Hey there friends Nice to meet you all my name is James I am a 27 year old full time musician living in the UK London, I was diagnosed with Minieres about 4 years ago. I suffered ear trouble through all of my childhood and ended in me perforating my ear drum in my right ear. I didn't notice any real symptoms until the fullness started in my right ear several years later and as that continued I decided to see my doctor which after scans and tests confirmed I was a sufferer of Minieres. I at first was just relieved it wasn't anything like a tumour but as I have grown older I have found the hearing in my right ear has just got so much worst and would maybe say has left me with very little hearing in that ear. I have suffered very light dizzyness and up to now nothing worst which I am greatfull about. As a full time singer songwriter I live in constant fear of it spreading to my right ear and have started notice a slight feeling of blockage which i am not sure is more me worrying about it, but still I just am looking for any advice or tips or perhaps diet advice and things I should 100% avoid. Anything I can use to try and slow this process down or just ways to try and fight this horrible condition. My Doctors and specialists have given me very little support and have been very uninterested in my fears. I have been on and off taking tablets called Serc 16 (Betahistine) which I dont really notice makes a massive difference or I cant tell if its working or just the general coming and going of the condition. I have been told cutting down on salts and alcohol and coffee helps which I am going to try but I just wasn't sure if you perhaps know any good contacts in the UK or any advice how I should move forwards. Any help would mean so much to me I really don't feel I have anywhere to turn and I am terrified I am going to end up deaf and no longer live my passion which is my music as I have been lucky enough to make it my full time job for the last 2 years and dont want it to get any worst. Thanks for taking the time to read this. James
Hi James, what dosage of SERC are you taking. research shows high doses help Meniere's..see link below http://www.mediafire.com/view/lpb0v991ew69v66/High-dosage_betahistine.pdf Also many of us including me get symptom relief from antivirals, but since you are not getting vertigo attacks after 4 years of being diagnosed, I am wondering if you do have Menieres, or vestibular migraines, (silent migraines) which is often misdiagnosed as Meniere's. Look through our forums database for MAV and see if it sounds like something you experience. Foods to avoid for MAV aka vestibular migraines are listed in the forums DB and for Meniere's food triggers are foods with higher arginine to lysine ratio
Hey there Vicki thank you so much for the response firstly and nice to meet you, I am currently taking 16mg of the tablets 3 times a day I havent been very good at taking them on regular bases but i will try and be more strict and ensure I keep taking them. I looked into Mav which is something I do need to look into in more detail but I would say I occasionally feel slightly dizzy but nothing like the extreme symtoms I have read on here also could the Mav explain the extreme hearing loss? I will look into the antvirals also thank you very much James
16 mg 3 times a day is a lot lower than what they say should be the dosage for Meniere's. The study says 228-480 mg a day. Usually with MAV there is no sustained hearing loss, hearing fluctuations yes though.
oops 288-480 mg a day and nice to meet you too. in the forums DB there are threads about antivirals Look for Dr Gacek's publications
Hi James, Welcome You'll find a treasure trove of information here. I hope you'll read some threads regarding your problem and good luck in finding something that helps.
Hi James, I'm pretty new here too. I would recommend drinking lots of water as well as lowering your salt, alcohol and caffeine. Also, if you can find a specialist in treating TMJ (not just a dentist), check to see if you have TMJ. Some symptoms mimic Meniere's, such as ear fullness, dizziness, and hearing loss.