My experience of Ramsay Hunt Syndrome & Postherpetic Neuralgia...

[Elly88]

Hi all!

I thought I'd share my experience...with the hope that I can help in some way and also get some advice!

So last year, on 19th November, I moved to Perth, Australia (on a 12 month Working Holiday visa). As soon as I landed I felt very dizzy but thought it was probably because of the flight (I get motion sickness so assumed it was the usual sickness).

A day later I noticed I had a "spot" in my ear, quite red and sore. A few days later I had a pain from my ear down to my throat and chest, nothing too bad so I thought nothing of it. The next day, on 26th November, I woke up with the right side of my face completely paralysed; I felt nothing on that side and couldn't move the right side at all either. Something I'm sure most of you can relate to.

We (I moved to Perth with my boyfriend) went to a local GP who told me I had a facial palsy (I thought that was quite obvious) and prescribed me with antivirals and steroids. Later that same day, I started to feel more pain and my face got droopier and droopier. I called a 24hour medical helpline and after describing my symptoms, an ambulance was called for me. At the hospital, the doctor told me I had Bell's Palsy and told me to patch my eye shut at night and use eye drops during the day time (I can't blink or close my eye).

Over the next few days later, the pain got worse...and worse....and worse. I've never felt anything like it. I went back to hospital a few times and visited various GPs and specialists and nobody could tell me what I had or what was going on so I kept being given more and more painkillers for the pain.

The cocktail of strong medication eventually resulted in hallucination, aggressive muscle spasms and a severe seizure. I ended up being admitted to hospital because of the seizure. Doctors concluded it was the medication that caused it and after numerous tests (including a lumbar puncture which had complications) I was told that I actually have Ramsay Hunt Syndrome with Postherpetic Neuralgia.

The nerve pain has actually improved quite a bit after the seizure, there is still some pain and its sensitive to touch etc but I'm not in agony anymore which is amazing. I am only taking 1 medication now; as the seizure somehow helped with the pain I can tolerate the pain I have now with only 1 medication for nerve pain.

I have also been seeing a speech therapist on a daily basis for approximately 5 weeks now, its been very helpful and I would recommend it to anyone with facial palsy. I've learnt exercises and massages that I do daily which have really helped; I can now (almost 3 months on) see very small movements on the affected side, which is brilliant. Before seeing a speech therapist I didn't even know how to try and move my face again!

I recently also started doing Bowen Therapy which has helped me relax (I'm quite tense after all the above) and has also helped some with the pain.

Its tough being away from home at a time like this, its also slow and frustrating (I'm sure most of you will agree) but I'm trying to stay positive and stress free. From what I've read and heard, it will get better. And I can't bloody wait!

So that's my (long!) story, if anyone has any questions or advice please get in touch, I'd love to hear from you and really want to be an active member of this community.

Elly

[Chantev]

Hi Elly

So sorry that you are having a tough time and being so far away from home is no consolation. I sympathise with you as I have had a similar experience with RHS and neuralgia too. Yes I have tried the catalogue of treatments such as acupuncture, therapy, facial simulator and healing....etc. I have had Botox and it has restored some sort of symmetry to my lopsided face. Do look into it I was prescribed it upon my visit to the eye clinic. It did help to restore my self confidence. I did not feel like a freak....The massages help a lot and I still have them, I bought a little gadget home medics and it has been a tremendous help.

Are you referred to an eye clinic you did not mention it? Please do look into it if you have eye issues, my left eye is smaller than my right one, and it closes when I eat. I did not have any surgery as I was not ready to have weights or anything else inserted into my eye. I am coping with it with the best of my abilities.

Not everyone is the same so don't get dishearten if some are recovering quicker than others. I have learned to be patient which was difficult as am impatient by nature. Like you I am far away from home, but have a wonderful sister who took time off to come and nurse me while husband was away.

Hope you have managed to get some support locally, Australians are known to be kind and supportive in crisis. Keep your chin up, there is light at the end of the tunnel, best wishes.

Chantev

[Elly88 in reply to Chantev]

Hi Chantev,

Thanks for your lovely message. And sorry for the late response on my side! I haven't been on here for a while, it has been a busy couple of months. I have actually ended up returning to London and moving back in with my mum for a while.

I wish I'd done it sooner. The support from family and friends has been amazing and has done me a world of good. It has really helped with my mental state.

I have been referred to an eye specialist but still waiting to see one. My doctor recommended the weights as well, but like you I was just not ready to do that to my eye. You mentioned your eye closing when you eat, is that from synkinesis? I hear that can be very difficult. I'm sorry if this is the case.

I was given facial exercises to do daily, it has really helped. My face has been recovering well, I have been very lucky. It is very painful though, when I move or touch my face it hurts and feels very tight still. Is this something you experience at all?

Where are you based? Sorry to hear you're far away from family too, it does makes things harder. Really nice of your sister to come to you. I hope it has helped your recovery? I hope since you wrote that you're feeling at least a little better.

It is hard to remain positive but it will get better. With time it will all heal and you'll be stronger from the experience. I have been doing Mindfulness meditation exercises and it has really helped me deal with it all. I would highly recommend it.

All the best,

Endrielly