Follow up to my “what does GCA feel like”…….

[Bramble2000]

Hi everyone, as usual, I’m awake!

I asked the other day if people could describe their GCA. Reason being, I was lying down the other day trying to have a nap when I suddenly had the strangest feeling that I’ll try to describe but I’m not very good at describing physical pain, It was either side of my head, both sides, about an inch above each temple. It felt 70% in my scalp and 30% in my head. It was painful but it felt very very strange like nothing I’ve ever felt before. It was almost, but not quite, a kind of burning. It went off after an hour or so and has happened a few times since, but only ever when I’m lying down. It freaked me out a bit. I KNOW I need to tell my GP but I’m really scared. I’m scared of something worse developing and I’m scared I’m going to be forced into taking the steroids which will be horrendous for me. I just feel overwhelmed. I’m a single Mum to an 18 year old who has Severe ME and has just been diagnosed with Autism after more than 18 months of assessments etc. Not only that, the poor kids Dad is going back to prison imminently for another three years so we’ve got all that trauma to go through again. My son is completely reliant on me. I’m just so weary of it all and I’m convinced all this is why I developed PMR in the first place. I’ve also got Ankylosing Spondylitis going on and about to start Humira again. I’m hoping the scalp thing is just some kind of weird anomaly Could it be a one off I wonder. Thanks for listening and I am fully aware that I need to contact my Doctor, which will be an effort in itself! X. I’ve also felt utterly exhausted, more so that usual.

[SheffieldJane]

Hello fellow wakeful. Not a good time to go over your worries one by one. It is almost irresistible though, as I know. A soothing audio book helps me - when I don’t have a house full though.

Am I right in thinking that you are not taking Pred? Or is that another member?

You must have those symptoms thoroughly checked out you know. Your sight could well be at risk and if you have PMR without being treated, then you are extremely vulnerable. You do need qualified medical opinion. Your son needs you, if only for him you need to keep healthy. I urge you to explore the options available to you. Best wishes Jane. X

[Bramble2000 in reply to SheffieldJane]

Thanks Jane. I couldn’t tolerate the Prednisilone but I’m going to try to get hold of my GP…..

[SnazzyD]

Morning! Can’t sleep either, 😂

I concur with SJ. I know when thoughts of the worst are too much and one doesn’t want to ‘go there’ by asking a doctor. What you don’t want to end up with is kicking yourself with the ‘if only I did something earlier’. That can be because of negative consequences of delaying or needles worry for ages.

When you lie down and it happens, does it make any difference as to whether you are lying with pressure on the back of the head? Is it affected if you change position? Have a read of this about the sternokleidomastoid muscle which can mimic GCA and if mine are tight, I find the beginning of a lie down can be uncomfortable but it soon improves. I had several scares thinking I had a GCA flare. It is very affected by stress postures. This info isn’t to disregard other potential causes but if you find this helps a lot, it might help your anxiety about it and know the wood from the trees if there is a next time.

healthline.com/health/stern...?

[Bramble2000 in reply to SnazzyD]

Thanks. I don’t think it’s that. It was more above the temples and I guess it was more an extreme sensitively, maybe, lol. 🤷‍♀️🫤🙄

[123-go]

I’m so relieved to read that you are going to contact your GP. To have all those concerns going round and round in your head simply creates that vicious circle where nothing is solved and problems are exacerbated and the ‘hole’ you find yourself in becomes deeper. Please, do take that step now: you deserve better. 💐

[DorsetLady PMRGCAuk volunteer]

Hi,

As others have said, you really do need to seek medical attention….and as we are always saying, any new headache must be investigated.

I appreciate you have a lot to deal with, but ignoring it, and hoping it will resolve itself rarely works out well… and you have made the first step by asking us, but we cannot help, other than giving you moral support. 🌸

[PMRpro Ambassador]

Telling the doctor isn't going to CHANGE anything - it just means they might look more closely, They can't deal with what they don't know,

That it only happens when lying down could suggest that it is a positional thing - and that can happen when AS affects the neck and the blood flow through the neck arteries is compromised. It can also happen if neck muscles tighten in a particular way and so affect the arteries, You won't feel it at the position - it is the supply of blood to the area of the head that matters.

[Gimme]

Yep, no point keeping it all to yourself, if it is GCA you are risking your eye sight without treatment. If it turns out not to be, then your mind is at rest and you can stop worrying about it. If you also have vision blurriness and reds seems less red than normal, then you should call 111 and explain your symptoms and medical history Some areas have an emergency GCA protocol for you to be seen very quickly. I was worried about GCA a few weeks ago as I was having problems with my eyes and I was sent directly to the opthalmologist. I can't tolerate above 10 mg pred and I explained to her how worried I was about needing a high dose of pred, the lovely opthalmologist told me that if GCA was confirmed, normally I would receive the initial high dose and if I reacted badly to that dose, there were other options. That's all I know, but the point I am making is that if you suspect GCA, you should not be put off seeking advice just because you fear the outcome. You need to protect your long term future and get the appropriate care if needed. Make yourself the priority.

[Bramble2000 in reply to Gimme]

thank you. X