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LUPUS UK
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Migraine help

What do you take when you have a really really bad migraine(one of the worst I have had yet) , eyes painful, head painful , jaw painful .Had taken paracetamol / codeine phosphate every 4 hrs but couldn't shift it . Slept in dark room and also couldn't warm up all day yesterday . Had fire on full (it is winter here in New Zealand at present) . Said to husband last night I just had enough of this **** and feeling crappy all the time . Some days you jut have enough and it feels like it's robbing you of your life that was before. Hope my new Rheumatologist might come up with some answers . Still not confirmed I have Lupus yet? but have lots of symptoms auto immune conditions that run along side of it.

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Hello Pammy 1,

I take Sumatriptan 50mg which is prescribed by my GP.

True migraine is a very debilitating condition and requires some very powerful medication.

Sadly, here in the UK, people tend to call any old headache a migraine, just as they call a bit of a cold, the flu.

I would go and see your GP and ask him or her for something to help control your migraines. There are two main types of medication for migraine, one which you take everyday which prevents the migraine attack from starting in the first place. The second type, you take at the start of the attack, but they do tend to knock you out a bit. Sumatriptan 50mg is of the second type.

Attack management medication is far better now than it was well over half a century ago when I had my first migraine, so it is worth pursing it with your GP.

I have found incidentally that, if I do have a migraine attack, my fatigue levels, due to my SLE, increase for a few days after the migraine attack has finished.

Good luck with it and I hope you can get something which helps.

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Hi yes I take naratriptan when I get a migraine, prescription drug. I also take betablockers daily to prevent them because otherwise I get them daily and it's awful so I need prescription meds to prevent them.

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My migraines always include nausea, so I take cyclizine and nibble at ginger to try and ameliorate that. Pain-wise, I haven't much to add except that - if you can tolerate it - it is possible to take ibuprofen at the same time as paracetamol/codeine. Otherwise, I tend to find the most effective painkiller is an icepack. Hope you find something that works for you x

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I have suffered cluster migraines for 15 years and consulted with top neurological experts in the US. My doc was given a list of 10 meds for me to try to prevent them, and over 5 years I did the list. I gained a lot of weight, suffered confusion, it was a laugh....so many different side effects with each. Triptans were ruled out for vascular reasons. Still no relief!

Finally!! A specialist told me to stop the headache, breathe pure oxygen through a face mask for 10 minutes! It works!!! Same treatment that is given in emergency room, possibly with a bit of Lisaigil. It is easy to obtain a tank ( with wheels), a bit of rubber tubing comes with the mask that covers nose and mouth ( do no use nasal cannula)

Put the mask on, open the control to full , usually 8, relax and breathe the pure oxygen for 10 minutes. It works !!! You can refill the tank as needed. Most medical supply stores or rental outlets can supply you.

When we moved to Costa Rica years ago, the doc here commented on my medical list and said "of course you breathe pure oxygen for your headaches". Who knew!

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wow interesting not sure if I can get hold of one here in New Zealand but will talk to Rheumatologist next week about it . Thanks

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Good luck Pammy, those headaches are beasts! Hospitals always have portable oxygen tanks. Make certain.....you do NOT WANT an oxygen concentrator . These produce oxygen but it is not of strong enough concentration 😀😀😀

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My GP always used tell me to take ibruprofen for migraines but I can't take that anymore with kidney problems. If the migraines get worse with nausesia or confusion speak to your GP asap. I have inflammation in my brain after a flare had to increase my steroids.

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oh ok will talk to rheumatologist next week thanks

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Hi Pammy1,

According to The Lupus Encyclopedia, “People who have SLE have an increased chance of having headaches compared to people who do not have SLE (they occur in up to 72% of SLE patients)”. Migraines are the second most common headaches in people with lupus and can get worse with physical activity. NSAIDs such as ibuprofen can be used to treat migraines however, there are several side effects that can occur if there is persistent use of these drugs which you can read about in our factsheet on ‘LUPUS: and Medication’: lupusuk.org.uk/wp-content/u...

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. If you would like to know more about lupus and the brain you can read our factsheet here: lupusuk.org.uk/wp-content/u...

To find out how lupus is diagnosed, you may like to read our factsheet on ‘LUPUS: The Symptoms and Diagnosis’ here: lupusuk.org.uk/wp-content/u...

Please keep us updated, all the best.

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thank you

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thank you have found this site very helpful . Got a rheumy appointment with a new lady next Thursday as first one wasn't very helpful . We have decided to go private Been 2 years of different diagnosis's .Have sent her all my health history in bullet points and symptoms even before I have seen her. She seems very pro active and looking at the whole picture not just treating one symptom at a time. Will post how I get on once I've been

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Hi Pammy1,

You are most welcome. Thank you for the update, good luck!

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Hello,

Your should see a doctor who takes this seriously, migraine is just awful, I have suffered with them most of my life and have been diagnosed with SLE for three years.

Painkillers don't help at all, I get zomig on prescription which usually works if I take it soon enough. Don't put up with it, find a doctor who can help.

Weird fact, if all else fails if I can force myself to eat a banana sandwich, made with bread bread, that helps too, I hate them, so would rather avoid them if possible.

I really hope that you feel better soon.

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thanks will try that

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Can't help but wonder if any of these headaches may be due to taking in Aspartame in juices, sweeteners, medicines, chewing gum, yoghurts etc? As severe headaches are the most common symptom followed by many other terrible side effects as below!

wnho.net/fdaapprovedepidemi...

