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Noctura 400

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wispadreams

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Newbie here with a brand new diagnosis of proliferative retinopathy :(

Been researching everything and anything to see what I might be able to do to prevent my sight deteriorating and came across noctura 400. Reviews seem really positive with some saying they've seen improvements. Its not cheap at £80 month but if it were to potentially save my sight I'd find the money.

Any personal experiences with it? Is it worth it? Is it all a scam?
 
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wispadreams said:
Newbie here with a brand new diagnosis of proliferative retinopathy :(

Been researching everything and anything to see what I might be able to do to prevent my sight deteriorating and came across noctura 400. Reviews seem really positive with some saying they've seen improvements. Its not cheap at £80 month but if it were to potentially save my sight I'd find the money.

Any personal experiences with it? Is it worth it? Is it all a scam?
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Welcome to the forum.
One thing which can help is good diabetes management as high blood glucose will not be helping.
Many have found that they can get that diagnosis but by next check it is not found but that may depend on how advanced it is.
Spending the money on better quality food may be better than some unproven medication.

How do you manage your condition and how long have you been diagnosed.
 
@Leadinglights I think proliferative retinopathy is much more serious that stage 1 retinopathy (ie background retinopathy) and I am not sure it is reversible but you are correct in that good diabetes management will be key to reducing the risk of progression.

@wispadreams Welcome to the forum. How long have you been diagnosed with diabetes and how do you manage it? Do you know what your most recent HbA1c result is? Do you think you had gone a long time undiagnosed and uncontrolled before your diabetes was discovered? ie had you had symptoms for a year or more before you got your diagnosis?

I am not sure if @Pam123 is/was using this or something similar but hopefully she will be along to comment or correct me if I am wrong, now that I have tagged her.

I am personally rather sceptical of such "treatments" and especially expensive ones like this. Have you been referred to a hospital consultant and is there any treatment planned?
 
Leadinglights said:
Many have found that they can get that diagnosis but by next check it is not found but that may depend on how advanced it is.
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I would have to kindly disagree, I’d suggest this is only true for background retinopathy. If someone says they have proliferative retinopathy it isn’t good to give the false hope that it will just disappear as it doesn’t work like that. Also important to note that fast improvements in blood sugar can make retinopathy worse so extra important for this person to make any changes gradually.

I have heard of someone using this but I can’t remember that it made much difference. Have you been offered any treatment by the eye hospital @wispadreams
 
Thank you everyone.

My diabetes was at pre diabetes/ borderline for over 20yrs, totally diet controlled. Meds only required last few years, they haven't helped at all until recently really despite good diet but I also had a serious accident which hindered pretty much all movement other than around house and to/ from car. That won't have helped.

I have hospital in a couple of weeks to see what they say next steps are.

I have read up quite a bit about this stage 3 proliferative retinopathy and aware existing damage is unable to be reversed. For me, as yet I haven't noticed a deterioration in my vision other than if I am looking at a screen, I also need the light on or my eyes tire easily. Related or not, no idea but id assume so as its fairly recent.

As there seems to have been no major change to vision, I am very keen to try and maintain/ better current finger prick levels (between 4.3 and 7 usually). It is just a shame its taken this long to get the medication right to get these levels under control. Even with my GP doing it slowly, appears to have been too fast. I note a few comments about diet, my diet is actually very good but I have other issues too which make losing weight much harder, I diet controlled much longer than most usually do apparently.

I am aware the jury is out on noctura, I have however just ordered and will see how it goes. There seems to be no negative impact so at worst, I lose £200. At best, I may be able to keep my sight longer term. My optician has just done a sight test so I'll have a comparable. He had heard good things about it and has a couple customers using it where their stage 3 has improved considerably. That swayed me somewhat. Losing my sight terrifies me, I dont want to have the "what if I'd tried..." question over me re. noctura. Yes, its possibly what they bank on as part of their sales... but eyes are too precious to not try this when you're in a lucky position of being able to. I have cancelled my netflix and a couple other things to afford it. Health first, always.

