Can't take this limbo for much longer!!!!!

Hi all, Don’t even no where to begin having a terrible time at the min!! My ON is back with a vengeance, major headaches in so so much pain vision is really bad. I am on major dose of meds!! My GP doesn’t really want to no says my headaches are stress!!! Well yeah!!! My blood pressure is near enough double what it should be!! Had to have a monitor on for 24 hours yesterday! Seeing my ophthalmologist on Monday re eyes and doc on tues re BP and will prob end up on even more meds! My husband doesn’t seem to understand my family keeps saying chin up!!! But I am really struggling to see the bright side! Bought a beautiful dress for a party I am going to in two weeks but my meds make me retain water so prob won’t fit! Doc telling me to lose weight at same time! My emotions are all over the place and I feel like locking myself away from the world! The only thing keeping me going at the min is my beautiful daughter!!! Steph :frowning:

Hi Steph

Big (hugs). You sound like you’re having a terrible time of it. I’m glad you’re seeing an ophthalmologist for your ON but are you under a neurologist at all. Maybe think about seeing another GP in the practice if this ones unsupportive. Where are you on the diagnostic journey?

It can be difficult for others to understand as many of the symptoms we go through aren’t visible and I’m sure your husband is scared at the thought you may have something wrong with you. My parents are also over optimistic to the point they thing god will heal me or I need to see a herbal specialist to get cured. It’s really not what I need but I guess their hearts in the right place. So I do understand.

But if you don’t get the support you need you’re going to crack. Have you sat down with your parents and explained how you feel or your partner for that matter. Maybe they feel they’re doing the right thing by you when in actual fact they’re not. Come and speak to us on the forum - we’re not their in person but its a place you won’t get told off for going on about your symptoms and you will find understanding ears.

Do you have any you time. It sounds silly but find things that you can manage that take you away from the world of your health problems and everyone else may just help you feel more content with you. What are you passionate about? I love writing so I throw myself into that when it’s all getting too much - it’s something I can do at home even with my symptoms. And at the end I feel good because I’ve done something and I’ve forgotten about my health for a while.

What about friends? Are they supportive - can you talk to them?

I really hope you feel better. ON is horrible and it’s difficult enough battling an illness never mind feeling like you’re doing it alone.



Hi Steph

Im sorry you are having a rubbish time of it at the moment. It makes you feel really depressed doesnt it?

ON is a horrible thing to have, mine (both eyes) started April 2nd and only really came back more or less properly last Wednesday. My sight is still bad when Im tired, and I still get flashing lights in my eyes, but being able to drive again is amazing! Freedom :smiley: So, it does get better (as you know) but it is horrible when you are going through it.

Rest up when you can, look after yourself, and please remember that as people mostly cant see our symptoms, they dont understand. Its very hard when people are telling you to pull yourself together and you really cant do that. But they dont know what it is like and so they cant understand.

I really hope you feel better very soon Steph. Am thinking of you xx

Paula xx

Can an episode of ON really last that long? I am undiagnosed but have multiple blind/flashy spots in each eye near my centre of vision making it difficult to read but not so bad walking around etc. This started in June sometime with no improvement and in fact it has got worse since then. I have got other symptoms too but they get better and worse whereas this is constant. I am currently petrified my eyes will never improve or that I will go blind :frowning:

Hi 88girly

My ON started in my right eye, then 5 weeks later the left eye was affected too. My eyesight was so bad I couldnt drive for over 3 months. I have seen the optholmologist every month since April :frowning: They did say that it could come back as quickly as it went (woke up one morning with partial vision in my right eye). And thats exactly what happened. I woke up last Wednesday and realised my sight had improved massively. I too was petrified I was going blind. Scary thought isnt it.

Have you seen an optholomologist to get a diagnosis of ON? I believe they are the only ones that can diagnose it. I have an emergency eye unit very close to my home so am lucky in that respect.

Good luck and I hope it improves very soon xx

Hi all afraid to say I have been suffering with ON for 13years now. Constant in one eye and I have an attack in my other eye at least once a year!! So yeah it can last a loonnnggggg time! I am under a neuro as well who is currently trying to dx MS! I just can’t see anything positive at the min and feel like I am on a downward spiral. Not. A nice place to be at all!! Steph x

Hi Steph909, I know how you are feeling I have not been dx, but have most of the symptoms, and you feel so awful dont you!. Try and talk to your husband and family, also on here is a great support. Try keeping a diary on how you are feeling I do this not everyday, just wen I need to write my thoughts down.

Also see another GP who listens and understands where you are coming from, this can and is awful for you to deal with on your own, so seek help and support.

Take care

Jan x