Does anyone suffer extreme head pain like there is a something inside causing pressure, it affects my eyes with light too.like migraine

[lucy-may]

[teecayc]

Hi lucy-may, yes I've suffered very bad head pain. They don't happen often but boy do I know about it when they do. Feels like I can't look at anything or move my head, making it very hard to do anything.. they've lasted into early hours. Really used to worry me, I thought something was seriously wrong as I never really suffered headaches before having SLE. I've tried explaining it to people and they say they get bad headaches too but I'm sure it's so much more than a normal headache!

[lucy-may]

Thank you so much ,you have descibed it exactly as l get this, I thought l had a brain tumour or something, l too never had headaches before l got SLE, but boy l know it when this comes on. Thanks for your reply made me feel so much better, although l do feel for you knowing you get them too.

[Sue2803]

Hi lucy-may, I have always suffered with awful headaches and was told for years it was migraine until my sle was diagnosed and always the anti-phospholipid syndrome. Am now on warfarin to thin my blood and my headaches have improved dramatically, very rarely get one, risky being on warfarin, and I run my inr at about 3-3.5, which can be dodgy but weighing it up I think it is worth it to ease the heads.

[Hidden]

Hi Lucy-May - yes, Sue is right, at least 30% of people with lupus will also have antiphospholipid antibodies - Hughes syndrome to lay people which is responsible for your headaches/migraines. Please have a look at our website: hughes-syndrome.org or join our Health Unlocked website too: hughes-syndrome.healthunloc... if you want to find out more about it.

Sue - we have quite a lot of patient info about INR on our Health Unlocked site. It is very common to have to run a high INR with APS - usually about 3.0-4.5 but it scares the anticoagulation clinics as they're not used to it!

[chrisj]

I suffer light sensitivity, have a lens in my glasses to help with that but not so much the headaches, just the occasional bit of pain between my eyes and in my nose!! I get minor nose bleeds as well now and again...

[allix]

HI Lycy may yes, APS or Hughes syndrome gives you headaches and distorted vision. I am on Warfarin, INR 3-4, which is a pain because of the blood checks, but it eases the head and when I get the distorted vision or disco lights as I call them the headache doesn't come anymore.. Do get nose bleeds but thats because of the warfarin. Do not drink Cranberry juice while on warfarin, can have a real bad effect. It put my INR up to 11 which was very dangerous. Have you been checked for APS,? I suspect thats what is causing your headaches. Hope this helps and please keep well

[lucy-may in reply to allix]

Hi allix, thanks for your reply, no have not been checked for APS l will speak to my rhemy on my next visit.Thanks for the info. very helpful. x

[Kentish_Man]

Hi Lucy & Allix,

I get the eye pain, sometimes have to watch the TV through sunglasses, I also get the blinding headaches as if someone has nailed my head to the pillow and just general severe pain through my body. My INR is also kept between 3 & 4 with the resultant nose bleeds. As I take high doses of steroids my skin is also a bit thinner, so I can only shave every other day or I cut my face to ribbons. Even with an electric razor !!

Keep well.

[sharonsimmonds]

hi my name is sharon i was diagnosed 3 months ago after years of suffering now being told i have had it since i was 11 years old when i suffered stills desease i have had misscarriages depression seizures swollen an kle joints swollen knee joints have been drained twice and steroids i infusion tongue ulcers very bad night wseats neck operations at kings broken ankle broken wrist due to dizzy spells all thanks to lupus after my auntie had it for 25 years i kept asking for a test but told not to be silly oh well there you go just got to get on

[lucy-may in reply to sharonsimmonds]

Hi Sharonsimmonds, so sorry to here your story, why oh why can they not diagnose earlier, l thought before l got diagnosed l was perhaps losing my mind, kept being told, We cant find nothing wrong, but when you feel so bad and in so much pain, how can there be nothing wrong?. but as you say we have to carry on. At least we all have one an other to talk too, when we are down or need advice, and no matter what we say everyone understands,

[sharonsimmonds]

nice to talk to you lucy may i do need someone to talk to im sorry i forgot to tell you i am 54 so hence have had sle since i was 11 and often what i have done so bad in my life to deserve such an awful desease i to used to think i was going mad because they wouldnt check for lupus and kept saying there was nothing they could find wrong with me but i was always in pain somewhere the worst thing were the seizures ant feeling so dizzy twice i broke bones falling over and also knocked my teeth out i havnt been able to work for nine years and they have finally put me on dla highest rate and middle rate which does help oh well it was nice to talk hope we can talk again as i feel there is not a lot of support out there i am feeling low at the moment and with no one to talk to love sharonxx