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The HORROR of lewy Bodys Night terrors

Norrms

Registered User
Feb 19, 2009
5,375
Torquay Devon
The Horrors of Night terrors and lewy Body`s


As i walked into the front room, i glanced at the clock on the wall, it was 5.15 am and it felt cold. Its usually always warm where we live because of the underfloor heating, but today it was so cold, or at least i thought it was, because i had just had one of the worst night terrors i have had for years. these are not hallucinations, but very real Night terrors. The word nightmare doesn't do it justice because these are so disturbing, they are what every horror you can imagine rolled into one, your very worst fears, and more, coming to life, playing out, in front of your very eyes. I will not, and would not describe what i saw, not even to my very own "Angel" Elaine, Night terrors like this need to be suppressed and forgotten about , if at all possible, and not something to burden loved ones with, this is the cruelest disease.


I sat there, head in hands, shaking and sweating as flashback after flashback came rushing through my mins like a torrent of water, breaking riverbanks, or pieces of my very own sanity as they flashed past. I looked around the room for comfort, for things i see everyday, i love our little flat and i love where i live. I concentrated on pictures of my grandchildren and the feeling of love for them rushed through my body, making me feel so much better for a little while. As i sat and looked around me my mind wandered and i thought of all the others with Lewy Body`s dementia and other types of dementia who go through the same thing, then, and awful thought filled my head which hit me like a thunderbolt!!

What happens when i go into late stages ???

The thought of having these kind of horrific terrors in late stage dementia and having lost the power of speech and actions, how will i ever survive whilst trapped in a body that cannot function as it used to but still having these night terrors and flashbacks ?This must be what they mean when they say HELL ON EARTH !!. And what of all the guys who are already in this position ?? What horrid awful times they must be going through and being unable to express whats happening to them can only be imagined as the worst living terror there is, no wonder so many with this awful disease look frightened and scared. Some times Elaine tells me she can see the fear in my eyes and feels helpless at times as what to do, my goodness, how many more carers and people living with dementia go though the same thing?

I have to live with this disease, i have to fight these feelings every day and somehow get on with my life as normal as possible (As far as others are concerned) but deep within, is always that fear of what the next night will bring, the horrors i may see, and the upset it causes my family as they see me disheveled and confused as the flashbacks come thick and fast. I am the only one that can see these repeated horrors, as i walk down the road, sit in a cafe, or try to get through each day. I dont write this to upset anybody, or to frighten people, but i write these blogs to share with all, so all will understand the horrors that befalls us sometimes. It sounds really strange to say "i hope this helps" but i do

Norrms, Diagnosed with dementia 7 years ago and still fighting it., Just seem to be fighting a little harder these days, Please share, but only iof you want too. xxxxxxxxxxxxxxxxxxxxxxxxx
 

Dill

Registered User
Feb 26, 2011
355
England
Hi Norrms
How awful for you. I know how a bad dream can upset me for the rest of the day but what you describe is frightening beyond belief. I so wish there was something that would take away the terrors, hopefully there will be soon.
Wishing you and Elaine a peaceful day.
Dill x
 

Aitchbee

Registered User
Nov 3, 2013
87
Hi Norms. My Mum is in the advanced stages of Lewy Body. I know every person is different in the way they experience this disease, but if it is any comfort to you, I don't believe my Mum is unduly distressed now. She still hallucinates (she is virtually blind so her mind probably invents images for her). She doesn't seem to have the distressing dreams anymore. She sleeps a lot but is generally content and peaceful.
 

sinkhole

Registered User
Jan 28, 2015
273
Hi Norrms, I wish I could say something to you which would help you cope, but I doubt I can.

What I will say is what a great job you are doing by writing down your experiences and sharing it with others. Please carry on doing this as I have no doubt it will be helping others and you may not realise it, but it probably is helping you to some extent too.

Keep fighting!
 

Tin

Registered User
May 18, 2014
4,824
UK
Horrific read. Can I ask a question, while you were experiencing all that was Elaine there with you and were you aware of her being there? I ask because I don't know if my mum is aware I am with her when she has nightmares.
 

