No cognition

[Chuggalug]

I have a friend who now has hearing aids and they do take some adapting to as the brain has to adjust. I think if I wore an aid in my bad phase it would magnify the sounds which I was already hypersensitive to and would be unbearable. So I can understand when you say it was an 'agonising time'.

A few days ago I noticed I kept putting the sound of my TV up more than usual and have considered getting a TV aid to help when I am like that so that it only picks up the TV and hopefully not magnify other sounds as well. I don't wish to disturb my neighbours but also feel I need some aid sometimes but not always.

My agony, Sue, was when he kept on and on, and on flicking the light switches. Then he'd have a go at the settings for the gas supply in the airing cupboard. And he'd faff about with the mains box. It was so frightening because I couldn't stop him

I wish you success in getting everything you need to be comfy, Sue, xx

 

[Chuggalug]

Thank you for that news, Kijo.

 

[bemused1]

This is a really interesting thread, thank you sue. For your input. Given me some insight into the sometimes blaring TV and other times disturbance by a fan running. Also the glasses for TV sometimes and not others. Of the inability to distinguished between reading glasses or distance glasses for TV.
Interesting, thank you all

 

[LadyA]

It is a fascinating thread! I can quite understand how some noises are disturbing during "bad" phases Sue, and not other times, especially as you say, if there are vascular incidents involved. I suffer from migraines regularly, and at "migrainy " times, even if there is no headache present, certain sounds will drive me completely bananas! Doesn't have to be loud, just particular tones I can't tolerate.

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[Sue J]

My agony, Sue, was when he kept on and on, and on flicking the light switches. Then he'd have a go at the settings for the gas supply in the airing cupboard. And he'd faff about with the mains box. It was so frightening because I couldn't stop him

I wish you success in getting everything you need to be comfy, Sue, xx

It must have been frightening. I presume this no longer happens?

I think my brain is in a very sensitive state when I 'fit' shall we say and to be able to tolerate anything is so difficult so I can understand your husband wanting to get rid of the noise. Of course often those in ignorance think that you must be 'mad' because noone else can hear it and put it all down to the mind which it's not at all but it makes one indignant when medics dismiss such things which are very real even though they can't perceive them.

 

[Sue J]

Thank you, Sue. When OH is like this it's difficult to understand but I think I get what you mean. It's not that the noise seems louder so much as that the brain can't deal with it as well as it would normally do. Have I got it? One other thing you said about possibly the brain is 'fitting'. I know that in some cases, immediately prior to a seizure, senses can seem heightened eg you can feel much more sensitive to light or other external stimuli - so that would fit in with what you say. Bless you for your help!

It is hard to explain really, 'I'm' not really 'present' during these times so it's like my brain is just picking up on these noises which are either undetectable to others or not irritating to them. Because I am on my own I 'fight' to stay conscious when I am like this as I get frightened about what might happen.

I think it is why the scans don't necessarily show anything and why I think continuous EEG monitoring for a period of time would be beneficial to identify patterns and diagnosis, but also why MRI scans are a nightmarebecause of the noises they make.

 

[Jinx]

This thread has helped me too. OH sometimes just blanks when I ask him something or reply to something he has asked me. I thought it was because he hadn't heard, he is a bit deaf, does have a hearing aid but won't wear it but I suspect now that he is struggling to make any sense of what I've said. Later in the day sentences he says are more muddled and if he can't find the word he wants will just say what he sees e.g "shall we go for a walk round the....newspaper" as that is what he's looking at at that moment.


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[LadyA]

It is hard to explain really, 'I'm' not really 'present' during these times so it's like my brain is just picking up on these noises which are either undetectable to others or not irritating to them. Because I am on my own I 'fight' to stay conscious when I am like this as I get frightened about what might happen.

I think it is why the scans don't necessarily show anything and why I think continuous EEG monitoring for a period of time would be beneficial to identify patterns and diagnosis, but also why MRI scans are a nightmarebecause of the noises they make.

Sue, do you get sensitive to things other than noises? Like movement around you (other people moving about, traffic moving etc.), light, smell, etc.? A migraine specialist I used to attend explained to me one time that the type of migraines I get start off the same way as an epileptic seizure, with a sort of (can't remember how he phrased it) electrical circuit in the brain. He said that basically if it went one way, I'd have epilepsy, but it veers off and goes another way, so I have migraine.

Watching my husband as he has deteriorated I have seen the same sensitivity to stimulii in him at times. He is extremely deaf - but at times he has gotten really sensitive to a particular tone of sound - not the volume, just a particular pitch. It will literally drive him to tears. But other times, he won't seem to hear the same sound at all.

