Diagnosis in 40s

[Griffira]

Hello, does anyone have experience of with primary open glaucoma in their 40s? I have recently been diagnosed by an optometrist and I am waiting for a hospital appointment in a couple of weeks. I’m on Monopost as some damage has been detected in one eye. I am catastrophising about what might happen in future especially as (in the optometrists words) I have a long way to go - although I realise I may be lucky to have been caught now rather than later. Does anyone in a similar position/age when diagnosed have any advice or tips to share on how to approach things? I'm worried about impacts on work, driving and quality of life in future.

[Laura7777]

Hello,

I’m sorry to hear about your recent diagnosis and the worry it is causing you. As you say, you are quite young to have glaucoma.

I was 28 when I was first diagnosed and it was only discovered because I had lost so much eye sight and was experiencing rather drastic symptoms. It sounds as if you have been ‘fortunate’ in that it has been picked up in the early stages of damage. This is so important. Once identified, treatment/management, such as drops, can begin, and that should stabilise the glaucoma and minimise any damage in the future. It is important to take your drops as prescribed and to keep appointments so that your progress can be closely monitored. There is no doubt that a glaucoma diagnosis is a worrying and often scary diagnosis to receive but you will find the folk on this Group very helpful if you have any particular problems or are worried about anything specific. Also, Glaucoma UK has a wealth of information on it’s website and a helpful advice line too.

As to your particular ‘catastrophising’ about the future, many will tell you that while we are all on a similar journey, no 2 cases are the same. For example, my case is quite different to yours with regard to the amount of damage that had been caused before diagnosis. I had only about 5% of vision left when Normal Tension POAG Glaucoma was eventually diagnosed. Even so, with surgery (trabeculectomy in each eye), a cocktail of drops and tablets, I have kept that small amount of sight for 40years. Most people are able to keep driving (not me, obviously) and keep working although that will depend on your job. You might find it helpful to talk to your optometrist about your particular situation as he/she knows your condition.

Quality of life in the future will depend a lot on you. You are worried and probably a little shocked right now but you can come to accept the diagnosis in a short while. I found it helped to find out as much as possible about my condition and take an active role in the monitoring (I had regular eye pressure checks with my local optometrist to satisfy myself that my drops were working and keeping my eye pressures down). Quite a few folk on here, me included, have gone the private route to get a diagnosis/good management plan. The advantage is the much shorter waiting times for an appointment and the time you get with the actual consultant to ask all the questions you can think of. You can always change to the NHS if you need a procedure; they are used to it.

Quality of life for most folk is not greatly affected by controlled and managed POAG, not as much as getting older affects life anyway! Despite having very little sight since 28, I still went on holidays abroad with all the swimming and sight-seeing that entails, still had an active social life, watched films, read books, meals out etc etc. The only things I watched out for was very smoky atmospheres (a thing of the past now), air conditioning and very windy days (although protective glasses helped with this one). I made more of an effort to eat healthily, cut down on caffeine and we bought an electric bed to raise the head of it as it is thought that sleeping in such a position helps stop eye pressures going up at night. I had other problems purely because of having just 5% of sight. Obviously I couldn’t drive and I am a bit of a loose canon in the kitchen. But that is just me. Most folk do not have quality of life affected to any great extent.

Sorry to give you such a long reply, please let me know if you have any specific questions.

Good Luck,

Best Wishes, Laura

[NewSh0e]

I couldn’t put it better than Laura has done. I was also diagnosed in my 40s, purely by chance at a routine eye test and I already had significant damage in one eye. There is a theory that suffering from migraines and Raynauds have some bearing and I have both, migraines particularly and more seriously when I was younger.

The most important thing to minimise the risk of further damage is to use the drops religiously. As others on here will tell you, if you do, there’s no need to lose your sight. I’m 15 years on and since Covid when my appointments kept being cancelled I’ve been under the care of a private ophthalmologist. If you can afford it, it’s worth doing for the peace of mind. Good luck and shout with any questions, There will always be someone on here ready to help!

[BrownieBaker]

Hi there, I was diagnosed with secondary open angle glaucoma (secondary to an eye surgery I had, but nevertheless open angle glaucoma) in my late 30s. I catastrophised too, but I’m 56 now and nothing much has changed with my sight since diagnosis. I am careful always to put my drops in as required and that seems to have done the trick. Everyone is different, but it is possible to really really slow or halt progress of the glaucoma. All the best with your consultant appointment and try not to worry. I work, drive and live a very normal active life and no reason why you shouldn’t continue to do so. 👍😊

[warwickshire_singh]

I'm sorry to hear of your situation.

