hi my husband was diagnosed with MD in his left ear 25 years ago, he has suffered with tinitus and is almost completely deaf in this ear but could manage. Unfortunately in April of this year the hearing dropped over night in his right ear and tinitus also appeared which is different to the left ear so he has two lots of annoying sounds now going on. We were initially infomred he had a build up of wax and once it had been seringed this would go. It didn't we were eventually referred to a consultant who just said yes its menieres disease - you know there is nothing that can be done. He referred us to a hearing aid specialist but we found him very negative and just presumed that we knew everything about MD as he had suffered for so long, but my husband hadn't seen a consultant or been on any medication for over 20 years. The hearing aid has helped somewhat but as my husbands hearing changes on a daily basis it is very hard to get this suited to him. He had a bad bout of dizzy spells for around 2 months and was prescribed betahistine but he has stopped taking this as he felt he was worse. He then had around 5 weeks where the hearing was manageable with the hearing aid but it has now dropped again to virtually nothing.
i suppose i am after some advice and help from anyone who has suffered similar, we have got another appointment with a different consultant on 5th November but only got this after arguing it out with our gp. We just find that no one wants to help and my husband is getting very depressed.
Jayne, my name is Dan.
My history with MD is very similar. Mine started on the right and after many years moved to the left as well. It takes some time to get used to the new noise. Mine are both different.
Have you ever seen a neurologist? I was told by many doctors I had MD. I think most were just going along with the other diagnosis.
It was finally found (after 20 years).
I was having frontal lobe seizures.
MD has no effective treatment. Seizures do.
I don't have dizzy spells anymore, The tinnitus is still with me. I have had it so long I don't listen anymore. My hearing has gotten some better. I need to repair the connections in the frontal lobe that I damaged.
A neurologist is worth a try if you have not been this route. The test they gave me was called EEG.
Good Luck
Dan
Dear Jayne, I regret to hear of your husband's condition.
I can idenfity with him in many areas. I lost my hearing in my right ear about 8 years ago after having started with tinnitus in my ears about 15 years ago. The doctor then gave no explaination of reason for hearing loss except to put me on steriods for a short while. Since my left ear was functioning most doctors do not pursue further as you soon learn to live with one ear.
But about 3 months ago I had a drastic drop i hearing on my left ear followed by some dizzy spells for a few times. I went thru various test and after all came negative doctor felt it was MD. Meanwhile my hearing continues to deterioate and I have to use hearing aids on boths sides.
It is certainly depressing since it is life changing, Socially I have become more reclusive and adverse to dinning at noisy places as the noise into my ears can be overwhelming with the hearing aids and the stress of the noise may lead to a dizzy attack.
But I am slowly learning to live with it. Bear with the noise and shorter dinner or lunches time if the place is noisy or try focus on the conversaitons to make it less stressful. The dizzy spells is another matter as that can be crippling if it happens in an ackward place. So I try not be alone all the time in case I need help when the time comes.
Sorry I am not much help as I too am trying to overcome this situation. Just trying to ease myself of the stress when I wake up each morning worrying but try to look foward to doing something.
Hope it helps.
hi Terence thank you so much for taking the time to respond to me, I am sorry to hear that you too are suffering. If we get any other resonse from the consultant i will update on here. thanks again
Hi Jayne. I have suffered for over 17 yrs and if you see my discussions I am having a very bad time at the moment. My GP is OK but he cant do anymore for me. I have been under the ENT at local hosp but even he said he couldnt do anymore so suggested I see his colleague. I asked for an urgent appt but got one for Jan 15. My GP wrote another letter to chase this but I am still waiting.....Like you said it is difficult to get any answers. I have looked on USA sites etc...there is no cure but I just want to be able to manage it better????
I struggle daily. My balance varies. I have spins on a regular basis but 24mg of betahistine has helped me. I wear 2 hearing aids but my hearing is awful and fluctuates daily. I get spins in very noisy environments. Fluorescent lights affect me.
I am off work and dont know if I can go back to do my job safely anymore....very worried about long-term.
Keep us posted how your husband gets on.
thank you so much for your reply, it does help to know he is not the onl one suffering sodly to get help, its just so sad that you have to fight to get any help. hope your appointment in January goes well.
At last I have appt to see Cons on 13th November-he writes on this site. Will let you know how I get on???
Let me know how our husband es on.
How did your husband get on at the Consultant???? Was it useful. I am seeing a different consultant on the 13th.
Does your husband claim any disability allowance?
Hi miss kent I tried to claim disability allowance and they refused me saying I don't have a disability. I have suffered with md for nearly four years now and somedays I'm so bad and can't get out of bed x
I looked it up on the social security site and MD is a recognised disabilty...so I am going for it... and I will appeal if necessary...
I will let you know what happens
I have worked all my life and never claimed anything......I cannot even get to work and drive within my job.....
to update everyone my husband has had an MRI scan which came back clear, he is now using hearing aids in both ears (2nd set as the first kept breaking). He is still struggling hugely with tinitus in both ears and once again is having a bout of sickness and dizzynesss. He had a period of around 2 months where we thought the symptons had stopped and that it was settling down but it has reared its ugly head again. We have now finally been referred to a specialist at Addenbrooks hospital and are awaiting the appointment.