Ramsay Hunt Syndrome - has anyone else been diagnosed?

[Chompiemompie]

hi folks. i have had bouts of really intense pains in my face and ear along with sores along my ear lobe for years. maybe 4 times a year.
i had covid earlier in the year quickly followed by another bout of my face pain and sores. i lost hearing in my ear which i thought was due to covid so had follow up investigations.
Through these, the doctor has diagnosed Ramsay Hunt Syndrome. they tested the sores during my last attack. she said it is unusual to have it so often but there is nothing to be done about it apart from painkillers.

I have it around 4 times a year but never had face paralysis before.
i am now really worried after reading about it.

has anone had / have it and what treatment did you recieve?

Hi how are you doing now? I hope better.

I have had shingles on the face recently with ear pain and some paralysis. I was treated with painkillers and antivirals.

Hi orange.
Hope you are feeling better.

I have had another bout and the doctor eventually prescribed me anti viral.

I am now being referred to Infectious diseases given I have so many episodes.
Let's see what happens!

Mine came back in other side of face.

It did this in the past too, first the right then after thst faded came back on the left.

Please write back how you got on, hope it goes well

They did mention something about a referral, I assumed neurology

I have insurance so could get referred

Mine seems to lurk and this time before the fact I had wierd chest pain
I think it went into the lungs

I don't like the feeling of, where will it go next

but it is best to get the antivirals yes.

Did you get your hearing back?

I did an online test which indicated hearing loss

But the GP said give it a few months before getting it tested properly.

Still getting pain and tinnitus in the right ear

some pain in left ear also but not as bad

face swollen up and pink looking on both sides of face, now.

Unpleasant

I have now been diagnosed with Neuralgia and getting Pregabalin and Co-codomol for the pain

Hope you have got some pain relief and don't get the ongoing pain

Hi folks. Sorry for all those suffering.

Post covid I have lost 20% hearing in right hand ear. They aren't sure if it was covid or ramsay hunt.
I have been told by this stage I won't get it back.

If / when I go to Infectious diseases, I'll report back.

I'm sorry to hear that.

Yes be interested to hear what they say at infectious diseases

My GP did some tests when I kept getting it and I was low in vitamin D.

I've had Ramsey Hunt twice. First time originally diagnosed with an ear infection and Bell's palsy. No shingles rash on either occasions. I felt dreadful the first time, really poorly.

Treated with acyclovir on both occasions and thankfully no permanent damage aside from a small patch of temporal numbness.

I'm sorry to hear that but glad it improved.

yes tricky without a rash but it seems can happen.

@Orangesandlemons77 thank you. I've heard it can occur a few times so I'm very keen on being seen as soon as the facial swelling starts. I work in a hospital and the second time happened whilst I was at work. The swelling started at 9am and I was prescribed acyclovir by 10:30! The anti virals are vile though. They make me feel terrible.

Yes, mine came back too...it does this odd thing where after it has been on one side the other side starts up but not as bad

This happened a few years back on my back, first the right then left, now again on my face and neck / chest area. It also went into my arms.

I don't know why it seems to affect me so much, the rash I get is not so bad but the pain has been pretty bad.

I think it was triggered after a severe bout of illness and abdominal surgery as it was after that it started up. In my 30s.

I didn't mind the antivirals too much but they made me a little nauseous.

Yes, my GPs rang back pretty quick when I did the online request for antivirals, a nurse rang and it was sent over electronically to the pharmacy so I could get it the same morning.

I trust them to do the same again and it does help

I'm feeling a bit down about it all today. I rang about increasing my pain medication and the nurse today said this pain can be ongoing.

Think she might have been indicating I might need to kind of learn to live with it. The previous doctor was more helpful I think, she was going on about pregabalin being addictive whereas he was saying we can just adjust the dose till it works properly.

I find it wears off after a couple of hours but I'm not supposed to take it for a while. It's stressful.

Oh no oranges. Really sad to hear that. Hopefully they can adjust the pain meds to get some relief.

I was completely knocked by the anti viral. I felt awful with sickness and fatigue.
My doctor gave me a double prescription so I have it here ready to start when next flare up comes as she knows how difficult it is to get through to docs / get appt quickly.

That's a good plan x

The other thing I am getting is tinnitus and hearing loss in the right ear

Anyone else had anything like this?

Hoping it will pass.

i think tinnitus is a common side affect as is the hearing loss.
for the latter - i was told that it is important to access steroids to prevent / minimise this - has your doctor mentioned that?

No, they haven't mentioned steroids

My face is quite painful again today. Hope it isn't coming back again. Taking some painkillers.