lupus : really get extreme headache which i have... - LUPUS UK

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dugthe profile image
6 Replies

really get extreme headache which i have never suffferd before until when i awake some mornings my head is going to explode with pain and body shuts down but yesterday i took 2 prednisolone and head was still as bad until i took 3rd pred.. then went away ,, ? does anyone with lupus suffer this when awaking in the morning and always ill for days afterwards ,, i have never had sore heads in my life ,, i would be grateful if any answers too this ,,

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dugthe
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6 Replies
PMRpro profile image
PMRpro

I assume you have told your rheumy? If pred works it is possibly a sign that it is due to inflammation of some sort. That should be looked into.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi dugthe ,

It is important that you discuss this symptom with your doctor. Headaches are common in lupus. They may be a part of lupus itself or association with a clotting (antiphospholipid) syndrome. They may or may not have a migrainous element with flashing lights and visual disturbances. In any patient with lupus who suffers from headaches a systematic search for known causes should be carried out including blood pressure checking and, very important, an examination of the blood for antiphospholipid antibodies ('sticky blood') and ultimately, if indicated, a brain scan.

IMWilson profile image
IMWilson

Some years ago I started getting really awful headaches which I never usually got. I eventually saw a GP who said it was not a stroke or a brain tumour (don't know how he could know that without a brain scan). Guess what, I had a right side stroke. I say this not to frighten you but encourage you to get a scan to check things out. it was my consultant who sent me in the end.

dugthe profile image
dugthe in reply to IMWilson

hi pal ,, i am getting wakened at 3,4,5,6,am and head going to explode with excruciating pain i have been awakened by them at all times and then body riddled with pain aye am takin 2x5mg prdnisolone in morning but i am constantly getting bad flares at the moment i am having 2/3 per week ,, i am from fife scotland and still on really bad days i am taking 3/4 preds,, but doesnt help at times ,, does anyone know of any current lupus specialists in east of scotland ,, and has anyone had Solu mdrol jag for constant ,Flare ups ,, i have been suffering all major symtoms of lupus for about 5 yrs and ill with it nearly every day ,i have still not had results back from rhuematoligist , anyway these headaches are a nightmare,,

dugthe profile image
dugthe

never suffered more than a handful of light headaches ,,and these really excruciating ones lately ,,aye am now in 40s and never suffered these before only wen a flare up occurs

IMWilson profile image
IMWilson

As previous replies have mentioned you need to see a doctor. Chase up rheumatologist results. Is there anyone in Edinburgh you could be referred to. I have sympathy with the pain you are in, the worry it is causing as well as not getting proper sleep. Go back to your doctor, be persistent if you have to. Ask for a brain scan. What is your blood pressure like? Keep asking questions, perhaps take someone with you to appointment. Good luck .

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