Headache

Just had a really bad headache come on all of a sudden, it’s been on and off the past few weeks and I was admitted to hospital a few weeks ago with it to help manage the pain :( anyone else with lupus get this? I am currently at uni with loads of deadlines to meet as well as a part time job where I am meant to be working today but feel this headache is disrupting everything 🙈

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Yes I get migraine that come on very quickly but luckily usually only last 5/10 minuets but are quite intense yet agian a simptoms that you can’t see but knocks you off your feet

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I’m still suffering at the moment after paracetamol and ibuprofen :( just had to leave work early as it was so bad

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Sorry it’s so bad I know how it can get you down when I get them for a long time the only relief I get is a dark quiet bedroom I take tramadol and that dose not work at all hope it goes soon

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Please don't use tramadol for migraine. My neurologist warned against it. It can cause headaches!

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Yes totally agree it’s brill for the joints and muscles but no use for head ache or migraine

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Hi I really know how you feel! I had a visual migraine the other day and had a slight headache after. It’s been 2 days since then and I’ve developed a really bad headache which is making me feel sick too. Mine can last quite a few days and be on and off over a week or so. I find that forehead cooling strips can help at night if it’s preventing you from sleeping. I think it can be very common 😭 hope it improves for you soon! Xxx

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Hello stephaniejpm,

Poor you. Ice, and several hours in a darkened room are the only things that help with migraine for me.

Forgive the nagging, but I do hope you have spoken to your tutors at uni so that they make proper allowances for your ill health? x

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Sorry to hear you are in pain. It’s the pits. Not had a migraine for a while but when I do, it’s off to a darkened room, into bed, keep everything quiet and not much else until the pain and nausea have completely subsided . I’m rendered useless until it passes. Sometimes with aura lasts a few hours/days sometimes less and not so intense.

I do hope you improve soon. Something else to add to the never ending list! 😏

x

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Hi Ive had aura migraines for years, long before I was diagnosed with Lupus. As has already been mentioned the first line of defence is to take painkillers and rest in a dark room as soon as possible. Always keep a good water intake and keep away from things that may irritate like, chocolate, alcohol or for me too much cheese.

My migraines were irritated by the lupus and then temporal lobe epilepsy. I was put on topiramate which can be used for both conditions. It was very good for four years then last May I had a weekend of incredible migraine which I thought was due to having a mireana coil put in. The headache hasn't gone. I have now seen a neurologist who has upped the dose and I am having a MRI on Monday. I am exhausted by the headache and although it isn't at migraine level it just dosent go. The neurologist also told me about nerve numbing injections that can be given if your headaches start at the base of the neck!

Go back to your doctor, your stress wont help but there are other things to help you. My son is on propranolol.

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Hi stephaniejpm,

Have you been to your doctor about this? Headaches are common in lupus. They may be a part of the lupus itself or may be associated 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.

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