Story about Ramsay Hunt Syndrome .

Oh how quickly your life can change

Nov 30, 2015


I took my smile for granted for 48 years, now I no longer have it, I miss it so much.  On 18 July 2014 I was experiencing day 3 of an inner ear ache with radiating pain down my shoulder and behind my ear, I like a lot of people just thought it was an ear infection, oh how wrong I was.  I popped in to visit a client and he looked at me with a puzzled expression, when I asked why, he said "your eyes are blinking at different times"  I thought he was crazy so went back to my car and looked in the mirror, he was right.  I immediately drove to see my GP.  I entered the reception area and the receptionist got someone to see me straight away.  The doctor looked concerned, you have Bells Palsy she exclaimed, quite excitedly..she may as well have been speaking in a foreign language..I have what??? She waffled on, handed me some info she found via Doctor Google and said I should be better in a week, take some anti-virals and steriods and have a good life.  In shock I left, I was with her for 30 minutes and by that time my face was fully paralysed on the left handside.  I looked like a stroke patient.  Thats when the fun side of RHS began, no blink, drooling like a baby cutting teeth, slurred speech and dont even talk about the pain. So home to seek out some help from Dr Google to learn as much as I could.  After a couple of days of work - yes only two days, I still felt no better.  I rang my GP and she suggested seeing an ENT, so I booked the appointment, but had to wait 4 weeks.  He was useless and expensive and a waste of money (this illness is not covered under health insurance in NZ), so another 3 weeks and saw an eye specialist as I had develpoed an ulcer on my eye, this guy was great but once again spoke in a foriegn langugage..you have Ramsay Hunt Syndrome he declared...great another diagnosis that meant nothing - good news you cant get re-paralysed bad news you will never recover 100%. 

It has been 17 months and he was right that I am still not 100% but I am at least 80% better, I have had shingles 3 times since and have now had the vaccine.  Life is too short to sit there and feel sorry for yourself, yes I am human and I have had moments when I have cried and said why me..but this hasnt killed me and it wont.  I am special and I am strong and this is making me stronger. I love the support I get through facebook and the RHS community but cringe when I hear people saying they are going on disability and stopping work, that to me means RHS wins. I still have the odd day with vertigo, metalic tastes in my mouth, dry eye and popping or deafness in my ear, but hell the rest of me works just fine. My facial nerves are still non responsive and the couple that have come back are now re-wired wrong, which means my eye closes when I eat, drink or attempt a smile. I have botox to help with this.  I have gone from a saggy face to a tight face, a great big eye to a little eye, but at least I still have my face and eye. I cant smile, flare my nostrils or raise my eyebrow but life could be far worse. I am running everyday, back at the gym, eating healthy and living my life to the fullest - this was the wakeup call I needed to get my shit together and stop treating my body so badly.  You dont have to take this journey alone.

Thank you for taking the time to read my story and I would love to hear from you. Also happy to answer any questions you might have.  .  Hugs Kerry xxxxx

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4 comments
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Thank you Kerry for sharing this.  My sister got Ramsay Hunt 2 months ago and her life is so difficult.  Her vertigo is terrible and she has no taste.  How long was it before you saw an improvement?

Commented 8 years ago Betsy 20
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Hi Betsy I feel for her and you both.  It took 4 months until my vertigo settled and I am sure my exercise helped with a speedy recovery, I read about others who still have issues with vertigo years later.  My taste buds came back after 3-4 months, I drank everything through a straw, which was great for weight loss but not a lot else.  I tried to eat really spicy food but it really didnt make any difference, it will come back, she just has to be patient and celebrate every little change.  I tired accupunture but I think the only thing that has done is complicate my nerve regenration.  I know we all look for a quick fix, but honestly there isnt one and it can become very expensive.  Where are you from?  xxx Kerry

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Hi Kerry,

My mum has been diagnosed with RHS just recently. She was initially misdiagnosed but I wasn't happy with what she had been told so turned to Dr Google and found out myself what it was which was then confirmed by an ENT specialist. She has finished her courses of steroids and antiviral tablets. She has been on high doses of Lyrica and Tramadol. Her right side of her face is paralysed. She has incredible pain in her ear still but worst of all is the pain on her face!! Nothing is relieving the pain whatsoever and it is really starting to affect her mental wellbeing I'm afraid. It is very distressing seeing a loved one go through something so painful and disfiguring without being able to help!! I am offering her all my support and positivity but unfortunately everything I am reading does not sound too positive. I'm yet to read about anyone fully recovering. I don't have the heart to tell her as she is very emotional at the moment but I want to know how best to support her. I'm also wondering if there is any support groups on Facebook or elsewhere that we could get information and help from? 

Thank you for your time Kerry and I hope you're doing ok yourself and I hope to hear from you soon. 

Kind Regards, 

Nat 

Commented 6 years ago Nat 110
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Hi Nat.  Firstly thank you for being so supportive of your Mum, she is very lucky to have you.  My third year anniversary is this Tuesday.  No, I have not fully recovered, but the vertigo has now passed.  I would say I am 60%.  Since my original post I have developed synkinesis, so when I try to smile my eye closes.  Your mums face will go from droopy to very tight, then relax a little.  She may end up like most of us, with a smaller looking eye.  Yes, their is a Facebook group, they can however do more harm than good....lots of stories and sometimes bad suggestions.  The pain will go, this just takes time.  As you can image 7000 damaged nerves, will be very painful.  I suggest she use a rice sock, or wheat bag and alternate with cold.  Massage to keep circulation going and do facial exercises (you find these on you tube). You do the same exercises for Bell's palsy.  I wish I had done the exercises, but didn't as the Facebook group said "do nothing" but rest.  Arnica is good for pain and is natural.  Nice warm bath and tell her to submerge her face....heaven.  Let her cry and be sad and don't say - you will be fine!  Probably the best thing I was told was I would never be 1000% again....that was bloody hard to hear, but got my head in the right place.  I still have crap days and avoid photos, but heck, this is the new normal.  Please feel free to ask me anything.  Sending hugs to you both.  Kerry xxxxx

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