Pressure around head

Since I’ve reduced to 6mg, have been feeling extremely tired, with brain fog. I now have a lot of tension around my head, which feels like a low grade headache. It’s over the top of my head, the sides of my head, around my jaw area and my ears. My neck also feels tight and achey. I can’t find any raised veins, any idea what’s going on please ? Could this be due to adrenal insufficiency and be something that might adjust itself in time ?

[DorsetLady PMRGCAuk volunteer]

Fatigue and brain fog could be due to adrenal insufficiency, but not sure that tension in head and other issues you describe are, and to be honest I think you do need to get those checked.... any new headache must be investigate whether you think it might be GCA or not. .. And don't assume that you always get raised veins in GCA, I certainty didn't, but sure as heck had it!

Please let us know outcome.

[Hidden in reply to DorsetLady]

I had something like this last year and had an appointment with the doctor, she prescribed 30mg pred to be on the safe side, but the rheumi wasn’t happy and put me on a rapid tapering regime. He later checked my head and as I didn’t feel pain when he pressed my head, only a little on the left hand side, said I didn’t have GCA. I don’t have much hope re: their diagnosis. I will, however, move like lightning down to A & E if I get a really bad headache, given your experience, which I’m sorry you had.

[Sophiestree in reply to Hidden]

I have LVV and nothing for me has been across the whole of me. All my head issues have been one sided in terms of direct pain, but had the feeling my whole head was in a vice. Had no problem touching my head, brushing my hair etc and was diagnosed via PET CT. So a pretty broad statement they've made there.

[Hidden in reply to Sophiestree]

Well I’ve really given up with my rheumi, as I have only seen him a few times, last year and was promised a telephone consultation by his Secretary which I never had. I think he is avoiding me since he mentioned a painful foot, which I have never had, in his medical report, as part of my initial symptoms. I queried it with his Secretary and it’s been very quiet ever since. (My husband has the bad foot). The fact that my symptoms started with an arm that was paralysed for a week was totally ignored and just attributed to my osteo-arthritis. Anyway, I will be very careful with tapering and go to the doctor or A & E if my problems increase, Thank you very much for your concern, it’s lovely of you.

[PMRpro Ambassador in reply to Hidden]

That's a bit sweeping! You can have cranial GCA without it affecting the temporal artery - and a skull does a pretty good protective job!!

[Hidden in reply to PMRpro]

I will certainly react quickly if the symptoms worsen. I might consider asking for a new rheumi. As I haven’t heard from the other one, he might have left 😀

[PMRpro Ambassador]

I agree with DL. It could be adrenal issues - but it is fairly early days for most people.

[Hidden in reply to PMRpro]

Thanks PMR.

[PMRpro Ambassador in reply to Hidden]

Except I've just realised I misread your 6 as 8 - so perfectly likely ...

[Hidden in reply to PMRpro]

That’s reassuring, thanks PMR.

[Hidden]

Bluepuddy, I have identical symptoms to yours every time I reduce. I'm currently on 2.5mg "and holding". It goes like this - I reduce, the tightness starts, the headache starts, the fatigue starts and all this lasts for about a week to ten days. Then it all fades away and I'm stable at the reduced dose. I don't fight it, I just sleep it off. I know it will all start again when I drop down to 2.0 mg and so on. However, lately, at this level of 3mg to 2.5mg I'm finding my motivation to get anything done has faded drastically. I'll post again and ask that question.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Have replied to your post-but just thought are you using a slow taper-that might help with the steroid withdrawal type effects you describe-that’s one of the reasons they were designed…. Well it was my motivation to produce this -

healthunlocked.com/pmrgcauk...

[Hidden in reply to DorsetLady]

I stayed on 7mg for a month and a half until I felt able to decrease the dose. I’m now on 6mg. I will stay on 6mg for a while in the hope that my symptoms subside. Your slow taper will be very helpful. I was down to 5mg in May, but had to increase the pred.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

good luck….

[Hidden in reply to DorsetLady]

I think it’s a good system. 😀

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

so do I 😊

[Hidden in reply to DorsetLady]

😀

[Hidden in reply to Hidden]

Hello Brunswick,

Sorry to hear you have the same symptoms, but your post has been a great help.

[Viveka]

If it is unusual for you and if it carries on it might be an idea to have ESR and CRP checked. In my fourth week of 5mg I have developed wobbly legs, queasiness and aches in various places that lasted for a couple of days, then disappeared, then came back, then disappeared. Now I have a low level but persistent headache but on the top of my head. I try and ignore low level symptoms because when I went up earlier in the year, as far as 30, it did not help at all.

[Smithie49]

Hi bluepuddy. I hope you are ok. Your symptoms are so similar to mine - brain fog, a thick feeling in my head and a persistent headache on the LHS. As I overdid things recently I had a flare and upped my dose from 7 to 10 mg for 3 days. I felt better. On Weds I went back to 7 but feel rough. I ve woken this morning feeling incredibly stiff, still tired after 11 hours sleep and with a low grade pain still in the left side of my head. By chance I'm seeing a GP this morni g re my hearing so I'll mention this and see what he says

[Hidden in reply to Smithie49]

Thanks Smithie 😀

[montebello]

all i can add to what the others have said is my concern for you that this is GCA. My symptoms were very atypical. Yours are typical. Biopsy time?

[Hidden in reply to montebello]

Hello Montebello,

Thank you for your concern, I’m hoping that it’s due to low adrenals, as in a couple of other cases, but will act quickly if the symptoms become more severe.