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418 Views 11 Replies 9 Participants Last post by  BigSis
Hi all

I dont know about anyone else but since being diagnosed with having lupus i have suffered severe headaches everyday. I wake up with them and go to bed with them. Does anyone else seem to suffer with bad headaches? if so have you foung anything that gets rid of them effectively. Pain killers do not seem to shift them and my rheumy just told me to put up with them basically.

laura x
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Hi Laura, I am sorry to hear that you are suffering with daily headaches:worried:. I know exactly how you feel.
I used to get daily headaches and migraines with aura 2-3 days per week...very depressing !
Since being put on 150mg of asprin a day i am pleased to say that nearly all of the daily headaches have gone and i only get migraines every few months:)

Do you have Hughes Syndrome/APS ?

I tried almost every medication possible and have found that for me aspirin works:)

I would suggest that you do not take daily aspirin before consulting your GP first though because it does not suit everyone.

I hope that you feel better soon Laura, take care x
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Hi Laura,

I'm one of those that suffered with daily headaches for years so I know exactly where you're coming from.

The problem is that there coud be many reasons, including APS which Sarah mentioned. Headaches should be taken seriously in that the causes do need looking into even if, in many cases, the causes may not actually be clear.

My headaches were mainly dealt with by the neuro. She did an ECG, an MRI and certain bloodtests to eliminate any "sinister" cause.

There are also such things as "lupus headaches" which it seems is what I get. The better my disease is controlled, the fewer headaches I get.

I found that prednisolone improved my headaches when I was first put on it but that effect wore off and the headaches came back though not as badly. The neuro then put me on a low dose beta blocker as that can sometimes be helpful as baseline migraine prevention. That did work but most importantly, when I was put on imuran and my disease activity lessened, the headaches went away for the most part and I no longer take the beta blockers.

I still get them if I'm having a bad day or going through a slightly bad patch like now but most of the time they can be controlled. Finding the right painkiller can be rather trial and error. Simple paracetamol does nothing for me however paracetamol "plus" (with caffeine) does the trick very well - not great to take just before going to bed. I also found that a paracetamol/aspirin/caffeine mix worked but as I already take daily aspirin (100mg APS prevention) taking extra aspirin wasn't advised for the effectiveness of the aspirin.

It may take some time to find an answer but no-one should have to live with daily headaches. Please see if you can get a referral to a neuro and work with him/her to find a solution.

hope that helps,
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Hi Laura

I am glad you posted this question as I was about to!

My lupus headaches have come back recently as part of a flare I am going through. Last time I started prednisilone it got rid of them really quickly but I started on pred again 3 weeks ago and I got three days relief and back came the headaches. They are as you describe - I wake up with them and go to bed with them, occasionally they clear during the day as pain medication helps but does not get rid totally. In my case it is accompanied by a sensitivity to light and noise. I would not describe it as a migraine as it is not one sided and I don't get the really sharp pain of migraine really, more a heavy, very painful throb at the front and sides of my head. I also don't get any aura or flashing lights etc. I have had migraines in the past but not in this current flare.

Katharine has said a lot of helpful things I agree with. Aspirin does help me and I have to take it daily to combat the APS. Coffee in the morning helps a bit, I take it with my morning aspirin. I don't drink coffee or tea after that though as it does not suit me like it used to, just water or herbal tea.

I see my rheumy this week so it is a question I will raise. The trouble with lupus as it affects me is the wretched symptoms change and move about. But I know he sees the headaches (and anxiety and depression and noise and light sensitivity) as probably part of mild CNS lupus + of course the APS. I also have sjogrens and read somewhere that headaches can occur with that but now cannot find the reference.

I will let you know what my rheumy advises and I do think you should talk to yours. It is almost impossible to function with a headache, I am hardly bearing to look at the computer screen even though it is turned down to low light and the slightest noise in my flat jars right through me.

Hope you are in less pain today.
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Hi All,

Me too with the all day every day headache.
I have, like Katharine been investigated for anything sinister (MRI) and have experimented with medicines, under supervision, to no avail.

They have been better lately but the muzziness and inability to think as clearly as I would like to persists.:worried:

I'm seeing my rheumie on the ninth and am determined to spend my brief alotted time discussing this.

Perhaps we should come back together after our respective appointments and compare notes.
Living with a headache takes the shine off stuff and that permenent sun-dazzle is a real pain.
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Hi BigSis

Will definitely report back if I can get some help from rheumy. too have had full neuro investigations and MRI but apparently nothing wrong with my brain then! Not sure my partner would agree :rotfl:

thankyou all for your replies. For a while i was starting to wonder if i was imagining having a headache everyday as i thought it was surely impossible. I am definitly going to be more persisitent with my doctor when asking about headaches as up till now he has just told me they are a part of the lupus and that it. I hope everyones appointments go well. Speak soon

Love laura x
Hi Laura,

Yes, I have had daily headaches, that worsened over time. I have finally, been diagnosed with Migraines, and put on Tryphans.

My neuro made this diagnosis. There are a number of these meds, so if you need one, and one does not work, there are so many others to try, and choose from.

I hope you feel better soon, Laura.

Well, well, well. I find this headache business most interesting because I (not yet diagnosed, just under investigation for lupus) have been getting headaches during the last few months. Now, I've never been a headachy sort of person (apart from one massive hangover in my long-gone youth!), in fact, I would go as far as saying they used to be a rarity in my life. At the moment, I generally wake up with a headache which abates somewhat during the day but is enough to let me know it is still there. Yes, very interesting. Perhaps all part of the larger picture. It's like a jigsaw coming together, isn't it?

I had h/a also before starting my Imuran everyday just like you said all day waking up with them going to bed with them, but the Imuran seems to have relieved them, I did go to my PCP before and he gave me some migraine med for help until the Imuran kicked in, I still get h/a now and then but not every day all the time unless I'm having a bad bad flare.:mad: I also have APS.
Hi Laura,
I don't get headaches everyday like you do, but I get them quite often and if I don't stop them as soon as I feel one coming on, it turns into a migraine. I have tried everything that's non-prescription and have found only one thing that works: Excedrin for migraines. I'm not sure where you live, but I can't get them in Canada. I buy them when I'm down in the US and try to stock up for a couple of years. It might be worth a try. Hope you find relief!

Take care,
Well I saw my rheumy to discuss my horrible head.

He is a bit puzzled. Pulled out my Aps test (apparantly I've had several done.....I didn't realize!) and all have been negative 'sept one mildly positive.So.... not that then.

His suggestion is to taper the pred since I've been on it for a year and my bloods have been stable and my joint pain is ok just now.
If the headache is helped by that then all well and good.
If it gets worse then will consider metho or imuran.
Bloods and next appointment in three months as usual.

So........we'll see.
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