LUPUS UK
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Horrible non-stop headaches during a flare-up?

Hey everyone, I've been on a pretty rough flare-up for more than a week. I keep getting painful mouth ulcers, hair loss, fatigue and bone/joint pain. I am used to living with these symptoms, but lately I've been having a lot of headaches with auras that won't go away even if I take paracetamol, ibuprofen, excedrin migraine. Does this happen to anyone? What do you do to feel better? I'm so tired and annoyed of not being able to function properly due to the pain and lack of concentration that comes from having the headaches!

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Hi I can totally understand how you are feeling. My joints and muscles have been very painful, extremely fatigued and I've had a continuous headache since Monday. I've taken various pain killers but nothing is touching it.

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It is so incredibly exhausting! I hope you feel better soon.

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It certainly is especially when nothing I'm doing seems to be helping. Everyday this week i've had to return to my bed as it's so debilitating. I hope you feel better soon too

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Hi MerB90,

I am sorry to hear that you are experiencing a bad flare at the moment. Have you spoken to your doctor about your symptoms?

To learn about headaches in lupus you can read our factsheet on 'LUPUS: and the Brain' here: lupusuk.org.uk/wp-content/u...

Below I have included some information links which I hope you will find useful:

lupusuk.org.uk/pain-managem...

lupusuk.org.uk/managing-fat...

lupusuk.org.uk/coping-with-...

lupusuk.org.uk/coping-with-...

Please let us know how you get on, all the best.

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Hello

Sorry for the delay in getting back to you.

I replied to someone's post about headaches before, last year sometimeso here is my reply, I'm copying and pasting it.

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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 tabblets for some reason 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.

So I think headaches are always worth mentioning.

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.

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I think Lupus can throw up new symptoms all the time, even when it is considered under control, so please do mention any new symptoms to your GP and Rheumy whenever you get a chance. As for medication for headaches, this seems to be a very personal thing and what works for one person, might not work for another. But discussing with your doctors is the only way to get the help you need with this.

There are times when my headaches have been all-consumming and taken over, so I can totally understand how you are feeling.

Good luck and best wishes

Wendy

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