Strange sensation in neck

[Galloping]

I was diagnosed in Aug 2019 and started on 15mg. Been tapering slowly and now at 6mgs

My question is this, for the last couple of weeks I've woken up with an odd sensation just where my earlobe meets my jaw. It's mostly on the left side but sometimes on both. It travels down the front left of my neck and the only way I can describe the feeling is that it feels like cramp with that feeling you get at altitude.

I've also started getting headaches, only mild but unusual for me.

After a few hours it does subside but I'm mystified and slightly worried.

Any ideas please.

[jinasc]

You need this checked out, like yesterday.............so an urgent call to your GP - ask he will see you today and do not take 'no' for an answer from the receptionist. If this is not possible............A&E for you today.

Possible GCA and you need to check it out now.

[Galloping in reply to jinasc]

Thank you for your reply. Scared now so will call GP.

[jinasc in reply to Galloping]

I worry when I post like this..............but always better to be safe than sorry.

I sincerely hope you do not have GCA. Please let me know.

[Galloping in reply to jinasc]

Hello again,

Couldn't get an appointment with my GP for today so before going to A&E I decided to cal 111

The doctor has just called me back and after extensive questioning on my symptoms is sure I don't have GCA, more likely that I've tapered a bit too low too soon. The pain I have is in the wrong area to be GCA, so feel reassured on that.

He's advised that I go and see my GP for a more physical consultation and I might need to increase my dose of steroids.

Will follow it up tomorrow.

[PMRpro Ambassador in reply to Galloping]

And, out of interest, where is the wrong area?

[Galloping in reply to PMRpro]

Under and behind my ear apparently, and extending down front of neck a little way.

I don't have pain or tenderness up the side or on top of my head, nor in the jaw when I eat or speak.

He asked a lot more than that and I'm happy to wait to see my GP now..

[PMRpro Ambassador in reply to Galloping]

Good. But any visual symptoms - A&E ...

[Galloping in reply to PMRpro]

Thankfully no symptons involving my eyes.

[PMRpro Ambassador in reply to Galloping]

As long as it stays that way!!!

[jinasc in reply to PMRpro]

I thought about 8th Cranial Nerve involvement...................I tried to find a photo on the web about where it is..............I did but could not work it out. So, I chanced the reply.

[jinasc in reply to Galloping]

Thank you for letting us know.

I just want to re-inforce what PMRpror has said. Any visual symptoms................A&E.

[SheffieldJane]

You must report these symptoms to your doctor immediately, it could be the start of GCA and this needs to be treated as a medical emergency! Good luck. Let us know what happens.

Apparently jaw pain is the clincher, with flares too and needs immediate high dose Pred ie 60 mgs. Sorry to frighten you. Time is of the essence. My advice still stands.

[Oumaof2]

I know GCA is always first port of thought... I'm wondering if it might be a blocked Parotid gland...

I had this for a long time before it was treated... No pain just an odd tingling and swelling when it was active... However Galloping , GP should first rule out GCA...

Good luck 🍀🍀🤞🤞

[Galloping]

Thank you. Am following it up.