Newly diagnosed and extremely anxious

[Gigi100]

hi,

I’ve read a lot of posts here and am finding them extremely reassuring , I haven’t found this on any fb so far. I’ll try and give a condensed story of myself. Maybe it might resonate with someone and help them, that they’re not odd for feeling a variety of emotions.

Firstly, 5 years ago I had an ear infection ( right ear) and ended up with tinnitus, which was extremely distressing and difficult to accept, but finally did it.

Next, in March this year breast cancer scare, had a lumpectomy on left breast, results ok. But need yearly monitoring . Increased risk!

2 weeks ago was driving and all of a sudden the vision in my left eye started to go, flickering in the upper left side and couldn’t focus well on the dashboard, got home (I know I should have pulled over). Was extremely distressed, husband drove me to hospital, was admitted and was there for 6 days. A variety of tests, a lot of heart, came back excellent. So nothing to worry about there!

CT scan didn’t show anything. Had an MRI haven’t got results yet, but was so extremely distressed before this that I couldn’t do it until the 3rd attempt, I had to take Valium 4 hours beforehand and then have IV sedation to get my brain and neck done. Did it though but was chemically assisted!

Had an Ophthalmologist this Monday just passed, diagnosed with glaucoma. This is what threw me into a panic/distress state and also a sense of dread! Before I fully comprehended this was getting my right eye lasered (all within 2 hours of being told I had glaucoma ).

Apparently the Ophthalmologist feels laser is more effective and cost effective as well. I walked out of there shellshocked, it was just too much. Eye was sore but did ease before the next one! Then 2 days later I had my left eye done! My pressures are 20 and 24, I also have some peripheral vision lost in the lower left quadrant.

I’m sitting here typing this feeling extremely anxious about my future. I am so scared of going blind.

I am 59, but up until now I thought I was indestructible, always in good health and keen on fitness. I have 2 daughters 17 and 15, I want to be fit and capable for them and of course my husband (he is 10 years older).

Oh well this is about it, I can’t think of anything else to add (I hope there isn’t anything else to add)

Thank you for reading. 🙏

[Trish_GlaucomaUK Partner]

Hello Gigi100,

You do not mention the type of glaucoma you have been diagnosed with, but it sounds as though it is Primary Angle Closure Glaucoma. It must have been so scary when you experienced the flickering while you were driving. Thank goodness you were able to get home safely.

The emergency laser you received will have helped reduce your pressure by making an extra drainage hole at the top of your Iris. Although you have lost some vision from the acute attack, the laser will reduce the risk of a further attack from happening.

You will now be regularly monitored to make sure your pressures are under control and your glaucoma is being well maintained.

Many people think that they will go blind once they have been diagnosed with glaucoma. This is a natural reaction, but this is a very rare occurance and tends to be more common in people who have noticed their vision changing and did not act upon it, until they noticed their vision had changed. This isn't the case with you, as you acted upon it immediately.

Remember, if you experience any flickering, halo's around light, nauseousness or extreme headaches, please act upon them and go straight to the A & E or eye casualty if there is one at your hospital, as these are signs that your eye pressure may have increased.

[Gigi100 in reply to Trish_GlaucomaUK]

Thank you so much. I didn’t even ask what type I had, I was in shock by it all. Still am. Just trying to process it.

[Trish_GlaucomaUK Partner in reply to Gigi100]

I can imagine. The good thing, even though it doesnt feel like this at the moment, is that your glaucoma has been picked up and treatment has begun.

I'm sure you will also get lots of support from the members of the forum, who I'm sure, have felt the way you are feeling now.

[Gigi100 in reply to Trish_GlaucomaUK]

🙏thank you

[Hidden]

Hi Gigi welcome to the forum,you've certainly had quite a time of it . I think shock is probably the initial emotion we all feel when first diagnosed with glaucoma and then to have laser treatment within a couple of hours of diagnosis I can't even imagine how you felt. Fear of going blind is probably pretty common but actually going blind not so much. You have been diagnosed ,received laser treatment and your glaucoma will now be monitored so any changes is eye pressure will be dealt with.

I was terrified at first as it came right out of the blue ,I had no idea there was anything wrong with my vision at all. I can totally empathise with the way you are feeling right now but it does get better and truthfully I only think about my glaucoma prior to an eye check up ,then I'm a total maniac 😱!!!

You need time to process all you've been through as it's still early days for you.

Take care

[Gigi100]

Thank you for your kind words, 🙏. How are you going? Do you take drops and or laser?