Will keep yous updated. Really do appreciate every comment, nice to know im not alone. Thank you again!
 
Will be interested to hear how you get on with it. Good luck!
 
A healthy dose of scepticism can at least prevent you throwing good money after (possibly) bad, but can totally understand your situation and wanting to at least try it and I do really hope you see some benefit..

Just as an aside, I find I need good light to read anything now and I don't have retinopathy. I assumed it was just an age thing. My eyesight has deteriorated noticeably since diagnosis 6.5 years ago though. I now need glasses for reading and distance when I never needed them at all before. The most difficult thing for me is that they change slightly from one day to the next, so I have ready readers of different strengths to accommodate this. Just really wanting to offer you some reassurance that what you are experiencing may not be related to your retinopathy.

Do let us know what if any treatment you are offered on the
 
rebrascora said:
A healthy dose of scepticism can at least prevent you throwing good money after (possibly) bad, but can totally understand your situation and wanting to at least try it and I do really hope you see some benefit..

Just as an aside, I find I need good light

A healthy dose of scepticism can at least prevent you throwing good money after (possibly) bad, but can totally understand your situation and wanting to at least try it and I do really hope you see some benefit..

Just as an aside, I find I need good light to read anything now and I don't have retinopathy. I assumed it was just an age thing. My eyesight has deteriorated noticeably since diagnosis 6.5 years ago though. I now need glasses for reading and distance when I never needed them at all before. The most difficult thing for me is that they change slightly from one day to the next, so I have ready readers of different strengths to accommodate this. Just really wanting to offer you some reassurance that what you are experiencing may not be related to your retinopathy.

Do let us know what if any treatment you are offered on the
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Thanks, I will. That sounds tough, I am older so did wonder if the light thing may be age related but may possibly never know!
 
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Seems to me you are going for it with the right frame of mind. Nothing to loose other than some money and it will be a bonus if it helps, and not a mind crushing disappointment if, as is likely, it makes no difference.

Let us know how you get on with your hospital appointment and the device.
 
rebrascora said:
@Leadinglights I think proliferative retinopathy is much more serious that stage 1 retinopathy (ie background retinopathy) and I am not sure it is reversible but you are correct in that good diabetes management will be key to reducing the risk of progression.

@wispadreams Welcome to the forum. How long have you been diagnosed with diabetes and how do you manage it? Do you know what your most recent HbA1c result is? Do you think you had gone a long time undiagnosed and uncontrolled before your diabetes was discovered? ie had you had symptoms for a year or more before you got your diagnosis?

I am not sure if @Pam123 is/was using this or something similar but hopefully she will be along to comment or correct me if I am wrong, now that I have tagged her.

I am personally rather sceptical of such "treatments" and especially expensive ones like this. Have you been referred to a hospital consultant and is there any treatment planned?
Click to expand...
yes I have been using the Mask for coming up to 6 months now, and I can say without a doubt it has saved my sight. its a long story but I was diagnosed with DMO in January this year and my right eye was so bad I had black cloud which obscured my vision, both eyes were effected but the right was far worse, I was referred to hospital for urgent treatment but due to my severe phobia was unable to attend and the NHS refused to fund private treatment (long story) anyway I decided to try the mask and within 3 months my eyes improved so fast and I can see clearly again, my optician who took OTC scans before the mask and again in April was amazed, I shall continue to you the Mask as it has saved my sight.
 
Good luck! I would just update this thread and then all the comment about this product is together in the one place for others to find easily.
 