trigger

Account on hold
Aug 25, 2009
138
Plymstock Devon
Nearly 70 percent of adults have nightmares—with an amazing 30 percent of us reporting that these terrifying dreams jerk us out of sleep as often as once a month.
Nightmare triggers
Nightmares can be caused by medications, oddball genes, degenerative neurological diseases like Alzheimer's, last night's tamales, traumatic events in the present, never-healed wounds from the past that a recent event has unmasked, and gut-level threats to health, safety, and the very sense of who you are.
Those who put a lid on expressing how they feel in response to stressful events during the day are likely to be taken for a ride by those emotions in the form of nightmares at night. And some, particularly people who are open and sensitive, may have a "thin" boundary between what's real and what's a dream—which means that their waking life is more than likely to stir up their night life and cause some pretty hairy dreams.
"A nightmare is a dysfunctional dream," explains Rosalind Cartwright, director of the sleep disorder service at Rush-Presbyterian-St. Luke's Medical Center in Chicago. Instead of integrating the day's events and feelings with older, stored memories and defusing negative emotions — which is what some researchers feel a dream is supposed to do — the emotions your brain is processing overload your circuits, prevent their integration into older memories, and jerk you from sleep.
If you're in a bad car accident, for example, you may not be able to process all the negative emotions the accident generates right away, says Cartwright. The fear and your sense of vulnerability and mortality are overwhelming. So you may have nightmares for a while as your mind keeps working away at integrating your feelings. Once it does, however, the nightmares go away.
 

Norrms

Registered User
Feb 19, 2009
5,375
Torquay Devon
Hiya Tin, Elaine was in bed with me at the time but i was alone by choice in the front room my friend.

trigger These are night Terrors, not Nightmares, a HUGE£ difference
 

Robertruth

Registered User
Feb 10, 2015
3
You've mixed the 2 up.
Sleep terrors are usually in the first half of a sleeping unit, and nightmares come in the second half.
One does not wake from a sleep terror.
Sleep terrors are not remembered, perhaps a fragment, whereas nightmares can be recalled with vivid clarity.
What you have described is a nightmare.
You are having nightmares.
 

PhoebeM

Registered User
Jun 18, 2013
3
Northeast - USA
It doesn't matter what they are called, it matters that norm is experiencing them. Norms thank you for all that you have shared, it has helped me be a more kind and compassionate care giver for my husband. I wish you peace.


Sent from my iPhone using Talking Point
 

LYN T

Registered User
Aug 30, 2012
6,959
Brixham Devon
I too wish you peace Norrms and hope that you do not experience such terror tonight. As PhoebeM writes, whatever the label (nightmare or terror) it must have scared you so much-for that I'm sorry.

Love to both you and Elaine

Lyn T XX
 

jenniferpa

Registered User
Jun 27, 2006
39,448
I agree - I don't think it matters a toss about the label, just that you are experiencing something at night and they are distressing.
 

Robertruth

Registered User
Feb 10, 2015
3
I recently joined talking point as I believe this is a discussion and learning forum.
If anyone is to learn, then facts are necessary.
For the person experiencing the parasomnias, then the names matter not.
For the physician diagnosing and treating them, it is a different matter.
The original poster has painted a very bleak picture.
If he is to receive the help needed, it is vital to have a correct diagnosis.

What help has been offered to you?
Has your physician stated what you are suffering from?
 

LYN T

Registered User
Aug 30, 2012
6,959
Brixham Devon
I recently joined talking point as I believe this is a discussion and learning forum.
If anyone is to learn, then facts are necessary.
For the person experiencing the parasomnias, then the names matter not.
For the physician diagnosing and treating them, it is a different matter.
The original poster has painted a very bleak picture.
If he is to receive the help needed, it is vital to have a correct diagnosis.

What help has been offered to you?
Has your physician stated what you are suffering from?
Welcome to TP

Our very welcome members on this Forum, who are suffering from Dementia, usually give an indication to their diagnosis which you can find by clicking on their name, then clicking on their profile. Norrms has been diagnosed with AD-at a very early age. Although not on Norrms profile the title on this thread also indicates that he also is suffering from LBD. A double whammy for anyone to deal with.

You are correct in saying that TP is a discussion and learning Forum; but due to the emotions that sometimes can arise on people's post, especially people who are in distress, facts are secondary to sympathy and empathy.

Sometimes simply unloading feelings on here can do sufferers and carers the world of good.By reading about how people feel when suffering from any kind of Dementia Carers learn more than looking at facts. Some of the sufferers on the Forum have taught me so much; unfortunately, my Husband could not articulate how he felt and it was difficult to know what to do at times to help him. My Husband had terrors in the day as well as at night. Pete is no longer with me but I still am keen to learn and understand.

Lyn T
 

Norrms

Registered User
Feb 19, 2009
5,375
Torquay Devon
Thank you Lyn |T asnd yes, my Consultant has told me i do suffer from Night terrors and not nightmares. The facts are my friend, one you have met one person with dementia , you have met one person with dementia, books and facts do not tell the true story of someone who is living with this awful disease, but thank you for your concern, very best wishes, Norrms and family xxxxxxx