[Hidden in reply to Gigi100]

Hi Gigi I am actually doing really well thank you.I was only diagnosed 3 years ago at age 57 and due to it not being picked up at eye tests I had already lost a lot of vision in my right eye by diagnosis .I had angle closure glaucoma the same as you probably have. I had cataracts ops initially which opened up my angles to prevent possiblity of an attack. I've had trabs since in both eyes and I'm pleased to say I'm on no drops at all now and have pressures of 13/16. I know it can seem a struggle at first but you do get there. I live my life pretty much the same as I always did, I love keeping fit and exercising but I'm always careful never to have my head below my heart as that can raise your eye pressure.

I always write down any questions I want to ask prior to any eye appointment as my brain still goes to mush the minute I step into the hospital .

There's always someone here to answer any of your questions.

[Gigi100 in reply to Hidden]

Thank you for your reply. That’s a useful tip about writing down the questions. I think I was in shock when I was at the Opthamologists, I felt I had no control over what/is happening to me. I’m so pleased you are doing well, that’s reassuring. I’ve done some reading on the trans, they seem a bit scary. Have you done anything with your diet and or supplements. Once again thank you for your reply. 🙏

[Hidden in reply to Gigi100]

I know exactly how you feel, I actually couldn't speak after my optician told me I had glaucoma and I'm never speechless, the first thing I asked her was am I going to go blind !!! I then burst into tears as soon as I saw my partner and terrified him too. I was originally on drops as I wasn't a good candidate for laser but they didn't keep my pressure down low enough hence the trab ops. The thought of everything glaucoma related is much scarier than it actually is.

I've been a vegetarian since I was a teenager,I don't smoke or drink apart from a Bailey's at Xmas ,I'm a mad exercise freak and mostly drink water so there wasn't really much I could change . I do now take Flaxseed supplements for Omega 3 as I obviously don't eat oily fish and I now take B3 Nicotinamide as they have been doing trials on it with glaucoma patients which seem to be very positive.

I felt I had no control at first either but that did change as time went on.

I do always like to read positive stories on here but sometimes it takes time for you to get to the positive place yourself. I've definitely had times when I thought nothing was going to lower my pressures but I got there in the end ☺️.

[Gigi100 in reply to Hidden]

Thank you so much for your reply. It does settle me abit rereading your replies. About 2 weeks ago I was walking / jogging 5km, hiit and some weights (nothing heavier than 5kg) and also a lot of core work (planks, glute bridges, crunches, etc). I haven’t done much at all lately except take the Whippet for walks only 2km. I’m not even sure what exercises I can do now, especially the core work. Do you sleep on an incline, I’ve just stacked my pillows to form an incline, but I think I may buy a washer pillow (not sure what). Any suggestions. Once again thank you for reply.

[Hidden in reply to Gigi100]

Gigi you had an angle closure attack,were diagnosed with glaucoma and had laser treatment all within an extremely short period of time that is an awful lot to take on board and deal with so still being unsettled is totally natural.We are all or have all gone through exactly the feelings you are going through right now and adjusting to it and learning to accept the diagnosis doesn't just happen overnight.

Exercise is my happy place and my go to if I'm feeling stressed or agitated about anything. I asked my consultant what I could and couldn't do exercise wise and was told not to lift heavy weights and not to do anything where my head was below my heart but apart from that carry on as normal.

Taking your dog for a walk is positive, don't be hard on yourself ,if you don't feel like exercising yet don't .

I saw your other post about yoga breathing , at yoga I was taught to breath in slowly through my nose for a count of ten,hold the breath for a count of ten and then let it go. I do that everytime I have an eye appointment and I did it during my eye ops and it did help me. Also close your eyes whilst doing this .

I use a Tempur memory foam pillow which raises my head and I find that more comfortable than trying to sleep on 2 pillows .

It's early days yet so anytime you feel a bit anxious or just have a question reach out don't bottle it up .

[Gigi100 in reply to Hidden]

Hello, once again thank you for your reassuring response,I am so grateful for it. I don’t think it was closed angle attack, I do remember the Ophthalmologist saying it was unrelated (that I remembered!), his suggestion was it could have been a migraine! When it happens later in life it can be unaccompanied by I headache, so just the eye thing!I do feel quite alone at times and must admit my thoughts of the future aren’t too positive! There is still a bit of crying as well! Though I have discovered on Insight Timer, Yoga Nidra, which I have started to practice, I think it’s calming me a little. I have to wait 2 to 3 mths to check if the laser had “worked”, needless to say I’m a bit worried and I know stress isn’t helpful, I know all these things logically but it’s difficult to get passed it. Like you said this is a “normal” response.

