Hi...I was just wondering how many of you suffer from headaches? I have had one for about a week now, nothing seems to make it better and it's always behind my eye. Before I was diagnosed I used to get headaches but no where near this bad. Does anyone have any advice on how to get rid of the pain? Paracetamol just doesn't work!! Thanks in advance, Rachael x

22 Replies

  • Hi Rachel, I'm in the same boat as you. I've been to the headache clinic and I have Lupus headache and migraines (I don't know which is which) and like you say paracetamol does not help.

  • Hi Rachel, similar to you I had excruciating migraine headache for years due to lupus and even when the lupus was controlled with medication my headache continued. I also had high blood pressure which I know contributed to the headaches. Paracetamols, Irbrofen no longer worked & I just assume it's another condition related to lupus. You probably heard this before but someone suggested I start taking supplements B12, vit D, vit c, particularly. In addition they suggested I also make and drink daily green juices plus drink at least 2 litres of water every day. Thought there is no harm in trying a different approach, I did just that & the headaches completely went within a couple of weeks plus my blood pressure was also controlled for the first time in 6 years without medication. I now have a near perfect b/p reading of 120/80. Everyone is different what worked for me might not work for someone else but there is no harm in taking a different approach. I am pleased to say I no longer suffer with headaches. Hope it works for you too.

    Kind Regards Glen

  • Thanks Glen I will give this a go. Anything to try and get rid of them, driving me nuts!!

  • hi ratchel I suffer from headaches all the time always behind my eyes and across my forehead . I used to have injections but the nhs stopped them ! .so I use gabapentin . Its the only pain killer I have tried which allows me to function day to day I refuse to give in to lupus and the unusual mystery symptoms that go with it good luck its not easy ..x

  • Hi Rachael. I find the headaches and migraines the hardest thing to bear because it makes functioning on a day to day basis so hard. If I can rest in bed it shortens it but often I can't with 3 young children. I normally end of using codeine and anti sickness meds but drinking plenty of water and eating/drinking healthily has to be good. I am having a better patch at the moment so it isn't bad all the time. I was put on daily aspirin last year by my Rheumy as he said although I don't have antiphospholipid syndrome lupus sufferers can have 'slightly sticky blood and therefore aspirin can help with lupus headaches. It really helped mine but unfortunately I've had to come off it as it worsens my asthma 🙄. Anyway, might be worth trying. Hang in there for the better days. 😎 X

  • I definitely have better periods. I used to just get them for a few days then I would go weeks without one. But I've had it constantly for over a week now and it's horrible. I will mention it again at my next meeting. Thanks xx

  • Hi Rachael...I too have headaches, in fact most days and nights. I've not spoken to a dr about them, maybe it's caused by Antiphospholipid syndrome which I have, but maybe not.

    For me, I take panadeine with a calmative but also caffeine....I drink a large pot of coffee in the morning and sip on low sugar Coca Cola during the day ...it def does help.

    This has gone on for years and I am sure it's inflammatory: Serositis affecting the meninges. I don't suppose it will ever truly go away, just abating the severity is my goal.

    Let us know if you get some relief.




  • Am somewhat similar to Penelope-Mary

    ...have been managing nightmare migraine-like headaches from early childhood....at first NOTHING prescription or OTC or home remedy helped (I tried lots)....just had to lie down in darkened, silent room for many hours. No consultant was ever consulted to refine GP diagnosis

    But in my early 20s I discovered my migraines were inflammatory by chance....because my GP prescribed me the powerful NSAID (non steroidal antiinflammatory) mefenamic acid 500mg (ponstan forte) for volcanic endometriosis period pain...and HURRAH by coincidence I found that ponstan was vvv effective: if I took just 1 tab at the vvvv first sign of migraine or headache, the pain never developed further, simply disappearing. If I delay taking a tab until the pain had begun to really take hold I usually have to take maybe 3 tabs in the course of 24 hours....recently I even discovered that a half dose of 250mg can be as effective. I always have followed mefenamic instructions to only take it with food in my stomach (eg I eat several biscuits, or whatever I can tolerate + a strong cup of tea for the caffeine, and then take the tab). But no doctor ever investigated my migraines...my GP just put mefenamic on my respects form

