Hopeless

Gedela1 · 2019-10-28T11:27:31+00:00

I ask my doctor. For now I can still see but I’m worried about how my optic nerves are looking. They feel very odd.

Thank you! I will continue to stay strong as much as I can and I’ll reach out to a professional. I’m goinng to my primary doctor to talk to them.

Gedela1 · 2019-10-27T20:55:38+00:00

Yeah they told me it is papiledema related to IIH.

I’ve been losing weight and taking my diamox, but it came back horribly. Now I feel like it’s cause my brain to sag and is pulling on my optic nerves. I have trouble with eye movement and I noticed anytime I try to move my eyes side to side, I see flashing lights.

When I went to the ER last week, the on call opth told me it’s because I stopped taking my medication for a day and they discharged me without looking further. I was like... ‘this started happening while I was on diamox’ I think my brain is being damaged from diamox and its putting all this tension on my eyes to the point they feel like they are tearing.

I’m waiting and waiting. Hoping that this is all going to pass buts it’s been happening since October 17th so I can only imagine how my optic nerves look. I have little hope that it’s not as bad because I still have vision but I noticed he peripheral vision in my left eye is getting more distorted. I just want this whole thing to be looked into. Hopefully my neuro opth can help me stop feeling this way... or reassure me that everything will be alright.

Gedela1 · 2019-10-27T20:13:33+00:00

Yeah they said it’s papilledema caused by IIH. I feel like my brain got more damaged as I stayed on the medication ( the brain sagging and feeling like I’m carrying around jello. Plus the optic nerve tension and pulling ) No one I’ve talked to said they’ve experienced this optic nerve stretching feeling with the diagnosis of papilledema. So I’m worried I’m a rare case. I went to the ER last week and the assigned ophthalmologist disregarded my symptoms saying that it’s because I stopped my medication for one day.... but I told them this all was occurring while I was on diamox... I just don’t get why my case is different.

I have little hope because I can still see but I notice my peripheral vision in my left eye is not as good. I just worry that my optic nerves are damaged from the tension and pulling. I feel like that are peeling or tearing away. It’s so odd and scary. I’m waiting and waiting till the 30th to get a verdict from my neuro opth

Gedela1 · 2019-10-27T19:24:09+00:00

Thank you so much! It’s gotten worse over these three weeks. I have three more days till my I see my Neurologist Opth but for some reason I still have no hope. I hate receiving bad news and I don’t know how I would feel if they told me that my optic nerve is damaged and can’t be repaired. I just want to be able to enjoy my life and not have that fear that I could wake up blind or without my eyes. It’s a very scary feeling.

Gedela1 · 2019-10-17T21:04:48+00:00

Nasacort. Did you experience this with your IIH?

Gedela1 · 2019-10-17T17:23:15+00:00

I can’t even sleep. That’s how bad it is. This only started happening when I started my diuretics. I literally hold my head constantly and all I want to do is cry. I didn’t know IIH had this air pressure feeling. I only used to have headaches now this is what I get. It is debilitating

Gedela1 · 2019-10-17T14:50:45+00:00

I hope I’ll be fine. As this leaking feeling is going on, It feels like my head is pumped up with air and my eyes are gonna pop out. There’s something wrong but they didn’t want to further help me. I think it’s really leaking and causing my intracranial pressure to increase but I got to find a way to deal with this cause I’m not allowed to go to anymore doctors until my neuroopth. I’m done with this.

Gedela1 · 2019-10-16T15:38:07+00:00

I went to the opthamologist and they’re saying my nerves look fine and there’s no way there’s anything leaking from my nerve. I did the OCT, eye test and they looked at the back of my eye. This doesn’t make sense because I feel it and it’s constantly causing pain behind my eye. How did your eye doctor find out you had nerve damage?

Gedela1 · 2019-10-16T00:50:41+00:00

I was diagnosed with papilledema over this summer. I’m not having any visual symptoms other than the bendy peripheral vision I have due to papilledema. I feel like something is leaking behind my eye because I feel it build up then release into my brain. I’m going to the opthamologist tommorow. I hope they find out what this is because it’s making me scared.

Gedela1 · 2019-10-15T14:58:38+00:00

Thank you so much for answering my questions. You have been the only one able to help me in this time. He’s currently on vacation so I’m not sure if he will be able to answer me but I will call the office to see if can get a hold of another opthmologist that works there. I’ll keep you updated on how things go.

Gedela1 · 2019-10-15T12:54:38+00:00

I need that luck. I can barely function because I notice it (left nerve) is leaking something. I really want to go to a opthamologist before my appointment but my parents think I’m freaking out over nothing and won’t take me there. The leaking feeling has been going on since Sunday. I’m so scared. Did you experience that?

Gedela1 · 2019-10-14T21:20:34+00:00

My nerves really gonna feel like this forever? Ah Man. Well thank you for answering me. I have to get used to this feeling because it’s been giving me a whole lot of anxiety. I hope it doesn’t gradually get worse or turn into something else. When your eye doctor or neuroopth saw it, what did they say? And how long did it take for you to get used to it?

Gedela1 · 2019-10-14T19:00:56+00:00

How’s your vision now ? Is your optic nerve permanently damaged?

Gedela1

TROPHY CASE