'I feel like I'm drowning': Bride-to-be is desperate to cure her rare condition and get married

"I feel like I'm drowning" is usually said when you've got too much admin to do. But for Kaiva Locmele, 30, it's the absolute truth.

She suffers from a medical condition known as craniocervical instability, which regularly causes the sensation of lack of oxygen to the brain.

It became so bad that Locmele cancelled her long planned wedding to her driver fiancé Arthur Picacelma, 35, because she was too ill to walk down the aisle.

Locmele's alarming symptoms include dizziness and vertigo, passing out and fluid on the brain.

Craniocervical instability involves excessive movement between the skull and the two top vertebrae, which can injure the spinal cord, brain stem, vertebral artery or vagus nerve.

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Locmele, of Peterborough, Cambridgeshire, whose condition means she can no longer work, said: “The most upsetting thing of all was not being able to marry the love of my life. We had planned to tie the knot in June 2020, but by the February, my condition had deteriorated and I just wasn’t well enough."

The couple had planned to marry in Latvia, but a new date has not yet been set, as they are throwing all their efforts into fundraising for a 'miracle cure' at the Caring Medical facility in Florida.

“It’s heartbreaking," said Locmele. "While I’m trying to stay positive, my condition means I can barely move.”

Having been a lifelong sufferer of dizziness, by April 2011 Locmele's symptoms had worsened to include fatigue and severe vertigo, but doctors were baffled.

“I had no energy and was exhausted. I went to the doctors who said I was stressed and overworked," said Locmele.

“I had a physically tough job as an Amazon packer. But despite some time off, I still felt the same. All my test results were normal. So doctors felt it was psychological and that I was depressed.”

But she says, “I didn’t feel unhappy, but with no other explanation, I quit my job at Amazon and worked hard to improve my mental health.”

She met Picacelma via mutual friends in 2013, and in 2014 he proposed on a romantic walk by Rutland Water, a picturesque reservoir in the East Midlands.

Sadly, Locmele's condition was now affecting her life permanently. “I went back and forth to the doctors, but they couldn’t find anything wrong."

Yet she was sure the doctor's mental health diagnosis was wrong.

“Arthur and I got engaged in 2014 and I loved our life," she said. "Everything was great, we had good friends and would have so much fun. I couldn’t work out how I was being told I was depressed when my symptoms felt so physical.

"By 2018, my airways would feel blocked with liquid, it felt like I was drowning. Some days I could barely lift my head. I was constantly dizzy.”

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Desperate to find a solution, Locmele took up meditation and changed jobs multiple times.

“I tried my best to get better, as I wanted to be healthy," she said. "I even walked the Camino de Santiago trail (the pilgrims' way in Spain). I walked for six weeks, it was really hard, but I thought that I was going to find myself and feel better. Sadly, though, nothing changed."

Locmele started a new job as a payroll clerk two years ago, but though she loved her work, "the hour long commute triggered my condition. I started passing out in the car. It was really scary, there were a lot of near accidents. So, after three months, I had to leave.”

Further scans in October 2019 found a build up of fluid on her brain – putting paid to her wedding plans.

"It was so bad I couldn’t work and was completely bedridden,” she said. “That’s when I had an MRI scan showing I had cerebrospinal fluid build up in the cavities of my brain.

"But despite draining the fluid and numerous medications, my condition didn’t improve and I rapidly started to become more unwell.

“I started to get brain fog on top of my other symptoms. I couldn’t remember something straight after I’d read it. My head would become too heavy and I wouldn’t be able to hold it up.

"I became too scared to be on my own outside in case I fainted and I had to wear sunglasses all day every day, as the brightness would physically hurt.”

In February 2020, jut before the pandemic struck, the couple made the decision to postpone their June wedding in Latvia.

“The pandemic and my condition just made it impossible. I could barely shower on my own let alone walk done the aisle," said Locmele. "I tried to focus on getting better, but the medication I was given no longer worked and I stopped taking my pills.”

Feeling hopeless, Locmele turned to online communities for advice, and came across Caring Medical in Florida, a specialist clinic treating joint conditions.

After an online consultation with a specialist, she was diagnosed with Craniocervical Instability, causing a vertebra in her spine to obstruct fluid moving from the brain, as well as causing pressure on the surrounding nerves.

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“It was amazing to finally have answers,” she said. "I started looking online at my symptoms and contacted this American clinician who specialises in treating this condition.

"I talked through my symptoms and she agreed that I probably had Craniocervical Instability, but wanted to confirm the diagnosis once I came to the clinic in Florida.”

Offered a space this month for 12 weeks of treatment, Locmele finally has hope that she can be cured.

"My treatment plan will change once they’ve worked out which vertebra is blocking my blood flow, and I’ll probably have prolotherapy, an injection into the joints, combined with a chiropractic neck curve – a specially designed pillow that supports the joints in the neck.”

“It felt so good to have some answers, but we discovered the treatment would cost £40,000 - it was a huge price tag.

"I can’t get this treatment anywhere else, so we have no choice but to raise the money.”

Locmele, Picacelma and their friends and families have launched an appeal to raise the funds she needs to fly to Florida and get better.

"I just hope to go back to the life we lived before I became really ill." she said.

“I can’t shower or even go for a walk on my own anymore. I need someone with me 24/7. If it wasn’t for Arthur and my family I’d be completely lost.

“But I’m still full of hope that I’ll get better and I can’t wait to walk down the aisle and finally marry the love of my life.”

Go to: https://uk.gofundme.com/f/lets-bring-Kaivas-life-back

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