I feared I would never get my smile back when I was dealing with Bell's Palsy

[Colin Howard]

From: tonyms...@gmail.com
Sent: Tuesday, July 9, 2024 7:11 AM


I feared I would never get my smile back when I was dealing with
Bell's Palsy
Bell's Palsy is characterised by sudden facial paralysis and can also
cause sight problems, leaving sufferers grasping for answers and
support, writes Sasha Hamrogue
Sasha Hamrogue


Back in March I'd been eagerly awaiting a much needed break with my kids
over midterm. Following a stressful period at work and back to back
household viruses, I was excited about some healthy rest at home with my
family.
But on March 23, the first official day of my holidays, I started to
experience an unusual pain in the back of my head on the left side,
which radiated down my neck. I put it down to possible dehydration and
being rundown. But the pain worsened.
By Tuesday I knew what I was experiencing wasn't a headache, but
potentially something more sinister as the pain was becoming more
challenging. While at a playdate with my kids I felt a sudden onset of
numbness in my mouth.
I panicked. My first thought was that I was having a stroke and from one
look in the mirror it was clear that I was experiencing facial
paralysis. I rushed myself to the nearest hospital. One thought raced
through my mind...I better tell my husband where I hid the kid's Easter
eggs in case I don't make it home.
Due to the possibility of stroke, I was quickly seen in A&E with
multiple medical professionals diagnosing me with a condition called
Bell's Palsy, which they described as a relatively mild condition that
causes facial paralysis on one side and that it could be treated with
anti-viral medication and steroids.
The doctor suggested some rest as Bell's Palsy can be brought on by a
virus or stress and sent me on my way with a script.
Grateful to be home, I felt pretty good, aside from the fact that half
my face didn't work. The paralysis worsened in the first few days, but
my kids gave me lots of "kisses for my funny face." I tried to keep my
fears of any permanent facial changes at bay. The most difficult part
was my eye on the affected side not closing, which needed to be
carefully looked after with regular eyedrops and taping the lid shut at
night.
At this point, I found sites like FacialPalsy. org.uk extremely helpful.
Sudden onset Facial Palsy UK founder Mr. Charles Nduka explains what the
condition is, saying: "Bell's Palsy is the name of a condition that
presents with a sudden onset of paralysis, typically of one side of the
face. The classic history is a patient developing this within the space
of 24 hours.
"Quite often, they wake up with the condition and they will be unable to
move all of the muscles on one side of their face, including the forehead.
"In terms of the cause of Bell's Palsy, it's not exactly clear what
causes it, but it's almost certainly viral in origin. When we look into
the history of patients with Bell's Palsy, very often they have a
preceding history of either stress or physical illness in the days
leading up to it.
"It's thought that the herpes virus may be responsible but other
infections can cause facial paralysis. It's also known that some
patients who are diagnosed with Bell's palsy actually have a form of
nerve inflammation due to the chickenpox virus."
Charles says that recovery rates are high for Bell's palsy:
"Fortunately, more than two -thirds of patients make a complete recovery
without significant intervention other than oral steroid tablets within
72 hours... It is important that patients so not try to force their
expressions. The recovery will happen spontaneously over the course of a
few weeks or months.
"If the patient has full recovery within four weeks, then typically they
will have little or no aftereffects. The Facial Palsy UK website has
comprehensive information about what to do in the early stages and how
to avoid complications."
It came as a surprise to me that after I finished the prescribed
steroids and antivirals that the pain in my head returned with a
vengeance. Desperate for answers, I committed the cardinal sin. I Googled.
I went even deeper and trawled through Reddit and joined Facebook
support groups to see if anyone else experienced pain during their
recovery. What I found was a much more nuanced experience than what I'd
been told that first day in A&E.
Many people shared about the significant pain they too had in the weeks
and months following onset and I was most definitely in that camp. I
couldn't sleep or rest as the pain was so acute throughout my head. I
couldn't work or look after myself or my kids. My husband had to fully
take the wheel of our lives to keep the show on the road.
I repeatedly visited my GP who was baffled as to the course of my
condition but worked with me to try and find pain relief. During this
time I tried everything, including acupuncture, which came highly
recommended in the Bell's community.
I was treated by Michael Kindregan, owner of Zing True Health Clinic in
Kildare Town, and he explains the benefits of acupuncture for Bell's
Palsy: "Bell's Palsy is generally found in people who have a lower
compromised immune system. Stress management is a critical component to
address with Bell's Palsy and improving immune function.
"When the body is in a high stress state it cannot heal, therefore the
most important factor we need to consider is how we can reduce overall
