Bad headaches

Hi all, just a query if what I am experiencing is another symptom to add to my others and wondering if the same happens to any of you.

I have posted previously but just wondering if this could be another symptom.....I have not been diagnosed with SLE or any other AI illness but am having lots of symptoms including Raynauds, oral lichen planus, joint pain, rash on ankle, constant UTI and microscopic haematuria even when no UTI....been getting some bad migraines lately and I have been blaming the lighting at work but sometimes even when not at work I am having pounding headaches that make me feel confused and I cant hold a proper conversation ..... I know what I want to say but it comes out as jumbled up nonsense and I can't even get names out of family members and close friends as I feel so weird and mixed up this confusion lasts anything up to an hour.... also feel a bit like I am walking on air if that makes sense.....after this I am left feeling nauseous with a pounding headache that wont go even after taking pain this a migraine or a 'lupus Type Headache'....sorry to go on a bit but have experienced several migraines in the past with the flashing lights but these I am having are different

10 Replies

  • Yes, it sounds very much like it, although few neurologists would agree if they aren't experienced in lupus. You need to see a rheumatologist so that he/she can take all these symptoms into account and diagnose you properly, then start you on right medication for lupus. A controlled lupus means controlled headaches (not by popping Paracetamol in your mouth like Smarties).

  • I agree. Lupus headaches were my first symptom of lupus when I was just 6 years old. No one took them seriously until the other symptoms came on a few years later. Was diagnosed aged 16. When my lupus is well controlled I never get headache (well not the killer lupus ones), but when I'm having a flare the headache are awful. Azathioprine with prednisone, but mainly the azathioprine completely controls my headaches/migraines; I never get them when I'm on azathioprine.

  • I was diagnosed with migraine at 9 years old and what you describe is typical for thise headaches. BUT in recent years I've had the Lupus headaches too and can't tell the difference between the two. I've been to the headache clinic and the specialist said that I was describing two different headaches but it's all agony to ne :/ Interestingly having read one of the other responses Azathioprine does not prevent mine.

  • Your symptoms could be caused by numerous conditions I think it's best you talk to your gp. This could be something simple like migraine or something more nasty. It wouldn't be lupus but if you have an autoimmune disease if could be a secondary thing caused by it. (Hope that makes sense!)

    Hope you feel better soon x

  • Thanks everyone for your replies I will try to get an appointment at the GP problem is trying to get one with a Gp I have seen for other symptoms I had a two week wait last time dont want to keep seeing different doctors at the practice and having to keep explaining everything.....still have a headache when I woke today just a dull thud though I can cope with this kind the others are a different story and really knock me for six

  • The speech problem you mentioned is called aphasia. I get that as well as aural and visual auras right before the onset of a migraine episode. Pain medication doesn't help much and they can go on for days and are quite debilitating. I am also light sensitive and this can be a trigger when I am in the office or restaurants with blinding overhead spot lights. Also driving at night with oncoming traffic. My lupus med (cellcept) doesn't help in this area. I sympathize. I do think it is part of lupus.

  • Thanks Marfam for your response this type of headache is so weird as I am fully aware of everything around me head pounds all over and it feels quite surreal, weird and a teensy bit scary all at the same time is all I can describe....I sound a bit crazy when trying to describe how it feels to my husband... I get headaches that seem to give me right sided visual auras too they are a drop in the ocean towards these... these seem to strike me when least expected to.

  • Hi,

    You may want to read our factsheet about lupus and the brain - you may find it helpful;

    You should bring these symptoms to your doctors attention when you see them.

  • Thank you Paul for the information will have a read through it

  • Sounds very much like the symptoms I am getting and I totally get it. I have been having really wierd piercing sharp pains in my head and not always in the same area. I also have had a chest pain for months now so I am booked to see cardiology but I am not sure it's the right path. My rheumatologist has diagnosed UCTD. Had both head MRI and chest Eco cardio gram all came back normal. Does this desesase change quickly as thes tests were done within last 6 mths?

    I feel very fatigued and light headed most days. Has anyone got any advice for the natural route? I am on 200mg of hydroxychloroquine at first this seemed to make a diff but not I not so sure.

    I am definitely going to cut out sugars, processed foods, milk and gluten to see if this will make a difference. Has anyone tried this?

    Cheers together we can beat it :-)

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