I've been having such a bad headache for the past few days, starts at the top of my head, goes to my left temple, left eye and left eye orbit. I'm not sure what causes it, I'm worried of course about brain vasculitis. I'm looking to go to a neurologist but my rheumatologist hasn't suggested anyone in particular. Have you had similar headaches and if so, how long do they last, are they connected to weather by any chance, have you consulted a neurologist and if so, what did they say? If you consulted a neurologist, was it one with a particular specialisation for lupus or general neurology? Many thanks.

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  • Headaches are quite a common effect of lupus, especially if u have APS (anitiphospholipid). If u haven't been diagnosed 4 this, there is a simple blood test they can do. I suffer headaches 98% of the time (although some ARE weather related, pressure & tension headaches) & unfortunately, apart from medication, there doesn't seem 2 b alot they can do. Sometimes they r just niggly 1's that sit in my head & I just know the slightest thing is gonna set them off, other times, they will floor me 4 days & I can't do a thing but lie in bed. Ask u're GP 2 send u 4 a scan & MRI just 2 rule out cerebral lupus 2 b on the safe side.

  • How do they test for cerebral lupus, do you know? I have been tested for APS and I don't have it. My headaches used to take a day here and there but lately they are, as you said, flooring me for 4-5 days at a time. It doesn't help that I'm coming down from 7.5mg to 5mg of steroids. Thank you for your help.

  • I was tested 4 it in January but despite it coming back negative, my neuro said although it isn't cerebral, it HAS affected my nervous system (which in term effects u're memory, motor skills etc). I had hallucinations, sever mood swings etc as well, that's why they suspected it. I had a lumbar puncture (which went wrong, typical lol!), an MRI, ECG, EEG & brain function scan. Like I said though, headaches r still common with lupus. It's not something that's really talked about but after doing some research a few years back & talking it over with an immunologist & my Rheumatologist, I have found that by having a small amount of Botox in my forehead every now & then has helped tremendously. It COULD merely b coincidental but it works 4 me. Just a pity they can't prescribe it as it's so bloody expensive :0(

  • It is so annoying when a label doesn't fit the symptoms but the symptoms are critical nevertheless and because no label is attached to those, they are discarded. I don't want to get to the point of losing my memory or mobility just because I could have done something early on but the doctors haven't focused on it. I don't really care what they call it as long as I get some form of treatment, if not to cure it, at least to control it. My rheumatologist says that my lupus is a mild one without organ involvement. But I constantly suffer with numb hands, sometimes facial tingling, severe headaches with my vision in the left eye becoming impaired during the headache attacks, I also have Livedo Reticularis, all pointing to neurological involvement that will affect my brain in the long run if in not doing something about it. I could shout at my rheumatologist sometimes when he is telling me there is nothing to worry about, I'll be fine.

    Sorry for the rant, it is the worry, thank you for your response.

  • Rant away my lovely, just make sure u show u're Rheumy some of that feistiness ;0)

  • I didn't realise the headaches could implicate more serious things, I thought they were all just part of the picture. I find headaches one of the most difficult aspects of this disease. I can work around lot of pain and other symptoms but when it's a bad head day, I can't tolerate much at all. I will mention to rheumy though in case I need further checks

  • my intention was certainly not 2 worry any1, headaches R usually part & parcel but we all need 2 b aware of what COULD happen, this is not a 'Text Book' condition & I think we're all aware that lupus doesn't 'play by the rules' as such. I've always suffered with headaches but it's only been in the last 2 years or so that it's affected my neuro system, but I DID have other symptoms too such as visual/audible hallucinations, sever mood swings, sever paranoia, the feeling of things touching my, crawling on me etc, tingling limbs, suddenly falling 2 sleep, passing out more often...list goes on so don't panic so much about headaches, just be aware.

  • I use to have headaches everyday, all day, then they got shorter and then I realized that they were a lot less frequent and put it to the Plaquenil. Everyday there are jabs but usually only last about ten minutes then gone. If I get over tired or spend to much time outside or even sit by window to long then headaches are worse. They start with jabs to eyes and orbital area (left side usually) and then expand to temple and rest of head, but more left side. I have shown up to Dr appointments (after 2 hour drive) with flush, bad headache and high blood preasure, without to much feed back from doctor. He says, "we will have to watch that blood preasure", and that is the end of that subject. I know they can be caused by high blood preasure, but I check and I can have same headache with very normal BP.

  • I have either slightly elevated or slightly reduced blood pressure when I have these, I doubt they are caused by increase/decrease in my case. It obviously affects my vision, it is like I have a film over my left eye, but ophtalmologist found nothing wrong with the eye itself. Thanks for sharing.

  • I am going to put a photo of headaches i think might help look for it if i can up load it correct on my blog

  • I've been suffering from all kinds of headaches since I was 7 years old. The only time I was headache free was during pregnancy... (time to get pregnant again!!) I've been taking so many different painkillers that now my headaches don't respond to anything. I am positive for anticardiolipin but I don't have a typical APS. I spoke to my friend who is a neurologist in Switzerland and specialises in inflammatory brain conditions and she said that if there is mild inflammation of the brain caused by SLE they usually don't do anything with that and wait for the flare to finish. In severe cases they use high concentration steroid pulses. That's why rheumatologists rarely check for inflammation of the brain, as in most cases they will not do much about it.

    For headaches that are not related to encephalitis she recomends tripple daily dose of magnesium and if that doesnt reduce the frequency of headaches then you can try a mild antidepressant.

  • Totally agree with the pregnancy thing, despite them saying it would probably cause me 2 go in2 flare & this & that I have never felt better than when I was pregnant & 4 about a year after each pregnancy. Don't think I could cope with more than 2 kids though so that knocks THAT plan on the 'ead ;0)

  • That's interesting, I never thought of magnesium as helping with the headaches. I've been suffering with headaches for some time too but those were mainly tension headaches. The recent headaches are different, hence the concern about brain inflammation. Thank you for the response, v useful.

