Lisa has had a difficult journey and is still trying to access treatment that could improve her health.
The evil twin of chickenpox
It was January 2017 and I had a five year plan for the future. I was 40, my kids were coming up to 17 and 18 and I wanted to make sure I had things to do when they eventually left home. I was really happy, in a really good place. I had just started studying for an MA, working with people with disabilities is my passion. I was also planning on taking my driving test.
Mid-January I noticed some marks on my neck but I didn’t think anything of them. My doctor gave me a low dose of antivirals as a precaution in case it was shingles. Two weeks later I noticed my lips were tingling. Three hours after that I looked in the mirror and saw my face had dropped, I thought I had had a stroke. I was rushed into hospital and kept in the stroke unit for 48 hours. Then they said it’s just Bell’s palsy and sent me on my way, they did increase my antivirals and gave me steroids. I had lost the ability to talk, eat, drink and smile in just four hours. I had intense stabbing pain in my face. It was such a shock and I was very frightened.
When I got home things went from bad to worse because I developed psychosis, it was a side effect of the steroids. It’s important that people take them but I also think people should be warned about the possible side effects of the steroids so friends and family can keep a close eye on them.
Three weeks later I went back to my GP and said I was in agony still and not getting any better. We had a discussion and we looked at other things it could have been and he said its Ramsay Hunt syndrome, a complication of shingles. A neurologist agreed with this and then a neurosurgeon qualified it.
I was referred for physiotherapy in the first six weeks and the therapist told me I shouldn’t expect to make any more than 10% recovery. I came home, ran the bath and just knelt in it. I thought I could either kill myself or try and pull myself together and try and carry on. I’m a strong person, I’ve gone through the death of my parents and siblings. I don’t want to complain about the NHS but a health professional should have been more careful. More education is needed as to how facial paralysis affects people. The same physiotherapist gave me an electrical stimulator machine to help with my recovery. I was using it two hours per day for four weeks. I’ve now got quite bad synkinesis and I since found out these machines can make this worse. My eye does close for sleep now but I still can’t blink it. Because of the synkinesis my eye closes every time I try to smile now which affects my vision.
Emotionally I hid away for five months. I wouldn’t let anyone come round who hadn’t already seen me. I feel like I walk everywhere now looking like I’m miserable as I can no longer smile the way I could. My nose has partially collapsed which makes my resting face look like a smirk. When people said things to me in the street about my one-eyed look I wanted to swear at them but when you are having trouble saying your b’s and f’s because your mouth doesn’t work properly you can’t even do that! Having to go out for a meal I have to study the menu because I don’t know whether I can bite it or chew it. I feel quite neglected. With more well-known illnesses I would have had a local support group. With this, I’ve not met anyone else who has suffered, it’s a very lonely condition. My friends can try and empathise but they will never understand the same as those who live with this condition.
My GP has really looked after me, he just doesn’t know where to refer me to for more help. I am under two neurologists in different hospitals, one said Botox injections might help me with the pain but it’s not routinely funded in my local area. As I am not automatically entitled to this treatment via the NHS a specialist will have to apply for special funding which will take time and even then not everyone gets it. It is a postcode lottery as other people in different parts of the country (even in the same county as me) with the same symptoms don’t have to jump through these hoops. The last time I saw the other neurologist he told me I was healing brilliantly and next time I see you, you’ll be better. He had no real understanding of the condition.
I had to take eight months off work so this has had financial implications. I am an academic support worker supporting people with disabilities. I now work part-time from 9:30 – 2:30 when I can. If I do a full day I have to come home and go straight to bed. I had to give up another job I had worked hard to get. I am better at empathising now with people I work with because of what I’ve gone through with this. My GP said I need to think about reducing my hours or giving up work but I’m battling on. I didn’t work so hard to get a degree just to give up. I have had to give up studying for my MA as I can’t look at the laptop screen for too long, it’s too bright. I struggle with any bright lights because my eye is extremely sensitive now after it having been stuck open for so long. Fluorescent lighting triggers migraines brought on by the condition. My posture is bad because of how I hold my face due to the pain I’m in and it hurts right down to my shoulder blades. I am in agony still but I am worried about becoming addicted to opiates so I’ve now decided not to take them.
I’ve had 16 infections since I had Ramsay Hunt syndrome. I am constantly in bed poorly because my immune system is so low. I have got another partner now but I wonder how long for because I am always ill. I have some good close friends but the rest fell by the wayside after Ramsay Hunt syndrome struck.
I try to not let illness define me but this has ruined my life. I destroyed all my open mouth smiling pictures of me one day when I was very low, this is the last one I could find. I feel like a different person now. Every day I have to prepare myself to go outside. If it wasn’t for my GP surgery and my Ramsay Hunt syndrome support group online I genuinely don’t think I would be here now. I’ve just been abandoned in terms of specialist follow-up support because there’s no proper treatment pathway for people recovering from facial palsy. I have had to become an advocate for my own health. I am having to tell my doctor what I think I need. People need to be aware of how serious shingles is and the importance of getting any marks or rashes checked out. I call it the ‘evil twin of chickenpox’. More awareness is urgently needed because the sooner people get the correct treatment the better their chance of recovery. This has destroyed my life.
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.
Last reviewed: 28-02-2018 || Next review due: 28-02-2021