I'm having a really bad run of migraines at the moment, they have always been a problem but they have been worse lately.

I feel like I'm never really free of them.

I can't think of anything that has changed, that could be causing them.

I've suffered all my life, but my rheumatologist believes that they are caused by my lupus.

I take zomig, which works but although I can function, they leave me feeling mussy and stupid.

I know that mycophenolate can cause headache, but the increase doesn't really tie in within time that I started it.

Any advice appreciated 🌼🌺🌼

62 Replies

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  • Hi creaky,

    Have you had a referral to a neurologist to be investigated further?

  • Hi Paul,

    I did once before, years ago, I had an mri scan, nothing found, he prescribed me zomig, this was long before my lupus diagnosis.


  • Should also say that I once had an episode, where I had the most excruciating head ache and got admitted to hospital ? haemorrhage, I had a ct head scan and a lumber puncture at that time, nothing found and it was put down to a reaction to methotrexate.

    I have my doubts, I think now that it was a lupus flare.

  • πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£

    Hi Creaky;

    I can sympathize with you, I have headaches daily. However my doctors have told me it is due to the medications I take. I take 22 medications a day, and the number 1 side effect for each of them is "may cause headaches"!

    I have mild days and then I have bad days, but the best it gets is a dull nagging pain. I do have some medicine they gave me but, I can't stand the way it makes me feel, it's like I'm here but, it all a dream feeling. So I put up with the headache instead of being out of it! I do use over the counter Goody's headache powder for the bad days.

    I know this didn't help much, but let you know I'm thinking of you, and your not alone with your issue.

    Wishing you the Best!


  • Sorry to hear that you are suffering too Tiras, I've never heard of goody headache powders, I will Google that.

    Yes I take 25 pills regularly, it's hard to see the wood for the trees sometimes, but I go though phases with these migraines, and I hate taking zomig because it makes my joints stiff! (something I really don't need)

    If I don't take it I can't function for days, pounding head, vomiting and impaired vision.

    Hope you are having a good day,


  • Hi, I believe that a leaky gut causes histamine intolerance and then fermented foods release histamine and we can't digest it, and then voila a migraine. Although chocolate is also one of my offenders, anything fermented, like cheese or freshly baked yeast breads sets off my migraines.

  • Hi, thanks for your reply, I wish I could identify triggers, business done extensive exclusion diets over there years, and the only thing I'm certain about I caffeine and pineapple, which I avoid.Its a shame about the pineapple as it can be good for joints.


  • Good question creaky: and me too...I've been managing ghastly severely debilitating migraine-like headaches from my earliest childhood. I feel certain these are related to my infant onset lupus...and I agree with Hayley because my whole GI tract has always been affected by lupus and my migraines do seem to flare alongside my GI flares (not always, but much if the time)

    I also feel migraine flaring when am adjusting to new meds. Equally, migraines can get going when am over tired & under strain

    As these migraines you're experiencing is breaking your usual pattern...keep a log on them...do discuss this with your GP & rheumy ASAP...eg myco can be hard on some patients' GITs

    For what it's worth: one thing is especially revealing:.in my v early 20s a GP gave me the powerful prescription NSAID mefenamic acid 500mg (ponstan forte) for nightmare endometriosis period pain. Blow me if mefenamic didn't stop my migraines in their tracks (I discovered thus by coincidence). Mefenamic, turns out to be prescribed sometimes for migraines under certain circumstances. Well, clearly that means mine! And this indicates something about the type of inflammatory process is involved in my migraines. Over the decades, I've been on prescription NSAIDs of various types long term for spondylosis: none of these have ever done much more than turn me into a zombie. And none stopped my migraines. Also, no OTC headache meds or complementary stuff stop my headaches. Without mefenamic, I just have to lie down with earplugs in and the curtains drawn. So far, no medic has hypothesised re why mefenamic stops my migraines...but I suspect there is a dynamic between my version of immune dysfunction + connective tissue disorder & mefenamic.

    πŸ€πŸ˜˜πŸ€πŸ˜˜ coco

  • Interesting Coco,

    I too was given mefenamic acid for period pain years ago, I don't remember it helping migraines though, I take lodine regularly now and that cercertainly doesn't help, although it's the best nsaid for my joints.