I was diagnosed with Uveitic Glaucoma (left eye due to trauma) at 35 in 2012... haven't let it affect my quality of life at all, especially since shunt operation in 2013. I carry as normal as before diagnoses, but keeping in mind of the important eye drops

Good luck and don't let it change your life too much

[Jellymanpeanut]

hi I was diagnosed in my early thirties and am now in my early fourties. I also catastrophise and imagine losing my sight and sometimes that feeling can leave me overwhelmed, angry and sad. My vision is still fine and I drive and do everything I did before. I know it might not be this way forever and it’s ok to worry. But right now I’m ok.

[Ingaga]

I was diagnosed when I was 28, now 42 taking drops three times a day. I know how you feel when there are mainly age 60+ patients in the waiting room at the hospital and you are the only one "young". I did lifestyle changes similar to what Laura said, cutting coffee, bed raise, exercise, diet changes, but what helped me most with the anxiety was starting morning meditation routine. It has definitely helped with overthinking about the eyes problem and those panic moments have disappeared. All the best!

[Shinal_GlaucomaUK Administrator]

Hello, it is normal to feel worried and shocked, after being diagnosed with glaucoma. The earlier glaucoma is detected and treated, the better the outcome. The intervention with eye drops like Monopost, can significantly prevent any further damage to your optic nerve. It is good this has been detected now, rather than later when it may have caused more damage to your vision. You can carry on with all normal activities such as work and driving unless you are told otherwise by your eye doctor. I know it can be overwhelming, please contact the Glaucoma UK helpline on 01233 64 81 70 if you need any further advice.

[MrsTeacup]

I know exactly how you’re feeling. I'm a 56yr female and was diagnosed last week. I had noticed an annoying floater in my right eye and thought I’d go to Specsavers, as I’m on a contact lens scheme with them that gives me free checkups. They did the routine puffer test and noticed the pressure higher in one eye. The optometrist wanted to dilate my eye but I needed a driver, so I arranged an appointment for the next week with my husband. On the next appointment the puffer test showed an increase in both eye pressures, the optometrist didn’t want to dilate my eyes then, but refer me straight away to an ophthalmologist. (We live in Ireland) There was one in the same town I live and I went straight away (Paid privately) He did the peripheral test and OCT test and diagnosed glaucoma, Monopost drops and wanted to see me in 3 months. That was it!!! No explanation, no telling what kind of glaucoma or what stage I’m at with it. I wasn’t prepared for it so couldn’t think of any questions to ask. My mind went blank! I’ve now done google research on it and found this website, which has really helped. I also attended the webinar last Monday with Rajan Tailor which was just what I needed. I will now attend my next appointment better informed and with a few questions.

I am a pet portrait artist, so obviously I had a few restless nights of what my diagnosis meant for that! I will just see how it goes. I feel an eye drop once a night is completely doable…I get a bit freaked out when I think of eye surgery but I’ll cross that bridge if it comes to it!

I have a new appreciation for my eyesight now, and being informed has definitely helped me to be more optimistic about the future.

[MeoWow]

Hi there - I was diagnosed in my early 30s in a routine supersavers check up, it wasn't fun especially after googling and reading bit too much about it. Felt very lucky to be diagnosed and it was an easy fix - one drop of Latanoprost / Monoprost every night - that's it! Apart from those drops, there was no other lifestyle changes. As long you keep up with your drops you will be ok. Always follow your doctors advice on drops as every situation is unique and you may have slight variation in the conditions etc . Good luck and don't let this get you down...

PS: I'm in my mid 40s now...

[USME]

Hi Griffira, I was diagnosed in my mid-thirties. I am now 70. After dozens of laser procedures, shunts, stents, bleb, trabeculectomies, both eyes, 3 detached retinas, two severe infections and a cornea transplant; I have no vision in infected eye but have good functional vision in one. Many, many different combos of drops, currently 9 daily. Every "case", person is different. Best advice, find a good doctor you are comfortable with who takes the time to answer all your questions and listens to your concerns. Take your drops religiously and stay positive. One day at a time. Almost forgot I stopped driving about 4-5 years ago. That is still tough to deal with. Find a good support person or support group. Good luck.

[Sorshup]

Thoughtful and helpful reply from Laura, but hers has been a more severe situation from the start, it seems. I was diagnosed at around tyhe same age.If you are on medication before being seen at hospital I assume your optom has an Independent Prescriber qua;ification. I suggest (check also with him/her too) that you cease medication a couple of days before hospital appt. so your true IOP is vident. But don't worry about he future: Just maintain close monitoring by optom and hospital , only go private if in due course it appears necessary.