10
Loading video...
By Rachael O'Connor
Reporter
0
Share
Newsweek is a Trust Project member
See more of our trusted coverage when you search.Prefer Newsweek on Googleto see more of our trusted coverage when you search.
A 28-year-old woman faces living the rest of her life with a painful nerve disorder—after trying to ease her anxiety with medication.
"I was prescribed sertraline to help with anxiety, something I was genuinely struggling with," Biyu, from Romania and now living in Spain, told Newsweek. "I never imagined that two months later I’d be dealing with a neurological movement disorder that would fundamentally change my life."
From the first day Biyu started taking her 25 mg dose of sertraline—brand name Besitran, from drugmakers Viatris—in July of this year, she "noticed something unusual."
Read More on Life
First came what she described as "brain zaps," and quickly after, "random spasms in my neck and head," she told Newsweek.
After a month, when her dose had been increased to 50 mg, Biyu realized that her "head and neck were visibly pulling toward my left side, with my chin pointing upward."
"I was already struggling to bring my head back into a neutral position," Biyu recalled. "Whenever I tried to turn my head or look toward my right, I experienced noticeable spasms and had difficulty coordinating my eye movements with my head and neck."
This came with severe pain in her neck and shoulders, and episodes of vertigo, which affected her balance.
Nevertheless, Biyu kept taking her medication, until, after two months, the symptoms became so severe that she sought medical advice.
"That's when I received my first diagnosis of cervical dystonia," she said.
...
Cervical dystonia is a painful condition where the neck muscles involuntarily tighten or spasm, making the head twist to one side or pull forward or backward.
According to the Mayo Clinic, there is no cure, but treatments are available. For some people symptoms disappear for a while before returning.
A Viatris spokesperson told Newsweek that sertraline "has been used in clinical practice worldwide for several decades and is supported by extensive clinical experience, as well as robust post-marketing surveillance and pharmacovigilance data accumulated over many years of use," though added that "as with all medicines, sertraline may be associated with adverse reactions."
Viatris pointed Newsweek to a Spanish government website that lists common side effects of Besitran which notes that these can include involuntary muscle movement and spasms, as well as difficulty walking and standing.
They added: "We are committed to ensuring the appropriate communication of important safety information to healthcare professionals and patients, and guidance regarding appropriate and safe use of this medicine as noted in the Spanish Agency for Medicines and Health Products (AEMPS)."
Pfizer, which originally developed and marketed sertraline under the brand name Zoloft, names dystonia as a potential side effect of the drug, describing it in a report as a "rare" adverse reaction seen in between one in 1,000 to one in 10,000 people.
Biyu told Newsweek she had never heard of dystonia before this, and had "no idea that a neurological movement disorder could potentially develop as an adverse effect" of her taking her medication.
Her physician had said that she shouldn't experience any side effects with sertraline.
Medication has helped with pain management, though she still experiences severe pain episodes, and has been recommended to have Botox injections into the neck muscles multiple times a year "possibly for the rest of my life."
However, the injections are expensive and she says her health insurance provider is refusing to cover them, which is "incredibly frustrating."
Newsweek was unable to contact Biyu's insurance provider to verify this.
"I feel that there is a lack of awareness about the medical necessity of these injections, and that Botox is potentially being viewed as a cosmetic treatment rather than a necessary medical intervention for a neurological condition," she said.
...
As a musician and singer, Biyu says her life has been affected "tremendously" by her condition, and its impact on her ability to sing is "one of the most distressing aspects."
"Because of the abnormal positioning of my head and neck, I’ve been experiencing difficulties with breathing while singing, alongside neck rigidity and a sensation of suffocation."
The spasms are also very noticeable, which affects her confidence and has taken a significant emotional toll. Even general everyday activities have become more challenging.
She has been left "extremely traumatized" about suddenly losing "control over movements that you previously took for granted, while also having to navigate a condition that so few people understand."
At just 28, it's "changed the way I live my life," and she struggles with being independent and making plans for her future.
Biyu has shared her story online as she wants to make people more aware of the "potential risks" of taking a new medication, and to raise awareness of the condition she now lives with.
And since posting online about what happened to her, she has been shocked by the number of people telling her the same thing has happened to them.
"Reading their stories has made me realize just how important it is to have conversations about these potential adverse effects and raise awareness of conditions like dystonia," she said.
Biyu has made it clear that she is "not encouraging anyone to stop taking their prescribed medication or avoid seeking help for anxiety."
"However, I do believe patients deserve to be properly informed about potential side effects, including rare ones, so they can make informed decisions about their health."
Contact Newsweek editors on this story: Sirena Bergman and Tony Phillips.
View 0 Comments
Submit Correction
View Editorial & AI Guidelines