 

[SoyHJ]

Sue, do you get sensitive to things other than noises? Like movement around you (other people moving about, traffic moving etc.), light, smell, etc.? A migraine specialist I used to attend explained to me one time that the type of migraines I get start off the same way as an epileptic seizure, with a sort of (can't remember how he phrased it) electrical circuit in the brain. He said that basically if it went one way, I'd have epilepsy, but it veers off and goes another way, so I have migraine.

Watching my husband as he has deteriorated I have seen the same sensitivity to stimulii in him at times. He is extremely deaf - but at times he has gotten really sensitive to a particular tone of sound - not the volume, just a particular pitch. It will literally drive him to tears. But other times, he won't seem to hear the same sound at all.

They were explained to me as a kind of 'short circuit' in the brain!

Sue, with epilepsy, which varies in form from person to person, there is often that sense of being present but not present along with being unable to really focus or concentrate on anything. I think you've raised a really interesting point.

 

[velo70]

Hi Sue J. I haven't been on for some time, but today, after a slow start, I read your 'insights'. Thank you, I found these really helpful. My wife suffers, having good days and bad, like many. We have gotten ourselves a sort of loose programme to get up, wash dress have breakfast, and generally prepare for as normal a day as possible. I am probably in denial, trying to progress each day with all the positives. Your description helps me understand more, and hopefully have the patience to persevere. Our day today, began with the search for door keys, which were put away for 'safety', by my wife, whilst I was watching the news on TV. We are going to lunch toady with daughter, and now trying to make up the couple of hours lost in searching for keys and getting a weekly! shower. We'll get there but trying to see the difficulties from my wife's eyes, helps no end. Thanks so much. Regards

 

[Illy]

I would also like to add my thanks to Sue and all the others, who by unselfishly sharing their difficult times, give me a little understanding of what I am trying to deal with.

 

[Chuggalug]

It must have been frightening. I presume this no longer happens?

I think my brain is in a very sensitive state when I 'fit' shall we say and to be able to tolerate anything is so difficult so I can understand your husband wanting to get rid of the noise. Of course often those in ignorance think that you must be 'mad' because noone else can hear it and put it all down to the mind which it's not at all but it makes one indignant when medics dismiss such things which are very real even though they can't perceive them.

You know what, Sue? The fact that you've kindly come on here to explain these things to us helps us to be a bit more compassionate with what we're dealing with. To have people dismiss such a thing is cruel, yet, because I'm not a medic myself, just caring for someone with this condition as a 'rookie', I can't be expected to know the in's and out's of this distressing condition. So your input is more valuable to us all than you'll ever realise. Thank you so much, and I wish you a quiet, pleasant Sunday.

 

[Sue J]

Sue, do you get sensitive to things other than noises? Like movement around you (other people moving about, traffic moving etc.), light, smell, etc.? A migraine specialist I used to attend explained to me one time that the type of migraines I get start off the same way as an epileptic seizure, with a sort of (can't remember how he phrased it) electrical circuit in the brain. He said that basically if it went one way, I'd have epilepsy, but it veers off and goes another way, so I have migraine.

Watching my husband as he has deteriorated I have seen the same sensitivity to stimulii in him at times. He is extremely deaf - but at times he has gotten really sensitive to a particular tone of sound - not the volume, just a particular pitch. It will literally drive him to tears. But other times, he won't seem to hear the same sound at all.

Hi Lady A, yes I am very sensitive to sounds, smells and movement. I have read you have migraine too I have had it for years but only when I brokedown and I believe also had a brain infection at the time did I experience auditory, olfactory and visual hallucinations. I do think it is a mix of epilepsy and migraine with resultant 'dementia symptoms' if they can treat the former then the latter may resolve. I have always felt from the beginning of this it is something that can be reversed.

I have no sense of pitch at all yet have heard, seen and identified a birdsong of a rare bird, can't remember the name now, an incredulous friend didn't believe me but knowing I can't identify sounds played me a selection of bird sounds and I identified the one I said I had seen - probably couldn't do it now though. It was a lovely experience

Hope your migraines are in abeyance

 

[Sue J]

You know what, Sue? The fact that you've kindly come on here to explain these things to us helps us to be a bit more compassionate with what we're dealing with. To have people dismiss such a thing is cruel, yet, because I'm not a medic myself, just caring for someone with this condition as a 'rookie', I can't be expected to know the in's and out's of this distressing condition. So your input is more valuable to us all than you'll ever realise. Thank you so much, and I wish you a quiet, pleasant Sunday.

Thanks Chuggalug, I wish you the same too.

