Just reaching out for advice really. At Christmas I started to feel ill, I had a fullness in my ears and everyone sounded robotic, I couldn’t bare to be around people. This lasted a few weeks then came back for 2 days then went for a month. 4 weeks ago it came back again and 3 weeks ago I had a ‘attack’ in the middle of the night severe spinning where I couldn’t stand and I felt like my head was so heavy and sweating, and loud tinnitus eventually leading to sickness. It was scary. The tinnitus has remained since then. I managed to get an appointment with my ent consultant as years ago I have had 3 surgeries for cholesteatoma I have no hearing in my right ear anymore due to this. He suspects Ménière’s after I was just thinking it may be eustachian tube dysfunction. He places me on bistamine 3 times a day and said he’ll see me in 3 months. Also had auto immune blood tests. Anyway this week I started to feel like the sound tinnitus was heightened and last night I had another attack. So is the Bistamine not working? Is there anything I can do to help myself. I’m a mum Of 3 and believe it or not an interpreter so my ears are so important to me. Has anyone got any advice on what steps I should take next? I have ordered everything on the regime and will start it as soon as it arrives. I'm hopeful and grateful to come across this forum. **just to add on my most recent hearing test nothing has changed.
Jennie c, I am so sorry about your situation. I cannot speak to the betahistine as I have never tried it (it has to be compounded here in the US). However, there are 3 medications that have helped me. Valacyclivor (anti-viral) - Do you have cold sores or have you had shingles? I have had both and the shingles was on my right side - same as the MD. Lysine is the item in the JOH regimen that also works and may be easier to get depending where you live. Sertraline (SSRI) - I have been using 50mg of this since February 2025, and it has definitely helped with the anxiety associated with MD. This takes a few weeks to work. Ativan - This is as needed. I usually take .5 if I have a doctor/dentist appt. or when traveling. Doctors are hesitant to prescribe this, but I have not had to increase the dose since I started. Find what works for you and keep coming back to check this forum. I owe so much to the people who have posted here.
So sad to hear this. I am also a parent (a dad of three young boys) and know how it can affect you. I take 1g of Valacyclovir twice a day and the JOH regime. After I started taking both I was terrible for almost three months. Could not go two days in a row without an attack. Then I broke into the sunshine again. Fullness in the ear went away, hearing mostly came back and the tinnitus eased down. That was may of last year and have not had any issues for 8 months. I too had hearing issues for years before the attacks, but just chalked it up to “whatever”. A doc had mentioned Menieres years ago due to the fullness and loss of hearing, but said if it is not effecting my balance not to worry. There are a number of other ways to address this monster on this site. Look around and see what you think might be a trigger for you. For me, I get cold sores, and every time I have had one, I also had ear issues.
Hi Thank you for your reply. I've never had coldsores, I'm in the UK and have started taking Lysine this week. I am not having vertigo constantly but do feel light headed and fullness of the ears with tinitus which hasn't subsided in 4 weeks now. If I could only get rid of that then I think I would feel human again! I am waiting to receive the rest of the regime and praying that it has a helpful impact.
This sounds like MD I'm afraid, I had a similar experience at the start with pharmacists suspecting tube dysfunction but ER room diagnosed Meniere's, betahistine and on your way. Try the JOH but don't be disheartened if it takes a month or two to kick in. Anti-virals for cold sores are a option too. I never had cold sores so hard to tell. The betahistine can help so keep taking it, but its not a cure and in many cases only makes symptoms milder attacks shorter. For some, it does nothing. Becareful with vinpocetine, it can make alot of people hyped up, personally I can't take it after 5PM or im not sleeping. If your anxiety is already up it might key it further. JOH doesn't mention this, its a side effect for some.
I watch salt, generally keeping it below 400mg per meal, am gluten free, and careful with dairy and sugar. I take lysine daily, and I drink an herbal coffee. I have had periods of dizziness, and a drop in barometric pressure can make me susceptible to attacks, but I haven’t had a vertigo attack for a year now. Good luck. It can be challenging to find out what triggers you.
Has anyones ear fullness stopped? I am almost 2 months into the regime and pleased to say the attacks have subsided but the ear fullness continues.
I have occasional ear fullness. It is not a constant thing. I was diagnosed 3 years ago, and the attacks were awful then. Since that time, I have maintained a low salt, caffeine free (except from some chocolate), no alcohol, gluten-free diet and watch dairy and sugar. I added L-lysine to my daily vitamins, and it seems to have helped. It varies for everyone, I think. Good luck!
Hi Sunflower. So glad that your attacks have diminished since you were first diagnosed. The same is true for me. I am also following a low salt diet and use L-lysine daily. Moderate coffee, sugar and caffeine don't seem to impact my Meniere's. My episodes are triggered by hi salt food in bar food (which I now avoid), stress, anxiety, and environmental allergies. Biweekly allergy shots have been a godsent for me. Last month was the first time in 5 years that I've had an episode. Now I have daily ear fullness and mild - moderate vertigo. Just started new meds Betahistine HCL 8 mg and Azelastine HCI which are helping but causing extreme drowsiness. Hope you find this info. helpful.
Hi J Hi Jeanni -- I am so sorry to hear what you are going through with Meniere's. I had a similar experience 15 years ago that lasted 6 months. The good thing is that Doctors are much more familiar with MD these days and there are new medications to treat the symptoms and reduce attacks. My advice --Read everything that you can about Meniere's Disease (MD). I personally like the Mayo Clinic website for health care information. Adjust your diet - low salt, no caffeine, no alcohol, drink lots of water. Get tested for allergies and get allergy shots as needed since these are a common trigger. Try to reduce stress and anxiety. Consider taking low dosage anxiety meds as per your doctor. Consider taking Betahistine HCL (compounded RX) if recommended by your ENT.
I am also taking allergy shots, and I agree, they have been really wonderful. Betahistamine did not do anything for me, but glad it’s working for you. I hope to go 5 years without a vertigo attack! I will be flying for the first time since my diagnosis in a couple of weeks and visiting my daughter who lives at a higher altitude. Wish me luck!