Ramsay Hunt

[Valerie59]

I have Ramsay Hunt Syndrome for 14 years. When first diagnosed my Doctor did not believe Steriods nor anti-vitals would be of any good. I waited for weeks to attend Hospital and longer to get Physiotherapy. I was in terrible pain. I could not touch the right side of my head, face and neck. I could not eat properly as I had no feeling in my tongue. My earache was really bad.

To cut a long story short, I take Amitriptalyne to help with the Postherpatic Neuralgia. I still have problems eating, facial paralysis and earache.

[Chantev]

Hi Valerie

Sorry to hear that you are having a bad time even though so many years have elapsed. I was in the same situation as you, I had RHS seven years ago. I was not satisfied with the dismissive attitude of the people who were meant to provide care for me. I got in touch with Facial Palsy UK who brought to my attention the John Radcliffe Bells Palsy Research Unit in Oxford. It is part of their Plastic Surgery department. Do look them up on the Internet, after doing my research, I made an appointment with my doctor and requested a referral. She was not aware of them as GP may not be up todate on specialised care. She was very supportive and referred me to them. I have just today returned from my initial consultation with the plastic surgery team, not that I envisaged surgery...but the consultation was very constructive and I will have an outpatient appt soon. I was so relieved that they were very sympathetic towards my condition even after such a long time. I don't know where you are based but it is worth giving them a shot or get in touch with Facial Palsy UK who will be able to put you in the right direction.

All the best and keep smiling, there is light at the end of the tunnel.

[Valerie59 in reply to Chantev]

Hi Chantev

I live in Central Scotland. When I asked my GP where I could get more information on RHS he said to me that all he could suggest was looking on the Internet.

I got in touch with someone in America and the treatment they had received was completely opposite to mine. They had been sent for brain scans, and had received different therapies. I asked my GP if I could be referred for a brain scan but he said that it was a waste of time and NHS resources.

because the right side of my tongue is numb I find it difficult to pronounce some words.

Glad to hear from people who know how I feel. Thanks for replying.

[Shell49]

Hi Valerie, I too had RHS just over 3 years ago. I am suffering the same problems as you. My life is one long struggle. The paralysis, which was complete with no movement whatsoever, has healed fairly well but the problems are what people can't see. I am in constant pain in my face, head and neck. My hearing has been damaged, my eye is constantly blurred, I dribble all the time and cannot chew properly. I can't bite even a piece if toast without pain. There are many other symptoms. I suffer from depression because of this. My gp while being sympathetic, seems unable to help. I take gabupentin for the pain but they don't help that much and the side effects are awful. I like you, would love advice from anyone who has had successful treatment. I suppose we can at least find support on here while waiting for a 'cure'.

[Valerie59 in reply to Shell49]

Hi Shell

It is really great to speak with someone who knows how I feel. I took Gabapentin for a few weeks but had to stop as I could not handle the side effects. I went back on to Amitriptalyne, I take 25mg every night.

I find that my facial paralysis is more noticeable when I am tired or stressed. I find it difficult to bite in something, anything in fact as I bite my bottom lip and don't feel anything. It is not until I see my lip is bleeding that I realise what i have done. Like you my hearing is not as good as it should be in my right ear, my eye runs so much it could look like I was crying.

My GP at the time was more interested in RHS being rare and he asked to take photographs, which I refused. He made me feel like some freak.

I am okay in the company of people I know but cannot cope in front of strangers as I feel as if they are staring at me.

Thanks so much for replying.

[Chantev]

Hi Valerie

I suggest you ask your doctor for a second opinion. Ask him if he has heard of the john Radcliffe Research Bells Palsy unit. You do not have to put up with his arrogance, you paid your NI contributions and you are entitled to the care in your time of need. It's bad enough to have to bear the sequels of RHS, then to have your self esteem sapped by your doctor. Print some of their research and findings, the Mri and scans may not be relevant in our case but therapy is crucial, some specialised facial therapy is what was recommended and also Botox injections to give my face some symmetry. Please persevere don't be fobbed off. Incidentally the JRR at Oxford University Bells Palsy unit was funded specially to address our plight as GP were not sensitive to our cause and did not understand our psychological state of mind. Do let us know how you get on, all my best wishes.