Scared

[pinks223]

Had my eye test today I’ve had glaucoma for 6 years so far my pressure has been good today was up to 36 my dr was not very happy and used some very negative words like aggressive glaucoma . I was very upset and told him so . He put my on 2x drops a day and potentially laser surgery in a few months . How do I cope ? I have a daughter to care for who’s 9 , I’m scared I won’t see her grow up and I’ll loose everything I’m a single mum too so life is very very hard ,

[neblina]

I had a fairly urgent referral once I got my diagnosis - 4 weeks or so from Glaucoma clinic confirmation to my YAG laser op on Friday. I was panicking I'd go blind in my 40s (already lost some vision) and now I'm just grateful I've got something to try. It's always good to have a treatment possible.

[Efabear]

Oh bless you. I know how scary this can be. But there is so much they can do now to manage IOP's and I'm sure they will get your treatment right. Its very rare now to go blind due to glaucoma if it's caught and treated early, which it sounds like yours has been. Equally when things feel like they are out of control, its normal to feel scared and low. My own journey has and still is a roller coaster, but that's mainly as I was diagnosed when my disease was already advanced, but I have got so much support and kindness from folk on this this site and from the glaucoma UK help line, who may have suggestions for getting you through the rocky times. The RNIB are amazing too if you do have some sight loss. For now give yourself some time and space. I promise it will start to feel better as the new treatment regime kicks in.

[Toby_from_London]

Hi Pinks223

I was diagnosed with glaucoma about a year ago and I know it’s a horrible shock but please don’t despair.

There are many successful treatments available and you have been diagnosed early, so there is every chance the progression of glaucoma can be halted and your eyesight won’t be damaged.

Laser treatment is not as bad as it sounds; it’s fairly quick procedure under local anaesthetic and nothing to worry about. Just make you use your drops and keep any hospital appointments; everyone on this forum is here for you so reach out if you need to.

I know it’s difficult but please try not to worry.

Love to you and your daughter❤️

[Ritualhazard]

I was diagnosed with high IOP about four years ago. Last year I had acute angle closure glaucoma with pressures of 68&71. I had bilateral YAG last year and still struggling to manage my pressures. Last night they were 36&32 and this morning they were 20&17. I’m on three lots of drops and the consultants are still deciding on next steps. No one seems to be panicking about my pressures although so far I haven’t lost any vision. High pressures are not definitely an indicator of sight loss although they are indicative and can lead to sight loss of joy controlled. It sounds like your treatment is going the right way. Don’t panic, take the drops, go for the laser (which has 70%success rate and is almost zero risk) and make sure you get regular field tests. Good luck x

[pinks223]

Thank you all so much for your kind reply’s I’m sti very low mood people @ work commenting those who notice anyway . I’m struggling but I’m hoping they get it under control , you are all amazing people on here to be so brave and go thru so much

[charles555 in reply to pinks223]

Ur doc may have said ''aggressive'' but IOP early 30s still not high enough to lose your eye sight over short period of time. There is such aggressive glaucoma that blind you in a few day, with pain. You don't have that, so don't panic. Sometime medication works wonders, Take them and watch closely at IOP.

[muddledme in reply to pinks223]

Hello pinks 223,

Yes it is a shock when your previous stable glaucoma seems to be causing concern. As others have said worrying does not help anyone.. I find that when things go wrong I concentrate on all the positive things in my life.

You live in a beautiful country (not a war torn Ukraine) and have a 9 year old daughter.

Doctors use the term' aggressive ' with many diseases, I suppose it must be difficult to use some other words which patients could find equally worrying. At least your Doctor is planning your treatment and hopefully explaining things.

Having worked in several Australian hospitals many years ago I always found them of a high standard.

Learning as much as I can about Glaucoma has helped me understand a bit more, which gives confidence when asking questions of the medics.

I also record all the medicines and various visits in a small book.

Perhaps you could get your daughter involved in learning about the function of our eyes and how to protect them?

Looking after general health is also important of course, to help prevent other diseases as much as possible.

Best wishes

[Helen_GlaucomaUK Administrator]

Hello pinks223You have lovely people here supporting you and we are also happy at Glaucoma UK to do the same. If you want to talk, please do give us a call on the Helpline 01233 64 81 70.

If you do your drops every day and at the same times and have the laser treatment, hopefully then these will control your eye pressure.

If it should be needed there are other treatments which can be done but hopefully it won't be necessary.

If you are happy to, why not let work know, what you are trying to deal with, so they can make allowances.

[pinks223 in reply to Helen_GlaucomaUK]

Hi Helen

I try to do drops same time every day ( I have 2@ night one in the morning I haven’t been told to do it at specific times ( I do one around 8 pm one @ 8:30 pm one in the morning about 7 am

I haven’t told my work because they would not be supportive at all my workplace is verrry toxic so no no chance of that happening which also causes me stress cause I work in aged care so once u develop a condition they pretty much give u the boot . Thank u for ur contact information I’ll certainly use it I have life line and beyond blue helping me a bit more than anything at the moment

[Helen_GlaucomaUK Administrator]

Hi

Try to get the drop that is twice a day 12 hours apart if possible.

I am so sorry to hear that you are working with people that are so unsupportive. Do you have an occupational health department at our work?

I am however, very happy to hear you are making use of other organisations to support you at this time

[pinks223 in reply to Helen_GlaucomaUK]

My dr said 2 at night one in the morning not sure if I can get 12 hours I get 7 I may have to call him and ask for confirmation on that as I wasn’t really listening to him at all more busy crying than anything. At least it’s going in at the moment but I may call him tomorrow and ask how much time between drops , the drops are doozy’s like daggers in the eyes so stingy but is what it is I’ll have to get used to it 😵.

Yeah my work has all the OHS and all that but they are useless and my boss is nasty as so I just trying to find a new job away from all the bs

[Hidden]

Oh Pinks I'm sorry to hear you had such a negative experience with your consultant. It is scary when you hear words like aggressive in relation to glaucoma and I think a lot of times the consultant doesn't remotely consider how it makes the patient feel. Your daughter being so young is obviously a concern for you but the positive news is you are receiving treatment and although SLT sounds frightening I know from others it's over very quickly and in many cases very successful. The drops may well control your pressure and keep it stable . As others have said pressure alone is not the whole story and you do appear to have been caught early. I know telling you not to worry is a bit pointless at the moment but you will get there in time. You aren't alone everyone here understands what you are going through and there's always someone to talk to.

Take care x

[Helen_GlaucomaUK Administrator]

The drop which is twice a day could be done at 7am and 7pm or 8am and 8pm or times convenient to you. Whatever is best for you. The drop in the evening which is only done once a day, again can be a time which suits you as long as you leave 5 - 10 minutes at least before you put it in after the twice daily drop.

[Karjade]

I have to take my drops three times a day so I take them at 9.00am, 3.00pm and 9.00pm. I truly understand how scary this all is but trust your Consultant as they know what they are doing and won’t let you take any risks. I am terrified every time I see my Consultant and I tell her how I am feeling. She usually reassures me so I am not worrying when I come home thinking the worst xx

[balacakkhu]

Hello pinks223, For two times a day please make about 12 hours apart, at night dose please keep the same time every evening. You can make the alarm so you do not miss or forget to put in. Please visits glaucoma uk website which contains various talks/ informations by various specialists. The treatments and managements of glaucoma are improving every day so you will be fine. With best wishes.

[pinks223]

I did check with my specialist he has no specific times as long as I take it 2 at night one in the morning I try to make it same time each night same in the mornings as well . I very much hope I will be ok it’s a hard thing to go thru