    I keep starting a migraine diary, and then forgetting it, but I have started again today.

    It's definitely all connected with the lupus as my eyes have been really sore dry and sore and my feet are very painful again.

    The zomig works, and I can't function without it, I just hate taking it.

    Hope you are having a good day,


  • is there any relation between your migrains and periode times?

  • Not now, I had a hysterectomy 5 years ago.

    Years ago I used to get migraines at the end my period

  • sorry for that

  • No problem, thankyou for your help.☺

  • Hello Barnclown

    Just read your excellent migraine post and want to say I'm surprised none of your medics has said why mefanamic acid helps your migraines. It's an anti-inflammatory and works because migraines can be caused by inflammation of the blood vessels hence why we get them with lupus. X

  • You're so right & my medics + I do understand this. What no one understands is why, in particular, of all the OTC & prescrip NSAIDs i've trialled over the years, mefenamic is so hugely effective in my individual version of autoimmune inflammatory migraine (as well as my endometrisis pain). My medics agree this pos response to mefenamic in particular is revealing, but they won't venture an explanation

    I've researched the chemistry of mefenamic & learned something about its unique chemical character, which makes it so effective for some of us endometriosis patients suffering nightmare period pain + multisystem reactions to period pain. But mefenamic doesn't help all endometriosis patients with these issues. And I'm left suspecting some aspect of the autoimmune character of my version of endometriosis is similar to the autoimmune character of my version of migraines

    The detailed profiling investigations immunology has been running on me for almost 2 years now are going into such minute detail that my 3 monthly blood test print outs run to more than 10 pages. My suspicion is that somewhere in those pages there are clues to why mefenamic in particular is so effective in my version of endometriosis & migraine.

    Interestingly, last summer my Sjogrens cornea inflammation began to cause aching throbbing eyeballs...I decided to see if mefenamic could help, and YES: mefenamic can damped this down too (now my new ciclosporin drops are damping this aching down too phew). I've had this throbbing with migraines too...but now, for some reason, I get it without migraine symptoms..my opthalmologist seems to think this is due to my cornea inflammation worsening

    Just as we find that our lupus (or whatever immune dysfunction we're diagnosed with) consultants think the way we react to the chemical action of specific meds reveals lots about our individual versions of immune dysfunction, so I'm convinced that my pos responses to mefenamic could be equally revealing about my version of autoinflammation...but, so far, my medics aren't interested & motivated enough to look into this angle ...and because my lupus etc meds are helping me so vvvv much, I just don't pressure for explanations re me & mefenamic...but, someday, I have a feeling we may figure this out...


  • This is so interesting, Coco.

    I can relate to so much of what you are saying.

    The problem we face is, that we have a rare (ish) disease that seems to present it's self quite differently in each of its victims.

  • This IS it....and, unless we're unstable emergencies, the system can't see its way to playing True Detective as thoroughly as it might 😏

  • Hello Barnclown

    What an interesting reply you have written!. It is a puzzle why mefanamic acid does work for you and as you rightly thought and researched, it must be down to chemistry of the drug and your own bodies as well. I always thought NSAIDS had the same ingredients, particular substances to block the prostaglandins!. Since having chest pain that responded to a particular Cox 2 NSAID, celebrex, I can vouch for there being some difference in ingredients but unlike you I responded like others did as well so not a puzzle!.

    What I'm trying to understand so forgive me if I'm writing this wrongly is that I feel you are putting your health history down by keep saying, my version of migraines and endometriosis!. Migraines are very classic in their symptomology so I don't understand how you can say your so different in this way!.

    I so agree with you that it would be FAB if your medics would investigate why you react to mefanamic leading to an explanation of your autoinflammation and a better diagnosis!. The way we react to drugs is also determined by how many others we're on and our chemical make up. We are all so different. My Mum has just tried Amitriptyline 10mg for sciatic pain and it has made her so ill, she's had to stop it. Feels so much better. She takes very few other drugs so maybe body not used to them unlike me who could tolerate a much higher dose of the same drug!. It's such an interesting area if only doctors had more time to give to it!. You've certainly made me think as always. x

  • Grrreat reply dear misty, many thanks. πŸ˜†I tend to almost always describe my diagnoses of anything and everything as "my version" of whatever eg SLE, EDS, LS, migraine, endo...because at 63 I've run into so many others sharing my diagnoses but with such individualised versions of these diagnoses that our cases have many differences. I think that this variation will be more & more accepted as medicine becomes more individualised, which seems to be the way things are going fingers crossed!

