forward to winding down my day with this tool.

Do you use an eye mask regularly? Do you sleep in one? Does it help with your migraine symptoms, especially if you struggle with photophobia? Drop your favorite (or least favorite) brands in the comments below. #ChronicVestibularMigraine #chronicmigraine #ChronicPain #ChronicIllness #Fibromyalgia #Lupus #Disability #Endometriosis #Migraine #ClusterHeadache #SinusPain #AcuteStressDisorder

8 comments
Post
See full photo

Seven hours on a stretcher in an ambulance - viral meningitis

Seven hours on a stretcher in the back of an ambulance after being blue lighted to the emergency room.
I can not fault the ambulance staff, they were brilliant. Kept my pain at bay, tried to keep my spirits up as I apologised for delaying them getting their next patients. They reassured me that the system was at fault & needed fixing to stop these long delays.
I was then admitted to the ward & given my first chance to go to the loo.
Bedpan full & the nurse spilt a bit and I had to sit in it for another 7 hours & yes even through all the pain I was embarrassed.
Little did I know I would have to wait another seven hours until my next visit to the bathroom !
Subjected to a barrage of tests & scans to decide what was wrong
Doctors were very loathed to do tests & plenty of umm-ing and arh-ing went on.
The dreaded lumber puncture was to be done, in came a man with a clipboard & calculator. Weight & height taken he then proceeded to tell me that it would be difficult to do a lumber puncture because “I have a fat spine “ ? A what ? Yep that was correct, I heard correctly. I assured him I did have some fat on my body but pretty sure people much larger than me have lumber punctures. I am not obese by a long way. He abruptly disappeared.
I was then transferred to another ward
Eighteen hours after I left my home a consultant came and I had to repeat myself for the fifth time. I had photophobia my head was about to explode, my neck stiff painful joints & temperature. He examined me told me a lumber puncture was not necessary, that I had viral meningitis, possibly caused by contact with someone who has had their covid vaccine. Oh the joys of a failing immune system. I have been advised not to have the vaccine because of my health conditions & even though the meningitis is awful ( fith time I have had it !) I would not want to risk the vaccine.
I guess I have been gifted as where I live is so remote & now I know just how bad this can make me without the injection, then masks & full precautions will be taken even though rules have relaxed in England & Wales.
Fixing one thing can break another. The world health organisation are aware of a link between the vaccine & meningitis. They are monitoring the situation.
I am home in my own bed & feeling awful but the antibiotics are starting to work. My body will make me pay for the use of antibiotics but when needs must it’s the lesser of two evils.
I knew I was bad but never thought it would be viral meningitis again.
So after the embarrassment, knock to my confidence & esteem in the knowledge that I have a “fat spine” I will retreat and lick my wounds & try to muster up enough strength to keep fighting.
I did not choose my body to be disabled with various illnesses but I have been made to feel ashamed &embarrassed about it.
I might just be feeling a touch delicate right now & not have taken these things to heart but had to express myself as alway in writing
#Viral #AutoimmuneDisease #Spoonie #Pain

1 comment
Post

Anyone who has gone off disability but still have chronic illness?

I don't know how to make life work living on disability--especially after I lose my mom's insurance. I looked at the figures for social security and I can only make $1260 gross income before losing my disability status, most of which would remove my SSI payment. I'm good at a lot of things, but haven't worked before, I wasn't able to finish more than a year of college, can't do demanding physical labor (no 40lbs for me), and can't be stuck all day in one position. I don't know if I'm looking for solutions, just looking for people and guidance on how to navigate trying to find work after being disabled. #Depression #Anxiety #Disability #EhlersDanlosSyndrome #Photophobia

7 comments
Post

Ocular Manifestations of EDS #EhlersDanlosSyndrome

I have to get glasses for the first time today. Doing last minute research because the severity of my poor vision changes

I came across this at the link included. There us also a kindle unlimited book (by I think the same author. If you have KU you can borrow it, if not it is 2.99
Ig coveres these issues in more depth

totaleyecare.com/ocular-complications-ehlers-danlos-syndrome

How do I know glasses will help / prescription will stay the same if blurriness levels change?

Common symptoms
Doctors and EDS patients must not assume that their symptoms are always due to their EDS and are therefore unactionable. For example, even among the EDS population, the number one cause of fluctuating vision is diabetes.

Blurred vision that comes and goes;
difficulty in accommodation
• Diplopia (double vision) out of one eye, or with both eyes open
• A change in depth perception, especially when looking to the side that may be intermittent
• “Photophobia” (light sensitivity) • Complete, or almost complete, loss of vision in one eye that lasts a few minutes; migraine auras, scintillating scotomas
• Visual “snow”
• Dry eyes
• Tunnel vision
•Floaters (EDS patients have more floaters than the general population)
• Flashes of light or a curtain over the vision •
*Vision that is not fully correctable with glasses or soft contact lenses. (Doctors should perform corneal topography on all patients with unexplained blurred vision.)
• Myopia (nearsightedness) that increases quickly •
• Deep eye pain that seems to have no ocular cause (it may be due to venous pressure on the branches of the trigeminal nerve -- the fifth cranial nerve in the cavernous sinus – and can thus exhibit intermittently).

Comorbidities

High Myopia
Nearsightedness
In Ehlers Danlos Syndrome, however, the corneas are often found to be fairly flat, meaning that the near-sightedness is due primarily to elongation of the eye.6
Keratoconus
Early symptoms of keratoconus include vision that just doesn’t seem as clear to the patient as it should be – even with use of new glasses or soft contact lenses. It is usually worse in one eye than the other.
Diagnosis of
Lens Subluxation
Angiod Streaks
Dry Eyes
Strabismus
Macular Degeneration
Posterior Staphyloma
Carotid-Cavernous Sinus Fistulas

9 comments