A woman has shared her journey to being diagnosed with Alice in Wonderland syndrome after suffering from 'terrifying out-of-body experiences'.
Etta Shaheen, 41, has felt like she was 'floating outside of herself' as part of her debilitating condition - but has worked to manage her extraordinary symptoms that saw her homebound for almost two years.
Etta, from Las Vegas, US, first noticed her health deteriorating in November 2019 when she started waking up feeling extremely dizzy.
After a month of persisting symptoms – including feeling off balance and like her “head was filled with cotton wool” – she decided to visit her doctor, but was stunned when multiple healthcare professionals told her it was anxiety.
"I had MRIs and CT scans and everything came back normal but something was very off and I was terrified,” Etta, a chronic illness and healing advocate, said.
On 5 January 2020, she was having a normal day at home doing laundry when she suddenly fell to the ground with extreme vertigo.
She explained: "I was unable to stand and I was violently vomiting. I rang my partner, Michael, 41, and he came rushing home.
"My heart was pounding, I was sweating, I was extremely cold and I thought I had a stroke or heart attack."
An ambulance arrived and Etta was rushed to the emergency room.
She added: "At this point what I was saying didn't make sense and I didn't know where I was.
“I realised I was completely unable to walk and barely able to talk.”
She came around and had tests including blood work, a brain scan, and eye checks – but they all came back as normal.
Michael found her an ear, nose and throat doctor, who 10 days later diagnosed her with chronic vestibular migraines – which caused Persistent Postural-Perceptual Dizziness (PPPD) and Alice in Wonderland syndrome – in January 2020.
PPPD refers to being dizzy for a long period of time constantly, while Alice in Wonderland syndrome is when a condition causes temporary episodes of distorted perception and disorientation.
Etta said: "From when I first fell, my symptoms of Alice in Wonderland syndrome started to develop.
"It was almost immediately after that I felt this awful spaced out feeling like I wasn't connected to my body anymore.
"I had sensations of not being in my body or felt like I was floating outside of myself.
"It's like you have no sense of where your body is, like you're in space.
"You know you are standing, say for instance on the sidewalk, but you feel like you are behind yourself looking through glass and your life isn't real anymore.
"It's as if you are observing yourself from somewhere else.
"For me I used to feel as if I was floating above myself and I was totally and utterly detached from who I was.
"This feeling is absolutely terrifying because you don't know when it will stop."
Despite this, her diagnosis came as somewhat a “relief”.
Etta said: “It confirmed that something indeed was wrong but because I had not heard of any of these things, I was utterly confused. Mainly because I was not having headaches and he gave me a diagnosis with migraine in it.”
From when she was diagnosed, she spent months unable to leave her home, walk her dogs, cook, clean, work or even shower by herself.
She said: "For the first two years, my symptoms were 24/7.
"It was the hardest point in my life, it was so debilitating I can't even put it into words.
"I was unable to do anything – I couldn't even walk downstairs."
Her partner was “incredible”, caring for her at this time and researching ways to ease her crippling symptoms.
With a lot of hard work, patience, consistency and a complete lifestyle change, Etta started to learn how to deal with her condition.
She said: "First and foremost I had to figure out my triggers, what was causing me to feel worse.
"So I changed my diet, tried to cut as much stress as possible, cut out toxic people in my life and made sure I moved my body daily.
"After getting a proper diagnosis from a specialist I started vestibular rehabilitation therapy, cognitive behaviour therapy, and medication."
Around a year later, Etta learned about neuroplasticity, which is rewiring your brain to create new neural pathways.
She added: "This helps you learn to take your mind away from your symptoms and helps create new pathways in the brain so your body can heal.
"I chose to dive into Dr Joe Dispenza and the DNRS, known as the dynamic neural retraining system, which is what has gotten me to where I am today."
This entails exposure therapy, which Etta describes as “doing rounds of talking to myself throughout the day to refocus my thoughts away from the stress of my symptoms, guided visualisation, being mindful of positive emotions, sitting with negative emotions and redirecting them, meditation, and brain games”.
She added: “Most importantly not putting a name or emotion to my symptoms.
"I had to relearn how I thought about my disease and how I approached it to be able to heal. It took a tremendous amount of work.
"Sometimes doing these exercises several hours a day. I had to think of myself as a healing person, not a sick person.”
While this has helped enormously, Etta still suffers from her condition from time to time, but has learnt how to deal with them in her own ways.
She said: "I will always have to manage them to some extent for the rest of my life.
"Relapses happen, not as often as they used to but I still have to make sure I am doing my vestibular rehab exercises, monitoring my diet, managing stress and making sure I am being mindful everyday so I don't relapse.
“My symptoms are with me to some extent all of the time, but I have learned to put them in the background so I can live my new normal.
“When I have stressful events, my symptoms will spike and I will need to slow down. I remind myself when they do spike that it is temporary and I will be back to my baseline soon.
“I would say I am at 90-95% most days and during relapse I am at 80-85% and it only lasts a few days at the most.”
Etta shares her journey on Instagram (@the_dizzy_diva) and helps connect other sufferers with VEDA – an organisation she set up for people with the same symptoms she has experienced.
She said: "Getting a proper diagnosis can take years for some people but there are things to help along the way.
"Treatment is different for everyone. What has worked for me doesn't work for everyone, it takes trial and error.
“My biggest hope for the future of course is to find a cure. Now that I have hit rock bottom with my health and recovered to where I am now, I have so much hope.
“I don’t see any situation as hopeless and I see the power that humans have to heal themselves. It has been incredible to connect with others that have gone through what I have.
“I have people contact me almost daily that are suffering with vestibular and Alice in Wonderland symptoms. I do everything I can to point them in the right direction so they can get a diagnosis or learn how to start healing themselves.
“When a person is suffering with something so debilitating it is so comforting for them to have someone they can relate to.
“It also gives them hope to see me thriving after being home bound for nearly two years.”
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