This is huge for me!

I have just viewed Ivor Cummins interviewing the most interesting man Joseph Kraft. It is an informal interview and luckily for me, there are subtitles as Mr. Kraft at 95 years old is very softly spoken. I appreciated the subtitles because I am hearing impaired which is why I am so pleased to have stumbled on this youtube video.
Mr. Kraft talks about his early days in medicine and the foray into developing diagnostic tests for Diabetes and I was happily listening when all of a sudden he talked of ENT doctors being the first, or one of the first, group of physicians to take him seriously. And on screen there were associated conditions linked to T2 and one word jumped off the screen and blindsided me.
That word was Menieres. I have suffered with Menieres for over a decade but in my recent reading had not found a single mention of it but now some of the pieces of the puzzle are coming together. I have questions, lots of questions!
I normally jot down the date of a M. attack, the duration and recovery time. I also note down the drop attacks. But this is a separate recording to my bg/food diary. I shall now need a bigger notebook and take more detailed info and try to collate. Will my improved BGs be reflected in my number or duration of attacks, I wonder? I am quite excited about the hope this brings me.

Robbieswan said:

I read; and re-read this thread. Would you please tell me a little more on Menieres. What it is and how it affects you please?

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Menieres Syndrome affects the deaf and hearing impaired, it is unknown outside of the deaf community. When I was dx I was told the causes were unknown.
Menieres cause acute, severe attacks of vertigo, problems with balance and tinitus. I was told that my levels were considered 'mild' but that they would increase with severity over time although, the consultant who I saw did admit that he had known patients have attacks for a few months then never have them again. Research is ongoing.
I am not legally allowed to drive and shouldn't really have an electric wheelchair so I had to fight hard to get one. In between attacks my balance is affected so the fall risk is high.
I'm going to have to do a lot more reading in a different field (ENT) to find out if my LCHF will improve my rate of attacks (fingers crossed) or if it is a case of 'Well, the damage has already been done, go away and don't worry about it'.

I consider myself lucky, though. Many people with T2 also have dodgy blood pressure and as high blood pressure can trigger more and longer attacks I am so lucky that my bp has always been good. So, sometimes I am just dodging bullets which I am grateful for. That and having a supportive family means that my life is not all doom and gloom.

Wow! My very first search and it really has given me some hope. Not too much detail but still.

http://menieres-help.com/blog/1688/diabetes-insulin-and-menieres-disease/

Bluetit1802 said:

I am dead chuffed that you have found this information. I do know that Menieres is a dreadful disease.

I am now a bit confused though, because in my life I have known 2 people with Menierlabrynthitis my mother and one was a friend from my youth. Neither of them was deaf or hard of hearing. The friend was a young Flight Lieutenant in the RAF, and was unable to continue with that side of his career. My mum was diagnosed in her early 60's, and after dad died she came to live with us, so I witnessed at first hand exactly what the attacks did to her. Honestly, neither of them had hearing problems when diagnosed.

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Because the cause isn't known and age is or can be a factor this may have been applicable. This is what I was told on dx. As I said above, some sufferers have symptoms for almost all their lives, some do not and some are misdiagnosed with labrynthitis. The severity of attacks varies, too.

Interesting stuff. The tests I had to dx Menieres were horrible but at least I wasn't put through the horror of a Tilt test. More reading methinks.

Squire Fulwood said:

I didn't know that deaf people were prone to Menieres. I always thought that anyone was. You learn something new every day.

As I said elsewhere my giddies were BPPV and the man said that he could stop it by cutting the nerve in the ear but the possible consequence was that I would go deaf (deaf again get it get it). I didn't like the sound of that so I said that I would buy a seatbelt for my armchair so that I could watch TV and listen to music. He said that he thought I would say that.

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That was what was so scary at dx. The only true cure is the operation to sever the auditory nerve resulting in profound deafness. Not much of a choice if the affected ear happens to be your 'best' one.
Pity those people who have are affected in both ears, though very rare, their attacks can last twenty four hours.

I am grateful for small mercies. As to the people who have no hearing impairment, maybe the diagnostic tests have moved on since I was dx, like I said, more reading up.

woodywhippet61 said:

Do you have any warnings that the attacks are going to happen?

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Personally, I get 5-10 seconds warning of attacks, this mostly allows me to get into a safe, or safer, position. The drop attacks are worse in some ways. They are instantaneous so much more dangerous. I had one on the stairs once and fell top to bottom. Although I have no proof, I have a suspicion that this may have triggered my back problems.

Bluetit1802 said:

My mum had one right in front of us. We had been out and she still had her coat on. She was chatting away then bump! She was unconscious on the floor. Frightened us to death. Her eyes were rolling but she was motionless. She came round fairly quickly but had no idea where she was in the room. She had lost all sense of orientation. She said she would go to bed, but couldn't find the door, nor which wall it was on. Obviously, I helped her and got her into bed, by which time she had a humongous migraine, felt very sick, wouldn't even try a cup of tea. She was in bed 24 hours before she fully recovered.

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Aye, the recovery time is long. It is very tiring. The vomiting is very upsetting for me, too. I was dx when my children were young so I felt vulnerable and was easily upset by the attacks but they were lighter back then. The family are used to it by now but the disease curtails a lot of activities. Your poor Mum xx

An aside to this was that when I was first reading up after my dx I was reading the comments on an online support group before I decided whether to join it or not and my overwhelming take from the section of comments that I read was that some people treat their health as a bit of a competition as to who can be the most poorly. I found this very distasteful and did not join so my research petered out.

We all react differently to our conditions but the mainstay of my view is that there are always people worse off, always. Be grateful for small mercies, we are all here in an effort to improve our chances and that, for me, is why I think this forum differs from others in that it is not geared to a specific it covers all aspects of health and well being because our Diabetes impacts on that.

I will leave you with a scenario. Picture a profoundly deaf person who has Menieres Syndrome and Type 1 Diabetes. It doesn't bear thinking about.