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258 Views 6 Replies 6 Participants Last post by  w3nDy
hi i know i dont chat much on forum mostly cos i cant spell to well or not really sure what to say and how but its not i dont care cos i see u all as my bestfriends as u all understand/listen/help/have a laugh/

but i keep getting this headache that causes so much pain like pick axe one side frount and lower bottom lip goes tinging itchy numbish and feels swollon but isnt is all just one side right side can anyone tell me of good meds that might help cos any trying alot and nothink really working just takes the eged off it

have been dx with sle and sj syndrom

meds takeing is plaquenil but had headach like this before on meds

big hugz
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Have you mentioned this to your doctor(s) yet? It does not sound like the typical "lupus headache". I would talk to your GP and/or rheumy about it, and possibly seek a referral to a neurologist if they are unable to help treat it or come up with a cause for them.

Good luck!
Hello Wendy

I don't know much about headaches except they are more common in lupus. I imagine a lupus headache is more like a migraine than a pickaxe type and I think it's usual to have to try several meds until you find one that helps. Is your GP helping you at all?
Katharine posted recently about her headaches being due to hypothyroid. It's a good idea to be tested for that anyway.
Sometimes heaches are due to the antiphospholipid antibodies. Do you know if you have these and did Dr D Cruz suggest a low dose aspirin?

I suggest keeping a diary of your heaches to see if there is a pattern. Note what foods you eat and how you are sleeping for example and what activities you've been doing.
Sorry, not to be more help

I expect you don't feel confident about writing but I assure you that spelling really doesn't matter here.

I hope you can find a remedy soon.

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i get those headaches a lot too...i was told that mine is a rare migraine called hemipelgic migraines. but after reading the other two posts, i'm wondering what's a lupus headache. my test results are still borderline for lupus and i'm still going through the diagnostic stages. however, if i were in your shoes, i'd go see your doctor. if you need to, you might want to try a neurologist.
I agree with Clare that a diary of the headaches is a good idea and that it may be caused by APS...Antiphospholipid Syndrome. With APS, folks usually get headaches long before they are diagnosed with the syndrome. It is a common occurrence.

APS antibodies can be checked with a simple blood test. Ask your doctor about it, or if you have ever been tested for it.

Good luck and let us know how your feeling now.
If i was you, i would be telling my gp, and your rhemy/ neuro if you have them,
i use t get these well bad too, just Don't leave things thinking it could be this or that, one never knows whats happeing, it could well be migraines i get the cheek bone and lip go numb, this went on long time yes from age of 15 i had migraines,

now it went futher get seizures too, all due to sle, not saying you have any of htis, but write things down as clare as said, but dont leave things undone.its horrid feeling isnt it, do you get bad cheek pain too?

good luck Lin xx
thank you

thank you all for takeing the time to reply my head alot lot better but if i get it again i with make sure i go bk to gp i am going to tell my rhume who i see in march

big big hugzzzzz
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