stress load on the body during the clients daily activities. So my
priority is to reduce stress load on the body while at the same time
reducing inflammation through acupuncture, breathwork, diet, and
lifestyle. If stress remains high it is very difficult for the body to
heal."
Michael says a holistic approach to healing should include nutrition:
"When there is a high stress load/potential viral/bacterial insult on
the body it is important to reduce all processed foods coming into the
body to dampen inflammation, and to increase whole foods so we can
increase the nutrients entering the body, especially amino acids,
healthy fats, B vitamins, zinc and iodine."
I tried to keep stress at bay, but it was easier said than done. And
after weeks of pain, I noticed my vision started to change and one day
while driving my kids to school, I began to see double. By Monday I was
admitted to hospital and spent a week there trying to get to the bottom
of what was going on.
Thankfully, I had lots of testing, including an MRI, which revealed
nothing serious, but did show signs of mastoiditis, an infection in the
bone behind the ear. I was treated with antibiotics and saw an eye
specialist who fitted special prisms for my glasses which helped me
drive and do my daily tasks.
What surprised me most along the way was how unfamiliar medical
professionals found my seemingly atypical case, but the community I met
online had so many similar experiences to my own. It was through their
posts and comments that I was able to make suggestions to my doctors
about what might be going on and how to treat it.
I felt exhausted having to advocate for myself so much while sick and I
was hesitant to make suggestions to highly trained people within the
medical field. I am grateful for those who had documented their journey
– like Amy Green, a 41-year-old woman living in Leeds in the UK.
Amy was diagnosed seven years ago and told me what surprised her most:
"How little is known about the condition. The condition largely does
heal itself over time but that doesn't mean during that time you can't
get extra support.
"Because support isn't freely offered you can often feel quite alone and
afraid. I was also surprised at the effect it has on other areas of your
body. A lot of people with Facial Palsy find they are deficient in
certain vitamins, as well as having issues with their hair, nails etc.
The fatigue is also something you can't be prepared for."
Paul Shelbourne, a 64-year-old man from Cheshire in the UK, also felt
alone in his diagnosis in January: "The lack of support and knowledge of
Bell's Palsy recovery requirements from doctors surprised me. They send
you home with steroids and tell you to get on with it – that is not good
enough.
"My recovery was as a result of my own efforts identifying other things
to help my recovery, in parallel with anything the steroids may have
done to reduce nerve inflammation."
That sense of loneliness was amplified when loved ones tried to connect,
Paul adds. "Family and friends try to offer empathy, and I know they
mean well, but sometimes it can come across as patronising when you are
usually avoiding looking in mirrors because you look like Quasimodo.
"Bell's Palsy damages not just your facial features but your self
confidence and it is psychologically damaging to be left to get on with
it on your own with no-one to talk to." Psychological support Paul goes
on to suggest therapy as part of the recovery plan: "When I read about
other long term sufferers of Bell's Palsy, I realise I was lucky, but I
put things in place myself to assist my recovery as best I can. This
support, both physical, to aid facial recovery, and psychological,
should come from your doctor and maybe through counselling. It
definitely should not be left to patients to deal with the complexities
of Bell's Palsy for themselves."
Amy agrees: "I would love to see health professionals have some
resources available. Be that a leaflet, or they refer to amazing
charities like
Facial Palsy UK. Having that support is so important. Family and friends
are great – but there's no substitute for lived experience."
Like Amy and Paul, I too struggled with my mental health throughout the
process of recovery. I was fearful that I would never get my smile back
and that I would have pain forever. I felt embarrassed speaking at
meetings and laughing with friends.
My hardest moment was when my vision was impacted and I panicked that I
may no longer be able to drive. I was lost and alone in my search for
answers. Like Paul, I felt a disconnect from well meaning family and
friends. I wished I'd had more support, which is why I am writing this.
So that others who may be in the middle of a Bell's Palsy diagnosis
might feel validated.
It has been three months since onset and I am so happy to say that I am
now about 95pc recovered. Aside from a feeling of slight tension around
my mouth, especially when I am tired in the evenings, I feel back to
myself. I feel a new sense of gratitude for my health and am putting my
wellbeing at the top of my list.
The experience has given me a new perspective on how people with chronic
illness live and how important advocacy is for yourself and for your
loved ones.
'The condition largely does heal itself over time but that doesn't mean
during that time you can't get extra support. Because support isn't
freely offered you can often feel quite alone and afraid'
Irish Independent