Photophobia

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How concepts makes knowing yourself harder: my view on my blindness. #Blindness #MentalHealth

It’s such a weird concept for me when it comes to my condition.
I grew up low vision due congenital cataracts, even having made surgery at 3yo. My first experience in the visually impaired world wasn’t known for me. I never realised I saw so little compared to others, I never had something to take as reference so for me: it was just normal. I was just clumsy. It’s normal for people with myopia to have to wait the bus to be like 2 metres from you to signalise for it to stop. That’s how I grew up until an eye doctor tell me: “you must not lie and guess the letters. If you lie and guess them I won’t be able to properly diagnose, so if you can’t see them, just tell me.”
And that was my first time hearing the term “low vision”, at 18yo, the same year my retinal dystrophy decided to manifest, basically about 6 months before I became legally blind.

What makes it even weirder for me is taking years to know I have a retinal dystrophy, and to now be self aware to know the symptoms it displays. Not a self diagnostic but also not an opinion of a doctor but a guess I have.

My condition seems to be Retinitis Pigmentosa Sine Pigmento. A form of RP that’s really hard to catch because it doesn’t show itself as most forms of RP do.

And it’s a hard thing to grab because I didn’t know I was night blind until recently, I thought I couldn’t see at night because I have photophobia and the street lights and cars messed with my vision. I had to discover my night blindness in a very out of the box way. I knew I had tunnel vision but that’s one of the aspects that made realising the night blindness even harder.

For those with congenital aumarosis (100% blind by birth with no other condition in play), what they see, is absolutely nothing, and humans usually can’t grasp the idea of absolutely nothing. There are some tests you can do to have a partial idea of what it is, but it’s not black, it’s absolutely nothing. And for some reason, that’s a concept I understand. So when it comes to my tunnel vision there’s no blackness outside of my visual field, and I don’t have enough visual memory to even know if this lack of field of view was once lower, I have no idea what’s outside of my field of view, and it’s not blackness, it’s just nothing at all, and I even had to try to explain to blind people about nothingness because they acquired blindness and they see full black or full white, or just gray.

So I never even noticed the night blindness, because it portrays as street lights and vehicles headlights, and just a deep darkness that makes everything basically black, and I just didn’t understand that besides the lights, the blackness meant I couldn’t see. Until the day I went into a darker place with sunglasses and I couldn’t see, then it came, late again, but came, what night blindness looks like.

So basically: tunnel vision, check; night blindness, check; getting darker becomes something similar to static on a tv, check. I will go for a diagnosis to know if it’s RP or if it’s another retinal dystrophy that has similar symptoms, I plan on going after it this year, I just need to have some time to breathe since I haven’t stopped since September and I’m basically burned out.

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Photophobia

I had a head injury two years ago. I have a slew of other injuries too. I would say the #1 issue that I can't seem to get away from is my light sensitivity. The sunshine, LED's, Fluorescent, Blue Light they all trigger dizziness & Migraines. I do wear FL-41 filters over my eyes everytime I leave my house. I have tried other migrane glasses like Avulux - but they don't work. Just through my research they say FL-41 lenses work better for people who have head injuries. Does anyone know if Photophobia will just disappear and go away? I'm really hoping so because this sucks! I'll be starting vision therapy soon and I really hope it heals my brain and it goes back to normal. If you have Photophobia can you please tell me how you deal with it. Thanks #Photophobia #Migraine #vestibular

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I'm new here!

Hi, my name is MamaBytes5. I'm here because I fell at work 2 years ago. I have many injuries. I accept it as my new normal. Healing is very slow. Not only do I have a lot of side effects from my head injury but I also have had 4 surgeries on my right hand, wrist and elbow. Been in therapy for 2 years now and I'm wondering when will it get better? Does anyone have any insights on Photophobia? Does that ever go away? I'm living under the orange shades of my FL-41 lenses.
#MightyTogether #Migraine #HeadInjury #Photophobia #VestibularNeuritis

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Does Anyone Else Name Their Migraines Too??? #Migraine #Prodroms

Does anyone else have Prodroms that indicate the potential severity of the oncoming #Migraine Attack? If my prodrom is a very specific food craving I call it a "Craver Migraine" and it's one of my worst types. If I'm having insatiable hunger, like I eat and eat and eat and I'm still hungry, that's a "Hunger Migraine" and I'm in for an even worse attack than a craver. Tinnitus, random "Ear Worm" song I haven't heard in years but it's stuck in my head out of nowhere, and a "Yawner" prodrom is a mid level and means I can probably break it with what I have. The "Blinding" aka Aura or Occular Migraine depends on what percentage of vision loss occurs as to how severe it will be, 10-20% vision loss I can manage, 30-50% loss I'm looking at imatrex, 60-90% may mean ER level. If I have a combo of Prodroms, like Hunger and Craver together I'm definitely in trouble. Does anyone else name their migraines? Is this just a weird quirk only I do? Lol, I AM weird so no worries if you comment and say I'm weird. ^_^

My migraines have been 24/7, non stop for almost 18 years, that's literally more that 50% of my life (17yo-35yo), and because I've never known a moment without Migraine, abortive meds like Imatrex only help the symptoms like nausea, photophobia, sound sensitivity and smell sensitivity, but doesn't actually affect the Migraine itself or prevent them. Comment and let me know if you name your migraines too.
#Migraine #ChronicPain #Prodroms

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Does Anyone Else Name Their Migraines Based on Prodrom Symptoms? #Migraine #Prodrom #chronicmigraine

Does anyone else have Prodroms that indicate the potential severity of the oncoming #Migraine Attack? If my prodrom is a very specific food craving I call it a "Craver Migraine" and it's one of my worst types. If I'm having insatiable hunger, like I eat and eat and eat and I'm still hungry, that's a "Hunger Migraine" and I'm in for an even worse attack than a craver. Tinnitus, random "Ear Worm" song I haven't heard in years but it's stuck in my head out of nowhere, and a "Yawner" prodrom is a mid level and means I can probably break it with what I have. The "Blinding" aka Aura or Occular Migraine depends on what percentage of vision loss occurs as to how severe it will be, 10-20% vision loss I can manage, 30-50% loss I'm looking at imatrex, 60-90% may mean ER level. If I have a combo of Prodroms, like Hunger and Craver together I'm definitely in trouble. Does anyone else name their migraines? Is this just a weird quirk only I do? Lol, I AM weird so no worries if you comment and say I'm weird. ^_^

My migraines have been 24/7, non stop for almost 18 years, that's literally more that 50% of my life (17yo-35yo), and because I've never known a moment without Migraine, abortive meds like Imatrex only help the symptoms like nausea, photophobia, sound sensitivity and smell sensitivity, but doesn't actually affect the Migraine itself or prevent them. Comment and let me know if you name your migraines too.
#Migraine #ChronicPain

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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

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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

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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

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