Etta Shaheen, 41, has been bedridden for two years. She said she felt like "she was floating outside," leaving her unable to perform basic tasks like taking a shower. Shaheen first noted the symptoms in 2019, recalling that her head seemed filled with cotton wool. When she visited her doctors, they dismissed it as common anxiety.
Although her CT scans and MRIs were normal, she was not comforted. She felt terrified and knew something was off. The chronic illness and healing advocate said that her heart was constantly pounding, she was sweating, and she felt freezing. She thought she had a stroke or heart attack as she was unable to walk and could barely talk, New York Post reports.
When she found a nose and throat doctor, he diagnosed her with chronic vestibular migraines. The migraines are causing her persistent postural-perceptual dizziness or what is commonly called "Alice in Wonderland" syndrome.
"Alice in Wonderland" syndrome
According to Healthline, Alice in Wonderland Syndrome is a rare neurological disorder that causes temporary distortion of visual perception, sense of touching and hearing, and sense of time.
People suffering from the syndrome may find that the room they are in or its surrounding furniture may shift and feel further away or closer than it is. The problem is not related to the eyes, nor is it a hallucination. It is caused by changes in how the brain perceives the patient's environment and how its body works.
The diagnosis was just the beginning for Shaheen. Eventually, she lost her ability to do simple tasks like walking the dog, cooking, working, and taking a bath alone. The syndrome caused her to become bedridden for months. For the first two years, she was experiencing the symptoms 24/7. She said not being able to walk down the stairs was the most challenging point in her life.
The condition is also known as Todd's syndrome, as it was identified in the 1950s by Dr. John Todd, a British psychiatrist. In his notes, the syndrome closely resembled episodes the character Alice Liddell experienced in Lewis Carroll's novel "Alice's Adventures in Wonderland."
Managing Alice in Wonderland
Eventually, Shaheen learned to manage her condition. She started by figuring out triggers. She tried changing her diet, cutting off stress and toxic people in her life, and making sure she moved her body daily.
A year after her diagnosis, she learned about rewiring her brain to "create new neural pathways." The technique helped her keep her mind off the symptoms and create "brain pathways" so her body could heal. The method also enabled her to redirect and not think about her symptoms and negative emotions, be mindful of positive emotions, and focus on meditation and brain games.
Spreading awareness
According to Neurology Live, the condition affects about 10-20 percent of the population. It is an infrequent event that may happen only a few times throughout the lives of the most affected individuals.
Shaheen is raising awareness about the condition and aspires to find its cure, adding that she has so much hope after hitting rock bottom.