    My understanding is that the many different types of NSAID have much in common, but also have their own particular special effectiveness so are classified accordingly. Eg Wiki says: Mefenamic acid is a member of the anthranilic acid derivatives (or fenamate) class of NSAID drugs, and is used to treat mild to moderate pain, including menstrual pain, and is sometimes used to prevent migraines associated with menstruation...(interestingly, I've learned on the HU endometriosis uk forum, + from another of our friends here, that endo can continue actively affecting us even after menopause...which in my case was early...so, maybe that tells us more about the persistence of my mefenamic-responsive migraines...THANKS MISTY: your thoughtful comments have made me think this through!πŸ‘πŸ‘πŸ‘πŸ‘)


  • Hi Barnclown

    I do admire all the research you've done to further your knowledge. It is interesting how there are these differences in symptoms between us sufferers despite having similar immune illnesses!. I too find it a fascinating subject and can understand sufferers of a particular illness sometimes being inspired to go into medicine!. I might have would you?. Your making me think too. Have a good day. X

  • Well said πŸ‘πŸ‘πŸ‘πŸ‘

    πŸ˜† my rheumatologist once told me she thought I have a very good grasp of the implications of my overlapping immune dysfunction & connective tissue disorders + their care...so I asked her πŸ˜‰ if that meant I could call myself Dr Coco? She laughed. 😏 Well, our PMRpro started to train as a medic & realised it wasn't for her...I feel the similarly about me...


  • I used to get them all the time. I had reflexology done just over year ago. I had my first bad headache/mild migraine last week. Really worth a try.

  • That's interesting Nikki I will look into that, I have thought about it before, but my feet are quite painful, I worry that it will set them off.

    I sound like a right moaning mini todayπŸ˜€


  • I had mine done on my hands.

  • Oh right, I will look into it.☺ thankyou

  • Can so empathise. Migraine has long been an issue for me too - 20 years before my Lupus was diagnosed. I've had a variety of scans, ambulance trips and been seen by numerous neurologists but I always feel they are stabbing in the dark. The first medication that reduced the severity and frequency somewhat was Amitriptyline, which has since been increased to aid the impact of fibromyalgia pain etc on sleep. The last 6 months however I've had persistent everyday headaches, pick-axe headaches, and migraine headaches consistently and I have been put on Topiramate Tiva which is an anti epileptic drug. This has made quite a big difference. I'm not completely headache free but noticeably better than I was. Obviously everyone is different but might be worth discussing with your GP as an option? I know just how horrible it is dealing with this on top of everything else. Other pain I can deal with and stay emotionally buoyant most of the time but head pain is pervasive and has this way of draining the joy out of everything. (I am also seeing a Bowen Therapist and I think that's helping too). Keep searching. Don't give up. Praying for answers. Xx

  • Mycophelonates in creases headaches and migraines? i have same problem and i'' talking mycliphenolate but never think that it could be just a side effect !

  • Thanks for you reply, I've been taking mycophenolate since February and the increase in my migraines is only in the last six weeks so I'm not sure if it has anything to do with it.

    My migraines were definitely better on azathioprine but it did not keep my lupus in check.


  • u means azathioprine did not control your lupus?

  • That's right, it didn't help my lupus much, which is why I changed to mycophenolate.

  • yes my immunologist told me that myclophenolate is stronger than azathioprine to control lupus, hope u feel better soon,

    i'm on myclophenolate 360 twice daily and u?

  • I take 850mg twice daily, it has helped my joints and my renal function.

    I have to take prednisone as well but long term the plan is to stop this.

  • Cell cept ? or Myfortic?

    to stop the prednisone u means?