I’m trying to eat even more healthy if that’s possible. I’ve incorporated B3 500mg at the moment and an AREDS2 formulation manufactured here in Australia. Hopefully these will do something, even if it has a placebo effect on me. As I’m not a vegetarian I’ve incorporated much more fish into my diet, again I hope it’ll do something.

I have bought myself a wedge pillow, hopefully I’ll get used to it, it was ok to sleep on it, also my sleep isn’t great at the moment as well, I suppose that’s normal too.

I feel it’s going to be a long journey, one that I’m not too keen to be on at the moment.

Yes exercise was/is my happy place as well, my husband always says he can tell if I haven’t exercised my mood isn’t as good!

Thank you for letting me reach out, it means a lot. If I could hug you I would. Thank you so much. 🙏 🫂

[Hidden in reply to Gigi100]

Gigi it is a long journey but I always hope we all get there in the end ,it's just a bit longer and more twisty for some of us. I used to have migraines a lot and they always started with weird vision but if caught then sometimes I didn't get the headache. I do now wonder if they were always migraines as I did have closed angle glaucoma !!!

Laser can take a wee while for the pressure to stabilise and waiting to find out is always the worst part as I think it's too easy to always expect the worst.

Yoga is very calming but I don't do any positions where my head is below my heart ,no downward dogs for me . That's on the advice of my consultant but there are people on here who still do these positions,I prefer to err on the side of caution where my eyes are concerned.

I think crying is healthy ,much better to get your feelings out then try to contain them. I have cried lots of tears in the past over my eyes and I'm sure if I got bad news I would again. Logic goes out the window when it comes to glaucoma , especially in the early days when just diagnosed. I have a great consultant who explains everything to me , let's me ask questions and listens to any concerns I may have and that made a huge difference to me.

You sound like you are doing all you can to make your lifestyle as healthy as possible .

I'm unbearable without exercise and my partner can tell when I haven't done any .

I tried a wedge pillow but it didn't work for me,it's all trial and error . Your sleep probably won't be great until you feel a bit more settled, which hopefully will be sooner than later.

Keep posting if it helps as we all know exactly what it's like and will do our best to help .

[Toby_from_London]

Hi Gigi100

I was diagnosed with glaucoma around this time last year having no idea I had pretty much lost sight in one eye, and understand completely the shock and panic you are feeling.

As others have said now you have been diagnosed, with a treatment plan in place you have the best possible chance

of preventing any further damage.

If you do need further treatment there are lots of lovely people on this forum who can talk you through their experiences and reassure you that you can get through this. Do reach out if you need to.

My advice would be to take notes in any consultation as it’s very difficult to process what is happening, especially when you are first diagnosed and in shock. There is lot of information on the Glaucoma UK website and Trish@Glaucoma UK is just a phone call away.

Take care.

[Gigi100 in reply to Toby_from_London]

Thank you for your kind words. It is not even a week since getting that diagnosis and getting both eyes lasered. I’m still abit dazed by it all. I’m in Brisbane, Australia and haven’t found a forum like this one, yet. How are you going, ok. How do you maintain your eye health, drops,laser, etc?Yes, I have had some wonderful replies which I am so grateful for.

Thank you for the advice regarding taking notes, that’s very helpful.

I could Skype Trish@Gaucoma UK, I suppose.

Thank you for your reply, it does help, a lot.

[balacakkhu]

Hello Gigi100, In your case the diagnosis and the treatment have been made earlier so that you are in good and safe hands. This is the long journey. You may find the very useful informations in this Glaucoma UK. We all share our experiences (good or bad) and supporting each others. Please keep the note when you see the consultant and also make the lists of your questions to ask. Now most of the hospitals give the copy of the clinic letters (digital or paper) which are very helpful. With best wishes.

[Gigi100 in reply to balacakkhu]

Thank you for your reply. Yes I do have a sense that it will be a long journey. This forum does seem very helpful and I am so grateful that I have found it. I’m in Australia and I think they’ll give me a copy of their notes.Thank you for your best wishes.

[floki7]

Hello and welcome, you will find a lot of support and answers to any questions you may have along your journey with this nasty disease by your side from the good people on here, but you are in good hands now, with the hospital monitoring you. If you notice any change in your vision at all get on to the clinic straight away, don't feel silly if it turns out to be nothing, it's your eyes after all ! Good luck and best wishes.

[Ripley001]

Hi, I am new here and came across your post by chance and all the informative answers, which have helped me enormously . I have recently been diagnosed with high pressure but not glaucoma. I had to pay for a private consultation as I was worried about the results from opticians. I’ve been through loads of emotions and worries about it . I’m now on eye drops and waiting for an NHS appt. I’m so glad I found this forum as it has been very reassuring . Hope you’re coping okay .