Miserable : I’ve been getting dizzy spells and... - LUPUS UK

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Miserable

Mealfredo78 profile image
5 Replies

I’ve been getting dizzy spells and headache every day 😢

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Mealfredo78 profile image
Mealfredo78
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5 Replies
nanleighh profile image
nanleighh

Hi Mealfredo, Im sorry you have been so miserable. I too suffer with bouts of dizziness and migraine headaches. Sometimes I have them simultaneously, and sometimes I have just vertigo and sometimes just headache. My rheumy doesn’t seem to think that the headache are related to my lupus but I am not convinced seeing all the people with lupus that suffer with migraines. Have you been evaluated for this? Sometimes they will prescribe antihistamines for the vertigo. I do know that chocolate is a headache trigger for me, so I steer clear of it. Have you noticed that your headaches worsen with certain foods? Also vestibular migraines can be accompanied by dizziness. I think it’s worth talking to your doctor about. It is really disconcerting having these symptoms daily. I hope you can find answers to what is causing your symptoms and get some relief. Take good care, Nan

Tab43 profile image
Tab43

Hi M. I feel your pain. I'm writing you this note with a slight headache. Headaches are a daily accurance with me. It's sometimes followed by a dizzy spell. Like Nan, I think it's related to Lupus. When I mentioned it to my rheumy he said that it's Lupus headaches. I spoke with another rhemy explaining my situation thoroughly and she's book me in for a MRI as I get headaches daily several times throughout the day. Also I was asked to kkkep an headache dairy. I hope you can find out what's the cause and how to treat it so that you can get some relief. Tab

misty14 profile image
misty14

Hi mealfredo

Sorry to read your suffering from headaches and dizzy spells. Tough to live with but could have several causes!. You don't say what lupus treatment your on. , some drugs can cause these side effects so worth reading your patient leaflets. Hydroxy is one that has dizziness as a side effect.

Are you due to see your Rheumy?. Might be a good idea to keep a diary of when these symptoms occur and then bring it up at your next appt or if you can't wait talk to your GP who you can also discuss drug side effects with . Sometimes a drug dosage can be adjusted to help. It's a constant risk/benefit juggle!. Your GP can also help bring your Rheumy appt forward if necessary!.

I've recently suffered with dizziness myself from a fast heart rate, been put on a beta blocker and the dizziness has gone so that's another possibility to be checked for!.

Hope my suggestions are helpful and your better soon. Keep us postedX

I have been the same since last October, I was told by doctors that it is Vertigo and some other name I can't remember. I have had a few falls one of them in the doctors surgery when I was at waiting to be called. Next thing I know I am on the floor, very disturbing. I do try to get up Slowly (As if I have much choice with my Lupus SLE) or look down when bending for something I have dropped which I quite a lot as fingers as are bad. and can not put my head back to put my eye drops in. I do not like going out on my own any more and starting to feel very lonely and isolated which does bring on the depression. I am so Sorry I can not give you a quick get better fix but ask your doctors, they might be able to give you medication or at least special exercises to do. I can't take the pills as I am on so much for my Lupus and pain control. I now have a Zimmer from which folds up and I can at least hold on to that. I went to the Sheffield Lupus Group lunch on Saturday and it did cheer me up. Some of the girls come from Leicester, Rotherham, Doncaster and Derbyshire. If there is one within train ride away it is worth getting in tough. We ALL know how each other if feeling and because we have this bond we don'y feel embarrassed if we need to leave early or like me with my 'Bald patches'. Fair enough, I did sleep for 12 hrs - minus loo trips but it does stop me getting more isolated and depressed. Good luck and hope things soon improve for you.xxx

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi Mealfredo78,

I am sorry to hear that you are experiencing these symptoms. Have you spoken to your GP/rheumatologist about this?

According to The Lupus Encyclopedia, headaches in lupus can be caused by several different factors. To read learn more about headaches in lupus, please click here: lupusuk.org.uk/headaches-an...

Sunlight can cause people with lupus to experience rashes, nausea, headaches and joint pains. We published a blog article on 'coping with light sensitivity' which you can read here: lupusuk.org.uk/coping-with-...

Sometimes certain situations can be tough which is why talking to someone can help reduce any worries or anxiety you may have. If you would like someone to speak to, I can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk .

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