  • Cellcept

  • thank u so much for your reply

  • Thankyou Tinksie ,

    I think I will have to see my gp, it's getting silly now.

    I will never give up, or give in ☺


  • Hi i have suffered with migraines since i was 5 always thought they were stress related as couldn't pinpoint any foods .lm also on the cusp of lupus and rheumatoid arthritis .2 years suffering and migraines getting worse.went to a great naturopath took blood tests found I'm not coeliac but close to it also have aversion to cows milk .cut these things out swelling gone down headaches stopped no migraines for three weeks no severe abdominal pain. May not cure u but might be worth checking out take .care

  • Hi creaky,

    I've had migraines for 10 years and Zomig has worked well for me. Every once in a while though they get really frequent (4-5 times a week). When this happens my GP changes my prescription to another type of migraine med. this seems to work, and then eventually I rotate back to Zomig, which I prefer. Also I assume you don't drink, but in case you do, giving up all wine/prosecco/champagne anything grape-related, not just red wine helped me considerably. Good luck.

  • Hi no I don't drink much, any nothing in the last 6 months, it's just not worth the risk, I'm trying to take care of my kidneys.

    I find the migraine starts again exactly 24 hours after the last zomig, do you get that?

    I've had imogren and maxalt melts on the past maybe I should switch as you suggest.

    I will see my gp.

    Thankyou for the advice.

    I feel almost OK now, after feeling like zombie all day!

    I start dreading going to bed, because I know I'm going to wake up with an ax stuck in my head.

  • Ugh! Nighttime migraines are the worst! I'm a novice at this chat room as I am awaiting my diagnosis on Monday--Rheumatologist has given me blood tests, immunology screening and X-rays. Top of the list to explain my various difficulties is Sjogrens, but could also be rheumatoid arthritis or lupus.

    Yes, sometimes I get another migraine the next day.

    I once sat next to a migraine specialist at a fundraising dinner. (Score!) She told me to always take migraine med as soon as you feel the "aura" of a possible migraine. DON'T wait to find out if it really is one. For me, I use the guideline that if twice the fleeting thought goes through my mind that I might be getting a migraine, I take my medicine. (This assumes you aren't on a regular daily dose of it.).

    I've had maxalt which I thought tasted terrible! You could ask your dr about Rizatriptan--related to zolmitriptan but a different family of drugs. Unfortunately, like with a lot of meds, the more you take one kind the more of it you need. So too with migraine meds. So it is good to switch.

    Finally, I've found that lying flat on my back on the floor and aligning my body evenly and just staying there for 5 minutes before bedtime helps relax me. Even tho I know migraines are swelling of the blood vessels whereas headaches are restricting of the blood vessels and associated with tension, I find that focusing on relaxation and eliminating tension spots really does help.

    Warm thoughts and wishes for a good night's sleep...

  • Yes vicchick,

    In an ideal world I do take zomig at the first hint of migraine.

    Somehow though, I sometimes try to talk myself out of it and pretend it's not happening. I have identified that this is how I deal with pain.

    It's a really unhelpful thing to do, but my dum brain seems to think that it will help.

    Also if I wake up with it I often miss that early warning.

    Anyway, this morning I woke early and realised that I still have that telltale feeling at the back of my head and at the first flash of light I took my zomig, and now I feel much better.

    I'm keeping a diary again so will try to get on top of this.

    This community is so helpful and supportive, I learn lots here ☺

    Thankyou all


  • See a neurologist and ask about Botox injections for migraines. They're known to keep migraines at bay for up to 6 months before needing to be repeated. The only side effect that I'm aware of is some tenderness immediately after injections.

  • Thanks for your reply, yes I've Been reading about this, sounds interesting.


  • Please do. My daughter has had very good results with this. Good luck.

  • Hi Creaky

    So sorry you are suffering with migraines, they are horrible!. Y ou have had some great suggestions to help which I can't add to, just wanted to say I hope you improve soon. Could your lupus treatment be adjusted to help?. I get them if I'm flaring so just wondered.

    All the best


  • Hi Misty,

    It's funny that you should mention flares, I have very puffy painful left hand this evening, so you might be right.

