Worried and Scared

Hi I’m julie just been diagnosed and I’m so scared. Hearing so many horror stories on the internet. I’ve been given lantanprost and will be seen in another 3 months . Passed vision field test but can’t get out of my head I will go blind

[Noelhoney]

Hi Julie...I understand exactly how you're feeling, I'm in the same situation although as have poor vision in my left eye....people are saying to me...well you can still see, what's your problem....! It's the future that is scary ! Not the now ! A lifetime of eye drops and care is daunting but we all adapt...I wish I'd gone to the optician for checks but we all assume that if nothing is wrong there's nothing to worry about....I myself went for good vision to poor vision overnight...it still scares me....it's a long journey ahead for us....it's hard but we must be strong....

[Hidden in reply to Noelhoney]

Hi Thankyou for your reply. How long have you had glaucoma for may I ask. Do you still drive and work

[Noelhoney in reply to Hidden]

Hi Julie..I believe I've had it for quite a few years without symptoms , during a eye test in 2016 I was told I had high eye pressure and had a visit to the hospital who did a laser hole treatment in my eyes however Glaucoma was not mentioned, two weeks later I moved to Spain where I live now...early October vision problems occurred, it's now been diagnosed as Advanced Glaucoma....I am driving still at the moment...I am retired but work as a piano player...for us all it's a life changing event that will take a period of adjustment, I don't know if it's the stress for me but I sleep more now and seem constantly tired....I also find bright light irritating where only 2 months ago I loved being in the sun !

Feel free to message me whenever you need to chat about your situation...you're not alone...

[Hidden in reply to Noelhoney]

Thankyou Noelhoney. I’m sorry your outcome happened so quickly. Wow you still drive though and that’s such a positive thing. I guess like everyone else’s says as long as you keep your treatment up the future looks better. I really appreciate you being so kind as I’m really scared right now. Anyway onwards and upwards for both of us. Keep tinkling the ivory’s xx

[Noelhoney in reply to Hidden]

And thank you Julie...Like me you will have good and bad days...You will feel like your eyes control your life...you exist for just them it will seem...every morning I wake up and can still see is a blessing...the thing is to be positive and live for the moment, as I've been told, what's happened has happened it's now time to accept and take it in then adapt....I'm finding that as hard as you are too....I panic and crave for my old life back but I have to live a different life now....like all of us x

[nat10]

Hi Julie, try not to worry, I was diagnosed 10 years ago and have only lost a little more of my sight. Before drops I had lost some of my sight in my left eye, none in right. Lost some more in left so had a trab op in 2016 and that has been stable since and still no loss in right eye, but having an I stent op on that eye hopefully to reduce amount of drops, so lots of drops and things that can be done. If you find the drops are irritating your eyes ask for preservative free as my eyes felt a lot more comfortable with these. And I still drive and go to the gym. All the best,

[Jennymary]

Just reading some of your replies, not sure if this helps or not, I'm 58 yrs old born with glaucoma, 4th generation in the family, when it was discovered that my mun had it her 3 children had to be tested, this was back in the seventies, I'm the only one to have inherited it, at the time I was a teenager and I've used drops ever since, my glaucoma never stopped me doing anything until 3yrs ago when I had to give up driving due to eye issues (long story)

[Lynne-H]

Don`t despair Julie - if you passed your field test then it probably means that your peripheral vision is still ok.

I was diagnosed with narrow angle glaucoma when I was 47. I am now 73 and still have good eyesight. I had a laser iridotomy straight away and wasn`t prescribed drops until I was 64.

I`ve had a few other problems with my eyes (nothing to do with glaucoma) - had a macular hole repaired in my right eye and the cataract done at the same time.

I use Ganfort drops and have check ups every six months.

I know it`s scary now but sounds like you`ve caught yours early and with good care and regular check ups you`ll be fine.

Lynne

[Hidden in reply to Lynne-H]

Hi Lynne - H Thankyou for your kind message it means a lot and takes away the horror stories I’ve heard. That’s amazing you still have good sight. I’m so grateful for you messaging me. Xx

[Lynne-H in reply to Hidden]

You`re very welcome Julie.

All best wishes xx

[Wales99]

Bless you. I was exactly the same. I was diagnosed early October & I’m still freaking out a bit. This site is really helpful also the Glaucoma UK website- they have loads of useful & reassuring info on there. Don’t Google! You will always hear the worst on the Internet. At least you have been diagnosed now & your treatment should stop it getting any worse. 😊.

