dizziness and lupus

[JLAR01]

hey all, I hope you’re all as well as you possibly can be.

I feel so bad moaning when I know I could be a lot worse but I was recently diagnosed with Tumid Lupus (a chronic rare form of cutaneous lupus) but I’m presenting symptoms of SLE. I’ve been referred to rheumatologist but still waiting. I have had severe dizziness and light headedness for a month now, no medication seems to help and my GP isn’t really doing much to help me. Is anyone else experiencing this or has experienced this? I’m worried it’s related to Lupus and need treatment but I’m not getting any 🥲

Thanks in advance.

Stay strong warriors

J x

[tiredmum]

I too suffer with dizziness, I have been put on betahistine and procolperazine / stematil . They really help but it hasn’t stopped it. You should also get your blood pressure checked incase it’s too low .

[JLAR01 in reply to tiredmum]

Thank you so much for your reply. I’m on betahistine but they will not give me anything else. No I agree, it helps but doesn’t stop it. I’m getting my blood pressure checked regularly and it’s normal range of very time 🥲

[lupime]

I suffer from dizziness, balance issues and vertigo, mild hearing loss and tinnitus. I was told by an ENT consultant that it is due to inner ear damage which could have been caused by the Lupus, but we will 'probably never know'. I have a steroid nasal spray which keeps my eustachian tubes clear. I have recently started with hearing aids which have helped with the hearing and with the tinnitus. I have had a course of Cawthorne Cooksie exercises with a physio for vestibular issues. These have been helpful. The physio said she thought I also had vestibular migraine. Dizziness can have lots of different causes.

[JLAR01 in reply to lupime]

Thank you for your reply. This is very helpful, I’m still awaiting my ENT referral. I’m booked with a physio next Thursday so hopefully that will help also 🤞🏻 migraines are also something I have been struggling with for the last week or so, but I do find neck massages help.

Thank you 🤍

[MusicalFurbaby]

I live with 24/7 dizziness and have SLE. My BP is also normal and every test has come back normal. I have been diagnosed with Mal De Debarquement syndrome—the perpetual sensation of being on a rocking boat. It was triggered by a period of unusual stress in my life, and it hasn’t disappeared since. Nothing helps. I have no idea if it’s related to lupus or not (but with lupus, anything is possible). Let us know how your ENT appt goes, it’s also worth getting a battery of tests done with a neurologist to rule out other possible causes, eg. migraines. I have a history of migraines too.

[JLAR01 in reply to MusicalFurbaby]

Thank you so much for your reply. I can understand how frustrating this must be for you. Yes see I have the same, all my obs are normal. I was recently hospitilized again because of my dizziness they did a CT scan but showed no abnormalities which I was very happy about. I then woke up with complete deafness in my R ear and have been referred urgent to ENT for Friday 🤞🏻 they started me on prednisolone as protocol for sudden onset of hearing loss and I’ve felt so much better since - migraines have stopped, I feel generally better thinking maybe I do have SLE too???????? Funny thing dizziness has really calmed down since being on it too but I am on promethazine 3 times a day and prednisolone 12 tablets a day so hard to say what’s helping it. I’ve requested so many times for neurology but as my diagnosis is so new and I haven’t even seen rhumo yet no one wants to touch me 😭 I hope you’re coping okay, I can only imagine how horrible it is for you and I’ve only had dizziness for a month and a half and been so low as I couldn’t do anything, not work or see my friends. I hope you find a solution to what may help & please keep me updated if you do! X

[MusicalFurbaby in reply to JLAR01]

Thanks JLAR, I’m so glad the pills are helping, even if it’s unclear which one is doing what! Sometimes it’s the combo that hits the spot too. How frustrating that you can’t get in to the neuro, often the doctors think the rheumy is God so they wait on their opinion. One would think you could just get an independent referral to a neuro anyway, as that is probably what the rheumy will suggest. Anyhoo, good luck and let us know how you get on.

Unfortunately, I doubt my syndrome will ever get better. I’ve had it for 9 years and they say that the longer you have it, the less chance you have of it resolving. There’s no treatment for it either. I have been referred to a balance centre but haven’t followed up on it yet due to flares and other things taking over! But it’s nice to imagine something out there might help, isn’t it?

[JLAR01 in reply to MusicalFurbaby]

Thank you! Yes exactly that! I did speak to GP today and ask but he said to wait for ENT Friday as they may want to do this themselves. Thank you I will keep you updated, your support is very much appreciated. I spoke to Rheumatologist today and I’m only down as routine I’m looking at well over a year waiting list even though have suspected SLE alongside my Tumid lupus I’ve asked GP to write a letter expressing my symptoms and that I should be urgent but still looking at 45 weeks!!!!!

Oh I am so sorry to hear that. I completely understand that flares take over. Hopefully you’ll be able to sort something and get some answers or guidance! It is and hopefully there is something that can help you! Thoughts are with you 🦋💜

[MusicalFurbaby in reply to JLAR01]

A year?? Yikes! Well, fingers crossed for your ENT appt on Fri. Hope they give you something to work with. In the meantime, with such a ridiculous waiting time stretching before you, I recommend good quality self-care to see you through 😁🍰🍫🍩

[JLAR01 in reply to MusicalFurbaby]

Unfortunately ENT was a flop. They didn’t do anything at all; just told me as my hearing has slightly come back to stop my prednisone which I have said I need to be tampered off due to my lupus and I got “you’re young you can just stop it”. Very deflating. I plan on speaking to my doctor on Monday to see what else I can do as ENT disregarded all other symptoms such as dizziness 🙁 self care for now it is x

[MusicalFurbaby in reply to JLAR01]

Oh that sucks, I’m so sorry. Nothing worse than having your symptoms disregarded. Those kinds of appts are very deflating. Yes, good idea to follow up with your doc, and absolutely do the self-care - as much as you need.

[JLAR01 in reply to MusicalFurbaby]

It’s all I seem to get at the moment it’s so frustrating. But I’ll keep pushing on. Thank you I sure will!