I had specific and unusual symptoms for 12 months before I was diagnosed with a brain tumour – and now I could go blind at any moment

Tahlia West was rejected time and time again by medical professionals when she complained about her series of painful symptoms.

She had chronic dizziness, fatigue, declining memory and an endless stream of migraines. Still, the best diagnosis doctors could make was a persistent ear infection.

But after nearly a year of going back and forth with specialists, Tahlia was finally diagnosed: A rare pituitary tumor called a Rathke Cleft Cyst was pressing on the base of her skull.

It is incurable, but she will be fine if the tumor does not grow. If so, there is nothing she can do about the resulting symptoms.

The 27-year-old therapist from Melbourne revealed that sometimes she is so extremely tired that she falls asleep in the middle of a task.

“I always feel a lot of pressure in my head,” Tahlia told FEMAIL. “It’s like someone wrapped rubber bands around my skull and they’re too tight.”

In the meantime of waiting for doctor appointments and test results, Tahlia’s symptoms only got worse.

“I suddenly had a very bad memory,” she said. “One day I would forget the most basic things, and the next day I would be fine.

‘I didn’t really think about it because there was always something else going on, like my migraines.

‘The pain is always most severe in the morning and late in the evening. It sometimes comes with hot and cold flashes and bouts of blurred vision that I couldn’t understand,” she explained.

Chronic dizziness, fatigue, declining memory and an endless stream of migraines – but the best diagnosis doctors could make was a persistent ear infection

Tahlia became very good at identifying her triggers and avoiding actions that she knew would cause pain attacks.

She believes her GP initially suspected her condition was an ear infection because she had sudden hearing loss on one side and a ‘wet’ feeling in her ear.

‘He said it caused all the other symptoms, so he sent me to a specialist, which took a few months.

‘But the specialist said there was nothing wrong with my ears and sent me away.’

The 27-year-old therapist from Melbourne (pictured left) revealed that she sometimes feels so extremely tired that she falls asleep in the middle of a task

Tahlia was particularly disturbed because she had suffered from ear infections all her life and knew her symptoms were a sign of something sinister.

“Why do they tell me there’s nothing wrong when I’m clearly feeling sick?” she remembered thinking.

Tahlia went back to her doctor, who now focused on solving the problem.

In the meantime of waiting for doctor appointments and test results, Tahlia’s symptoms only got worse

‘I really felt like he cared about me – we tested for a lot of things, including diabetes.

‘The light bulb moment came when I revealed that I couldn’t bend over without my head pounding.’

After being sent for an MRI, doctors found an intercranial mass in Tahlia’s head.

“I denied it for a while,” Tahlia admitted. ‘I didn’t want to believe it. Even when I told my partner about it, I tried to push it aside.

‘I think it finally started when I told my parents: that was the first time I was scared.

“Knowing that something was growing in my brain was so overwhelming and terrifying, and I hated that I had to wait a few months before I could see a neurosurgeon.”

She then had to undergo more scans, checks, eye exams, MRIs and blood tests.

‘After all that, the doctor said to me, “It’s there, I can do surgery, but right now the risks are greater than what’s going on now – it will make everything worse.”

Although Rathke cleft cysts are often asymptomatic, in rare cases patients have been known to present with problems with Tahlia and even lose their vision due to restricted oxygen flow to the occipital lobe.

‘I cried then and was scared because I didn’t understand a lot of it. I felt very alone. My condition is very rare and not many doctors know about it,” Tahlia added.

“It was very frustrating and they can’t give me treatment for it.”

But despite that, Tahlia chose to look at the situation positively and do the best she could with what she had.

She did a lot of online research about the condition and tried to find online support groups – only one of which was on Facebook.

‘Doctors can’t really do anything about it. I’ll just come back every three months for a scan so they can monitor the cyst.’

Tahlia said she was grateful for her family and friends who serve as her support system

Tahlia said she was grateful for her family and friends who serve as her support system.

“Everyone around me is so wonderful, I am truly blessed,” she said. ‘My parents, grandparents, partner, mother-in-law, someone always comes to my appointments.

‘If I’m having a particularly bad day, I know I can always close my eyes and my partner will take care of the house. It’s the little things that really matter.

‘My mother also helped me with the research into the tumor, and it’s really reassuring to know that one of them will be there to keep an eye on me when I’m sick.’

Despite the diagnosis, Tahlia is determined to keep her head up and look on the bright side.

‘I really don’t like feeling sorry for myself and I don’t want my condition to affect my life more than it has to. I still work and study full time, but I take days off when I need them.

‘Moreover, I live my life as normally as possible, even though I am in a lot of pain.’

Tahlia said her hobbies went a long way in keeping her mind healthy during difficult times.

She enjoys shopping, going out with her partner and going to the gym regularly.

Tahlia said her hobbies keep her sane during difficult times

Tahlia has done her best to look to the future and focus on her ten-year plan.

“I want kids and pets someday,” she said. ‘My partner and I really want to have children in the future. It’s very scary, but I don’t think it’s worse than normal someone without tumors would feel.’

She started sharing her story online and posting about her brain cysts on social media to raise awareness about the tumor.

‘I don’t want them to feel sorry for me, I want them to recognize when something is wrong and seek medical help. By sharing the warning signs, I have been able to create a community and make friends who are in the same boat as me.”

Several people have brought their symptoms to doctors and the diagnosis was made based on Tahlia’s posts and videos.

“Talking to people online and keeping them informed about my journey is how I deal with my illness,” she said.

Tahlia is currently taking part in a clinical trial for migraines in an attempt to manage her symptoms as she was taking Panadol and Neurofen every day.