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I have SLE,Discoid lupus, fibro,liver problems, leukopenia.

Apart from all the obvious symptoms the above cause, I also get severe intractable headaches. They come with no warning, they are very debilitating, and can last from 3 days to 11 days.

They seem to have a mind of their own! There are no triggers and they are not migraines, although I do take IMIGRAN INJECTIONS to make them slightly bearable. My GP has prescribed me liquid morphine so that I do not have to go to A & E whenever the pain is unbearable.

Does anyone else suffer with headaches like this?

Many thanks

11 Replies

Oh yes, always on the right side of my head and knock me of my feet for days. The pain sometimes makes me sick and that in turn makes the headache worse. My gp is trying to sort out some treatment for me but most of the medicines available will interact badly with the multitude of other medications I am on. I have tried allsorts of remedies and to figure out any triggers as yet no success. Take care xxxxx


Yes, I have tried everything going, and over the years have found no triggers! My rheumi has recently agreed that they are due to the lupus, after me telling everyone that they are not migraines!

Without IMIGRAN injections and morphine I would spend most of my time down a and e.

Listen to what your body tells you, and I hope you find something soon.

Ps- have you tried IMIGRAN ? Take care xx


Hi, I suffer from terrible headaches just like you describe and in the past tried every migraine medication with no success. My GP then did some research and came to the conclusion that it was not migraine but rather they were caused by inflammation due to my MCTD. She then prescribed 2 different tablets to be taken together as soon as the headache begins, Zolmitriptan tabs 2.5mg and Clotam Rapid tabs 200mg, and they work! After years of these awful episodes when I would often end up in hospital and have had to miss holidays etc, they are now controlled. I take the tablets and go to bed as they make me sleepy and after a few hours it's gone, they are quite strong so I feel a bit dopey for a day or two afterwards but I can deal with that. Hope you get sorted out too. 😄


Hi there. Yes, I've tried both of those that you mentioned, but didn't work :(

Luckily I have a great GP, and when she saw how many times I was ending up at A & E, let me have the liquid morphine, so I could take it when it was severe. Take care x

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Oh yes! Lupus migraines are the worst! I take Tramadol and it only takes the edge off, but they are very debilitating and painful. If you go to the Lupus.org site, look for Lupus Migraines. It's not unusual -- unfortunately.


Hi. Yes I used to have tramadol but like you it only just took the edge off it, which basically meant I wouldn't be screaming with the pain. And in the end my GP said that because of all the things wrong with me, if she could help one little bit she would, and she did, liquid morphine. It saves endless trips to A & E!

Ok I'll go to that website. Thanks


Because I take Coumadin, I am so limited as to painkillers. Most of them contain some form of aspirin. I drink 2 cups of caffeinated coffee every morning, which should also help. I think stress kicks it off just like it kicks off a Lupus flare. Everyone has that in their life - some of us more than others. I have a slight headache today but nothing like the migraine. I fyou get nauseous from headaches, I highly recommend Premium Nabisco mini crackers. They settle your stomach and taste great. We always keep them in house. I don't like taking Tramadol as it makes me feel unsteady on my feet and groggy. I hate giving in! That's why we are alive still - we have to fight for survival because we have Lupus! Thank you for your response!


I have had awful headaches since I had my youngest son.21 years,I take 180mg of proprananol a day to prevent them,swallow Cocodamol like smarties,always have a dullness in head,but at onset if a severe migraine,I take zolmitriptan and rest


Hi. Are your headaches hormone related then?

Propranolol didn't do a thing for me. It's so debilitating isn't it x


Hi I'm Christine. I suffer from the same headaches. I self medicated as dr don't seem to care to help me with medicationhi as of a saying in my report and doctors are not interested in helping me with medication for these headaches and I have been accused of being a hypochondriac I've been accused of being a drug addicted to polls please help if it can help we can I go to for assistance with these constant headaches I'd appreciate your reply from anybody thank you very much


Hi. I had the same problem for years. I kept getting told they were migraines, I said they are not migraines, there are no triggers, no nausea, no flashing lights, nothing! I tried every pill going and nothing helped. I used to end up at A & E as I was screaming with the pain! I was down there so often I think they thought I was a drug addict!! I saw neurologists, pain clinic, and nothing......

The only thing that would 'maybe' take the edge off them was IMIGRAN INJECTIONS, and when they didn't work it was back to A & E!!

Eventually, my consultant at Kings College Hospital , said its lupus related, and called them "Intractable Headaches"( which basically means that they have a mind of their own, and will come without warning and go when they want. ). My worst is 11 days of the most debilitating painful headaches I have ever known.

I saw my GP and said to her if you don't give me something I'll find something on the internet, as I couldn't carry on like this. She prescribed Liquid morphine, and when the injections don't do anything , I know the morphine will. It's been a life saver to me and I feel lucky to have such a supportive Doctor .

You have to keep on, until they take you seriously. Try and go to the doctor whilst you are experiencing a severe headache.

I hope you find relief soon.


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