[Hidden in reply to Wales99]

Thankyou for your kind reply. I hope you get on well to. Xx

[Traveller66]

Hi Julie,Responding to your post because I wanted to reassure you! I am in Canada- was diagnosed 17 years ago at age 50- luckily caught early as my father and aunt had glaucoma so I was getting yearly checks of my pressure- I can see well and my visual fields are all aok and unchanged- I am using three different drops- feel really fortunate to have had great care.

I remember being so scared in the beginning but gradually realized that my pressure could be well controlled.

All the very best to you!

Joy

[Hidden in reply to Traveller66]

Hi Thankyou for your message and kind reassurance it men’s the world to me. I’ve never been so scared. I’m just in one drop and day in both eyes passed my visual field test as well and have to go back in 3 months. I think I’m overthinking a lot and also only reading the horror stories online. Very worried about my sons now though xx

[misspops]

Hi Julie,I've had Glaucoma for over ten years. I've been fortunate enough to have a good doctor who has me on four different meds. Like Nat10 has said, get the preservative free ones. The preservative, benzalkonium chloride (BAK), is common, and can cause more problems, that you don't need. Although I have lost some peripheral sight, I am still doing everything I used to do, including driving. The only time I have ever noticed this loss is when walking in areas of the woods, where there are small branches at head level that I have to navigate through.

Don't be scared, you can live with this.

[Hidden]

Thankyou for you lovely message it means a lot. Everyone has been so supportive and put my mind at rest. Xx. Your very kind I really appreciate it. Thankyou again. I’ve read to many horror stories and they are the ones that stick in mind unfortunately I googled to much. So it’s nice to hear from people like yourself who are getting on with life and managing this. Xx

[Ben66]

Hi Julie, l was diagnosed nearly four years ago and went through exactly the same feelings as you. The worst thing you can do is search the Internet for info or advice but this site is excellent. I have been on ganfort eye drops and my sight hasn't changed. Most people who lose a lot of their sight have been unaware of the problem because they don't bother with regular eye tests. You have been diagnosed before it has reached that stage and now that you know about it and are getting treatment you are in a far better place and should try to be positive and get on with your normal life. Would be a good ldea to get family members tested once a year. My dad had it but l was unaware of that but l did have eye tests every two years and it was spotted. It is a hard thing to accept but as long as your being treated and having regular checks you should think positively rather being depressed and perhaps causing other health problems. All the best.

[Hidden in reply to Ben66]

Hi Ben66 so nice of you to message me. I really appreciate it. Yes I’m very scared but people like yourself on this site have been helpful and kind. So scared at the mo but was told optician caught it early. Passed field vision test as well. I have drops to take once a day. This group has really helped as I google a lot and always hear horror stories so Thankyou again.

[chris4146]

Sounds like it has been found early as your peripheral vision is ok, keep taking your drops ,never miss an appt,so they can monitor yr vision frequently,and it's highly unlikely you will go blind,it's a pain sometimes having to put drops in everyday,but just becomes routine,all the best to you.

[Hidden in reply to chris4146]

Hi chris4146 thanks for the message so kind of you. People have been so nice on here. Yes I will definitely be doing my drops without fail and keeping every appointment. Thanks again for uplifting message xx

[Hidden]

Hi Julie, It is natural to be scared when something happens over which we have no control. 30 years ago during a regular visit to the optitions, I was diagnosed with glaucoma in both eyes. I had never head of it & in 1990 there were very few computers, even in offices (probably a good job, as I could not find anything out about it). To make things worse, the pressure in both eye was so high that I was transferred from the opticians to a hospital & had a trubalectomy in each eye (not both on the same day). I was never prescribed eye drops until nearly 2 yrs ago. I became scared then as nobody would tell me why I suddenly needed Xalatan when I had never been prescribed drops before. Later that year when I had to visit the eye hospital again, I explained to a nurse how I had felt & that I would have been able to cope with whatever the problem was, if only I had been told. She told me that the pressure in my eyes had been rising for some time, & I had been prescribed the drops to bring the pressure down - so simple & I felt relieved just to know.

In 3 months I will be 85yrs. I enjoy driving, although I now I prefer not to drive such long distances ~ & I have been complimented 3 times this year on my good driving and how safe each passenger felt in the car when I am driving.

