Headaches, is this normal?: Hi all, Need some... - LUPUS UK

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Headaches, is this normal?

sarahalice profile image
15 Replies

Hi all,

Need some reinsurance and advice please. I have had the normal lupus headaches for past few weeks. They were helped by the normal painkillers.

On Thursday I started having very sore headaches on my temples, no painkillers can touch it. Have tried paracetamol, ibuprofen and codeine. I can't really take anything else due to my other meds. The headache is at the back of my head now as well. I have never had such a sore headache that has lasted so long. Its scaring me, and I haven't slept which I'm sure isn't helping.

I haven't really got any other flare up symptoms atm nor have a got a cold. Anyone else had this happen?

So fed up of lupus! Even more fed up of this blinder of a headache.

Thanks, Sarah x

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15 Replies
Sallmell profile image
Sallmell

Hi hun, sorry to hear you are having a bad time. It is worrying isn't it... i experience the same when I am starting to flare. The pain is excruciating isn't it. I would however go to your GP if no better x

sarahalice profile image
sarahalice in reply toSallmell

Thank you! I was worried it was a brain tumour, i always fear the worse, but looks like it's a flare with high blood pressure. I had worked so hard to get my blood pressure normal but it's way up, my lupus had been the best it's been for years but I'm guessing a few days of sun has done it. Anyway the docs have given me some magic pills for the pain and I'm in an hour wait for blood tests.

All the best, Sarah x

Sallmell profile image
Sallmell in reply tosarahalice

Let us know how you get on x

sarahalice profile image
sarahalice in reply toSallmell

Hi. Sallmell

Saw my specialist and the opinion is that it's a virus. I'm surprised a virus would cause such head pain for over a week. But it started to ease a bit Sunday and is manageable ATM. Starting to have the sniffles so it think the specialist is right, thank goodness! That's why they get the big bucks!!

X

Sallmell profile image
Sallmell in reply tosarahalice

Could be your body reacting to the virus. When I am flaring I have pain at back of my head it is usually the first sign something is happening. Hope you feel better soon hun xx

sarahalice profile image
sarahalice in reply toSallmell

Thanks so much. Your right, head has started to clear, I feel loads better all round.

Definitely just a virus. So many viruses going round atm. I work at a school and there were a few cases of chickenpox this week. I'm lucky I didnt end up with shingles instead. Lol trying to find the bright side!

Take care x

PMRpro profile image
PMRpro

Do the magic pills work?

How old are you? Have you any other symptoms such as jaw pain when chewing?

sarahalice profile image
sarahalice in reply toPMRpro

Hi. I'm 41, a bit of finger counting to work it out!

I have occasionally had the jaw pain. Which is without a doubt one of my worse lupus pains. Hope you don't have it often? It's so painful I can't chew or drink or move my jaw in anyway. But with painkillers that goes away in time and has never last more than a few hrs. Thankfully I haven't had that, with this headache. The doc has given me Tramadol, its definitely done something. I'm in a better mood! I can still feel the pressure and movement of the headache but theres less pain. X

PMRpro profile image
PMRpro in reply tosarahalice

Luckily I don't have lupus - I just lurk and reply to some posts ;) It was just if you were older what you describe could fit with a vasculitis - it doesn't mean it isn't but it is less likely so young.

sarahalice profile image
sarahalice in reply toPMRpro

Hi.

That's a good idea, I didn't think of that. I had vasculitis when I was 1st diagnosed with lupus. It was like red paint was splatted all over my legs. I will bring that up when I next see my specialist. Still have my headache :O(

Thanks, Sarah x

Roarah profile image
Roarah

Usually in the under 50 crowd, bilateral temple pain and even jaw pain are classic tension headache symptoms. Tension in the shoulders and neck is often the cause. If you get scalp tenderness inadidition and blurred vision a ESR to check for GCA might be wise. GCA is very rare in those under fifty and your symptoms and your worry of a tumor point more to a bad tension headache. Neck, shoulder and deep breathing exercises can help lessen this flare plus done regularly can help prevent further ones. Hope you feel better soon.

sarahalice profile image
sarahalice in reply toRoarah

Thank you so much for the helpful info.

Hoping it won't last much longer, It tends to get worse in the evenings.

The Tramadol takes some of the pain away for a bit, but not the feeling of pressure.

The doc has let me know today that my inflammation marks have gone up. So it could be a flare. The joy of Lupus, it keeps things interesting, you never know what it's going to do next!

Thanks again, Sarah x

Roarah profile image
Roarah in reply tosarahalice

How high is your ESR? If you chew gum does your jaw start to hurt after a few minutes? If so ask about GCA. Hope you feel better soon.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi sarahalice ,

How is your headache now? Better?

We have an article about lupus headaches on our website which may be of interest to you - lupusuk.org.uk/headaches-an...

sarahalice profile image
sarahalice in reply toPaul_Howard

Hi Paul.

Hope you are well!

Many thanks for this great information.

Saw my specialist and looks like I have a virus. My headache has eased and I'm so looking forward to it going away completely!

Thanks again, Sarah

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