A strange one.. lost my hearing on one side ?med induced ?with unilateral weakness

[LottieLou96]

I struggle intermittently with numbness, weakness and cramping on my right side that sometimes means I can't use that side effectively that day due to lupus damage in my left brain. Despite starting hydroxychloroquine and finally having a lot of control of my seizures with lamotrigine, I have found that 80 percent of my hearing has gone from my left ear. Bizarre I know!

Could it be ototoxicity from meds? Could it be some more lupus brain damage? Tbh I feel more shabby with this mix of medication, as one sets of my lupus and other sets of my seizures (lucky me 😕). But I've been trying to stick with and get use to it all. But that's my good ear, sadly I can hear perfectly in my right ear but struggle to understand speech due to brain damage of various sorts.

Otherwise I'm well, just persistently weaker on my right and with this new hearing loss on the left. I may right myself off soon.

[PMRpro]

Was it sudden? ANd recent? If so, do check with your doctor. It may what is called sudden senineural hearing loss. It can be reversed with immediate treatment with steroids.

[LottieLou96 in reply to PMRpro]

Yeah I wondered this? Or wondered if I'm have nocturnal seizures and it's postictal? Nay idea, talking to my GP so will see. Thanks

[Melba1 in reply to LottieLou96]

Hello lottielou,

As PMRpro says if it is the lupus causing autoimmune inner ear disease then quick treatment essential as can be reversible.

I’m in hospital currently with similar issues and was treated with 3 days of high IV methylpred and awaiting cyclophosphamide. ENT, neurology and rheumatology took very seriously although I was initially a bit dismissive of their concerns, thinking it was just damage from having had meningitis in January and lots of gentamicin (known to be ototoxic) as mine wasn’t sudden. Started with tinnitus (which I always get mildly in brain flares) then one ear deep pain and hearing loss then crazy very loud tinnitus in both ears and, which worried me far more, loss of balance and vertigo.

The high steroids have helped a lot but some permanent damage so do get help ASAP. Obviously yours might be different but best to check.

The lupus professor said it’s very rare - only 1% of people with lupus, but mostly reversible if steroids given quickly. ENT usually do 40-60 of pred but I had 250 x 3 of methylpred as other parts of body and brain affected.

Good luck x

[LottieLou96 in reply to Melba1]

Thankyou Melba1,

Trying to not be dismissive. My GP is telling me it's nothing to worry about, and that there's nothing wrong. And will only give me a face to face in 2 weeks if it hasn't resolved sadly. I'm gonna talk to my work, ED, and see what they think.

Xx hoping you get to good health soon

Lottie

[StriatedCaracara in reply to LottieLou96]

Hi Lottie

I had a day when I completely lost hearing in left ear.

I had just taken a phone call using my right ear and sound then became so amplified in my right ear it was scary.

Tried to see GP but he said wait two weeks (typical answer - wait and see). It resolved.

Your ED though sounds promising or contact your rheumy team for advice (maybe do both)

I'm looking online to where groups might be doing research into Autoimmune Inner Ear Disease (AIED)...There is research into Tinnitus at St Georges tinSLE project

In my case I think it must have been my 'brain' as both ears affected - but in opposite directions...

As a passenger on the back seat I had a car accident affecting the right side of my head a few years back (and any numbness, weakness and cramping, only come on since auto-immune stuff started) I get on my left side.. .

Hope and praying you get an answer soon. Let us know how it goes. Take care Lots xx

[Melba1]

That’s very bad of your GP. Can you call rheumy? Sudden onset hearing loss is considered a medical emergency - hopefully your ED pals can help but autoimmunity so misunderstood not sure where we go for expertise sometimes! X

[LottieLou96 in reply to Melba1]

I know, sadly I have to wait to hear back from the rheumi advice line. I don't know if it's post seizure, but it just doesn't seem right to me, I've never had it before. I don't know what to do all in all. Worse today, I seem to have broken another rib whilst sleeping. I haven't even managed to discuss these things bc it's.always one symptom per appointment. And in the end you just want to give up trying. Bc it can make you seem like a psycho to them.

[Melba1 in reply to LottieLou96]

Don’t give up, but totally understand that feeling when we have so much going on.

Seizures, sudden hearing loss, broken ribs - I think you know what I’m going to say and what you’d say if it was anyone else?

A&E I think especially if rheumy not responding quickly. I emailed my rheumy about my ears and got an unhelpful (and delayed) response but I have excellent GPs who made me go to A&E and it was all taken very seriously there - and I’m still in hospital now.

Just seen a hilariously rubbish rheumy who wouldn’t listen at all, told me I was so complicated and shouldn’t be in a local hospital and he couldn’t give cyclophosphamide as prescribed by other specialists so would have to be under haematology then proceeded to not listen to me at all and totally misunderstand my blood results and tell me I had ovarian cancer (I just get a high cancer marker when I’m flaring) and severe arthritis (one ankle was very swollen from having a drip in that foot that had tissued earlier!!) so I didn’t have much faith in his judgement!

Do get quick help. Sounds like a lot going on snd the quicker these things are caught the better even if we do have to face numpties along the way! X

[StriatedCaracara in reply to Melba1]

Concerning that anyone should think you should not come under a local hospital - I thought everyone could use local A&E for anything..

Hope 'rubbish rheumy' has finished their rounds and better, much more knowledgeable staff are with you now.