So yes, perhaps it is normal & natural to be frightened in circumstances we do not fully understand & cannot always fathom out. You have a wonderful life ahead of you despite glaucoma, and you will always find support on HealthUnlocked. Amelia

[Hidden in reply to Hidden]

Hi overend Thankyou so much for your message. I certainly have been overthinking your right there. Your story is remarkable and made me feel you can have a life with glaucoma. How inspiring you have been to me. Keep up with your driving that is so incredible. Thankyou again for the heartfelt message. There are some very kind people on here and you are another one that I have had the pleasure of having a message from. Xx

[Gobaith77]

Hi - I posted for the first time on this site back in August and my post was very similar to yours ( it was Called just diagnosed and scared). I felt exactly the same as you - the shock is a lot to cope with. I am 43 and mine was picked up through a routine eye test - I have lost some sight in my right eye and have struggled to come to terms with not going for an eye test for four years and asking myself if that could have made a difference. It sounds like you are in a good position - I know how scary it is though. I have had laser and waiting to find out if it has worked- I did start to feel better once treatment started. Good luck - I think that over time as things are more in control this fear will pass.

[Hidden in reply to Gobaith77]

Hi Gobaith77 Thankyou for your kind reply. Yes your right it’s scary but this is a lovey site with so many lovely people. I wish you well with everything xx

[Bonniecat7]

Hi Julie,I have just been diagnosed. I'm 43 and it was a total shock as no one in my family has it. I have found this website really useful and got excellent life style advice from the e-mail help line. The eye doctor has told me absolutely nothing! I feel frustrated that I was left to search around on the internet for information.

For instance running can cause high pressure in the eyes and so can some yoga positions. I am having to completely change the way I excercise as running and yoga were the things that I would normally do. I don't understand why the eye doctors don't routinely tell you these things or give you a leaflet. If there are things I can do to help save my sight alongside my eyedrops I'll do them!

The doctor said she wanted to see me in 3 months but I had a phone call yesterday saying that the notes say I need the next appointment in 6 weeks, so don't be surprised if you're suddenly told you have an appointment sooner! I'm struggling to have any faith in the quality of care I'm getting at the moment but can't figure out how it works - like if I can change surgeries of if I'm just stuck with this one person. I'll see how I go in the next appointment, maybe she is waiting to gather more information about my eyes before giving me information.....

[Hidden in reply to Bonniecat7]

Thankyou for your reply I feel exactly the same. The eye doctor who I’m absolutely is fantastic at his job never said anything to me at all. Are you in the UK. I also had no one in my family either but now worry for my children. I hope you get some answers. I just got Lantanprost and told once a night see you in 3 months. It’s not good because of the worry

[Bonniecat7 in reply to Hidden]

Yes, exactly the same for me - lanatoprost drop once per day, see you in three months. No other information. I'm in Warwickshire in UK. The only thing that does give me some faith is that she has put me on the preservative free drops straight away. From watching a webinar on here I've learned they are best if you have any sensitivities.

I think my biggest immediate concern is what if I am no longer allowed to drive?

My job depends on me driving to it. I work very irregular hours all over the country, so public transport is not an option for me.

I know many people can still drive for a long time with glaucoma, but I know I will have to take a test with the DVLA to determine this.

I'm confident I can still do my job well - it's close up work and the clarity of my close up vision is very good. I just have what feels like a large patch missing from it in my left eye

[Wales99 in reply to Bonniecat7]

Hi Bonniecat7 I’m still running (on a treadmill at the gym) and have been told that running/aerobic exercise lowers eye pressure. My consultant told me that exercise is good for Glaucoma.

[Bonniecat7 in reply to Wales99]

Thanks Wales 99. It was advised through the helpline in here that I only run for 15 mins at time and walk in between. I did a triathlon 2 years ago, and suffered terrible headaches after training, so concerned I did all sorts of damage during that time

Apparently the nerve damage to my eye was present 5 years ago on the scan photos but my previous option didn't pick it up.

[Wales99 in reply to Bonniecat7]

Hi Bonniecat7 ah that makes sense. I have been getting terrible headaches after exercise for the last 4 years & was always told it was post-exercise migraine. I have been battling for 4 years to get a diagnosis because I just didn’t believe it was post exercise migraine. Now they think the headaches were caused by the Glaucoma. No triathlons for me though! I do a combination of running/walking on the treadmill. Please can I ask what other cardio exercise you do? I do like to do cardio as well as resistance.

