In Lewis Carroll’s story Alice in Wonderland, Alice saw objects take on various odd forms. Some objects decreased in size while others increased in size. In 1955, a British psychiatrist named Dr. John Todd heard about these symptoms and decided to call it the Alice in Wonderland syndrome. Some people also refer to the condition as Todd’s syndrome. These disorienting effects actually point to a rare neurological condition. Those with this syndrome may also experience severe migraines or epilepsy. It can be debilitating and leave people paralyzed with the symptoms for hours or days on end. This syndrome affects everyone differently. While some people only experience the symptoms once, others experience it for quite some time.
What is Alice in Wonderland syndrome?
Alice in Wonderland syndrome (AIWS), also known as Todd’s syndrome, is a rare neurological condition that causes disorienting episodes. Think of Alice’s adventures in Wonderland from the time she falls into the rabbit hole to all her different disorienting experiences. As she’s traveling down the rabbit hole, she starts to see various pieces of furniture floating around her. There are colors pulsating as she looks around. She looks in a mirror and sees a distorted view of herself. Once she lands safely on the floor, she finds a series of doors that seem to get smaller and smaller as she opens them. From there, she continues on her disorienting adventure. This is how an episode feels for those with AIWS. It’s important to understand that these episodes are not visual hallucinations or illusions. It’s possible that the episodes are due to a change in the electrical activity in parts of the brain that are responsible for processing the way people perceive their surrounding environment.
It’s unfortunate that doctors don’t know the exact cause of this medical condition, but the first reported case occurred in 1955. Since then, most of the cases that have been reported to doctors have been from children. It’s not until the child describes their symptoms that adults start to confess that they once had, or continue to have, those symptoms. It’s possible that it can be hereditary. However, it can also be caused by other conditions. Migraine headaches seem to be the most common cause. While some doctors believe that AIWS is a type of migraine, others believe that it may be a symptom of the condition. Either way, migraines are associated with this condition. Other causes include epilepsy, infections such as Epstein-Barr virus, head trauma, stroke, brain tumor, and even certain medications like cough syrup.
Symptoms of Alice in Wonderland syndrome
The most commonly reported symptoms of AIWS are size and visual perception distortion. Some people experience micropsia, which is when they see objects as extremely small. Others experience macropsia, which is when they see objects as extremely large. They may even have a distorted body image because when they look at their own body, they either see it as extremely small or extremely large. They may also see objects closer (pelopsia) or farther (teleopsia) from them than they actually are. Some people may experience flashes of color or see colors pulsating. They may also see straight lines turn wavy. Since these symptoms are often accompanied with migraines, doctors believe that these are auras giving warning that a migraine is coming.
Vision isn’t the only sense that can be affected. Some people can experience sound distortion. Sound can either be really loud or really quiet. It can also be very high pitched or very deep. It can also appear to be sped up or slowed down. Time distortion is another symptom that people with AIWS can experience. People can lost their sense of time and it can appear to be moving faster or slower than normal.
The most concerning symptoms are the loss of coordination or limb control. The altered sense of reality that an episode can bring on can also affect someone’s ability to walk properly or even move around. People may feel uncoordinated or struggle to walk as they normally would. Sometimes it may feel as though they don’t have control over their own muscles and their limbs react involuntarily.
Individuals who experience these symptoms should bring it up with their doctor immediately. Doctors should monitor each time this happens to ensure that it doesn’t get progressively worse. Individuals will probably be referred to a neurologist so that they can run multiple tests. Unfortunately, there isn’t just one test that can diagnose individuals with AIWS. For this reason, multiple tests will have to be run and the doctor will probably have to rule out other medical conditions before landing on Todd’s syndrome.
The doctor will inquire about the symptoms and ask if there’s a history of migraines before jumping into the tests. Some of the tests include:
- A blood test:Blood tests help rule out other medical conditions, but it can also confirm any viruses like Epstein-Barr virus.
- Electroencephalography (EEG): An EEG measures the electrical activity in the brain.
- MRI scan: An MRI takes detailed images of the brain. This will help identify or rule out any brain tumors.
Since this condition is still a bit unknown to doctors, it’s not uncommon for this condition to go undiagnosed. However, persistence is important for a proper diagnosis. Doctors should be taking detailed notes of each visit to keep a record of symptoms.
Treatment for Alice in Wonderland syndrome
Currently, there isn’t a treatment for AIWS. The best course of treatment is to treat the associated condition. If the associated condition is a migraine, then the doctor will work towards treating the migraines. If the associated condition is epilepsy, then the doctor will work on treating epilepsy. The key is to reduce the amount of episodes the individual has to endure. Certain medications may help with this treatment, but doctors may also suggest that individuals change their diet to help reduce migraines or seizures.
While the symptoms have been reported to get better overtime, this may not be the case for everyone. Most adults tend not to report the symptoms in adulthood because they’ve been dealing with them since childhood. Some adults have even said that their symptoms embarrassed them because their visual distortions made them feel crazy. So, doctors don’t have a great indication of how many adults still suffer from episodes. This is why adults who continue to experience these symptoms need to make sure to report it to their doctors and keep a record of symptoms.
Social Security disability insurance (SSDI) for Alice in Wonderland syndrome
It’s unfortunate that the condition itself won’t qualify individuals for disability benefits. If individuals with AIWS can prove that the symptoms prohibit them from maintaining a full-time job or earning a living, the SSA may grant them benefits. Symptoms such as chronic migraines and seizures are more likely to get approved than those who have AIWS because of an infection since infections can be treated. However, they still have to prove that the migraines or seizures are prohibiting them from working.
For those who have chronic migraines or seizures with their AIWS, the SSA will take a few factors into consideration when taking a look at the disability claim. These factors are different for each symptom.
- Chronic migraines: If applicants have migraines as a symptom, the SSA will look at the applicant’s daily limitations, the frequency and severity of the migraines, take a look at the applicant’s employment options, and they’ll review the applicant’s medical records. If the SSA finds that applicant can’t perform their daily work tasks due to their migraines, they’ll grant SSDI benefits.
- Seizures: If applicants have seizures as a symptoms, the SSA divides the eligibility into two qualifications: convulsive epilepsy and non-convulsive epilepsy.
- If the applicant has convulsive epilepsy, the SSA will review the applicant’s medical records and see if they have had at least one seizure a month even after taking proper medication for three months and the convulsive seizures occurred during the day or at night causing symptoms that affected daytime activities.
- If the applicant has non-convulsive epilepsy, the SSA will review the applicant’s medical records and see if they have had at least one seizure a week even after taking proper medication for three months and the seizures interfere with the applicant’s daily activities or cause post-seizure behaviors that are not normal.
Applicants can also request a residual functioning capacity (RFC) form that they will have to ask their physician to complete for them. This form essentially acts as proof that the applicant’s symptoms prohibit them from performing certain work tasks because of how debilitating they are. While this process is lengthy, the more proof and paperwork applicants can provide, the better their chances of gaining benefits.
How we can help
It can be difficult to go through the application process alone. There’s a ton of paperwork and ensuring that all proper documentation is included in the submission is tiresome. Add to that a debilitating medical condition and it equates to a less than ideal situation. Having the help of experienced disability lawyers can make all the difference. Our experienced lawyers at Osterhout Berger Disability Law know exactly what it takes to properly submit a disability claim and are ready to help in whatever way they can. Schedule a free consultation today!