Worried about clinic appointment\how to cope
Posted , 5 users are following.
Hi
I'm a glaucoma suspect, in my early 40s that has been visiting the hospital eye clinic for the past 3 years. I have an appointment, the first one for over a year, later this week. I'm really not coping very well, am feeling sick in the stomach and having heart palpatations and struggling to sleep. I'm spending most of my day reading about glaucoma on the internet and testing my own eyesight, which i know is pretty much impossible to notice unless the vision loss is serious.
All this is very irrational, I'm on drops because of a suspicious looking nerve in one eye and a baseline iop in the mid 20s, my other eye is totally normal. I've had 5 VF tests, 3 at the hospital and 2 at the opticians which were all normal, but the last one was done April 19. I've been told, that I would simply be observed rather than treated, but i'm young, so they don't want to risk further damage to the nerve, if of course the nerve isn't normal for me.
I keep telling myself that its good that they gave picked this up early and the doctors only want to help me preserve my sight, Yet I am still in a state of panic that they will find a defect in my eye and even worse, my normal eye will start to get damaged (even though they are treating it too).
How do the rest if you cope? Any advice would be greatly appreciated.
0 likes, 5 replies
Marina_Dee Dan182638
Posted
Dan,you sound very anxious and upset and I am sorry to hear that. Do you think that the Lockdown situation has had an impact on how you perceive things? ie you are overthinking and blowing them out of proportion? Are you normally an anxious person?If you think you are becoming more anxious in general then do have a word with your doctor about it.
As to your eyes, you have been treated very well, your raised pressure has been found early, your Vfs have all been normal and if you have been stable for the past 3 years and using your eye drops as directed then your results are not likely to be altered very much,if at all. stop reading about Glaucoma on the internet. You are probably imagining all the worst things that can happen.
Dan182638 Marina_Dee
Posted
Many thanks for your reply. Yes, I do think the lockdown hasn't helped and i'm still working from home. A lot of negative stuff has happened to me in the past few years, so I'm fearing the worst and of course there is plenty of time to think and read stuff on the internet.
jools2512 Dan182638
Edited
Hi Dan,
I know its normal to want to learn more about conditions we have, but it's far better to limit what you read on the internet. You are very fortunate it has been picked up so early, as for most people it is only spotted by chance when they are much older than you. I was diagnosed around 15 years ago at 40, after just being observed by my optician for a few years before referral. My pressures were very high, and I have now been through laser surgery (in the early years), and most of the drops. The care I have received has been superb. My pressures have remained higher throughout and never been anywhere near normal, but apparently I have corneas thicker than usual which affects the reading too. My advice would be to ensure you adhere to the regime of drops completely, attend your appointments and follow their advice. I get nervous every single appointment I go to in case they find a change. So far I have had no visual loss, but it is a worry for the future. Keep up the good work and try not to worry too much about things that might not happen
libralady13 Dan182638
Posted
Hope I can reassure you First of all I know what it is like to be anxious and feeling sick for appointments I had to go yesterday for the first time in over a year (apps all cancelled because of Covid), I was a nervous wreck but got through I find it good to tell the nurses and doctor they were all very kind. I know you have already been to your app so hope all went well.
Now my story similar to yours glaucoma suspect for early 40s was under Eye clinic at Moorfields for about 10 years just kept an eye on pressures sometimes as high as 29 but never any damage. So they discharged me A couple of years later at the opticians pressure were found to be high . Went back to hospital glaucoma clinic. Decided to started treatment but it caused side effects. The found on eye photos very mild changes in the left eye. Well they then took me off the drops and monitored my eyes. In the meantime I needed both cataracts done they said sometimes it does lower the the pressures although not long lasting. Well had the cataracts done went back they were lower but they decided to do laser on the left eye but it did not work. So have been on Azopt just left eye for a few years pressures around 19 to 21. On one occasion after taking steroid inhaler when they went up to 26 but returned to base line when I stopped the inhaler. So up to date I went to clinic yesterday (now live in a different area) The pressures have risen again in b oth eyes to 25 both eyes I have been changed to lanantoprost 1 drop at night both eyes to to go back in 6 weeks. The think the azopt has stopped working as otherwise the rise would only be in one eye and both affected equally I think it might be to do with stress and the anxiety tablets taken they are only supposed to affect Narrow angle glaucoma not the common type open angle but that's another Story. So I am now 73 still here eye sight is fine but do suffer from Blepharitis which is kept under control. You may well know what it is if not it it causes crusting of eyelids around the eyelashes and grittiness and sometimes blocking of oil glands. So please try not to worry Although Glaucoma does still cause blindness I think if you are seen on a regular basis and keep to your treatment you will be fine. How did you get on with your appointment.? Meant to say both my husbands brothers has glaucoma for some years they are now in their 70s and 80s.
Dan182638 libralady13
Posted
Many thanks for your reply. Visual fields were fine, in fact slightly better than the previous ones, although there is a big difference between my eyes but even my worst one isn't showing any damage. Pressures where the lowest they'd been for both eyes.
After a gonioscopy, I was then told I had Pigment Dispersion Glaucoma in both eyes, obviously totally threw me so I didn't ask any questions or know what to ask. I then got my GP letter with Pigment Dispersion Syndrome on it!
It's all a but confusing but i guess my eyes are still fine after all that time and was told I'd be seen in six months, so they can't be that concerned.