Hi Everyone, I was diagnosed with Lupus at the end of February. I am currently taking hydroxychloroquine (400mg a day) and I am due to see my Consultant in 2 weeks to discuss the next step of medication. I am currently suffering from quite severe headaches that are lasting in excess of 24 hours (I go to sleep with them and wake up with them)- do any of you have any advice as to what I can do/take to relieve them. I drink around 3 to 4 litres of water a day, I am very healthy with regards to lifestyle/diet etc. Any advice would be much appreciated!
Thank you!
Laura
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Law1104
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Thank you so much for your response, I popped an email across to my Consultant's secretary on Tuesday but I am awaiting a response. Fingers crossed they get back to me soon. Again thank you for replying to me I really appreciate it x
Hi Law - Have to say I couldn;t tolerate Hydroxy due to the truly diabolical migraines and also diahrea (can never spell that!). See how it goes, but I gave it about 6mths and gave up. Some on here talk about taking it every other day etc, helps apparently - but I tried every which way, reducing etc and was just no good for me. I had migraines before anyway - but these were off the scale and definitely linked as started almost immediately.. mind you I did have migraines afterwards... linked to major work stress (social work) but they werent as insane.. so now Im not working and hardly have them at all as I rest appropriately and NO STRESS compared. Id call your Rheumy and discuss asap... For your meeting, Im on Methotrexate instead and it works well, with no migraines as I had from the Hydroxy. Hope things improve, all the best. D
Thank you so much for your response. I too suffered quite badly with headaches prior to taking this particular medication. I have an overlap of sjogren's syndrome so my eyes are also terrible, I sit at a computer all day as a PA in a law firm so I don't think that is helping either. I am now on day 3 of the headache, I just want to pack my things up and go home! Thank you for the suggestion regarding medication, I am hoping they can give me something else as I honestly haven't see any difference in symptoms (although I know it takes a while to get into your system). Thank you x
Hi Laura, Ill have to make this short as it’s late here. But I have lupus and had 2-3 migraines a week. I can’t take any pain med except acetaminophen due to aspirin and NSAID allergy. I hurt my back last September, and was given gabapentin to try for the nerve pain. It did nothing to help my nerve pain but it was like a miracle because my headaches ceased and I haven’t had one since. I know this is probably unique to me but thought I’d mention it because it has really helped the quality of my life. I wish you the very best, Nan
Funnily enough Nan I am also taking Gabapentin for ongoing neck and shoulder pain (which now appears to relate to the Lupus). I really do find these headaches quite troublesome, I go to bed with them and wake up with them. I am hoping my Consultant responds soon. Thank you again for your response! x
The next article is about the lack of vitamin D, which is something most of us have is a low vitamin D level unless we take the correct supplements. This article indicates that it can affect migraines.
Thank you so much for your response, I will have a read of the articles you have sent me. I have woke up this morning having a very bad day feeling horrendous! Thanks again, Laura x
Headaches are very miserable and debilitating. I used to wake up in the middle of the night or early morning with frequent, intense headaches. Sometimes they lasted for days and affected my stomach as well. For the last year things have greatly improved for me. I take Maxalt meltlets when the headaches are very bad - a migraine medicine which my GP prescribed. This is a relatively expensive migraine med so is not always the one prescribed first but it is easier to take when you feel sick. You can take painkillers with it eg nurofen if you require something to take the edge off whilst it works - sometimes 30 mins or more to wait.
I am also on a regular routine of 2 tablets of oral ketotifen (1 mg x2) which works as a mast cell stabiliser and I tablet of the antihistamine, fexofenadine. I was put on this by an immunologist whom I was seeing about a variety of problems, not just the headaches and he realised I had a problem with histamine via blood tests and the fact I could not eat/drink certain foods eg alcohol particularly wine and processed meat and strong cheese and dark chocolate. The antihistamine regime which means following a low histamine diet too has made a real difference with getting rid of my headaches. Eventually I think the theory is my mast cells will calm down and I can come off the mast cell stabiliser ie ketotifen.
If none of this resonates - or even if it does - it might be worth asking to be referred to a headache/migraine clinic or alternatively an immunologist. I am prone to infections particularly utis and have some mild immune deficiencies as well as the over active autoimmunity of uctd/sjogren's which is why I see an immunologist as well.
How did you get on with your appointment? Did your doctor say anything about your headaches?
If you haven't seen it already, we have an article on our website with a lot of information and advice about headaches in lupus which you might find helpful - lupusuk.org.uk/headaches-an...
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