By Jessica Bashir-Stone
Alice in Wonderland syndrome has affected my daily life massively. I already suffer with anxiety but the anxiety it causes is crazy. I’m constantly scared that I am going to have a fit in public, at work or around family. It’s really hard to have any kind of social life because when I do have a fit, I can’t see.
Everything either goes green or white – literally I go blind. The other symptoms I suffer are migraines, dizziness, loss of colour in the face, hot flushes, vomiting, vertigo, loss of vision and hearing, passing out and seizures.
The condition alters everyday life not only because of the anxiety it causes but the sudden stop of the world if I do have a fit. I become paralysed; quite seriously, I cannot move.
Changing perceptions in the brain
Alice in Wonderland syndrome, also known as Todd’s syndrome, is a medical disorder that affects the neurological part of the body. The syndrome causes a distortion in a person’s view of reality; in this case, my view of reality and of myself.
The medical condition is rare and causes changes in how the patient perceives both the environment and themselves. It “causes temporary episodes of distorted perception and disorientation. You may feel larger or smaller than you actually are. You may also find that the room you’re in — or the surrounding furniture — seems to shift and feel further away or closer than it really is,” according to Healthline.
People with the syndrome suffer recurring episodes, which can last a few minutes or up to thirty, and are different for every individual. According to Healthline, they include: migraines, distortion of size (that objects are getting smaller or growing larger); distortion in time (when time is moving either more slowly or more quickly than it really is); sound distortion (when noises are unbearably loud), and loss of control of your limbs.
The condition, which researchers believe is caused by an infection or trauma, occurs when “electrical activity in the brain causes abnormal blood flow to the parts of the brain that process your environment and experience visual perception,” says Healthline.
While there is no treatment, taking steps to avoid triggers that can cause an episode, such as a migraine, can help alleviate symptoms.
Diagnosed at age 15
I was diagnosed with the syndrome at fifteen years old. Most of my teenage life I was subject to randomly passing out, telling the doctors that my head felt like a brick and that my teeth were growing. At the time I was suffering extreme headaches and life-altering migraines, which meant it was hard for me to do everyday tasks.
I was under the paediatric centre at the Evelina, a subsection of Guys and St. Thomas’ Hospital in London, and had been since the day I was born. I had been under care as I was born not breathing, and was given a tracheostomy (insertion of a tube into my windpipe) on my first birthday.
That operation (I had 23 surgeries before I turned one year old) had caused internal bleeding as it hit my vagas nerve, causing nerve damage. Along with that I had digestion issues, speech issues, heart murmur, a tumour in my throat, and my blood flow was very slow.
When I started regularly fainting, my doctor decided that a tilt table test would be smart, to test my blood pressure and blood flow around my body. He prescribed this after I told him that as I fell asleep, I was imagining a rock coming from the back to the front of my brain, and the low rumbling that came with it was louder and louder and was stopping me from sleeping.
I was strapped to a table and quite literally tilted back and forth with wires coming out of every which way to measure what they could.
My doctor told me at a very young age that being vulnerable and honest with medical staff is one of the most important things that you can do, but also one of the scariest, and he was right. Dealing with the numbing feeling I got as my hands ‘grew’ right before me or the echoing noise as I tried to sleep was, and still is, the scariest thing I have dealt with.
A condition for which there is no cure
Former paediatric intensive care nurse, Hannah Stranaghan, says: “The research that has been done into Todd’s syndrome is not enough, and the diagnosis should happen a lot younger.”
“The issue with the syndrome is that there is no fix. The only medication that can help is extreme blood pressure medication, but the side effects are worse than dealing with the issue itself.”
I’m now 21 and a university student. I have learnt to deal with the medical disorder as well as I can. The migraines are still the main cause of the syndrome, however the syndrome itself also causes migraines so I often find myself in a Catch-22 situation.
The fits are horrible and after I have one I have been known to sleep for up to two days straight. It’s something I personally find hard to speak about because it has pretty much ruined a lot of great things for me.
Hard for the people I love
It’s also hard for the people I love and who love me to see me like that, and they also don’t know how to help me or react so it stresses them out. It’s hard seeing the people you love hurt because you’re hurting, It makes me hurt more.
The world often seems overly surreal, and the looming fear of an attack lives with me every day, but the world is not all doom and gloom! I am stronger due to my condition, and I am more confident and more willing than ever to help those around me that may be suffering mentally.
The sensitivities of life are much easier to deal with when you know there are others around you who are also struggling, and others you can help. The sense of community that is built in the medical world is heart-warming and wholesome and I don’t know where I would be today if it were not for medical professionals and others who suffer as I have.
I wish with everything I have in me that I didn’t have anything wrong with me like this, because life would be bliss. But I know I’m lucky to still be here.
For more information about Alice in Wonderland syndrome, contact The Brain Charity.
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