I have had this headache for two days now. I say headache, but it feels like my head is going to explode, such is the pressure and pain. I've had lupus headaches before, but they have always responded to pain meds. This isn't. I also have a ringing in my ears and my carpel tunnel in my hands is pretty bad. Should I be worried? Nothing seems to help....

14 Replies

  • Hello. Headaches are hard to deal with aren't they. I have had some nasty ones with my lupus too. In January this year my Dad was terminally ill and I was coming out of a flare - I had a headaches on and off - mainly on, for 3 weeks. I would wake up with it which was the worst. It didn't go with normal pain relief. I had to go to the doctors and get a prescription for Migra Max. They were called cluster migraines by the GP. Luckily now, I'm out of that big flare that lasted for months - 9 months into the hydroxy and headaches are back to the odd one here and there. I hope you find something that works for you, but a trip to the doctors is probably needed. Good luck and best wishes.

  • Thank you for replying. It's still as bad as it was yesterday morning. I think I'll talk to the doc tomorrow.

  • Thank you Wendy39.

    I've been recently diagnosed with lupus SLE and I also have sickle cell. I've been waking up with headaches and had no idea that they could be related to my lupus and your post has promoted me to visit my GP.

    mainlyconfused, I wish you better very soon, as I know exactly how you feel xx

  • I've been having the same problem and was begining to think that I was being ignored but finally after 8 months of end to end headaches I have been referred to the headache clinic for acupuncture!

  • I suffer badly with headaches and my ears also buzz whilst my vision blurs. I tried every pain relief I could think of. It wasnt until my rheum prescribed a short course of steroids that it has gone for a while at least. Maybe chat to your rhem about meds. Im presently on methatrexate and have only had three, two to three hour, bouts of this headache and accompanying symptoms from starting this medication.

    I so sympathise though. This pain is so hard to explain to others and its relentless nature wears you down. i personally use a soak in a warm bath and then lie in a darkened room.

  • I would go to the GP as soon as possible. It could jsut be Lupus related or cluster headaches or something but a headache lasting more than 2 days that doesn't respond to regular pain killers needs to be checked out.

  • I would take a visit to the gp, I was diagnosed with lupus 14 years ago at 18 after 3 years of an illness called benign inter cranial hypertension (a build up of spinal fluid). I believe the 2 are connected & when I have a flare this seems to build up again and I get the tight headaches with blurred vision & whooshing noise in my ears, it usually settled itself though and I've not had to have any treatment for it for around 7 years. x

  • Mainly confused....the past two days I have been extremely dizzy on and off and headaches, calf and leg and foot cramping bad yesterday...I am taking a wild guess and feeling it's mineral deficient problems. Not sure...don't take my word for it. I am doing my own research and development on myself. Took a multi mineral for two days...felt better, but headache again last nite. Took vit c and zinc and less dizzy this morning and no foot cramps. Wonder If anyone else notices this pattern or has tried this. Why are minerals off? I need to do some more research. Not sure if this is where headaches come from or I am just getting lucky. Hope you feel better....

  • Thank you for that. I finally feel better tonight. Never felt anything like it before.

  • All of you guys and gals should have iron panels run on your selves to rule out iron overload (hemochromatosis) which can cause the worst headaches you can imagine. Hemochromatosis is not the cause of all of our health problems, but very many of them, and finding that too much iron in your body is the cause of those headaches and getting the relief from those headaches from the simple treatment for hemochromatosis is astounding. See my web page to see what I am talking about at ibs-hemochromatosis-fibromy....

  • Very interesting!!!! My mother had low iron and was on iron pills. My cousin too. I thought I might be low on iron not high...I will have to tell my doctor that I am seeing in a couple of weeks to review my bloodwork. He thinks I don't have lupus even with a positive ana.

    This is real science man!!! And not easy....I need a scientist i think...

  • Thank you all very much. It's so good to be able to talk about it on here. I often feel like bad for complaining to my friends and family. I can almost always take my meds and get on with it. But this headache was awful and I still have the ringing in my ears. The weird thing is, my GP said my bloods show my lupus isn't very active. Is it possible that the headache could be lupus related even though my Lupus isn't flaring?

    Thanks again all. X

  • Hi i know exactly how u feel .they are horrendous my eye twitches when i have them an i carnt stand bright light .I am also really worried as my pain specalist is retiring and the only treatment that helps is being stopped not classed as a nhs treatment so back to square one with non understanding docters ....hope u feel better soon ..or as well as we all can be ..xx

  • Thank you. Have an appt in a few weeks to discuss it.

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