My journey with Ramsay Hunt Syndrome and Facial Paralysis
The reason why I created this blog is to share with anyone who is down with Ramsay Hunt Syndrome or anyone who is interested in this very rare disease. Like I said that it's a rare disease, it's not very well known and I hope that by sharing my experience, I'll be able to help someone in need.
I had been having a "on-off" like of cough and sore throat since the middle of December 2013. I assumed that it would be one of those regular coughs, so I just brushed it off thinking it would go away by drinking more water etc. Towards the end of the year, I started to get more sick especially after I went swimming the other night. I woke up in the middle of the night with my left ear blocked and hurting slightly. So I thought that I might be having a ear infection and maybe the holiday feasting had gotten to me as well.
On the 1st of January 2014, my ear infection took a turn for the worse and it started to hurt more. I also had headaches and fevers too. My sore throat affected my eating as my mouth was too dry and I found it painful and difficult to swallow. Since it was New Years Day, I couldn't find a general practitioner till the next day. So on 2 Jan, my family doctor diagnosed me with ear infection, fever, cough and sore throat - the regular flu. After taking her medications, I still wasn't getting any better and had fevers the whole of that day and next.
On the 4th, I woke up feeling dizzy and could not keep my food down. I also noticed that the left side of my face was getting numb i.e. little signs of facial paralysis. My left tongue's taste buds were getting weak and I noticed that there were several painful small bumps growing around my ear. The hearing on my left ear was affected too, it felt as though the volume was at 50% as compared to my normal right ear. So I went to another general practitioner and he gave me a different set of viral infection medications and told me that my previous doctor did a misdiagnosis. He claimed that the ear infection caused the facial paralysis.
After 2 days, my fever. cough and sore throat went away and I found it easier to eat again. (no more nausea or dry mouth) But my ear infection and facial paralysis persisted. The small bumps around my ear were getting really painful to bear so I went to a ear specialist on the 8th of January.
It was only on the 8th, I found out that I had Ramsay Hunt Syndrome Type 2. The specialist told me that I was lucky because I came to him in time, any later might have caused permanent damages to my health. So he prescribed me with anti-viral medications and steroids (which are the correct medicines to tackle RHS). The specialist told me that I have 70% of full recover in 1 months time and I was to return 2 weeks later for a follow up. So I finally heaved a sigh of relief...
By then, my facial paralysis was affecting me a lot
1. I could not close my eye fully and blink normally which resulted in teary eye.
2. The left side of my mouth was very weak and it drooped which affected my speech and I sounded like I had a lisp. I could not drink and chew without things spilling out from the corners of my mouth.
3. And of course, I can't smile, laugh, frown properly.
Anyways, after 1 weeks of medication, my ear infection was almost gone and my hearing started to come back. The bumps which I found out were shingles, started to dry up and peel off. The left side of my face started to get better as I could wiggle the inner corners of my eyebrow.
After 2 weeks (22nd Jan), I had my follow-up and my hearing was fully recovered. My face didn't recover fully but my lips got stronger and I could talk without a lisp (although I had problems pronouncing certain words) and I could eat and drink without spilling or spitting by accident. The ear specialist told me that the next two weeks would be the "crunch time" that decides if my facial nerves would recover at all. He told me that I could try facial massages etc. I was devastated when I heard that because I am only 20 years old and I don't deem myself to be very good looking with high self-esteem. I started panicking.
Right from the start, the facial paralysis affected me a lot and I avoided going out (I was back home for winter holidays). My friends told me that I looked fine and that I looked better than before, telling me that my facial paralysis is getting better. Hence, after spending so much time feeling like shit and cooped up with my room, I decided to stay on a positive outlook and that I am going to get better. (Since I believe in the Laws of Attraction)
I started to read up online and found out about Bell's Palsy, a condition that is similar but more common as compared to RHS. I found out that people try acupuncture, craniosacral massage, exercises etc to improve the recovery process for facial paralysis. And of course, the downside of researching medical things online would lead to scary articles that scare the shit out of you. I learnt to ignore and not to take them seriously eventually.
I started to learn more about RHS from my cousin in med school, studying to be a physiologist. He told me that it is similar to the chicken pox disease and that the infection of my facial nerves (type 7 I think) caused the paralysis. Since I've fully recovered from my ear infection, my nerve infection should be going down or gone, so he told me that it's safe to start on an exercise routine to stimulate the facial nerves (sending signals out for more nerves to come in and eventually recover from the paralysis). I will put up a separate post for the facial exercises.
After 1 week of physiotherapy, I started to feel different parts of my face again. I don't really know how to explain the feeling but the closest thing would be sensations and tensions. Every now and then I would feel it throughout the day, especially after I do the facial exercises. Two days ago, I started to see a different in my eye as I am now able to shut the outer corners of my eye. And today, my eye is able to close almost fully (there's like a 1mm gap).
Despite all of the good signs and me being positive, there were moments or one of those days when I just can't help but worry about the uncertainty. I found out from this friend of mine who had Bell's Palsy when he was 3 years old (I think he is 19 this year) and he had electro-shock therapy on his face. He told me that I should consult a neurologist if I want to seek further medical help.
Today is the 10th of February, a month after I found out that I had RHS, I went to see a neurologist. He told me that RHS is a viral infection that directly attacks the nerves (type 7, 8, 9, 10). If I went to him straight instead of the ear specialist, he would have given me a jab, put me on IV drip and I would recover in a week's time. WTF. I know right. But what's done is done so... He made me do a few things such as walking in a straight line, blindfolded, backwards etc. And it turned out that only 2 types of my nerves (type 7 and 8) were affected and I have 80%++ to recover from facial paralysis by April. I am very lucky.
He told me that I should continue with physiotherapy on my face and to take vitamins (Methycobal and Super Bio Quinone) for my nerves. I am scheduled for a follow-up next Monday as he would use a certain computer equipment to check on the progress of my facial nerves.
I am positive that I am going to recover fully now and can finally sleep in peace now :")
I know that this is something that's difficult to cope with and it definitely affected me a lot. I've never been the type of person who would take health very seriously. I know health is important but I wouldn't make an extra effort to eat or live healthy. Something I read a while back really struck me "Just because you're not sick does not mean that you're healthy".
Looking in the mirror everyday and having to deal with a wonky eye is not cool at all especially when you're already having problems with drawing even eyeliner on both eyes lol.
So yeah, I hope my account has been helpful to anyone out there. If you have facial paralysis from RHS or Bell's Palsy, do not lose hope and go see a neurologist asap (especially for RHS). Don't try to do anything that might accidentally damage or over-stimulate your facial nerves. Seeing a neurologist would let you know the status of your facial nerves and that is extremely important before you want to try something like acupuncture.
I do not claim to be a medical expert on this, merely sharing my experience so do not hold me responsible for anything lol.
Do leave me any comments if you have anything you want to share. Thank you for taking the time to read this and I wish you good luck and all the best in health :)