Look after yourself Melba and continue to 'Educate them' .

You are brilliant at teaching them....even when you aren't well.

Lots of Lupie medals 🏆🎗️⭐Take care xx

[Melba1 in reply to StriatedCaracara]

Thanks! Well rubbish rheumy came back today and was obviously cross that I have a kidney infection now as he’d ‘spent all day’ organising cyclophosphamide and now might have to change it 🙄🤣

My local hospital is actually sometimes very good and lovely doctors who know my ‘complexities’ well but just don’t have all the specialists on hand as bigger ones do. But I have an amazing endocrinologist who I feel very safe with and even emailed me to say sorry he’s sick himself this week so can’t see me but gave his opinion and said he’d be in email contact as soon as we need him 😍 so there are some amazing caring doctors around - we just need to search carefully and teach some!

See you’ve had ear problems too? Do get quick help next time and tell your GPs people with Lupus need on the day appointments!

Google Melanie Sloan’s latest papers on ‘abandonment’ and telemedicine and there are quotes from the lupus profs saying that is essential. Another one to give to your GPs!

X

[StriatedCaracara in reply to Melba1]

Your Endocrinologist sounds wonderful.⭐ 🦸

Thanks - Will Google the papers on ‘abandonment’ and 'telemedicine' and incorporate links into next GP eConsult. Relationship with GP so improved now - and he is reading the links I send and now even sending me links.

Want to hear that you are on the mend Melba .

All the best with teaching the newest challenges...🤸‍♂️🙃🤗 x

[LottieLou96 in reply to Melba1]

Your totally right Melba1,

You just get tired of waiting and I'm not the best at advocating bc I find that GPs can be stubborn as heck to me and resist bc they know I work in medicine.

At ED, tonight, sadly as a colleague as they don't want me as a patient and say it's not that bad youre still standing. It's not an emergency, per se.

[StriatedCaracara in reply to LottieLou96]

Hi Lottie

You are stronger than you think - go for it 🤗🙏

ED / A&E - Please get everything sorted

xx

[LottieLou96 in reply to StriatedCaracara]

Thanks for your messages SC,

I went to work aka. ED, this evening, I do say I'm not well, but they ain't taking me seriously really. They just want me to be better and faster. They gave me a wee talking down tonight as well 😞 halfway through a shift, but I'm pretty just in pain and tired. No sympathy in my line of work if your a colleague, you must have something 'impressive'. I've had a roughish few days with haematemesis from aspirin use but I still came in the whole weekend. But I held off yesterday and well they weren't happy

I'm just a bit tired of keeping getting told to wait. I need to advocate better for myself, as when pts need a specialilty I literally tell them they have to take them and they will get the above treatment.

[StriatedCaracara in reply to LottieLou96]

Re: Hospital - Is there another ED around near where you live, you could go to - so you did not need to be treated by colleagues?

In the longer term is there any staff support at the hospital you work at, that could help advocate for you workwise and health wise?

Re: Getting GP on board, if you google 'Melanie Sloan' and find papers about diagnosis ‘medically explained symptoms’, ‘is it me’ and ‘but you don’t look sick’ . One of them I forwarded to my GP and it was a game changer.

[LottieLou96 in reply to StriatedCaracara]

Thanks SC for your concern x

There isn't another ED for a 100+ miles tbh. There's my supervisor that I have spoken to, but he's just like out of his depth. Health wise nope, I don't get NHS privilege haha.

I had to increase my HCQ dose again, and again it's likely just worsening my seizures, and maybe it's Todd's paresis after the seizures I just dk. But I haven't felt in general this run down for years. Not making leaps or bounds with the GP. And rheumi haven't got back to me. So as we all experience, we at times and often are left in limbo. Our diverse symptoms unappreciated as a whole.

I will chat to my supervisor this evening, I can only hope neurology also may be of some help.

All the best,

Lottie

[StriatedCaracara in reply to LottieLou96]

Hoping things improve, also that neurology does take things forward.

Re: Work

I have paramedic friends who returned to study (sponsored / scholarship) - and have then gone into teaching paramedics or worked in GP surgeries etc.

Still the satisfaction but tons more control of work situations - so can avoid worse moments (or people) and maximise better experiences.

Not sure if this any help but including in case might work - you have a lot to offer others as you care so much. You might even be able to help improve the way things are done in the NHS / influence standards at work etc.

Please tell me if I'm dreaming too much. Needed to throw in just in case might help, now or in future.

Take care. Hope you are feeling a lot better soon. xx

[LottieLou96 in reply to StriatedCaracara]

It's definitely hard to change the whole of the NHS. It doesn't happen overnight but it needs to happen I'm afraid.

I have always hoped to be Health Secretary one day, wishing thinking as well likely, and really recarve the NHS, before we risk loosing it.

Bless you x

Lottie

[StriatedCaracara in reply to LottieLou96]

Lottie for Health Secretary

and more honesty and staff being able to change things

My feeling is much of the NHS is lost already. ED might be different still, partly because you guys have to work so quickly and use your own instincts

....rather than press buttons on PCs that dictate want you are allowed to do.

[Sophiagracerosc]

Hi I see it’s been a couple of months scince you commented on this .. but I have lupus and a symptom I have recently had was the loss of heating in both ears which kind of gradually faded away for a couple of minutes and then came back .. it was most bizarre I thought I had permanently lost my hearing it was scary .. did you ever get any answer ? Xx thanks