February's Topic of the Month - Headaches & Migraines (We want to hear your tips and experiences)

February's Topic of the Month - Headaches & Migraines (We want to hear your tips and experiences)

Our Topic of the Month discussion for February is 'Headaches & Migraines'.

Headaches are common in lupus. They may be a feature of the disease itself or they can be associated with a clotting disorder; antiphospholipid syndrome (APS). They may or may not have a migrainous element with flashing lights and visual disturbances.

We want to hear if you have any tips for coping with headaches and migraines if you have lupus. Have you identified any triggers which you can avoid to prevent headaches? Have any lifestyle adjustments helped you manage better? How do you look after yourself when you are experiencing a headache/migraine?

We would like to hear all of your tips and experiences (good and bad) and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk

The article itself will be posted on the LUPUS UK Blog at

lupusuk.org.uk/category/blog/

All submissions will be anonymised.

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Hi Paul.

Unfortunately I can't offer any advice or input 're triggers but I've certainly been suffering lately with migraine as I posted yesterday. Last week I had a 6 day cluster migraine which was really debilitating along with all the other aches and pains.

I've been to my GP yesterday who also advised elevated liver enzymes and got a call from the hospital today to say there's been another significant rise. Now I don't know if the migraine was down to lupus, medication or the raised enzymes

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Hi Paul, I’ve been a migraine sufferer for the past 17 years or so which was about a year before I was diagnosed with UCTD. I’ve tried quite a few treatments such as Pizotofen, pregabalin, TMS treatment, Botox, chiropractic treatment, massage, acupuncture, Imigran and a Daith piercing!

Botox was my worst experience , the first course seemed to alter my migraines a little so a few months later I had another course which hurt when having them injected where as the first lot didn’t hurt ( I had a consultant the first time and registrar the second time) two weeks later I became quite poorly, I also had one droopy eyelid which I had to hitch up with a bit of tape!

My triggers can be the smell of bleach, being dehydrated and pushing myself on a busy day when I’m already exhausted, hot weather and looking at my iPad or reading for too long but mostly they would come on for no apparent reason. I very rarely have migraine with aura and if I do get aura I don’t get the intense pain.

For many years I would wake up with intense crippling pain on the right side of my head and into my eye, down my neck and into my shoulder blade every 7 to 10 days and they would always last for 3 to 4 days and always on my right side.

The only treatment that really works for me is Imigran but I did have a Daith piercing put into my right ear 2 years ago and although I still get migraines they have altered their pattern since the piercing , in the first three months after I had it done I only had 7 migraine days! I have more warning before they get intense and they usually last 1 to 2 days every 2 weeks now although I still go through times when they ramp up a bit, as long as I have Imigran I can get through them.

At the first sign of a migraine I have to take my Imigran, drink water, have a hot cup of sweet tea and eat something (nausea permitting) and sleep or rest until the worst has passed. When the pain is intense in my eye and across my scalp I use a cold cap that I keep in the freezer ( I think I got mine from Amazon) and an ice pack for my neck, I find these really soothing.

I try and limit the use of paracetamol and codeine as I find they can actually make things worse and I can’t use Imigran for more than 3 days at a time because of medication overuse headaches, so if my migraine runs into a 4th day I have to go ‘cold turkey’ and suffer the pain until my brain recovers on its own, it usually eases by the end of the 4th day!

So that’s pretty much my migraine experience and I would say that for me the one thing that has made a difference is the Daith piercing, I was part of a study by the piercer and the migraine society who have taken a special interest in migraine and Daith piercing.

Hope this helps a little, sorry it’s long..!

Diane x

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Thank you so much for sharing your experiences and tips ExtremeDuvetDaze. That is really interesting.

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Ive had migraine most of my adult years which started shortly after puberty and long before any diagnosis of an autoimmune condition. That's not to say that I did not have the condition. Other the years the migraine has changed. I always get shooting pain or visual disturbances prior to any headaches. Sometimes this comes with nausea and vomiting. After the migraine I have loose stools. My son who over the last six months has been diagnosed with APS and Graves disease, has also had migraine since puberty more violently than I have. It merged into vaso-vagal faints and then seizures.

Both of us agree that at the first sign of a migraine we take analgesia immediately. If possible lay in a dark room and sleep if possible. Taking analgesia four hourly even if the pain goes for the next 24 hours is important, although both of us find that our migraine last at least four days.

Sometimes the migraines extend to pins and needles down one side. I now use Topiramate and Bisoprolol and my son uses propranolol daily. These do not stop the migraines but do reduce them.

I have reduced some foods; cheese, chocolate, food additives, I rarely alcohol. I am not sure this makes much difference. I do know my migraines are related to my menstrual cycle and poor sleep.

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Thank you so much for sharing your experiences johare, that is really helpful.

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I have suffered from migraines since I was 12. They have changed over the years. When I was younger I would get the half vision fuzzy TV screen like. About 7 years ago they changed drastically and I would get terrible vertigo. Debilitating. After a bettery of tests I ended up taking an ani-migraine medicine. Wanting to get off of this I did some research and learned about a daith ear piercing. I decided I'd try it, can't hurt, if it doesn't help I'll just take it out. That was about 2 years ago. I'm off my medication and I have not had a migraine since. For me, it definitely helped. Some people it just doesn't work for, but it's worth looking into. I'm so glad I did.

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Hi Sadi137,

Thank you so much for sharing your experiences. It is great to hear that the daith ear piercing was so effective for you.

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Hi Paul,

I've had migraines since I was a teenager. Mine are definitely hormone related, so I get one a month for 3-4 days. I don't think mine have anything to do with autoimmune disease...but it's all so complicated...so maybe.

When I feel one starting, it makes me panic and so the best thing to do is to stay calm, take strong codeine/paracetamol and some nurofen and lie down. They always start on the left side and piercing my left eye, so if there is someone around to bring me a cold flannel to put over my eye, that can help. Bright light and noise make them worse, as does speaking. I have tried so many different medicines, including imigram and other meds of that type. They actually made them worse, so I stick with what I know and take them every 4 hours during the attack. I even take one further dose after it has subsided...just in case.

I have also found that having some caffeine at the same time as taking my tablets can help. So, I might have a cup of tea or coffee..or even a glass of coke.

I have looked for particular triggers (apart from hormones) and nothing stands out. I avoid alcohol when I know one is due, and I make sure I get enough sleep. I also try to avoid stress.

Thank you for doing this. Migraine affects so many people lives.

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That's really helpful. Thank you so much for sharing your experiences puffyface

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Hi Paul,

I was diagnosed with lupus over five years ago but have been suffering from these migraine like headaches over the pass year. My. Headaches are accompanied by blurred vision and sensitivity to loud noises and bright lights. When I was a teenager I used to get terrible migraines where my head felt as though it was about to explode and I had to lay still and be in total darkness. Therefore I didn't link my current headaches to migraines as it didn't feel like my previous experience as a teen.

My headaches are frequent I would say at least 4-5 days per week and when they occur they normally come and go throughout the day. My remedy is rest or sleep in a quite, dark room. I take ibuprofen when I can't bear the pain any longer. ( I take several different medicine so I try not to take any more tablets than I have to). I also experience vertigo with these blurred visions.

I hope this info is somewhat helpful.

TAB

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