    When my infant onset lupus diagnosis was recovered 5 years ago in my mid 50s, my lupus clinic accepted my migraine-like headache description, and strongly advised me to be vvv cautious about making sure my stomach wasn't empty when taking mefenamic (For decades I have had chronic gastritis & oesophagitis) and advised me to take a PPI when taking mefenamic. On reading the mefenamic leaflet again, I found it advises caution on prescribing to SLE patients.

    The NSAID Mefenamic is mainly prescribed for endometriosis pain, but it is also prescribed for migraine. My medics agree that my headache symptoms do appear to indicate these are migraines, but I've never had to be formally investigated because mefenamic has always helped me so much

    🍀🍀🍀🍀 coco

  • A couple of you are saying about makung sure you drink lots of coffee plenty of caffeine.

    Confused i thought caffeine made headaches and especially migranes worse. Is tgere sonething i am missing as i too have bouts of terrible headahes that last on and off for a few weeks at a time maybe a few hours with out.

    One was defo migraine related didnt like the light went to bed few hours later all better all the rest feels likelike someone's poking my eyes out pain behibd eyes forehead and all over top i keep wearing sunglasses even when its raining everything is too bright. Neck pain, back pain and numb patches in lots if places all over body. Arthritis giving me real grief. Sorry for list but there is just a few of my symptoms

  • You're right! I'd never drink lots of caffeine! But if I feel a migraine coming on I do drink a good cup of tea when I take my migraine meds...I forget the scientific reason, but in carefully judged amounts caffeine is useful for certain symptoms.

    My migraine symptoms are very like yours. They are dreadful. And yes I am vvv careful to avoid caffeine

  • Hi, I constantly get eye strain headache too. The GP says it is because my sinuses are so bunged up. After a course of antibiotics, it clears up and headache resolves. However, you can't keep taking antibiotics, so now they have given me a nasal spray which actually has really helped with the decongestion and eye strain headaches. I get fewer headaches and only when I am really exhausted and run down. Before, I was getting them weekly! Hope this is of some help. Renu XX

  • Hi. I suffer from headaches, some are really bad. I usually put a bag of frozen peas on the pain and it tends to go

  • Hi Rachael23,

    Headaches are a common symptom of lupus. They may be a part of the lupus itself or may be associated with a clotting condition called antiphospholipid syndrome. They may or may not have a migrainous element with flashing lights and visual disturbances. In any patient with lupus who suffers from headaches a systematic search for known causes should be carried out including blood pressure checking and, very important, an examination of the blood for antiphospholipid antibodies ('sticky blood') and ultimately, if indicated, a brain scan.

  • I have exactly the same issue. I put it down to artificial lighting, as it eases a little at weekends. Let me know if you find anything that helps!

  • I'm struggling with headaches daily at the moment. I had very severe light sensitivity in the Spring and my rheumatologist increased my mycophenolate dosage. My headaches seem to be eye or ear related. I seem to be getting fluid in my ears when in the sun.

    My GP said the headaches might be a side effect from the dosage increase.

    Any thoughts? Any one else have that?

  • Hello. I understand your pain. I suggest you tell your doctor. I always had headaches and migraines. In June of 2001 I had a migraine every day for 3 months. I thought it was from stres, I had lost my mom 3 months earlier and I was a supervisor at GM where we produced/built the Blazers. I was at work one day and heard a pop inside my head, a pop I heard a few months ago. I got sick and several things happened. They rushed me to the hospital where it was finally discovered that I had a rs cerebral aneurysm and my family was told that I would not survive. GOD had a different time as to when he wanted me. Please have it checked, it couldn't hurt. Good luck and many Blessings.

