Newly diagnosed

[Matt88]

I am an otherwise healthy 28 year old male. I was initially diagnosed with Bells Palsy last Sunday, to be re-diagnosed a few days later as Ramsey Hunt.

The staff at the hospital have been excellent but I still have some questions that hopefully people with first hand experience may be able to answer.

Do people cover their eye during the day?

What tape and method do people use at night to close their eye?

Can anyone share their progress/recovery from Ramsey Hunt? Because my diagnosis was outside of the 72hour time frame I was not prescribed anti virals, only steroids. I'm aware that this could slow down and reduce my recovery but I'm interested to hear of how other people progressed.

Any help and advise from anyone is greatly appreciated.

[Seeujimmy]

Hi, I had palsy after a brain tumour operation. I use two different lubricants, Lacri-Lube at night [it is thicker and I felt it tended to distort my vision when used during the day] and micro pore to keep the eye shut. Initially I thought what about my eyelashes - will it not pull them out or be sore when I take the tape off in the morning? [I am a man] It was not a problem - it was not sticky enough to cause a problem. During the day I do not wear an eyepatch, the advice I got was that it can increase the chances of infection. I use Carbomer Eye Gel a more liquid product and apply it several times during the day. I have used the same routine for five years. However I do recall finding what was right for me took a while so it would be worth experimenting. I also take more care in windy weather as dust can be difficult and extremes of temperature when I apply more lubricant. I wear sunglasses and a peaked cap in strong sunlight.

I also tried the electronic stimulator but found acupuncture more effective - applied by a neighbour, a Yorkshire man trained in China. I found it very effective and my face moved from no sensation to a feeling of numbness to a good recovery [no longer staring back at myself in the mirror]. In the case of the Chinese medicine it is important to believe in the process, which can be hard, another treatment was applying the heat from the tip of a cigar like object to massage the face [it did not touch] it is called moxibustion [spelling it is hard ] It sounds bizarre but it worked for me!

I never gave up - non of the plateau of recovery - it is like hill walking - reach a summit and invariably there is another to aim for. I think I am still recovering years later, it is just that the improvements get smaller and smaller, and you have to look harder to spot them. I got frustrated at the lack of progress and devised two of my own methods - which have no medical backing whatsoever, but I like them as at least I fell I am doing something not just waiting to get better. I gently slap my face in traffic jams [plenty in Edinburgh] I get odd looks from passengers on buses in the lane beside me, and I also do it at odd times during the day. In the morning lying in bed I try to blink a dozen or more times - I wonder if it is easier to attempt because gravity is effecting the eye lid in a different way? Keep smiling [the only time my palsy becomes more obvious] Norman

[Hidden]

Hi Matt88 - sorry to hear you've been diagnosed with RH. I got Bell's on New Year's Day this year, I was never prescribed anti-virals but got steroids (which I hated taking as they made me feel awful, however I do think they toned down the pain of the first couple of weeks).

I did cover my eye during the day unlike some folk. My eye went dry - no tears, and was VERY irritable, and I basically couldn't bear it unless I covered it. I used a big patch of gauze with a cotton pad in between, and then used a single eyepatch to hold it in place. I also used copious amounts of eye drops - Hylo Gel was great for it. Perversely I didn't need to tape my eyelid shut at night. I found I could close it and it would remain shut, which was a relief. I had to cover my eye for 2 months before the blink started to return and I was comfortable enough to leave the patch off, and yes, that is a long time, and wasn't much fun.

Other facial movement began returning after a couple of weeks, very slowly. I'd test every day to see if I could move various bits of my affected face! You've just got to be really patient. Even now I'm not fully recovered, 8 months on, but it's very hard to notice. I'd say I'm around 90% OK now. Progress is being made even though it's imperceptible.

My main advice is to protect your affected eye, whether that's by using plenty of eyedrops during the day, or taping it shut at night if you need to, or covering it in the daytime. It's precious! Also, don't worry too much about how long it's going to take to recover, just take one day at a time and you'll get there.

[25clai]

Hi, I too got initially diagnosed with Bells , only to told by a neurologist formally a few months it is Ramsey Hunt. I got shingles in my face and 4 days later, after excruciating pain in my ear, the RH started. I had already been prescribed antivirals for the shingles . I was prescribed steroids for the RH symptoms. At first I was fairly stoic about it, I felt so ill with Shingles, it didn't hit me until it seemed to get worse and worse.

The Dr I saw at my surgery re the sudden onset of paralysis told me to tape my eye at night and wear a patch during the day. However, he did not inform me how to do it or steer me to a relevant website for help. I found that Queen Victoria Hospital has a a load of stuff on utube on how to tape it down. It took me ages to get the right tape . I ended up with a sore eye. I suggest if you haven't got it, go and buy micropore tape off Amazon, it is good, easy to tear to sizes etc. use loads of eye drops in the day. ( Hyloforte) NB they should be preservative free, as you will need to use them a lot during the day, (preservative eye drops should be used a limited amount of times per day) I was prescribed an intense one at night , not lacrilube, as I found that stopped the tape from sticking.

It was very difficult to tape down at first. It took a lot of tape etc. I went back for more advice to a different GP. He told me to tape it down during the day to help with pain and also rest / moisturise. I rested everyday for 3 weeks, due to pain and fatigue. Every time I taped my eye down. It helped. However I still had to take a lot of painkiller.

I a, now 4 months down the line in recovery. I now can blink my eye, which is a big step forward, but I cannot keep my eye shut for more than a matter of seconds. My face shape still looks lopsided, part of my mouth remains paralysed. At first I struggled to speak much, could only drink through a straw, only ate small amounts of food / soup. I have come a long way in 4 months. I have now had MRIs of my head and neurological assessment to give me a prognosis for recovery. I am waiting for results, but have been already told the nerves have regenerated as much as they can. I am under an eye clinic too. I saw them recently for assessment for surgery, not that I was aware of why I was referred... They fortunately don't want to operate , but have given me a detachable weight for my eye, which I literally stick on at bedtime every night. It is called Blinkies, no idea how to buy them here. They come with adhesive stickers . They eye clinic wants me referred for facial physio. I am up for that, anything to improve things.

I wear a lot of sunglasses by the way , not for vanity, but to protect my eye. . Frequent eye washes during the day helped me too.

I know a lot of people who have experienced BP, but non one apart from fellow sufferers on HU with RH. Looking back the first stages of this were the worst. You kind of get used to it / dealing with it, but I wish the pain in my head would go .

Good luck!

[Hedgedge]

Hi Matt I'm interested to know how you were misdiagnosed with Bells Palsey. Hope you're condition is improving. Can you say what to whatch out for to spot the symptoms of Ramsey Hunt that differentiate it from Bells Palsy? Any pointers appreciated! I'm using micropours tale btw. Better than an eye patch with cotton wool.