Several years ago I was told I had labyrinthitis twice. The first time I had it, it took 6-8 weeks for my balance to return to normal. The second time it never really returned to normal and has been at a level where I’ve had to put up with it as medication and balance therapy have not helped. I have constant tinnitus in the form of ringing in my left ear and some hearing loss at lower tones. More recently I’ve experienced sinus/head/cheek pain on the side where the tinnitus is and my balance feels worse. I also have an enlarged lymph node on that side of my face that has been like that for 2 years (scan confirmed nothing sinister). The doctor said it is Eustachian tube dysfunction and I’m being referred to a specialist. I don’t think I have M.D. although it has been suggested as a possibility a couple of times, but my symptoms aren’t as disabling as many of you describe. It’s enough however to have an effect on my daily life and has caused me to have issues with anxiety. I guess my question is whether M.D. is always severe or can it be present in a more moderate form? I get spaced out/fogginess quite regularly and I’m sensitive to light, both bright sunlight and artificial lighting. Certain environments seem to make the symptoms worse - busy places with a lot of movement, patterned carpets etc. I also suffer with terrible travel sickness.
Mine is currently severe - off work for months, at one point daily vertigo attacks lasting 10 hours, now down to 3-4 attacks a week lasting 4-6 hours. All these attacks really do affect you balance, and the best thing to do to restore it is to walk about - even if you have to build up very slowly.
And no it's not always this bad, I can have months or even years where I feel perfectly fine. The month before it became bad I'd been on holiday in France, and had 2 short breaks in the UK. I'd been on trains, planes and buses, and walked miles some days. Without warning it exponentially got worse, and at some points I've been totally unable to leave the house.
I was diagnosed about 10 years ago, and this is the only time it's been like it is now. I'm having steroid injections but no lasting improvement yet
Hello KLw may I call you that in my humble opinion you have MD Im afraid it comes in many forms of severity mine is severe and on many occasions my head is ina bucket being sick and constantly dizzy its ruined my life lost my driving licence as I had my diagnosis over 30 years ago and have had a rollercoaster ride of symptoms all yours included so the sooner you get a positive diagnosis the sooner you will get the treatment you deserve .Johno
Hi John,
I guess I thought it couldn’t be that as I don’t experience the symptoms to the degree a lot of people are describing. I’m due at ENT at the end of the month so I’ll see. Sorry to hear that yours is so awful, it must be difficult to deal with that on a regular basis.
Thanks for replying. Sorry to hear you’re struggling to such a degree. I hope you can find some treatment that makes life easier.
I was diagnosed 5 years ago and not bad but this week it hit me like a Mac truck it’s been a week now. The fullness in my ear I can’t stand and the vertigo is the worst. Did you have any thing done by surgery that actually helps. I can’t kive like this
Have you ever had an attack of vertigo where the room spins and you have to crawl to the bathroom to vomit? Do you have hearing loss? If not then it may be some other vestibular disorder. But you need a diagnosis from a specialist in these disorders.
Hi! I am in a somewhat similar situation as you. I am not suffering as badly as some of our other MD sufferers, but my life has been substantially impacted. Uncertainty of attacks, limited driving, days of little productivity.
I have tinnitus in both ears, suffer an occasional to regular vertigo attack ( my external environment becomes quite unstable, and objects move a little) and spend most of my time in between vertigo attacks recovering (feeling light headed, dizzy and unsteady gait). It takes me a few weeks to recover from the Vertigo attack. I don't get nausea, or fullness in the ear.
I have been tested by Neurologists, Dizzy Clinic, ENT and they wont diagnose Meniere's with any certainty. There appear to be some common patterns in both diagnosis and management of Meniere's ie: tinnitus, vertigo are commonly occurring symptoms and low salt diet is deemed to be universally helpful. However, I think Meniere's tends to be variable, individual, and its effects on a person in a spectrum from mild to severe Just as its management is as individual as the person experiencing it.
At the end of the day, I have taken the perspective that it is all academic and I work on managing my day to day experience. I am currently not taking any medications, but manage my diet, stress, exercise and tiredness I'm not sure I've got it right as yet, but keep on trying to find what helps until the silver bullet arrives.
It would be a good idea to get a couple of specialist opinions as a baseline and then work out a management approach.
All the best
Freeze Frame
Hi Christine,
I had a couple of attacks like that but it was several years ago and I was told it was labyrinthitis. Ordinarily it’s more of a disorientation/imbalance which affects how I go about day to day life - walking next to a wall to feel secure, needing something to hold onto if I’m standing still in one place, struggling with busy public places etc. I have some hearing loss at lower tones.
Thank you, sounds like you are similar to me. I’m grateful I don’t have severe symptoms but it’s still enough to impact daily life.
I have had my symptoms bad this week, the only thing that has been helping me is to take a sudifed decongestion pill every three hours. Plus small meals and no salt lots of water.