Vestibular neuritis

[Leenalina]

Has anyone had this? Very bad vertigo with nausea. Treating with Prednisolone 60 mg first three days, then 40 mg seven days. Not a lupus diagnose yet..

[Cindylynn]

I've dealt with vertigo and Menderes disease symptoms for about 5 years, my Dr always attributes it to the SLE - prednisone in high dose over short timeframe helped to tame it, Serc helps me manage it. Found that recognizing triggers and warnings signs, and controlling my environment as much as possible it's become manageable. Good luck... It took about six months for me to get well used to it really, and so to manage it. Triggers for me vary from bright fluorescent lights, flashy lights, vibrations, talking too much, certain movements - bending, sweeping, turning fast, noise, crowds, fatigue; trick is to stop what I'm doing and rest until I feel less fuzzy. Balance involves both the eyes and ears, so although the "problem" is in my ears, managing the visual generally helps.

[tennissenior in reply to Cindylynn]

Vertigo is usually caused by "crystals" that float out of the ear canal in a person who does not have Lupus. If it is indeed that type of vertigo, there is a maneuver called Epley that an ENT doctor can perform, using headphones on the patient and video cameras. If its caused by the Lupus or medications - there is really no treatment other than patience. I have SLE and experience vertigo more so in the evening when my body starts to give out. Some meds cause this as well. For example, after I take my Coumadin with dinner, I have heart palpitations. My doctor said they are not serious - but they sure are scary. I also have vertigo and the nausea comes from that. It's just another symptom we Lupies have to learn to live with.

[Suzie]

Hi, I have had vestibular migraines for many years. No headache just dibiltating vertigo attacks with vomiting. I found that migraine meds taken as soon as I feel the numbness in my face keeps it at bay. Since starting hydroxychlorocqunine I have not had any attacks it has changed my life. Yours may not be the same , I do feel for you. Talk to your Dr, and make sure that if you get regular vertigo episisodes you get a referal to ENT for a check up.

[Leenalina in reply to Suzie]

Thank you both! I am on hydroxychlorocqunine and I have APS also. It is interesting to hear that it might actually be connected to SLE.

[Barnclown]

am very much feeling for you leenalina

i've been managing my verison of this sort of thing since the mid '80s when i was in my 30, unaware of my infant & teen lupus diagnosis. lifestyle management was the only thing that helped back then...after lengthy nhs investigations ENT diagnosed labyrinthitis/paroxysmal vertigo/vestibular neuritis + arthritis in my cervical spine, which has basically turned out to be only a description of my symptoms, missing the underlying cause SLE, but discounted meniers disease or other conditions etc. i was told to discontinue the daily stemetil my gp had had me on for months. this was a very unpleasant phase and the symptoms took well over a year to settle down while i had quite a lot of time off work. and my susceptibility to these symptoms continued...the treatment you're being given now would probably have helped me a lot at this point all those years ago....well, basically my version of these symptoms became persistent and were allied to other Neuro Cerebral (NC) symptoms which continued to persist and flare alongside the vertigo... all becoming a chronic pattern which I was forced to learn to compensate for in order to cope generally.....but lifestyle management at least meant i could relatively reliably minimise these symptoms and carry on more or less, working from home often & not doing much otherwise: plenty of rest, learning not to feel anxious about these symptoms & their implications etc etc

i was finally diagnosed with infant onset sle 4 + years ago in my late 50s. when i'd been on 400mg hydroxychloroquine (plaquenil) daily for 2 years with my version of these persistent & flaring vertigo etc/NC symptoms not responding much to hydroxy (although other SLE symptoms had responded well) we tried a 10mg 4 week prednisolone taper which did settle these persistent & flaring vertigo/NC symptoms. so my consultant tried me on a steroid sparing regime of daily mycophenolate cellcept with 3 x 10mg pred tapers a year as necessary when these vertigo etc/NC symptoms flare significantly. one year on, my therapeutic myco dose is now 1000mg per day, and so long as i continue to lifestyle manage effectively, i can avoid taking the pred tapers, but at least i these tapers really do settle any vertigo/NC flares that happen....and meanwhile, this treatment plan is allowing me to feel better than i have since the 1970s!

am wishing you all the very best with your diagnostic process

[Leenalina]

Thank you Barnclown! You have gone throuhg rough times! Good to hear that you have gotten help! I have had it now one week. But as you said Prednisolone has helped and relieved and I can walk a little bit. This is not first time with me either, but they allways have been shorter periods.