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Behçet's UK
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pulsatile tinnitus?

I have ended up with the complications of severe left sided pulsatile tinnitus due to Neuro-Behcets, it really is ghastly to say the least. It started to get much worst after I had major surgery four months ago for kidney cancer. I wonder if the "trauma" triggered its sudden onset ( I had it periodically for a couple of years but notthis severe) I have stenosis of the Basilar and vertebral arteries, my recent MRI showed a worsening due to the behcets. I just wonder if anyone else has ended up with this complication and have the found any respite, or the right specialist to deal with it, or can anyone recommend anything via their own experiences. I wrote a week or so again about starting Humira ( which, finally, today, I do!) My Rheumatologist is certain this might help halt the progression of the disease within these arteries. Thank you so much, and I hope you have all started this new year feeling hopeful and stronger.

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Hi there, after reading your post I can utterly sympathise with you. I having lived with tinnitus and hearing loss for the past 10 years. With me it was one of my first Bechet symptoms. Initially it sent me bonkers but I managed to have tinnitus retraining therapy with a therapist at the hearing and balance centre. She taught me how to live with it. I also developed little tricks to help me manage like listening to soft music and having a fan on at bedtime ! The two noises help. Avoid eating at noisy restaurants . Keep busy (hard to do at times). Anything that takes your mind off it. Mine hasn’t changed in all this time I have learnt to tolerate it. Amongst all my Behçet’s related problems (including kidney failure and uvietus etc) the worst by far was trigeminal neuralgia OMG worst pain Ever. Luckily it only lasted around 3 months. Good luck with Humira I really hope it works for you.

Regards Helen

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Helen, thank you. I am sorry you endure so much and appreciate your kind and empathetic words.

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I think I have had this recently, is it like a really loud whooshing in your ear, like blood being pumped, with what sounds like a sheet of metal being struck with a hammer in the distance in time with your pulse? I have had it just a couple of nights, but think I have had it before in the daytime and not paid much attention to it. I often have a strong thumping in my neck at that side.

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Yes, that is it. Have you had it checked? Mine use to be only at night but since surgery it is now constant. Horrid. I hope yours eases up.

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Hmmm.... I took a flight last summer and couldn’t clear my eardrums and ended up having bilateral eustacian tube dysfunction despite months of antihistamines and prednisone. I’m wondering if this is related to neuro Behcet’s? Good luck with the humira!

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Thank you! Good luck for you too!

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I wound up with sharp left ear pain, near constant tinnitus for four years after contracting an ear infection my young son had. ENT could not offer relief. Rheuma. just chalked it up to bizarre Behcets symptoms. I was fortunate to have a friend of the family, a physician, willing to try off label Botox injections behind my ear. Though not perfect - after injections every three or four months for a year the pain has significantly improved. Tinnitus continues intermittently and occas eustachian tube dysfunction. But overall much better.

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I've had Pulsatile tinnitus for a few years now. At the London clinic they weren't sure if it was related to my Behcet's but they did say that it's possible as I have a lot of scarring in my throat/pharynx from ulcers, particularly on one side, which is the same side as the ear in which I have the tinnitus. The scarring could cause some disruption. I mainly only notice it at night when I go to sleep, and it is literally like hearing your pulse in your ear. I have some hearing loss in that ear because of it. I find it difficult to hear people talk in loud environments as well. It's extremely annoying and being a classical musician, I worry about the hearing loss. I'm interested to know what Dr's have said to you regarding the relationship of Behcet's and tinnitus?

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Gosh, yes, you know what it is like, I am sorry I pray yours eases up for you, I understand how intensely aggravating it is. Mine used to be at night but now it is constant, relentless, I feel such pressure in my head. Yes, I also have throat scarring more on one side than the other, and funny you wrote that, as this is on the side of the PT, the left. Mine is fierce, I have other really debilitating neurological symptoms with it. My Dr said the major arteries to the brain, both basilar and vertebral are suffering from severe stenosis caused by the behcets inflammation. I have just started the Humira in hopes for a miracle or at least some positive change. I wish you well, I really do.

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I have the same pulsating noise in my ears too and didn’t even know this was a symptom of Behcet’s. I was just diagnosed with Behcet’s because of chronic mouth ulcers that wouldn’t heal. I’ve been taking colchicine for 2 months and the ulcers are gone and also the pulsing in my ears. Thanks for sharing because I hadn’t put the symptoms together

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So sorry that you have to go throughall this. I sure dont have answers to your questions as my symptoms differ from yours, but I just wanted to commend you for being strong and brave throughit all.

Im praying for you.

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I have this too! I’m still waiting to see the neuro ophthalmologist. I’m afraid I have intercrainal

Hypertension. My vision and balance are also all off and with the terrible intercranial noise i suffer terribly. It’s hard to make it to the bathroom some days. The worst part is I’m still fighting for a official diagnosis of Behçet. All the doctors will tell me is that is looks like it could be Behçet’s but they are not sure. It has been a frustrating 4 years of symptoms.

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I never knew it had a name. As a kid I would cry because of the noise. As an adult I just told myself I’m hearing blood vessels and that’s normal but not a ton of friends have commiserated with me. I have arterial involvement in my abdomen, and poor general circulation because my autonomic nervous system doesn’t know what it’s doing sometimes 😂

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I was just diagnosed with Behcet’s and don’t know much about it. I had been diagnosed with Psoriatic Arthritis, but I think it was Behcet’s all along. I’ve had the tinnitus as well, but didn’t know it was an attribute of Behcet’s. I started having terribly deep ulcers in my mouth about a year ago. The drs tried everything to heal, but to no avail. Finally my dentist and rheumatologist put if all together and did a biopsy. Then I was diagnosed with Behcet’s. Since then, I’ve been taking colchicine. The ulcers are gone, but I have massive inflammation in my body and my rheumatologist wants to start Remicade. I’m a little nervous because my body reacts so much to medications and I don’t want to get worse. I’m so glad I found this support group and any knowledge would be appreciated.

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