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?

5 Replies

  • 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

  • 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.

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

  • 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.

  • 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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