  • Hi All sorry to but in but reading this post has made me a little shocked to say, i currently have a headache nearly every day but have put this down to working with computers, i also have experienced the tingly sensation in my legs and get mega mood swings but that's mainly time of the month lol, do you think the lupus could be affecting my head? i do go for regular ye tests etc though.

  • Please don't panic, if you have a 'normal' headache that you have now and then and it is similar in nature with what you used to have before you've been diagnosed, it is more likely that it is just a simple headache caused by tension or stress etc. If you notice a difference in intensity or if it appears in different parts of your head to where you had before, then you might want to ask your rheumatologist about it. As for the tingly sensation in your legs, many things could cause that, it all depends on severity, duration, connection to other symptoms. Do mention it to you doctor so that there is a record of it and try yourself to make a note each time you experience the tingling, that will give you an idea whether it is something you should be worried about.

  • Hi Thanks for this, ive always suffered with headaches and do get them regularly which i do put down to stress, which is often due to this illness, and i also get alot of migraines and this again has been normal, as for where the headaches are its mainly around my eyes or i get them on the right side of my head, i don't tend to take anything unless i get a full blown one. so you think just generally keep and eye for symptoms that worsen? thank you that has put me at ease.

  • Believe me, when I say mood swings I mean really severe 1's, nothing like a hormonal 1's & the pins & needles is quite common with a lot of secondary conditions such as Raynauds ;0)

  • I suffer from IIH which is increased intracranial hypertension of the optic nerves. I have had pappiladaema and pseudopapilladaema. I have just tested positive on the ANA test and my ENA shows a whole bunch of antibodies and it too was strong positive. I am now suspected lupus and actually getting more tests back tomorrow.

    Have read about a link between the two - it's worth getting headaches that are severe and reoccurring that don't shift with Panadol checked out. IIh Headaches can cause vision problems. It's worth seeing an ophthalmologist. My last headache lasted 13 days 24/7.

  • I agree, I went to the ophtalmologist very quickly after the second bout of headaches like these. All is fine including pressure etc, so search for cause goes on, I'm waiting to be referred to a neurologist. What have you been prescribed for yours?

  • Migraines/headaches and clusters that go on for some days are a common symptom of SLE but just because you have them doesn't mean there's anything more serious going on (such as Hughes syndrome or vasculitis) and, yes, I have seen a Neurologist. Lupus can affect connective tissue in the head and brain along with anywhere else in the body - the brain only has limited ways in which to respond, the most common being migraines/heaches and depression. Because of my background in psych, it's an area which has always interested me, and especially because I've suffered the most appalling migraines with visual disturbances and nausea since I developed the disease. I know they're initially frightening and of course extremely disabling but unfortunately come with the territory. Try not to stress because that will only make things worse - concentrate instead on discovering what medication will help you through them. Hope you find some relief soon. x

  • Thank you, I hope so too, at the moment I have shooting pains on my left side of my head, they are worrying.

  • If it's any use, the best remedy I've found is valium, which relaxes muscle spasms in the head and neck that cause most of the pain. If I catch a migraine quickly enough (ie. before I start vomiting), half a tab (2.5mg) will usually nip it in the bud but, if not, 5 or 10mgs will help me sleep it off, depending how bad it is. I've also found treating migraines with valium will normally prevent the days-long clusters some of us seem to be blighted by. Obviously a drug that must be used as sparingly as possible - GP's won't normally prescribe it unless directed by a Consultant but you could ask for a limited number to experiment with.

  • Hi I have had SLE & APS (diagnosed since 1992) which has shown itself in many different ways, but a more recently, really really bad headaches. I suffered with a headache every day for just over 2 years, taking many, many pain killers from tramado, diahydrochodiene (spelling?) ibuprphein all on a daily basis. My hadbag was always full of medications for my heacaches, I was known as a walking chemist and always taking one pain killer or another hoping to get some relief from my all consuming headache. I was refered to a neurologist etc., combined with my lupus specialist I was weaned off all the meds and put on amitriptalyne and yes , they are much better. I still have a fog head on a daily basis and still have some mild headaches, break through headaches but more ( what I would describe as normal). My life has improved 10 fold. I have been told that lupus suffers who also have APS could also suffer with 'Cerebal Hugh's Syndrome which is bad headaches, brain fogg, memory loss etc., Though I find it also affects my balance and the equalibriam in my brain and sensory awareness ( I am hypo sensative). Hope this info helps some people and sorry about the awful spelling!!

    If you look on Utube and search for Cerebal Hugh's Syndrome a lecture will come up about it and its worth watching it.

    Good Luck :))

  • Many thanks for pitching in with your experience, I have the same head fog and my memory has started to be affected, I'm having my blood tests redone to check for APS, till now that came back negative. The problem is that doctors tend to deal with advanced stages of an illness, rather than prevent it getting there, so if I have certain symptoms but my blood tests are fine, I'm just being sent home with a pat on the back and suggestion of suffering from anxiety. I find it short sighted in this day and age to focus on critical stages rather than prevention but there we are.

  • it can help 2 learn 2 differentiate between the TYPES of headaches, eg, if it's a pressure headache, tension headache etc. I know when I have a headache, if it hurts when I put my finger on my jaw bone at the bottom of my ear & it hurts more when I open & close my mouth, I know that 4 me, this is a 'normal' headache. Get some Tiger Balm, sometimes that seems 2 b the only thing that works 4 me. Check out these links, they may help ;0) headachetest.co.uk/headache... health.com/health/gallery/0...


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