Headaches: Hi all, Just want to vent a little. I... - LUPUS UK

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Headaches

chrissiij profile image
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Hi all,

Just want to vent a little. I had a massive headache which came on in April. I was sick for the first couple of days of it and felt disorientated. It died down after that, but left a numb, cold sensation over the left side of my skull and face, which didn't disappear until just over a month ago. The headache itself lasted a fair while, although it was more humming along in the background, rather than being out in full force. I also had a few speech issues - whilst I was able to think, type and write correctly, when it came to actually speaking I would trip up on words and / or struggle to get across what I was thinking. I mentioned this to my rheumy, but he didn't seem too concerned. it was quite concerning for me, when it was going on!

Anyone else had this?

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chrissiij profile image
chrissiij
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Tigerlily4 profile image
Tigerlily4

Hi Chrissi - Migraines are common with SLE as is parasthesia (the numb etc. sensation) after a bad one. Same thing happened to me shortly after my lupus really got going and I was equally alarmed. Saw a Consultant Neurologist who was able to put my mind at rest. That was in 1993. The parasthesia, while alarming, is quite benign - or at least has been in my case. The speech issues are also a result of SLE. My Rheumatologist collaborated on research some years ago which showed some people with SLE also suffer a subtle cognitive impairment as a result of the disease. Again, I have the same problem. Hope that's made you feel less alarmed. x

Purpletop profile image
Purpletop

Do you still have the residual effects? If so, go see your GP - your rheumatologist is focused on assessing whether your lupus could cause it but it may be another explanation for it, who knows. I've just had a series of bad headaches for the past few days too, particularly my left temple and left eye - I'm off to see the GP if it continues tomorrow. I suspect it might be sinusitis on the basis that I've recently increased my immunosuppressants so it is more likely to get inflammation. But I will see what the GP says.

SarahHeney profile image
SarahHeney

I take it that your gp eliminated a stroke? We are more prone than most x

Tigerlily4 profile image
Tigerlily4

With respect Sarah, IME, parasthesia appears to be a common, benign complaint among SLE battlers. Obviously, if one's symptoms are much worse they would require investigaton.

chrissiij profile image
chrissiij

Thanks for the replies, sorry for being late coming back to this - stressful time at work! :/

I didn't mention it to my GP at all, because getting an appointment is like taking part in the Krypton Factor. I thought that my rheumy would know all. I mentioned it to him and he didn't seem bothered. I mentioned to my other half, just yesterday that my head feels normal - something I haven't felt for a while - and that it feels weird! I keep expecting sensations like something cold crawling over the left side of my head, but it doesn't happen.

I would really like to have an MRI, just to clear things up for me - I have insurance, so shouldn't be a problem - but I don't want to go while I am "well", as then I just look like a ninny!

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