Noctura Sleep mask for diabetic retinopathy

[himtoo]

Hi
I am currently using this and finding I am getting good results after 6 months.
It is not yet funded by the NHS- it is in stage 3 trials for NICE approval.
I have put links to the company and links to other topics on the site where this is discussed.
and I do not work for them or have any association with them -- just a T1 for 42 years and extremely interested in keeping my eyesight

www.noctura.com

http://www.diabetes.co.uk/forum/threads/green-light-for-retinopathy-treatment.67768/

http://www.diabetes.co.uk/forum/threads/background-retinopathy.61270/#post-828705

http://www.diabetes.co.uk/forum/threads/retinopathy.64056/#post-817620

 

[iHs]

Hi.......good luck with this. Ive read yr posts on another forum and it looks very encouraging.

 

[Flowerpot]

Hi @himtoo , this sounds so encouraging for you and others with retinopathy and great to hear you are getting good results with it.

Do you know what stage of retinopathy it is designed to work most effectively with? I've had sight threatening proliferative retinopathy treated with maximum laser, vitrectomies and cataract removal that has left me partially sighted with just central vision in one eye but the bit of sight I have is the most precious thing and I would do anything within my means to protect it.

I go to a contact lens clinic as I need a lens to see and they always warn me about over wearing it and restricting the oxygen supply to my eye and the little bit of functioning retina I've got left.

I've often wondered if it might be possible or even safe to increase oxygen to my eye. Thanks for posting this information, I'll watch with interest.

 

[Robinredbreast]

Very interesting, I would love to try it. Pleased you are getting on with it and getting good results

RRB

 

[himtoo]

Hi @himtoo , this sounds so encouraging for you and others with retinopathy and great to hear you are getting good results with it.

Do you know what stage of retinopathy it is designed to work most effectively with? I've had sight threatening proliferative retinopathy treated with maximum laser, vitrectomies and cataract removal that has left me partially sighted with just central vision in one eye but the bit of sight I have is the most precious thing and I would do anything within my means to protect it.

I go to a contact lens clinic as I need a lens to see and they always warn me about over wearing it and restricting the oxygen supply to my eye and the little bit of functioning retina I've got left.

I've often wondered if it might be possible or even safe to increase oxygen to my eye. Thanks for posting this information, I'll watch with interest.

Hi @Flowerpot
my understanding is as follows ( based on the presentation of the mask I saw last october.

the mask is intended to fool the eye into thinking it is daylight.
apparently the eyes develop the retinopathy through a combination of higher pressure in the eye as well as being starved of oxygen at night.
the mask aims to replace the daylight at night while we sleep.
I am no expert on the mask by any means -- i will PM you contact details so you can speak to somebody I know

 

[himtoo]

My 5 minutes of fame have arrived
news article about me and the mask -- link here

http://www.leaderlive.co.uk/news/15...hopes-pioneering-mask-can-save-his-sight.aspx

 

[Robinredbreast]

My 5 minutes of fame have arrived
news article about me and the mask -- link here

http://www.leaderlive.co.uk/news/15...hopes-pioneering-mask-can-save-his-sight.aspx

Very interesting and a great positive article. I am so pleased for you, hopefully, many others will be able to use it too. I have had laser surgery on both eyes, mainly the right and an operation on the right one. as well.
A great thread himtoo

 

[noblehead]

My 5 minutes of fame have arrived

Long overdue Paul, a great article and well done for volunteering, hope it keeps bringing positive results

 

[Jaylee]

@himtoo . Your a trailblazer sir.!

The funny thing is years ago I read about a T1 pop singer in a tabloid paper. The headline read something like "Doctors say I will go blind if I continue to sing." (Something like that?) "Bullshine" thought I after reading the beatings of this "starlet" at the time.

But there is/can be a form of pressure on the eyes when "bawling" out rock & roll. Or singing as it's commonly known? lol (As you know I'm in a band.)
I apreciate the oxygen starvation is another factor with the "shut eye"? (Funny enough I don't get a lot of sleep.)
However, no tell tale signs with me yet. But still a worry (as with all of us) if/when....

Keep us posted on the developments.

 

[himtoo]

mask changeover day yesterday -- optometrist was pleased with yet further small improvements in the thickness of the macular layer and healing of a few small bleeds at the edge of my vision as well as the size of the odema reducing and flattening out slightly ( all observed on the OCT scan of my eyes he does every 3 months ) -- which is great back up !!

 

[NinaB73]

I read your post with great interest! I have read about these masks a while ago and it all seems positive. I would have jumped at the chance to trial also but they were not trialled anywhere near me. Do you know how others have responded? It is refreshing to hear of a non invasive treatment for a change, diabetes management always seems to involve a level of discomfort to some degree, eyes not the exception!!
Like you I have had a load of lasering and now injections, if I could holt what was happening I would!
Can I ask? It's it difficult to sleep with the light coming through? I am not a good sleeper and like my bedroom really dark to get to sleep, do you find the light from the mask difficult? I am intrigued about the whole experience and would love to hear How you continue to get on.

 

[himtoo]

Hi NinaB73
it is pretty easy to wear and the light from the mask does not interfere with sleep.
have messaged you with further detail

 

[titchvic]

It's really encouraging reading this thread! Thank you.
My husband has been type 1 for 40 years and has had several bouts of laser. One of our biggest fears is that one day he may lose his sight (i imagine this is a common feeling!) I'll be looking into this to see if it can help us.
Does the mask emit any light outwards? So, will I be able to sleep if he is wearing it!

 

[himtoo]

hi titchvic
have messaged you with further info - the light emitted is not too much --

 

[BeccyB]

I've just found this thread through the 'recent posts' bit - I had no idea about any of this!

I have 2 appointments for laser treatment next month and am really not looking forward to it again - this sounds fantastic in comparison!!

Only question is whether I can afford to self-fund this as well as my Freestyle Libre?!?! Come on NICE!

 

[himtoo]

Hi @BeccyB
glad you found it !!

i have messaged you with further information.

 

[himtoo]

well yesterday was mask change day and appointment went really well -- except for those **** stinging drops ( OK i am a big baby )

optometrist spends a good deal of time with me ( about 90 minutes)

he had all of my retinal photos up together side by side( over the past year) on his computer screen and it is clear that there is progress in clearing up small periphery bleeds , along with the telltale white protein spots clearing up from old former bleeds.
he definitely says my eyes have improved with the mask.

On my OCT scan there is a further -16 thousands of a micron reduction in the edema ( central vision left eye ) which is pleasing and a -12 thou generally in the macular layer of the right eye

so a great appointment -- all except at the very end when I had to fork out the £250 for the new mask - LOL

 

[Dillinger]

@himtoo - so does this cost £250 every 12 weeks?

 

[himtoo]

@himtoo - so does this cost £250 every 12 weeks?

Hi @Dillinger
yes afraid so -- tis £250 every 12 weeks

it is really weird having had D for so long now and in the first 10-15 years nothing much changed treatment wise = but in the last 25 years it seems to have exploded with BP lowering meds, statins , blood testing , BG monitoring , the masks , eye injections , and overall the the picture is a lot brighter than when I was diagnosed.

all the best !!

 

[letsy]

This looks very positive. Does the light affect circadian rhythm at all? I have a genetic eye condition that will make it hard to monitor for retinopathy and means laser treatment is contraindicated so I'm very keen to hear about prevention and alternative treatments for retinopathy. (I've just been dx at 34)