I was a nurse and I can't bear it when people or their suffering is misunderstood through ignorance but we are all ignorant of things until we are enlightened otherwise. My getting cross with medics is my loss of 'grip on reality', at that moment in time, as they just don't understand so getting cross with them doesn't help, but I always learnt to listen to the patient and if the patient says e.g. 'they can't hear', they can't.

No, as a 'rookie' you can't be expected to know the ins and outs, noone can. And I don't think any of us will ever stop learning.

Peaceful Sunday to allxxx

 

[velo70]

No cognition.

This thread has been of tremendous help to me. Just now, I was making sandwiches. and asked my wife to put the kettle on for a cuppa. She was temporarily unable to grasp what I had asked her to do. I began to get mad, but then thought of the expressive way Sue J had explained some of the problems. I didn't get mad, bit my tongue and explained what I had asked to be done, and showed her, so it ended in a nicer outcome. So Thanks.

 

[Lindy50]

I have found this thread very useful too

For some time, I have suspected that mum's 'hearing' difficulties are in fact more down to concentration and cognition. She turns the TV up loud but still can't 'hear' it. Fairly recently, we were watching the Trooping the Colour ceremony, with Sophie Rayworth as BBC presenter, when mum said to me, 'she's talking gobbledygook, isn't she? I mean, can you understand a word she says?' That was when my suspicions were confirmed...

I've found that we are best off watching very visual things like athletics, horse racing or cycling, where the commentary seems less vital. Fortunately we both enjoy these, so we still have good times xx

 

[Sue J]

This thread has been of tremendous help to me. Just now, I was making sandwiches. and asked my wife to put the kettle on for a cuppa. She was temporarily unable to grasp what I had asked her to do. I began to get mad, but then thought of the expressive way Sue J had explained some of the problems. I didn't get mad, bit my tongue and explained what I had asked to be done, and showed her, so it ended in a nicer outcome. So Thanks.

Velo70, that's really good to read

When I am like that I can't say, 'hang on a minute til the blood flow to my brain wakes up' but if I were able that's what I would say. But it's the invisible nature of this disease that makes it so challenging.

It helps me to be patient with myself, because I do understand, but I still get very frustrated

Our day today, began with the search for door keys, which were put away for 'safety', by my wife, whilst I was watching the news on TV. We are going to lunch toady with daughter, and now trying to make up the couple of hours lost in searching for keys and getting a weekly! shower.

From your earlier post Velo because we lose things, or can't find them when symptoms are bad, we make special effort to find 'safe' places for things that are important. When symptoms are bad we feel very vulnerable so put things in 'odd' places but may have no sense of perspective so when we are 'better' then can't remember where we left something and often when we find it can't believe we put it there because it was done without proper consciousness, so hence it must be someone else that has done it. Because I live alone, I know it is just me and what distresses me is wanting to blame someone else for something - I'm not normally like that - so have learnt not to try not to stress over lost things but amaze myself when I find something and really there is no logical reason why it is there - I lost a tomato (the only one I knew I had left) the other day which I still feel certain I never ate but do you think I can find it?! It's in a safe place somewhere I am really pleased the thread has helped you Thanks Chuggalug for starting it, I am telling myself the same things I write.

 

[velo70]

Cognition.

Nice to chat with others who understand. Thanks, Gordon.

 

[SoyHJ]

Velo70, that's really good to read

When I am like that I can't say, 'hang on a minute til the blood flow to my brain wakes up' but if I were able that's what I would say. But it's the invisible nature of this disease that makes it so challenging.

It helps me to be patient with myself, because I do understand, but I still get very frustrated



From your earlier post Velo because we lose things, or can't find them when symptoms are bad, we make special effort to find 'safe' places for things that are important. When symptoms are bad we feel very vulnerable so put things in 'odd' places but may have no sense of perspective so when we are 'better' then can't remember where we left something and often when we find it can't believe we put it there because it was done without proper consciousness, so hence it must be someone else that has done it. Because I live alone, I know it is just me and what distresses me is wanting to blame someone else for something - I'm not normally like that - so have learnt not to try not to stress over lost things but amaze myself when I find something and really there is no logical reason why it is there - I lost a tomato (the only one I knew I had left) the other day which I still feel certain I never ate but do you think I can find it?! It's in a safe place somewhere I am really pleased the thread has helped you Thanks Chuggalug for starting it, I am telling myself the same things I write.

Once again, thank you so much Sue for this explanation. Hope you don't find it upsetting to try and analyse your feelings and post them.

I really do hope that you did eat that tomato, if not.....maybe you'll have to wait for a bad smell to materialise

 

[Chuggalug]

I am really pleased the thread has helped you Thanks Chuggalug for starting it, I am telling myself the same things I write.

You and everyone else are welcome, Sue. Please keep it going for as long as you like And I really do hope you find that tomato!