Labyrinthitis

[Ktmc99]

Hi, I was dx in 2007 at age 35 but my first symptoms appeared at age 7. I’ve recently started having issues with Labrynthitis. Does anyone else suffer with this? Can anyone tell me is it linked to BD?

[jaynee63]

Hello that’s really interesting as I’ve had bouts of labyrinthitis for years now. Very debilitating but hadn’t considered a link with Behçets before. X

[Helsybellsy]

I've only just been diagnosed with probable bechets but interestingly I've had labyrinthitis and vestibular neuronitis multiple times and Drs have previously said it's unusual to get it multiple times. I've often wondered if there are some links.

[gillianTS]

Not sure if these are helpful:

pubmed.ncbi.nlm.nih.gov/114...

bestpractice.bmj.com/topics...

[SSLondon]

Hi, this is interesting. I am not yet diagnosed with Behcet, but the symptoms are all there (since a teenager - now 47) and I am at the centre of excellence next month. Also not been diagnosed with Labyrinthitis, but have lots of audiovestibular issues that i’m trying to figure out. I also have Ehlers Danlos and neck instability, so it’s really hard to know what symptoms are related to what !

maybe balance/hearing issues are Behcet afterall ?

I’m actually in a flare today. Currently laying still on the bed, as any movement makes me feel really woozy, off balance, slightly nauseous. Does this happen to you? It’s usually always when I first wake up and lasts for days/weeks. Even when not in a flare, any change in direction, makes me off balance. Neurologist diagnosed vertigo, but something else is obviously going on, as lots of hearing issues too.

hypersensitivity to noises seems to be getting worse and certain noises (especially if more than one noise at once), makes me feel really woozy/dizzy. Also, and this is a strange one, same symptoms are brought on if I am near large electrical equipment (lifts/large fridges in coffee shops etc!)

x

[Ktmc99 in reply to SSLondon]

I have had many bouts of labyrinthitis over the past few years. This time it started with dizziness and balance issues as well as an horrendous headache. Started Sunday lunchtime and by 4pm I had extreme nausea and ended up flat in bed unable to function. I developed a high temperature along with vomiting. I had raging tinnitus (more so than usual) and I swear I could hear my eyes moving! It’s the worse bout I’ve had. Today is the first day I have managed out of bed and have been able to keep any food down. I’m going to get in touch with my Rheumy tomorrow and see what they say.

[gillianTS in reply to SSLondon]

SSLondon. I have Ehlers Danlos too. Very hard at times to determine if pain in joints is related to EDS or BD. Besides joints, mainly all big joints but head, neck and jaw involved too. I have very bad muscle stiffness, it never leaves me for very long. Despite paying for deep tissue massage treatments the relief is short lived. Go to bed like it and wake up worse.

Neurologist says I have migraine and this is what is causing everything. Oral and Maxillofacial tends to just agree with Neurologist but I know I suffer from a form of Bruxism, I do not grind my teeth I clench my teeth during sleep only, despite using mouth splint every night.

I have acute hearing which is vety painful at times, head pressure, bad pain in head, jaw, ears and something going on inside my head which acts like a internal tremor, all of which gets either labelled migraine or its all related to your complex BD issues. Everything gets blamed on BD because it suits them to close a door.

I have spoken to my Gastroenterologist and she is going to put me on low dose diazepam to see if it can help me, we will see. I need something as my life is driving me crazy and being passed around from one department to another is just not helpful, none of them talk to one another.

Incidentally, I have been reading several referrals to the CoE in particular London, referrals are coming away with no BD diagnosis. One of the latest ones denied a diagnosis was due to no signs of ulcer scarring. It appears these final decisions are made at the end of assessment by the lead person despite the patient showing several external consultants believing a BD diagnosis. Make sure you have a pointed brief history of ulcers occurrences, numbers, how long they last for. Any details of related symptoms, pictures and anything that proves your symptoms from tests.

[SSLondon]

wishing you to feel a bit better soon. Sorry to hear about the sickness with it too. Hopefully you can get some help at your next appointment. x

[012703060610]

I am not alone! I thought I was going crazy and haven't ever heard it called Labyrinthithis. I saw another that posted on having Elhers Danlos and I too have Behcet's, ED and something called relapsing polychondritis. My outlook is poor from all the non Behcet stuff. Totally agree that we may not know which disease is doing what to our bodies. My Rheumatologist hates labeling things as he doesn't believe any two cases are alike. So yes I have diagnoses, but the autoimmune community is so far behind in everything.