Sudden hearing loss

I'm in the process of being diagnosed through the bechetts center in Birmingham UK.

All day, I've had sever tinnitus, an a feeling of fullness in my ear. This is getting worse by the hour. I'm dizzy and having trouble hearing. My head feels like it's going to explode.

I'm not sure what to do. A&e wont have a clue about this disease.

Can someone please help?

10 Replies

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  • If you have sudden hearing loss then that can be a red flag symptom that needs investigation. A&E only treat and investigate symptoms, they don't necessarily have to have excellent knowledge of the underlying illnesses

  • A & E won't know about the bechets itself but if this hearing problem is because of an inflammation coming on (caused by bechets) they will be able to order tests to find this out and treat it with blood thinnners/steroids if necessary, in other words, though they won't know about the disease they will know about treating its symptoms -as other types of diseases often cause the same symptoms. So I would go to A &E -where they can order an MRI and see what is up. Hope this helps😀

  • Hi yes I get a lot of this and am now seen by the ENT clinic. I haven't mentioned it to my consultant because I didn't think it was BD related. Anyway it's been happening for many years eats feel blocked and when I lie on either side it is painful and often a noise like swishing, it always coincides with terrible headaches and a feeling that my head will burst. The ENT have said there is nothing wrong with my hearing but I do have a lot of wax very low down inside, also it affects my nose and bridge. The think it is sinitus so I have been getting my ears syringes at the hospital with a special machine and it does help. I am waiting for another appointment with the consultant. There were times 6/7 years back when I wanted to throw myself off a cliff as the pain and lack of sleep was unbearable. I'm lucky I have a wonderful husband who helped me through the worst weeks. I do hope this helps and do mention this next time you are at the BD clinic. I would be interested to know what they say.


  • U need to look into relapsing Polychondritis. It effects the nose and ear csrtilage and can be found with Behçets. I have had RP for 20 years and just got diagnosed with Behçets.

  • You may have a sinus infection. They can be caused by food sensitivities, and I believe we are more prone to them due to having a more fragile gut. I had sinus infections repeatedly until I stopped eating dairy. The symptoms described here sound just like the ones I had.

    If this is also your problem, no drugs or surgery will help, you'll have to give up the offending food. I suggest an elimination diet. I recommend The Myers Way by Dr. Amy Myers, that book really helped me fine-tune my diet and figure out precisely which foods do and do not work for me.

  • Hi CK

    I agree with some of the below. A specialist and an audiologist with a comprihensive hearing test and MRI is a good idea. I have lost 50% of my hearing and it was diagnosed due to my BD. Like it was said below, it is the inflammation from our BD that causes it. Sometimes it is temporary and sometimes it is permanent.

    After tests, doctors might change med dosing. Adding a tapering dose lf Prednisone or Methypred (less side effects).

    I know this is a very stressful time. I hope the doctors can help find some cause and get you to a more comfortable place :)


  • Sorry don't have time to read everyone's response, but I too had this so badly it was sending me crazy. I ended up on Colchicine and it almost went completely in 1 week. It will increase to a mild ringing when I'm in a flare but never wakes me up in the middle of the night now. My GP couldn't believe it had worked so quickly and apologized for not putting me on the medication earlier. He wanted a full list of problems it had helped with. So lovely. Also explained it made logical sence as it would be swollen veins pressing on nerves etc causing the pain. Good Luck

  • CKett1 sorry to hear about your symptoms and I hope you have now seen someone about this. As you are seeing Birmingham CoE, a good start is to call them to discuss. Email me to let me know how you got on. Best wishes.

  • Sounds very much like Meiniers. I have intermittent tinnitus with sensoryneuro hearing loss which the docs think is from Relapsing Polychondritis, which i also have. The 2 together is called MAGIC syndrome. But I do think it cld be from Behçets. I think there is a lot of overlap

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