lupus fog/ Meniere's disease/fatigue

[jayfer]

I posted on here a while ago as neighbour rang for ambulance as I was dizzy, incoherent etc. A & E thought it was lupus fog. Even on days when I do very little I still have the dizziness and need to lay down( 3-4 times a week) around 3 pm. I recently had a dizzy attack while reversing my car. I still don't know if my car was moving or the one next to me !! Fortunately I had a GP apt that day so told him. He has put me on betahistine dihydrochloride (for Meniere's disease) as a 'test' and I have only had the fatigue bad twice in the past 2 weeks, and that was days I did too much. Has anyone else tried this as now I'm confused lol. I am due back to the GP next week so will update after I see him. Any comments gratefully received, thanks Jackie

[Olibop]

I am on betahistine twice a day for dizziness and noises in my ears it sometimes drives me mad ! I have tried to reduce my dose but every time I do it just gets worse xxxx

[jayfer in reply to Olibop]

Thank you for replying, I'm on 3 a day at the moment. Still got tinnitus but not as bad as usual x

[daisyd]

Morning I have Hughes syndrome ?? The cause of my dizziness in the first place, maybe worth looking at that site too

I am on 16mgs of Betahistine x2 a day and can take it X3 if needed fantastic drug for me, I don't have menizures but I know it works came off it for a while and all symptoms came back.

I know I can't be in a car without looking for bends in the road as it makes me dizzy ( I don't drive )

So sight makes a difference also neck problems.

This might not make sence but I found that if I did it soon enough just at the point of a dizzy spell, I pinched my nose, like when you come of a plane to clear your ears. It stops the dizziness, but it has to be done quickly.

I hope it works for you too, please let us know how you get on

[jayfer in reply to daisyd]

Thank you daisyd. I will try the pinched nose and look at the Hughes site. I still have vertigo, it hasn't helped with that xx

[Barnclown]

I can relate to the replies you're getting & to your experience.

My version of this sort of 'dizziness+fatigue+brain fog" became really bad in my early 30s, but I'd had balance & nausea problems from childhood when I had a bad concussion due to a fall on my head. my SLE is infant onset, but no one ever told me I had lupus, and my SLE went untreated, except for emergencies, until 3 years ago.

At its worst, I was off work for months, unable to drive, barely able to walk, vvvvvv depressed and frightened...so I vvvvv much feel for anyone who experiences this... Well, my version of "dizziness+fatigue+brain fog" first became seriously severe, back in the '80s, the nhs thought it was labyrinthitis & put me on meds while ENT took months to do multiple arduous tests & exams for meniers etc. in the end the ENT consultant said it was 'benign non positional vertigo' aggravated by the early neck injury causing arthritis & spondylosis. An ENT second opinion confirmed that diagnosis & took me off the meds which apparently can make the dizziness etc WORSE if used long term....those meds were addictive, so I had to come off gradually. Eventually I vvvvv gradually got back to work, but my susceptibility to dizziness+fatigue+ brain fog remained heightened so I had to learn to pace myself vvvvvvv carefully all the time.....any extra stress or strain would bring a flare on

Anyway, all these years, I've continued to carefully manage my predisposition to these symptoms....mainly via postural training+pacing activity +meditation+daily naps + treatment for my spine conditions, and now I know these dizziness+fatigue+brain fog symptoms are partly caused by my version of SLE....and hooray, these symptoms do flare less easily now I'm on daily hydroxy+myco+ pred tapers

So, am wishing you all the very best, take care xo

[jayfer]

Thank you barnclown. Interesting as I had severe whiplash years ago and asked rheumy to do a neck xray as I thought that was where the problem stemmed from. The results, he described as normal wear and tear. I also had balance test at ENT dept. I do have vertigo, confirmed again this weekend as I tried a boat ride over aqueduct, and as much as I love boating I felt ill and dizzy on the aqueduct. I'm going back to GP next week as he only gave me 1 months tablets so am now wondering what steps he will take. Must admit I feel lots better on them. I will let you know what he says , take care x

[faetheness]

OH NO ... don't tell me - tinnitus is a thing of Lupus????

How will I ever know what is a Lupus thing, and what is "normal" growing old or just not-well stuff?

[jayfer]

hi faetheness. no I don't think tinnitus is a lupus thing. I have a hereditary hearing disability and thought it was part of that, mum is profoundly deaf and has tinnitus but not lupus. But you're right, I never know what is lupus/age or a n other illness

[kazp]

When did you last see your GP as many meds cause dizziness. Fatigue is a main factor of Lupus and can be very hard to come to terms with, its so difficult to explain to some Drs as well one minute you're great and the next you are so tired and annoyed !"

[jayfer]

hi thanks for replying. I saw my GP 3 weeks ago. The dizziness has been around longer than the meds, it just increased and became frightening when the fatigue took hold. The tinnitus was far worse too. The new medication does seem to be helping, I have another apt next week but unfortunately the GP who put me on them is on holiday so unsure what will happen when I go. Maybe a new face will have new thoughts!!