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Hi, I suffered with migraine long before my diagnosis of Lupus. As has already been said many people Lupus and other auto immune condition experience migraines and when your Rheumy gets to the bottom of your diagnosis you my find that, when treated, this is one of the symptoms that fades.

As I have heart and brain involvement I have been placed beta blockers (already mentioned above) for my heart and a common treatment for migraines and Topiramate for my head as it is a cross over drug for seizures and migraines. I have had one migraine now in the past year, rather than one a week. However, when I did have them I found that anything codeine based made them worse. I had to take Ibroprofen or Aspirin ()which messed with my stomach, as soon as the first symptoms started and sleep in a dark room. Being proactive was the best thing I found. Avoid bright or flicking lights, certain foods, tiredness, whatever your triggers are.

All the best.

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thank you for that much appreciated. Got a rheumy appointment with a new lady next Thursday as first one wasn't very helpful . We have decided to go private .Have sent her all my health history in bullet points and symptoms even before I have seen her. She seems very pro active and looking at the whole picture not just treating one symptom at a time. Will post how I get on once I've been .

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Hello pammy1

I have been trying to find time to reply to your post for a while now. I'm here finally. I have suffered headaches for years.

Firstly, due to hormones? and when I had my period in early teen years. When about 14-16 year old, whilst studying for my GCSEs I was prescribed glasses and told it was eye strain? They got worse around 18-22. I had a part time job through my A-levels and worked long shifts on my feet. I found that if I did not drink enough during those long, hot shifts or have a meal break at the right time I would get a headache. I noticed that sleep was also important. I went home with a terrible migraine one day and threw up - the only time I have ever actually been sick. I used paracetamol, ibuprofen or Migraleve - over the counter - but not sure they still make those. They were yellow and pink tablets. You took one at the onset and then if the first colour didn't work, you could take the next stage 2 hours later.

So basically I have suffered headaches all my life.

Then, with hindsight I can see that my lupus was triggered by the birth of my 3rd child in 2008. By 2009 I had my first real bad flare - it went un-diagnosed by the doctor. But I had a terrible 3 week long migraine. It was so debilitating. I actually woke one morning and found hard bits in my mouth, which I realised were bits of my tooth! I had ground it in my sleep. So I was flaring (not that I knew it then) and being bullied at work. Luckily for me the dentist saved my tooth. The GP prescribed me diazepam for night time use only, to enable me to sleep with my mouth open & facial muscles relaxed, to let the tension release from my head. It worked. But I didn't want to get addicted to those and stopped after 2-3 weeks. I could have asked the GP to write me off work sick but my employers realised how bad I was and let me off working my notice and paid me for it anyway. So I handed my notice in at work, as I knew I wasn't right and needed a break. I thought it was just having 3 children within 4 years and being super busy.

Anyway, I flared again most of 2013 and this did lead to my diagnosis. I had lots of other symptoms by then too. I get nausea and fatigue with my headaches. Confusion. Lack of concentration. Loss of appetite. No patience. Etc.

As time has gone on, my headaches have got longer. I had one this Feb-into April. 5/6 weeks. That's the longest so far. Tenderness on my head and pains shooting down my neck. A feeling of a tight band around my head. Pain in my jaw.

When I am in a flare, paracetamol & ibuprofen do not work. I have found that those combined with codeine do work, mostly. (I had codeine in the house for bursitis in my hip last year). Also, when on steroids I do not get headaches. In fact I do not get any lupus symptoms and have good energy levels too. But am not on daily steroids.

Last year my GP gave me sumatriptan 50mg tablets. I found that they didn't really work. But I took them anyway as I had no other choices. This year I couldn't get them despite asking for them repeatedly on my prescription. So I quizzed the pharmacist. they couldn't get 50mg tbablets for some reaosn but had 100mg in stock. I asked if I could get those instead as the 50mg didn't touch the sides anyway. She spoke to the GP that day and got my repeat prescription amended to 100mg tablets. Now these work a treat. But I think due to my daily medication being right too by now.

The right medication and sleeping it off is always good for me.

I can now see that headaches have been part of my flares all along. I have been told I have headaches, migraine, cluster migraine, migraine with myalgia (pain around my head, ears and face), ice pick headaches - the short, sharp burst of intense pain in my head that can be a one off, or have a series of them, but they are totally unpredictable and you cannot take pain relief effectively for them.

Lupus seems to be the cause. And my body certainly does not like stress. I can see the direct link. But even though I no longer work and try to control my lupus with life style and meds (2x200mg hydroxy daily, 3g MMf daily and 50mg mepacrine x 3 times per week) stress still happens. That's life right.

My GP told me sometime ago that I have lupus with CNS involvement (Central Nervous System) and I guess most of us do to a certain extent. It's finding out the extent we as individuals have it. I had an MRI to try to find the cause of some inflammation on my spinal cord last year and this showed small bilateral lesions on the front of my brain. I am awaiting a 2nd MRI to see if these lesions are growing or need to be monitored further. I have also been re-tested for hughes and a few other tests, to see if there are any more concerns related to these symptoms - headaches and lesions and inflammation of the spinal cord.

I also am waiting for a referral to Neurology.

So I think headaches are always worth mentioning. At 42 years of age my headaches are finally being properly investigated.

I also keep a daily health diary, to I can see when I have flares and headaches, how long they last, new symptoms and what meds work for me.

I hope I have helped a little. Fitting all the little jigsaw puzzle pieces together can take some time and patience. But I have learnt a lot from this site and found it an amazing support too.

Best wishes.

Wendy

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