Head Pain: I have had a pain the in the left... - Vasculitis UK

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Head Pain

vickylou01 profile image
6 Replies

I have had a pain the in the left base of my skull which hurts to touch for 5 days now with a bad headaches which goes up the back and over the top of my head. No pain killers will touch it, could it be due to nerves? Has anyone else ever experienced this? I spoke to a pharmacist as I was trying to find a pain relief that would work and he didn't think it was a migraine.

I feel as though every week I am getting some form of new symptom/s. The night before last I woke with pain the the soles of my feet, yesterday it really hurt to walk due to the pain in the sole, I've never had this before.

I forgot to say I have urticarial vasculitis, I am tapering my pred now down to 15mg from 40mg. My rheumatologist also thinks I may have fibromyalgia. I take naproxen am and pm already. I have also been getting jaw pain and numbness when I eat and ear ache every night. No idea what is related to what.

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janh profile image
janh

Hi there

I'm laying in bed with one of those headaches right now. I've had something to eat before getting up as that helps. It was agonising all night. I'm on morphine for another condition but that doesn't touch the headaches. I don't get them very often but when they do come its truly awful. What does help is that you regularly check the thick muscle that goes roughly from the ear down to the shoulder blade. If that's even slightly painful you need to massage it. The same for the back of the neck. Drink plenty of fluid as well.

These headaches (if it's the muscles that are involved), can sometimes be avoided by taking control of the symptoms before they get to the dreaded pain.

An osteopath can be a great help in showing you what to do. You can get a 10% Ibuprofen gel on prescription which will help as well by rubbing it on to the muscles in the neck.

I have Vasculitis, Behcets and a host of other things so I'm never too sure which disease is involved and have to deal with the symptoms as they appear.

Good luck I hope this helps.

JanH

janh profile image
janh in reply tojanh

I also have urticarial vasculitis and I have had jaw pain and numbness for years. I'm on 35mg pred which is lower than I have been on lately but I don't think in my case it has anything to do with the headache except I suppose if the muscles are not dampened enough by the dosage. That's why it's important to make sure they are dealt with before they get too painful.

JanH

vickylou01 profile image
vickylou01 in reply tojanh

Thank you GP has said the same he thinks it is the muscle that runs up the back of our heads and that I am tension headache caused by the stress of everything else. He has prescribed me propranolol.

JennyH-M profile image
JennyH-M

How reassuring to hear other people experiencing these death defying headaches. I have ANCA + vasculitis and neurosarcoidosis. These diseases can pick on any part of your body for no logical reason whatsoever, all we can do is deal as best we can with our endless supplies of painkillers, rest and good fluid intake. Hope you feel better really soon.

sarahxxxx profile image
sarahxxxx

I have this headache in the same place as you ever since I had rituximab and went on pred 2 months ago. It turns into a migraine every fortnight but I am on sumatriptan and it works really well to stop the pain. I have always had migraines, have RA and MPA vasculitis so no-one really knows what they are linked to. I did have a brain scan recently and they found nothing wrong so just because these headaches are there doesn't mean anything is going on inside, probably just a side effect of steroids or other drugs. Get it checked out though because if nothing else it does give you piece of mind which helps you deal with the constant pain. I hope you feel better soon x

bowler profile image
bowler

Sorry this reply is a bit late, but your headache symptoms sound like Giant Cell Arteritis ?

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