  • I have always suffered terribly with migraines and am on beta blockers and finally found a migraine medication that can help if I take it quick enough, sumatriptin, have tried lots of other things some have worked for a while and then stopped so I think it's something that I have to keep an eye on and adjust medication to fit with symptoms x good luck x

  • Hi,

    I need more detail than you give about your headaches. When a headache is described as being behind one eye, it is usually an ocular migraine.....which can last minutes, hours or even days. A true migraine can get some relief from an opioid (narcotic), [migraines are NOT treated however with narcotics], however a Lupus headache is not helped by taking a narcotic. There are many ways to treat and/or prevent a migraine; i.e. imitrex, sumatriptin, certain antidepressants and beta blockers etc. Studies have shown that the vast majority of headaches that Lupus patients have are not as a result of having Lupus, however after about 10 years many Lupus patients will complain of headaches. The odds of you suffering from a Lupus headache is very small, it is most likely from a migraine, cluster or tension headache.......and rarely does acetaminophen help any of these. There are better medications out there for each of these types of headaches......ask your Dr. for a diagnosis of your headache and what is the best treatment for it. If it is truly a Lupus headache, there are various meds to try as well.

    Good Luck,

    Dr. S. (in USA)

    P.S. I am a retired Neuro-Ophthamologist

  • I suffer from daily headaches, too - sometimes they are migraine headaches. I just had Botox injections in my head. The doctor said they are having very good results after 3 treatments. I'm hoping that will be true!

  • I to have shooting pain headaches they used to be vvv painfully but seemed to disappear when I was put on antidepressants I recently came off them and had my first stabbing headache last week, always on my left side going from my temple through to my eyesores., I also notice that the vein there tends to stand proud when this happens. I am considering going back on the antidepressants if it continues, you have my sympathy as it is extremely painful, sorry I haven't any helpful suggestions

  • Thanks Dr. S for your info. I had menstrual migraines prior to lupus, and they subsided w/ menopause. They have now returned at the beginning of each major flare and are helped with prednisone. . I also have had constant, non - migraine headaches with every medication I have tried in the past 2 + years for my lupus sxs( diagnosed 3 yrs ago), including methotrexate, arava, benlysta , and now simponi aria . All of these headaches have been debilitating and unrelenting, and not responsive to much of anything - just wear out when the medication levels fall. i am becoming reluctant to try any more new meds! I agree with others that increasing hydration levels, eating well, avoiding any known triggers are worthwhile to try - certainly good for us anyway. Good luck to anyone with this extra affliction- it just adds insult to injury to our already difficult times.

  • I am sure you know already that almost every med can have side effects and unfortunately headaches can be one of them. To try and get some immediate relief I asked my Dr. if he would not mind giving me a 2 day supply of vicoprofen (it is a combination of ibuprofen and hydrocodone-the hydrocodone is VERY addicting). I retired early due to Lupus......I was blessed(?) with all 3 types, SLE, Discoid and CNS.......I too suffer from constant headaches and overwhelming fatigue. I prescribe nothing for myself, my Rheumatologist does it all.

    The real help for my headaches came from another Dr. that also suffered with Lupus, she is still practicing and I asked her how she does. I was stunned by her answer. She is on a very strict organic Paleo diet. It has helped me tremendously; my headaches are less severe, my joint pain less severe but the overwhelming fatigue is still there. My ESR, ANA and DS-DNA are all much lower and my complaints are less.....so it does help. I don't know if it will help others, but it helped the Dr. that put me on it and it certainly has helped me.

    This is a difficult diet to start and stay on, but if you get relief it is well worth it. This is almost a perfect way to eat to keep your entire body healthy......but it is hard to stay on.

    Ask your Dr. what he/she thinks about you trying it.....he/she may have reasons why it is not for you. ONLY YOUR DR. KNOWS WHAT IS BEST FOR YOU.

    Good Luck,

    Dr. S.

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