A woman who lives her life in “agony” has shared how a seemingly common condition is ruining her life.
Rhianna Rahman has spent the last 14 years suffering from stroke-like symptoms, including slurred speech, losing her vision, dizziness and numbness.
Unlike most people her age, the 25-year-old can’t go dating or partying, and even struggles to make it to work due to being in extreme pain daily.
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Rhianna, from Huddersfield, West Yorkshire, spends every day trying to get through to the next.
It took her over a decade to get a diagnosis and she has no idea when this nightmare will end.
“I have a painful headache every day,” Rhianna, who works in health and social care, told Need To Know.
“If it progresses, then I can’t get out of bed.
“I lose my vision completely and my jaw can lock – preventing me from talking, and can even get slurred speech.
“I get very frustrated with myself as there is nothing that helps.
“I can’t have one day or one moment where I can do an activity without pain.
“It’s become my ‘normal’ now to be in agony.”
Rhianna was just 11 years old when the pain first showed up.
She said: “I first began to get headaches while I was in my last year of primary school.
“It did not progress into migraines until I reached high school.
“Then, I experienced my first severe migraine attack and since I cannot remember a day where I haven’t had a headache or migraine.”
Over the years, Rhianna has seen countless doctors to get an explanation for her pain.
She said: “I went to the doctors every time the headaches got worse.
“I would tell them I have stroke-like symptoms and I still didn’t get a diagnosis.
“It got to the point where I was so frustrated that the medication, the MRIs and CT scans were not solving anything that I stopped going to the doctors and began my own research.
“I made lifestyle changes that are still implemented to this day.
“I don’t have caffeine or chocolate (which can contain caffeine) and mostly consume soy and dairy-free products.”
Despite the young woman’s own remedies, the pain got worse.
She said: “I went back to my GP and during this time I was placed on many different types of tablets that did not help one bit.
“After trying everything they could prescribe I was referred to the migraine clinic run by the NHS, where I was to be tested to see what type of migraines I get.
“While at the clinic I was placed on two medications.
“However, they started to not work as well as they did in the beginning.
“So my GP began the process of a referral to neurology.
“This referral took over a year.”
Over a decade after her symptoms began, at the age of 23, Rhianna was given a diagnosis: Chronic Migraine Syndrome.
But it is little comfort as there is not much to be done to tackle her pain or the root cause.
She said: “I lose vision in both eyes, I get numbness and a pins and needle type feeling in the left side of my face.
“Sometimes, I vomit.
“I am very sensitive to light and sound, I have no appetite and I feel very sickly all the time – the smell of food makes me feel nauseous.
“I have now been referred back to neurology and I am awaiting another appointment.”
The harrowing journey has made the 25-year-old feel frustrated and has also impacted her mental health.
She added: “Even to this day it affects me but no one understands what it takes for me to go through my day.
“I get depressed and become angry.
“All I want is one day or even one hour where I have no pain.”
For now, Rhianna is waiting for her neurology appointment and coping as best she can.
