Mum with mystery illness leaves doctors baffled as she's a prisoner in her own body

Just two years ago, Nada Gumati, better known to pals as Endaywa, was an active mum, busy jetting off on holidays while pursuing a rewarding career as a social worker.

Now, the 37-year-old spends her days in agony within the same four walls, unable to even pass the time by watching television due to the unbearable pressure on her eyes.

The mum-of-one suffers pain so excruciating that she often believes she will die. She spends most of her time bedbound, mostly unable to stand, as this only triggers further suffering.

The only relief Endaywa finds is lying completely flat on her back, with ice packs pressed all around her head. Her condition is chronic, with symptoms including a constant burning headache, stabbing pains in her chest, and even seizures.

Despite all this, Endaywa has yet to be given a diagnosis, as the testing she so desperately requires isn't currently available on the NHS. For now, she's hanging onto that "one per cent hope" that she'll one day return to her old self.

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Single mum Endaywa's problems began just over 18 months ago, after returning from her now nine-year-old son's school fair, where they'd "had a lovely time".

Then, while preparing some food, Endaywa's life changed in an instant. Speaking with the Mirror, Endaywa, from Chester, recalled: "I just turned my neck and head quickly to plate up, and then I just felt like something had almost penetrated through the side of my brain and through my chest at the same time.

"My right leg went completely numb, and just everything started to go dark, and it was me and my son in the house, and I just really thought that was it. I just didn't think I'd come out of that."

Managing to grab onto the sink, Endaywa called her dad and was able to get a small bag together before being rushed to A&E. Unfortunately, getting to the bottom of exactly what was wrong with her would prove to be infuriating.

After carrying out a brain scan, doctors concluded that "everything looked fine", but Endaywa was all too aware this wasn't the case. She shared: "I was like this doesn't feel fine, just my autonomic nervous system shut down.

"I couldn't control my body temperature or my heart rate. Just everything stopped working. They said, 'something neurological is going on, but we don't know what'."

Ten days after the head turn that changed everything, Endaywa was scheduled to see a neurologist, and initially, she felt confident they could figure out exactly what had happened.

Following this appointment, Endaywa was diagnosed with a cluster migraine, a type of severe, painful headache that can last for a lengthy period of time.

Although Endaywa didn't feel this diagnosis fit with her symptoms, she initially accepted it as she was "struggling to just breathe" through the intense pain.

She began treatment, but a year went by, and Endaywa's doubts that this was a migraine she was suffering from only increased. Endaywa said: "The first six months were really difficult. I had to eat lying down. I just couldn't be up anymore. And then just this pain. which is still with me today. It just never goes away, only when I'm lying completely flat or asleep."

Then the seizures began. Endaywa said: "I'd have these drop attacks where I'd just be sitting there eating, and I'd just get this feeling and I'd go into a seizure and A&E. I kept going back.

"I think in the space of two months, I must have gone six or seven times, and then I felt like I was getting a bit of a name for myself, not in a good way, but this is not normal for me. I was working, I was doing everything before, and I suddenly just can't do those things."

Desperately wanting her old life back, Endaywa took "every single migraine medication there is on the market", from nerve block injections to tablets. Nothing has banished her symptoms. She did, however, notice that her "one trigger is standing up in the morning".

During her search for answers, Endaywa has had to deal with obstacles at every turn. As she used to work in a hospital environment, she has an articulate way of expressing herself, which has led some to conclude that she must be well enough.

She's also had to deal with medics attributing her illness to "stress" or "health anxiety", as well as plenty of "gaslighting and dismissal". In the condition she's in, it's become harder and harder to keep advocating for herself when she's been consistently pushed back to "square one".

In Endaywa's words: "I really wouldn't want to wish a mystery illness on anyone."

All while fighting for a diagnosis, Endaywa's once full life has altered beyond measure. Unable to look after herself and her young son alone, she's moved in with family, and looks back wistfully on ordinary moments she would never have thought were special back when she had her health.

Even heading out to the shops, for a walk, or taking her son swimming are now beyond what she could manage. She spends around 90 per cent of her time lying down, only standing up to eat, go to the bathroom, and attend appointments.

She looks forward to nighttime, as even a broken night's sleep offers a little relief.

Sadly, Endaywa is filled with "mum guilt" as she's seen the effect her struggles have had on her child. The little boy who, heartbreakingly, has previously asked her whether she will die, feels so anxious that he doesn't want to leave her side to go to school.

After school, he will come and lie beside his mother, who feels as though she's watching "his life kind of waste away". At just nine years old, the child has already lost trust in doctors, frustrated that, after nearly two years, his mother appears no closer to healing.

However, there is still a ray of hope. In February of this year, Endaywa finally had a breakthrough after reaching out to a London-based migraine charity, where experts advised that she might have something known as a spinal leak.

This is a condition whereby Cerebrospinal fluid (CSF), which protects the brain and spinal cord from injury, leaks out somewhere along the spinal column, resulting in symptoms such as headaches, which are only alleviated once the sufferer is lying down.

Spinal leaks can be treated through surgery and other methods, but first, Endaywa needs a diagnosis. As the NHS won't authorise the imaging required, she's decided to go private, setting up a GoFundMe page to raise the £2,600 she needs.

At the time of writing, Endaywa has raised just over half the funds needed, signifying an important step towards the "closure" she so desperately seeks.

Expressing her hopes for the future, Endaywa, who has ten years' worth of experience in the field of social work, hopes to one day be well enough to help others navigate similar situations, knowing full well what a "dark and lonely" place it can be.

She continued: "I just can't wait for that moment for them to say, 'We know what's wrong'. That's my biggest dream. And then to make up for lost time and to cut these [gestures to ice packs] in half and throw them away and never have to wear ice on my head again."

You can donate to Endaywa's GoFundMe page here.

Do you have a story to share? Email me at julia.banim@reachplc.com

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