Having dizzy episodes for last few days. Feels li... - LUPUS UK
Having dizzy episodes for last few days. Feels like I have had too much to drink. Anyone else get this and how do you manage it?
I started getting severe dizzy spells then crashed my car one night because it changed into seizures been tested head scans etc and all the neurologist says its migraine I don't think it is as don't my doctor lupus at its best again I think so look after yourself... Gaz.
Oh dear thank goodness you are here to tell the tale. Thanks for your reply.
Hi, I've had a real problem with dizziness so i know what youre going through and feel for you. It's not nice.
Thankfully Doctors have worked out that my blood pressure was very low (94/65) and was probably not helped by one of my meds - nifedipine, for my Raynauds. I've since come off the nifedipine and already noticed a difference with the dizziness. Maybe it's worth talking to your doctor about your meds??
Good luck and hope it improves for you soon xxx
Thanks. I do tend to have a low blood pressure so it might well be that. Got bloods due next week so will tie in a visit to the GP at the same time.
Hi I had really severe dizziness, so much so on some days I had to crawl. I was seen by the ent and neurologist as I now have epilepsy, I was put on betahistine I wouldn't be without it now, or Warfarin, it turned out that I had Hughes Syndrome.its very rare that a neurologist would diagnose it.
See the Hughes web site for more information
Wishing you well
Thanks for your reply. I will take a look.
Have you an inner ear infection or Menieres? x
Have been managing vertigo for years (my infancy & teen SLE diagnosis had been lost, so no dr knew my dizziness was lupus-related). Mandam is right: probably best to ask your gp who may send you to ENT for examination. I went through all that in the mid'80s. ENT diagnosed benign non positional vertigo possibly related to labyrinthitis originally & gave me travel sickness Rx which made things worse. This went on for weeks: unable to drive, barely able to walk. I got v anxious & depressed. Finally saw private ENT consultant. He said stop meds, stop worrying, rest up. Took 2 months off work and slowly the vertigo receded.
BUT over the decades since then, vertigo has flared with chronic fatigue and cognitive impairment any time I over did anything. I had to learn to pace myself, strictly ration activity and generally lifestyle manage things to reduce all this. Then in 2010 my SLE was rediagnosed & treatment begun properly (plaquenil, amitryptiline & low dose pred tapers). But I still get vertigo flares with chronic f. & cog. Imp. If I over do stuff.
Most recently I've learned that. EVERY chronically challenged patient has wonky adrenals to some extent. Adrenals = fight or flight function. A chronically challenged patient is in constant battle mode. The body fatigues / recovers / repeat. Years of this creates a biochemical imbalance. This imbalance is adrenal impairment. AI causes can vary: Primary Secondary Tertiary. My rheumatologists are looking at how my vertigo/c.f./cog. Imp. may be related to AI in me, due to SLE. Who knows whether I'd be better off re my version of vertigo if my SLE diagnosis hadn't been lost..
Sorry to go on & on, but this is a subject that means a lot to me.
Hope you feel less dizzy ASAP!
Thank you for your reply. It really helps. I will talk to my Drs about it. Less dizzy today i.e I don't feel like I am on board a flying carpet. But it comes and goes with no notable trigger. Stress probably plays a big part in this.
That really does sound like an inner ear/balance thing. Alcohol can make it worse. Menieres or verigo are a couple of things that'll make you feel like you're in a rocky boat. My elderly mum has recently been prescribed some tablets to take 3 times daily for this sort of thing and they have helped enormously. Also triggered by stress as is everything Lupus wise! X
You're v welcome.
Good idea to follow up on all these great replies with your dr
If your dizziness hasn't become continuous, that's really really good! Prevention is best
Re stress trigger: yes! It's taken me 20yrs, but now at the least sensation of dizziness, I just look for what could be stressing me and do my level best to let go of any extra emotional energy I'm channelling into the stress thing...easier said than done....but practice makes perfect...
Take care
If you get it then you need lots of rest. Don't try to fight it. It will get worse. Sometimes forcing yourself to eat certain things can help. I don't know why. Maybe it changes an imbalance (sorry about the pun) somewhere.
Low blood pressure can cause a dizziness as well. Try to structure yourself to be able to sit or lie down when it really strikes and it will hopefully pass a lot sooner.
It seems more likely to strike if you have been pushing the limits.
Thank you. Love the Pun! 
I have, after 10 months of complaining of dizziness, just been diagnosed with secondary adrenal insufficiency along with steroid resistance. This sadly came only after I collapsed and needed to be rushed into hospital. I am now on steroids permanently and still struggling, it is like being a diabetic with the constant need to take the right amount of cortisol. Ask to be referred to an endocrinologist for an acth test and get a diagnosis ASAP.
Your Gp can do some simple balance testing and if need be send you for further investigations with ENT or an Audiological physician.
Have just gone through 2 weeks of severe dizziness, vertigo, mild headache, occasional slurring of speech, balance and serious coordination issues, not to mention drowsiness. Felt like I had drank 3 glasses of wine!!!! Have had milder symptoms before & MRI of brain normal. Haven't yet discussed this with rheumy. Thank God my heads back to normal as a horrible feeling. Hope you get sorted & are feeling better soon. x
Glad you are feeling better. It is quite frightening when it happens. My symptoms improb=ved but after quite a busy weekend and stressful day at work I have woken this morning with a swimming head again. Will contact the nurse specialist and see what she thinks. Thanks for responding. It helps when others know what you are feeling x
Hi.
Just had a spell of really bad dizziness, came down on steroids which bought on a flare up. Was awful and very scary. Had to go back up to 7.5mg steroids and has settled now. Spoke to the hospital and they have bought my appointment forward.
Hi Joannebond360. Yes it is scary. I am going to contact the nurse for advice. Ironically my next appointment has just been put back 3 months :/ Thanks for replying.
Really Hope your nurse is able to help you. Ask for your appointment sooner if your not happy. Hope the dizziness eases up for you very soon xx
If you've just come down with the steroids, then that's the culprit, unlikely to be a flare - try not to go back up if you can avoid it, many doctors get scared like this and suggest increasing the dose back up but really these are withdrawal symptoms that will resolve in 2-3 days. The up and down of steroids has a bad impact on your cardiovascular risk and on the skin (thinning), so it should be avoided if possible. I know it feels weird when you go through it, steroids are wonderful things when we're on them but withdrawal is awful, I agree. Good luck.
I thought it was coming down on the steroids but after a whole week it was getting worse and joint pain terrible so then I thought it must be a flare up. Would it make you feel that awful coming down on the steroids?
Yes, withdrawal symptoms are awful but usually resolve within few days. If they don't, it is probably either your lupus hasn't managed to calm down with the treatment so far, or the taper down is too abrupt for you. On top of this, remember that 7.5mg is the normal level of natural steroids occurring in our bodies so any drop under it will be felt more than if you were to drop from 10mg to 7.5mg, say. I found that the taper from 7.5mg to 5 mg to be the worst for me and it takes about a week to get used to but once I get to 2.5mg I'm fine.
Try not to panic and remember that steroids are only given as a temporary solution - the sooner we get off them, the better. Ask your rheumatologist to put you on proper treatment to stabilise, rather than up the dose.
Let us know how you get on.
Thank you for your fab advice purpletop. Got an appointment in two weeks time so will discuss what's been going on and hopefully he can give me something else.
It is very scary Madlottie and will be the top of my list for my next appointment. Hope your feeling better soon & best of luck. x
