Ménière's too

[Anjigrunty]

Does anyone else have Ménière's as well as SSc? I've had symptoms of Ménière's for 18 months but consultant said no definitive diagnoses as my hearing test was normal although it was likely. Episodes of tinnitus and dizziness have increased recently and I had a bad episode whilst driving. GP says as far as he is concerned it is Ménière's and I'm not allowed to drive til my next appointment with consultant. Is this commonly linked to SSc?

[judyt]

The only comment I can make from my own experience is that I have Scleroderma, Sjogren's, PBC and a condition which has been called Benign Positional Vertigo and I have Tinnitus. I don't think it is actually part of any one of the Autoimmune conditions I have but it can be a real nuisance. Sometimes it is really bad but lately I have not had many attacks of dizziness and vomiting. Just another one of those things we have to put up with!!!!

[chockers]

Yes i have it . See someone in ENT As there are ear ops which will stop it . Meniers is an auto iummume thing of the ear but if its linked ???? There is a treatment which if your ENT is trained they can do it .It takes 15 mins . NO DON,T DRIVE . Tinnitus is brain noise and there is no cure . I also have scleroderma but that came on later ... The is a meniers club thing someone would speak to you on phone

[Annie_M]

I have scleroderma and Menieres and thought they were unrelated, although both were diagnosed around the same time. Certainly my ENT consultant and rheumatologist haven't made a connection. Very interested to hear whether others suffer from both.

[denden]

Hi Anjigrunty, I have been diagnosed with Ménière's since 1994. As far as I know it is unrelated to SSc. Please note that Ménière's and Dizziness are not the same.

Ménière's disease is a rare disorder that affects the inner ear. It can cause vertigo, tinnitus, hearing loss, and a feeling of pressure deep inside the ear and progresses through different stages. In the early stages, most people have sudden and unpredictable attacks of vertigo, accompanied by nausea, vomiting and dizziness. Sadly, there is no cure for Ménière's Disease :-(.

However, if you suffer severe vertigo with or without nausea during an attack, discuss with your GP what possible medications that can help to alleviate your symptoms during the attacks perhaps you could ask about Buccastem that help with the nausea or Betahistine to help reduce the frequency and severity of attacks of Ménière's disease.

You should watch what you eat preferably be on a low-salt diet and avoid excessive caffeine found in tea and coffee, etc.

In my OWN experience, the attacks are sudden and on a good day last around two to three hours although it can take a two or three days for the symptoms to disappear completely. I hasten to say that the symptoms and severity of Ménière's disease vary widely from person to person.

May I encourage you to ask your GP to refer you to a ENT specialist as soon as possible. The earlier it's properly diagnosed, the better. If your experience is anything like mine, it is very debilitating

Please do let us know how you progress with this

[Anjigrunty]

Thanks, I thought I'd referred to my visit with ENT consultant in original post. His letter to my GP stated likely Meniere's his hesitation was due to my not showing signs of permanent hearing loss in the test although I have a lot of episodes of muffled hearing as well as the tinnitus during an attack and it is sudden. Yes I have severe nausea. Didn't mention all my symptoms as I'm not looking for a diagnoses here just wondering if there was a link to my SSc. I've got a follow up with ENT consultant in 5 weeks. Meanwhile the episodes have become more frequent. Was every couple of months now every week with lots of hearing disturbances in between.

[julielu]

A family member has deafness, vertigo, Scleroderma and Raynauds. Has anyone investigated connection to possible K2 deficiency ? Especially if taking Vit. D and calcium supplementation or in conjunction with low fat diet or with heart cholesterol issues?

Reason:

K2 is needed to direct calcium into bone and has been associated with hardened of soft tissue in conjuction with diet deficiency and or imbalance.

K2 was normally sourced from grass-fed dairy and meats. Without sufficient K2 to guide Vit. D where to deposit calcium, it appears that Vit. D doesn't distinguish between soft tissue and bone.

Anyone on long term fat reduced diet may be at risk of K2 deficiency. Being a fat soluble substance, K2 deficiency may occur with avoidance of full fat dairy products /meats. see The Calcium Paradox by K. Rheaume-Bleue

[chockers]

I have had my ear sorted by a surgen . Its wonderful now to be able to balance .They can now do what i had done via E.NT By putting something down ear . . There are cures for meniers or help