    Well at least worrying about my sore hand has taken my mind off my migraines ☺

    You are right I have had great advice and helpful comments.

    I feel lucky to have all this support, there such lovely people here ☺

    I hope that you are ok. πŸ’

  • Hi Creaky

    There certainly are some lovely helpful people on here!. I'm still flaring after having the flu jab eight weeks ago!. Hope we're both better soon. TAKE CAREX

  • Oh dear, I didn't have much reaction to my flu jab this year, hope that you soon feel better.

    The big new is that I actually wake up without a migraine today! πŸ˜€

    Fingers crossed I don't develop one during the day.

    Just feel washed out now.

    Husband has now finished decorating the Livingroom, so I'm going to put all the ornamental back and hopefully order some new curtains.

    That's the plan any way, but as usual it's subject to change.

    Have a good weekend.


  • Hi Creaky

    I do hope you succeeded yesterday in not having a migraine!. Great news. Isn't it strange for us how suddenly symptoms change and we don't know why. No wonder illness is so hard to live with!. Hope you like your new lounge, lovely having it put back together again. Hope you managed it as planned. Have a good weekend too. TAKE CARE. X

  • Two migraine free days now Misty, feels so good to be migraine free.

    Have a zomig in my jeans pocket just in case.

    ☺ πŸ’

  • Hi Creaky

    That's great news, long may it continue!. I had one instead yesterday but has been a while!. Hope you have a good week. XπŸ’πŸ‘ŒπŸ»

  • Oh no! I didn't mean to pass it on to you.

    Hope you are feeling better.

  • Hi Creaky

    Yes I am thank you, taking extra meds!. Hope I haven't passed it back to you. XπŸ’

  • No I'm still OK touch wood☺

  • Hi Creaky

    Fingers crossed that it continues for you. XπŸ‘ŒπŸ»πŸ’

  • I had daily migraines and was tested for APS, came back positive, so was started on steroids and daily aspirin. This stopped the migraines overnight!.

    Perhaps you could ask for a test? Hope you get some help soon.

  • check for mold anywhere in your home , walls, air ducts, a mold removal guy can test moisture levels etc...mold causes auto immune headaches etc etc etc

  • Hello creaky

    I can totally sympathise! I have suffered from headaches since my early teens. I've had all sorts. Been diagnosed with headaches due to eye strain when doing school work at secondary. Back in 2009 pre diagnosis I had one for 3 weeks and I slept with my jaw clamped shut and ground a tooth away in my sleep. I was told it was stress and prescribed diazepam. Migraine would then kick in if I was tired, hungry or not drank enough. They've been called headaches, migraine, cluster migraine etc. This year I got ice pick headaches - brief sharp stabbing pains in my head. So can't take pain relief for them as unpredictable. Also now this year started migraine with pain behind eye and in ear.GP says migraine with myalgia. Which is inflammation in the head? She says I have lupus with CNS involvement.

    I take ibuprofen and paracetamol during the day. Codeine at night when my husband is here and I'm not needed by the children to drive anywhere. Sumatriptan was prescribed but need to get put on repeat prescription.

    Been on hydroxy for 3 years. MMF since July 1g building to 3g. So far I don't think it's helping. Still get headaches.

    I didn't get headaches on steroids - 2 x 5 week courses over summer.

    I hope some if this has helped. Apart from the fatigue the headaches are the most debilitating symptom!

    Best wishes.

  • Also should have said I had a brain MRI recently to look for a cause for a cyst on my spine. The cause of the cyst didn't show up but the report says something like "bilateral tiny white frontal matter high signal could be caused by migraine". I am seeing a neurosurgeon about cyst on Wednesday and so he will seem this brain MRI and I'm wondering if he will shed any light on this area too. Best wishes. I hope you have a headache free day.

  • I get a lot of migrants from Lupus. I've bn having them for the past couple of days.

  • Hi, I hope that they improve soon, my bad run lasted about three weeks, followed by a big flare of my joint pain, I've had to increase steroids and pain relie for now.

    Take care, have a great Christmas πŸŽ„

  • I refuse to take that nasty lupus streroid medicine. Had me gaining too much weight and painful stomach pain and severe diarrhea. I stopped taking it.

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