[Bonniecat7 in reply to Wales99]

At the moment I don't do anything! I kind of slacked off after the triathlon! But running and yoga (well body balance, yoga, tai chi and pitales mix) have always been the two main things I enjoy. Now yoga isn't an option either because of not being able to do positions where your head is below your heart. That rules out alot if them so seems no point. Also running for me is all about the challenge of how long I can run for without stopping, that was always what motivated me to get out and do it, seeing an improvement each time.

I also used to enjoy Body Pump, but lifting weights isn't a good idea either. Which makes sense, as you can almost feel the pressure in your head in general raise.

I believe that cycling is still ok to do but I'm guessing that any cardio raises pressure in the eyes if done continuously?

[Wales99 in reply to Bonniecat7]

Hi Bonniecat7 . Bless you. I know what you mean. I was very fit 4 years ago but haven’t been able to exercise properly because of the debilitating headaches and I’ve put on a stone in weight 🙄. I have heard that exercise lowers eye pressure so maybe prolonged cardio? I wish there was more expertise out there- a specialist that you could ask. Don’t give up though. I have powered through for the last four years & I’m not giving up now. Maybe your consultant can give you some more advice? They don’t volunteer information- you have to ask. I go to mine with a list of questions. TBF though I am newly diagnosed so have only seen him twice. Thank you for that info though. Always happy to chat. 😊

[Wales99 in reply to Bonniecat7]

Also - I was just reading your earlier post & didn’t realise you’d not had very good care so far. On the Glaucoma UK website they have a number of recorded webinars that they have done & one of them is a consultant giving a talk for the newly diagnosed. I found that really helpful. I’m attending a webinar for them next week on how to get the best out of your eye clinic appointment. Might be worth a look for you?

[Bonniecat7 in reply to Wales99]

Thank you. Yes I would be very interested in that. I watched one about dry eyes (which I also have) and found it really informative.

I know what you mean about having to ask questions. The consultant did answer my questions to be fair but there are some things I don't know I should be asking!

One of my questions was could my persistent headaches because by the glaucoma - the answer was a flat no. They have to be! I've had blood tests a year ago, which didn't show anything and a CT scan recently (which the eye consultant said she would consider doing in 3 months when I go back, if there had been any changes. When I told my GP, she arranged for one to be done straight away because if the glaucoma + headaches combination ) I'm relieved the results came back normal.

[Wales99 in reply to Bonniecat7]

Yes funny you should mention that. When I first saw my consultant he said the headaches were almost certainly related. I was so cross because I’d been saying for four years that there was something wrong & it wasn’t migraine & no-one would listen to me. I emailed the NHS trust who originally saw me. Well that was a mistake- they all closed rank & said that the headaches aren’t related now. I think they were worried I was going to sue. I never had any intention of that I just wanted to raise awareness. Wish I hadn’t now because they obviously are related because they’ve got better now I’m on eye drops. But because of that my consultant has clammed up & won’t give me any advice.

[Bonniecat7 in reply to Wales99]

I've just had a look on the website but can't find the webinar section now. Not sure how I stumbled across the last one I watched! I put webinars in the search bar and no results came up....

[Bonniecat7 in reply to Bonniecat7]

Oops, found it! In the events section🙂

[Wales99 in reply to Bonniecat7]

Ah yes I was going to say I think I found them in digital support.

[3020]

Hi Julie, I’m sorry to hear about your diagnosis. A daunting time to say the least. I was diagnosed a couple of years ago at 36 and didn’t take it very well. It’s taken some getting use to (drops x3 a day) but I try look at the positives. It’s had an impact on my confidence given some of the visual changes but I’m grateful I wake up each day and get to see my kids. Just keep on top your medication and regular check ups. It will be ok. I wish you all the very best.

[Hidden in reply to 3020]

Hi Thankyou for your message it’s so difficult not to think about it everyday. Were you diagnosed quite late due to the vision changes

[GardeningDorset123]

It's horrible..but read all the posts here that are so positive and helpful

[GardeningDorset123]

It is terrifying ...I understand.. what are your pressures? Mine have been ok with drops.. for About ten years