Very uncomfortable face and head sensations

I can't believe that someone is not jumping in to suggest that you head to the ER. Have you not been alerted to the risk of GCA? https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758
My itchy scalp was enough for my Rheumotologist to treat me with high dose Prednisone. Are you under the care of a Rheumotologist, I hope?

@pah17 yes I am dealing with a rhumatologist after having sudden very high
CRP levels (178) and many other blood markers that were suddenly way out of range. Diagnosed with PMR and started on 60mg of prednisone even though I've been feeling ill for many years before with blood markers within range apart from moderate hypogammaglobulinaemia. I've had the scans for GCA twice and they were normal. I'm on 5mg of prednisone at the moment but I think it's not enough to keep my pain away and possibly too low and making me feel really ill.

I do itch pretty much everywhere especially around my torso and chest and arms which I think is a mixture of very dry skin and nerve pain from thoracic/ribcage inflammation/arthritis.

This facial discomfort and the feeling like I'm having strokes all day long is extremely tiring and although I've mentioned it to my doctor and rhumatologist, they haven't come up with any answers.

@pah17 yes I am dealing with a rhumatologist after having sudden very high
CRP levels (178) and many other blood markers that were suddenly way out of range. Diagnosed with PMR and started on 60mg of prednisone even though I've been feeling ill for many years before with blood markers within range apart from moderate hypogammaglobulinaemia. I've had the scans for GCA twice and they were normal. I'm on 5mg of prednisone at the moment but I think it's not enough to keep my pain away and possibly too low and making me feel really ill.

I do itch pretty much everywhere especially around my torso and chest and arms which I think is a mixture of very dry skin and nerve pain from thoracic/ribcage inflammation/arthritis.

This facial discomfort and the feeling like I'm having strokes all day long is extremely tiring and although I've mentioned it to my doctor and rhumatologist, they haven't come up with any answers.

@frenchfrank51
Do antihistamines do anything to relieve the itching? Benadryl?
I wonder if the itching is related to some kind of nerve issue. I have an itching at my right shoulder blade that the doctor mentioned it could be the nerve. I have applied nerve pain cream in the area and it did help.
I hate all these mysterious symptoms!
Best of luck to you!!

@frenchfrank51

First, I'm very sorry to hear hear you are going through all of this. I know this is very frustrating on top of the pain.

I have had a similar -- although not as severe -- experience.

Before my first bout of PMR in 2017, I had some rather minor but unexplained facial numbness/neuropathy. Nobody could tell me why.

Once PMR set in, it became a full-blown cranial neuropathy with intense headaches, sometimes the sudden shooting kind (perhaps similar to what you're describing as strokes?).

Lots of tests, including GCA and MRIs and neurological studies, resulting in only shoulder shrugs from docs in return. Even after my PMR was under control and off prednisone, the head condition continued. The shooting headaches went away for the most part, but the neuropathy and underlying headache never went away and has never been explained. The only thing that helped some was having vertebrae fused in my neck for deteriorating disc disease -- obviously an unrelated condition.

I did have lots of skin conditions on my head as well, but not as severe as you seem to have it, which I attributed to the prednisone.

PMR hit me hard again this past November and with it the headaches intensified, but not the sudden shooting kind. Got the body pain under control with prednisone once again but the head condition continues.

So unfortunately, I have no good answer and have been given no answers over the past nine years. But the intensity in my case did at least ebb some.

All I can say is that perhaps your PMR is interacting with some other underlying condition.

Hopefully you will get some more answers in this forum. And please keep us posted on how it's going.

r/Barry

@barjohnson62

Thanks for your reply Barry.

I'm sorry you've had to go through similar issues. At least it shows I'm not the only one. And not the only one who can't get any answers from so-called specialists.

I get mild headaches at times but more skull bone pain if you know what I mean. Forehead, around my eyes, the bottom of my skull at the back. And occasionally I get loud bangs, like gunshots being fired in my head and buzzing sensations. Possibly migraine or neuralgia from arthritis or inflamed nerves in my neck. Hard to tell as you know.

You're right, it's not easy to cope with, especially not eating, chewing, swallowing properly and slurring my words. Sometimes I have to put my hand over my mouth because I feel if I don't I'm not going to keep the food from falling out. I presume, because you didn't mention it, that hasn't been a problem for you. I hope not. I've even wondered about something like meningitis at times as I had it as a child.

You could be right. Either PMR or prednisone could be interfering with an existing issue as I've had a range of weird and unpleasant symptoms for years. I hope you get better in all ways too.

@caroljeand thanks for your reply. Never tried antihistamines because I avoid taking any type of drugs and only at the age of 74 have I been forced to do so with prednisone. What do you mean by nerve pain cream? I try to put on lots of glycerol type cream to moisturise my skin but it seems to have little effect. If I put anything on my face, even very mild cream, my skin stings and my eyes water. Even the salt in my sweat stings. You're right, these crazy symptoms just keep coming non stop. Good luck to you too.

@caroljeand thanks for your reply. Never tried antihistamines because I avoid taking any type of drugs and only at the age of 74 have I been forced to do so with prednisone. What do you mean by nerve pain cream? I try to put on lots of glycerol type cream to moisturise my skin but it seems to have little effect. If I put anything on my face, even very mild cream, my skin stings and my eyes water. Even the salt in my sweat stings. You're right, these crazy symptoms just keep coming non stop. Good luck to you too.