Whats wrong with my head?: A symptom i have started... - LUPUS UK

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Whats wrong with my head?

janann profile image
9 Replies

A symptom i have started with now is the feeling of my body moving but i am sat still. My head feels wooly and i have a headache constantly. I also feel like my head is swimming (sounds strange i know) but that is just how it feels. I also feel like my brain is sparking when i am quiet in bed and if my eyes are shut when this happens i see a spark of light. this part has only happened a few times but is very strange. Can anyone help by at least saying i am not alone in this.

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janann profile image
janann
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9 Replies
scottty profile image
scottty

I get them aswel I had it for about 3 years now I kept on telling my gp at the start I felt like I was going daft this year I been taking fits where my body starts twitching then I know iam going to have a fit I can't remember what happens after that I always end up in hospital for a few hours then they let me home my gp phoned Friday and I to get a some kind of scan done on my brain box it to test the electrical works before I see the neroligist in July x

I am wondering whether this sort of thing may be disease progression or whether it could be related to a drug

janann profile image
janann

Thanks Scotty. I am sorry to hear you are having such a rough time and i hope they get to the bottom of your problems and can help you in some way. I think it maybe that the lupus is affecting my brain in some way so i will see my G.P and go from there. I see my rheumy in 3 weeks and will mention it to him as well. Keep as well as you can and good luck with your scan and fingers crossed they can help x

janann profile image
janann

Thanks overnighthearingloss. I think you may be right in that my lupus or my medication maybe the cause. I will be talking to my G,P and my Rheumy so hopefully will get some help. Thanks for your help x

T3KAO profile image
T3KAO

I get this also, quite frightening at first. At night I kept thinking it was lightening outside, but inside if you know what I mean!!! I suffer from Tinitus as well just to add to the pain of everything else. You are not alone in this, as long as we all keep talking to one another we might start to feel normal, whatever normal is??

Suzie profile image
Suzie

This could be a vestibular migraine, hence the lights too. I have had these for many years , the spinning sensation that you are moving indicates a vestibular problem. If you have a family history of migraine it is the most common reason for vertigo. Have a chat with your Gp and see what he recommends as he may need to refer you to an ENT specialist. Good luck.

Hi there. I was told that my similar symptoms were side-effects of the meds I am taking particularly amitriptyline and morphine. I know that morphine can cause jerks when relaxed but your fitting sounds more serious than that. Check it out with your GP or consultant or even the rheumy nurse if you have their number.

baaramewe profile image
baaramewe

I have experienced this for about a year and saw a neurologist, had an MRI scan which was normal and was put on Amytriptilline taken before bed and it has made a huge difference. I thought I was going mad when I saw the bright lights in the dark, with my eyes shut. I was told this is part of the migraine spectrum. You do need to get checked out. Good Luck xx

janann profile image
janann

Thanks everyone for your advice. It is very disturbing when it occurs and very difficult to explain. I will defo seek advice xx

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