Why Do Patients with Controlled Glaucoma Continue to Lose Their Vision?

[valfrance]

Hi this is an interesting read and easy to understand, you don't have to be a scientist like some articles I have read.

I know I sleep with my bed raised to try and help my pressure during sleep, I also wear light plastic builder's glasses, this stops me 'nuzzling' into the pillow. I miss doing this, however I can never do this again.

My sleeping life has changed since my diagnosis, I don't like it, however what can you do. I will try anything and this article confirms that raising your bed could help with not damaging your eyes whilst sleeping.

intechopen.com/chapters/63311

'Most ophthalmologists do not live with their glaucoma patients and have no idea about their behavior in daily life. The patients may sleep on their affected eye(s), and this causes further increase of the IOP in addition to the increase caused by supine position. When the eye leans against the bed or pillow or when the entire mass of the head is over all or part of the globe, IOP is increased by 33%. Thus, the physician should inquire about the sleeping habits of the glaucoma patients. Actually, increase in IOP measurement can be seen in patients who squeeze their eyes during evaluation with Goldmann tonometer, as well as with some other instruments. It can also be seen if the examiner presses the globe during IOP measurement'

[Petrolblue]

Wow, thank you for sharing this, valfrance. I was told once that there was nothing that I could do that would make a difference. I'll be adding an extra pillow tonight to get my head at a 30 degree angle. Do you tilt the angle of your he'd or just add pillows? X

[valfrance in reply to Petrolblue]

Hi I put a permanent wooden wedge under my bed and raise the 2 feet of the bed...by about 20%... When I get the money I plan on buying an electric bed as its quite unfriendly to be raised when your partner is right beside you. Our beds are singles pushed together...

I also use 2 pillows.. apparantly it is better if the bed is raised.. rather than when the pillow is just raised. The most important thing is not pushing your face into the pillow... this is nearby impossible when you have been sleeping like this all your life. its just the natural thing most of use side sleepers do.. hence the plastic builders glasses as they are light and padded around the ears and nose as it can get quite uncomfortable... i took out the glass for air. This stops your eye being pushed into the pillow..I must say I do look very romantic going to bed... however we have to protect our vision as much as we can, us poor unfortunates.... valfrance.

[Petrolblue in reply to valfrance]

That all sounds v sensible (if not very romantic 😊). Have been aware of keeping my eye out of the pillow since my trab so moving in the right direction xx

[Beecalmed]

Thank you valfrance! Confirms what I have read also. I have a foam wedge that goes under my mattress and raises the head by about 20-30 degrees plus I now sleep on my back. Sadly my glaucoma is still progressing regardless of my sleeping position. I do agree with the article on diurnal IOP fluctuations though and I suspect in my case that this is the issue. I’ve just had SLT and this can apparently level out diurnal fluctuations so I hope that this has occurred in my case. Sadly even if this is the case, it’s not a long term fix.

[valfrance in reply to Beecalmed]

hi Beecalmed thank you for replying... maybe try this also.... however you say you sleep on your back I just can't do that I am a side sleeper

The most important thing is not pushing your face into the pillow... this is nearby impossible when you have been sleeping like this all your life. its just the natural thing most of use side sleepers do.. hence the plastic builders glasses as they are light and padded around the ears and nose as it can get quite uncomfortable... i took out the glass for air. This stops your eye being pushed into the pillow..I must say I do look very romantic going to bed... however we have to protect our vision as much as we can, us poor unfortunates.... valfrance.

[Beecalmed in reply to valfrance]

I am naturally a side sleeper too. 😞 I just make myself sleep on my back. I shift in the night a little but don’t seem to wake to find my face pushed in the pillow, on the whole. I will google builders glasses though. I am wondering if elevating the bed end wound be superior to raising the mattress end though. Better for the back. I think so I may explore this. Do you know how many inches under the feet raises the bed by 20 - 30 degrees?

[valfrance in reply to Beecalmed]

i will measure my bed

[valfrance in reply to valfrance]

my pieces of wood under the bed are around 7 inches high i bought my glasses from a diy centre, just light plastic ones. thanks valfrance

[711debbie]

You can get a plastic eye shield (you have to tape around it) and a really big wedge pillow from Amazon.co.uk

[valfrance]

Hi debbie i have tried so many wedge pillows I know they work for some people... that is why i raised my bed and just use 2 ordinary pillows, my neck was so bad with a wedge pillow I had to go for massage treatments. what is a plastic eye shield.... is that the light builders glasses. kind regards valfrance

[muddledme]

Thank you, the article is very clear as you say. I have skimmed through it today but it will be a very useful reference and useful tool with which to aproach the medics with questions.

Sadly I do not think the NHS is going to be offering the recommended check ups at every 3-4 months following surgery and every 6 months for I.O.P and to observe the optic discs.

Interested in your adapted builders glasses. I have a raised bed head with stuff under the mattress and my pillow is a firm moulded one made from memory foam. It is difficult for my face to sink into it, yet it is comfortable.

The article mentioned the difficulty to detect field loss because of the overlapping effect with both eyes.

I am surprised that it does not mention regularly covering one eye at a time and testing vision in each eye independently. That was how I confirmed my own visual loss. Now I have made it a habit.

Best wishes

[valfrance in reply to muddledme]

Hi muddledme, yes I test my eyes frequently, i was recently prescribed reading glasses however I can read without them? have told the optician however she says that's my prescription. take care valfrance

[Kiara-52]

Thanks for sharing this article. My attitude is to try anything to help slow/stop the progression. I already have raised my mattress by putting big cushions under it. It's quite comfy and I use two pillows. I did try a wedge pillow on top of the mattress but that did not work for me. I am also a side sleeper as iv only got Glaucoma in one eye so far I try to sleep on the opposite side. I am also trying to sleep on my back but always wake up on my side!

[valfrance]

Hi Kiara, try the glasses, I hate wearing them.. sometimes i think I won't wear them tonight... then I start to panic as I know I will push my eyes into the pillow. take care valfrance

[Kiara-52 in reply to valfrance]

Thanks I will look online to see if I can get a pair! Good luck with your Glaucoma journey 🙂

[valfrance in reply to Kiara-52]

just go to a diy shop

[Beecalmed]

Hi Valfrance! Curious to know what you mean by builders glasses. Do you mean like ordinary glasses or fixed by elastic around the head? I’m just concerned anything like socket sized swimming goggles supposedly can put more pressure on the eye area. Half face diving goggles are recommended for swimming (without breath holding obviously) but they cover your nose often so that sounds uncomfortable for sleeping. Do you have a make I could google. I’d love to sleep on my side again.

[valfrance in reply to Beecalmed]

i just got mine from a diy store. light plastic glasses with arms not elastic. very light. they need not to press against your eyes. you can try them on in the shop

[rhys1234]

Have I understood correctly that the authors are recommending that the medications should be taken during the day and NOT last thing at night ?

That is the opposite to what I have always been told.

A bit confused.

[valfrance]

Hi Rhys, I take my medication at night monoprost.... when I was on a 2nd drug, that was last thing at night also and in the morning with 15 minutes between monoprost at night. The research article was interesting to me purely for the sleeping information. Do as your consultant advises that is the best thing. However no consultant has ever discussed raising your bed and not sleeping in the supine position, I don't know why they don't tell us this. take care valfrance