Inflammatory Open Angle Glaucoma

[Beaudidily]

Hi. I've had OAG for 6 years with no real problems. All controlled with a single eye drop and once a year laser. Then!! ... a month ago it all went horribly wrong. My eye felt really sore. I contacted my consultant but he thought it was dry eye. I suspected otherwise so got my pressures checked and it was 49 in the one eye. Since then its been awful. I'm on 16 meds a day, my vision is awful,I can't work and the pressures keep going up when they try and decrease the meds. Im finding it so hard to stay positive. Has anyone else experienced this? They say they can't operate until the inflammation is under control. To make matters worse my consultant has been awol for 2 weeks. I'm seeing a private ophthalmologist tomorrow. Desperate to get on top of this . Any positive replies would be gratefully received. No horror stories please as I can only just deal with this one lol.

[Ritualhazard]

Can’t help too much I’m afraid, just to say I’m on my own rollercoaster of pressure spikes (in one case both eyes above 70) so can fully empathise. The only suggestion I have to is be open and honest about your anxiety. I have a friend who is further down this journey and she had some issues earlier this year. We went for a walk and a chat the other day and she said at one point she thought she had MS! I was Googling that exact thing the previous week……. It’s normal to worry, just don’t worry alone. Good luck on your journey, glaucoma treatments are amazing. You have lots of options and still time to get it figured out.

[Beaudidily in reply to Ritualhazard]

Your reply has made me feel so much better. Thank you and good luck with yours too.

[AlfredV]

This sounds awful. I went through something similar but without the meds as I cannot tolerate any of them. Ultimately I ended up with trabeculectomies - this may sound bad, but honestly, it changed my life for the better.

I never received any straight answers as to why this happened, and I think the reason is that our healthcare professionals are focussed on treating the symptoms (and saving our vision) rather than trying to identify the causes.

Now for me, even after trabeculectomies, my eye pressure was remaining stubbornly elevated in one eye and was needing some reworking. Meanwhile another health issue took a hold and I had a heart attack. Again, the symptoms were treated and a stent was fitted. I believe this all stemmed from me being poisoned several years earlier and my health kept deteriorating.

So why am I telling you this? Because I'm doing much better now. I changed my diet massively to a low carbohydrate healthy whole foods diet - specifically a strict ketogenic diet. This was my solution as an alternative to a life on heart meds because they really didn't agree with me.

But, there was an unexpected side effect. Both of my eye pressures came down ~25% each. The opthalmologists were quite staggered (although not particularly interested in what I had done). This reduction has now been sustained for over a year although I did require some interventional surgery on the one eye.

I have been unable to find any clinical studies to explain why my diet may have had such a profound effect on my eye pressure, but there is plenty of anecdotal information out there that echoes my experience.

I wonder if you may have other health issues which have coincided with your eye pressure spikes - possibly even be the cause of them? In the meantime though, very much follow the advice of your doctor/surgeon as it is important to get that pressure under control as soon as is practicable.

[Beaudidily in reply to AlfredV]

Thank you for your reply. I'm getting blood tests done to check a couple of things but one thing rings strongly.. stress. 6 years ago I was extremely stressed and this same eye caused a lot of trouble. Different trouble but thats when the glaucoma kicked off. This year I have been very stressed as my sister has been diagnosed with a brain tumour and again the eye has kicked off but much worse this time. Could stress be a factor? I guess so. Its good to hear that you are in a better place. Gives me hope. Thank you.

[AlfredV in reply to Beaudidily]

Stress can manefest itself in many ways. There are a number of functional doctors online (that would probably be frowned upon here) who will tell you that it is not unusual to come across people with new debilitating health conditions that were proceeded with periods of extreme stress. I do believe stress can make existing health conditions worse.

[Beaudidily in reply to AlfredV]

Yes I do too. I'm finding all these drops such hard work. I'm hoping that my vision problems are more to do with the side effects than anything permanent. We live in hope. This has been going on for a month now. How long did you have high eye pressure for? They think its caused by a very rare inflammatory condition which is recurrent. I'm praying they are wrong.

[AlfredV in reply to Beaudidily]

I had chronically high eye pressure for a couple of years, with interventions that did not work. Only when my pressures starting peaking at 50+ accompanied by misty vision did they decide to do a trabeculectomy.

[Beaudidily in reply to AlfredV]

I've been getting the misty vision. It comes and goes. I think once the inflammation is under control it will be a trab for me. So good to hear positivity from other sufferers on here. I was getting quite low but your replies have really pulled me together. Thank you.

[Ritualhazard in reply to Beaudidily]

I have the misty vision thing too. It also comes and goes. Struggled to get anyone to take notice as pressures were always in the normal range when measured in clinic. I was even sent for a brain and heart scan as they thought I was having mini strokes! So I invested in a home tonometer. It shows my pressures spike all over the place and now I’m taken seriously. For me misty vision occurs at around 45, which is too high as we all know but my consultant isn’t too worried. Says we need to do something, maybe a trab but doesn’t seem to be panicking (note I went private just to get someone to listen to me)

[Beaudidily in reply to Ritualhazard]

Thanks for your reply. Its a nightmare isn't it. I'm trying hard to stay positive but now I can't work. I work in an office with lots of LED strip lights and I end up in pain and I can guarantee the vision will mist up after an hour or so. I'm self employed so I'm easily dispensed of. But I've decided my health is more important than a part time job. I can look for something else when I get through this nightmare. I'm off to the eye unit again today and not feeling confident. I am seeing a private consultant tonight. I had to wait 3 weeks to see him. The wait times really scare me. You read that over 40 pressure is an emergency but you still have to wait to see a consultant on the NHS and even private. This forum has helped me. Its good to talk to others who truly understand.

[Ritualhazard in reply to Beaudidily]

For what it’s worth here are my pressures for the six weeks since I first brought my tonometer. It proved my cloudy vision and rainbow haloes were due to high IOP not anything more sinister (the concern of brain tumour or strokes actually made me grateful it’s “only” glaucoma). They put me on a third drop since the 45 spike but you can see they are still spiking. Happy for you to use my experience when you talk to your consultant.

Tonometer readings

[Beaudidily in reply to Ritualhazard]

Thank you.

[tcpace in reply to Ritualhazard]

Just wondering which home tonometer you use (and how much did it cost if you don't mind me asking)?

[Ritualhazard in reply to tcpace]

No problem. It’s the iCare Home2. It was recommended by my consultant. Can’t remember the name of the company that retails it in the UK. Really easy to use and honestly, has made the world of difference to me in managing my disease. I can self manage now without heading off to the eye hospital every time I had symptoms, hoping it would stay high until they measured me (weird I know but the spikes are transient for me). For example, I have developed shingles on my face between my eyes (of course) and also have a secondary bacterial infection which has resulted in my face and the area round my eyes swelling up. Obviously I’m worried about my eyes and I’ve just started to have symptoms right now so measured and yep, pressure is high. So I can take my drops early, check the pressure has dropped and stop worrying. It was eye wateringly expensive at just over £2,000 but as my brother said, if you lost your sight how much would you be prepared to get it back. I know I’m very very lucky to be able to afford this.

[tcpace in reply to Ritualhazard]

Thanks for that info RH. Hope your shingles and infection clear up fast. I recently developed shingles, fortunately confined to the elbow area and not too painful, possibly because I had the shingles vax about 5 years ago. £2K+ is pricey - I'll have to think about that.