Hi @wispadreams I’m a Noctura 400 mask user, briefly I ordered one on a trial offer (slightly reduced price as a first time user) around the time @Pam123 started her first mask

i must admit a first I didn’t find it the easiest thing to wear at night as I am sometimes a poor sleeper, plus at that time was also suffering a lot of anxiety (nothing to do with the mask) so probably why at first. I couldn’t /didn’t wear it for it’s full 90 days

currently (like Pam) I’m wearing my second, I’m still unsure if it’s 100% helping
but if I get a good nights sleep and wear the mask all night I certainly notice when I wake up my vision is much clearer

I have been undergoing treatment for Diabetic Retinopathy for about the last 11 years under the NHS

like many others previously I hadn’t had a good control of my sugars, but more recently my levels are pretty stable, yes the mask is an expense (although is it really) as it’s a similar cost to self funding a CGM as many Diabetics do

I’ve tried several times to raise the mask with the ophthalmologists & consultants I see at the DMO but TBH mostly as they are busy the subject has been swiftly changed

however on my last consultation when the retinal scans showed a suprising reduction in the size of the swelling in my right eye that on that day didn’t require the expected steroid injection (whereas 6 weeks prior both eyes needed steroid injections) and when I reminded the ophthalmologist I’m wearing the mask, she admitted she heard it had helped some people and confirmed it certainly wouldn’t do any damage

Hope you get on well with it, im myself suprised more people don’t know about, post about it / understand or use it 🙄
 
Noctura Experience - Night 1
I was very tired when I went to bed and slept soundly for the most part even with the mask on. Woke a couple of times through the night (not unusual) but went back to sleep quite quickly. I am glad an alexa wasn't too far away though as when I rolled over, it "felt" light, although the lights didnt disturb my sleep anymore than without wearing the Noctura. I think it just confused me a little as I had no idea what time it was. To save taking it off to check, I just asked alexa the time. The first time was 00:05 so very early! I think had I had to keep taking it off to check, my sleep would have been pretty rubbish. If I didnt need to be up for work early, the time wouldn't really have mattered I guess so I may not have been so aware.

Operation
The unit itself was very easy to operate and instructions that came with it were short and very clear with both text and pictures. Interesting to note that the day before delivery I received a call from Noctura to talk me though it all and answer any questions I had. When I emailed with a query, I had a response within a few hours.

Physical Experience
Putting the Noctura together was easy. A band to go round my head and the unit itself that slips inside it. The lights on Noctura didnt bother me at all. The band stayed put all night too which was a pleasant surprise. I had a scrunchie (soft hair tie) close by incase I needed to put a ponytail in and put band under it (I have long hair) as I had read from a number of people it slipping off their head could be an issue but it wasn't required this time. I am a side sleeper so I had to adjust my sleeping position a little bit so slept on the edge of my pillow so the unit wasn't touching it. That definitely was more comfortable as i felt it might have dug into my nose otherwise and Im not someone thats able to sleep on their back easily. When I woke, the lights were off. This happens automatically 8 hours after you activate it so clearly I got a decent length of sleep. If they had still been on, you're told to just leave them and they will turn off automatically after the 8 hours. When not in use, the "insert" is removed from the band to allow the unit to air. This is very easy to do.

Waking Up and Unexpected Side Effect
On waking and removing the mask, as with most mornings it took my eyes a couple minutes to "wake up". I dont think they feel any different to usual this morning but I am a bit more rested as a whole. But... thats because when I woke in the night I didn’t pick up my phone and check the time/ aimlessly scroll for a bit as I had the mask on and that was too much hassle so it will probably reduce my overnight phone use too and increase my sleep time. Not the purpose of Noctura but a helpful "side effect" perhaps!

All in all, it wasn't a bad experience for night 1. I won't post every day and bore the pants of you all (plus I've not time to do that!) but I will try to post fairly regularly or with information I'd want to know if I was reading this and trying to decide whether to try it or not. I do also promise to be honest, good or bad. Also happy to answer any questions from my experience if it will help.
 
Thanks for the update @wispadreams 🙂

Look forward to hearing more from your experiments, and any follow-up checks at the opticians.
 
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