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Papilledema
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Papilledema

I apologize for this being so long, but I am just at a loss.  I do not know what to do now.  

I have ehlers danlos syndrome, which is a connective tissue disorder.  EDS affects all the collagen in your body. I have a high pain tolerance. It takes a lot to get to me. About 6 weeks ago my eye started hurting, at the same time my nose started running. I figured okay, its a cold. So I started using my nettie pot, because I usually end up on antibiotics otherwise; my immune system *****. Well, surprisingly the salt water does not burn at all when it flushes my sinuses. I stopped using the Nettie pot and my eye just hurts worse each day. It started hurting on a Friday and by Monday I felt like there was a knife twisting in my eye.

It almost felt like my eye was going to explode, if I touched it or even closed my eye, the pressure was unbearable. It was a holiday, so the local VA was closed. I don't have insurance and am a veteran, so that is where I go. It was painful enough that I actually called the nursing line to see if it was something that I should skip work for the following day (I am a single mom of two elementary age children and need the money). They said I should go to the ER now, which unfortunately I could not afford to do. The VA ER was two hours away and I did not have the gas to go, let alone bring my kids with me.

After talking with my mother earlier in the day, she calls me back and tells me she scheduled me with a local optometrist and is paying for it. She gets freaked out about my health, always has. The doctor there diagnosis me with iritis. The drops start to make the pain bearable. I end up going to the VA later that week because the pain is still there, not nearly as bad (it was bearable), but it was suppose to be gone by then according to the optometrist.  She gives me stronger steroid drops even though it looks like there are no more white blood cells in my iris. It helps a little more, but there is still some pain.

My primary care provider runs me through a course of antibiotics because she wonders if I have a sinus infection even though the pressure points don't hurt on my face and the nettie pot didn't burn. This helps more, but again there is still some pain. A few days I after I finish the antibiotics the pain starts coming back. Its above my left eye below the brow line, on the eye (I have recently discovered this is where the trigeminal nerve is).  I go back to the eye doctor at the VA, she says it looks like I am getting pink eye now. So I get a course of antibiotic steroid drops. It helps with the pain. I can tell when I need to put the drops in. And if I am laying down and the drops go back to where the pain is, it burns like a MOFO. So when I go back for the check up I tell her that I think there is something there. I explain about the burning.

Through all this there is no redness. I have VERY minimal swelling on my eyelid. I can only tell because when I go to put my makeup on my eyelid there is difference between what I have been accustomed to for YEARS. I can not see the brow bone like I have always been able too. Plus the shadow brush hurts to lightly brush along. Anyway, the eye doctor flips my lid and cannot see anything. She sent a request for an orbital scan. It hasn't been scheduled yet.

I should mention that the side vision tests and all other vision tests have been fine, even the pressure tests. I will say that occassionally through out the day and at the end of the day my vision seems to get blurry and my eye lid wont be all the way open like the other eye. Not to mention the muscles around the brow, outer eye, and outer lower eye are painful to the touch at the end of the day. And I usually have a WONDERFUL migraine by then.  I actually wake up with a mild headache every day, the ending is just unknown with how bad.

I have gone back to the VA optometrist since then and had an MRI.  The MRI came back fine, just a very mild deviated septum.  The optometrist told me she doesn't know why my eye hurts and that I should just go to my primary care provider for pain pills.  I DONT WANT PAIN PILLS, I WANT TO SEE!!!  

I ended up seeing an ophthalmologist not at the VA, because the VA would not allow me to make an appointment with he ophthalmologists even though I had a referral.  The ophthalmologist actually dilates my eyes and looks at my optic nerves, something the VA never did.  He then ran a number of tests and diagnosed me with papilledema, then stated that I needed to be seen right away!  He calls the VA and stressed the importance of me getting treatment and provides all the tests he has done.

So I finally get to the neurologists and ophthalmologists at the VA hospitals.  The ophthalmologists tell me it's very mild, even though the other stressed it needed immediate attention.  The VA doctors felt it was no big deal.  The neurologists admitted me to the hospital for migraines and did not care about my vision or the fact the headaches once relieved started around my eye pain.

The neurologists ran a number of blood tests, a MRV and a spinal tap.  They said the blood tests came back normal, the MRV was normal and the pressure in the spinal tap was fine.  I should mention it took them four times to actually be able to fine an area between vertebrae that they could actually get through past the bone to the spinal cord.  All the other tests on the spinal fluid came back fine.

So the neurologists have released me and hope that the medication relieving my migraines will eventually ease my eye pain.  Which makes no sense to me considering what causes the headaches.  They said they ruled out the dangerous stuff.

So I still have messed up vision, swollen optic nerves, migraines, nausea, fatigue and loss of appetite.  But a med that will temporarily get rid of the migraine.
3 Comments Post a Comment
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You have a complex problem that does not lend itself to giving you helpful information. The only thing I can think of would be to see a non-VA neuro-ophthalmologist for an outside VA second opinion.  You can go to www.geteyesmart.org to find one near you
JCH MD
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It sounds like you have a very complex condition and it must be frustrating not to know the source of your sudden eye pain and other issues.

Dr. Hagan's advice to get a second opinion outside of the VA is the best.  I hope you can find someone who will take your pain seriously and try hard to find an answer.  

BTW there is a new EDS clinic and research center scheduled to open in Aug 2014 at the Greater Baltimore Medical Center.  Unfortunately it's not open now, but perhaps they will be able to help you at some point in the future (if you are in the US):

http://www.ednf.org/ednf-center-clinical-care-research

Two additional comments:

-  One of the six forms of EDS can cause vascular abnormalities.  You said you had an MRV and that it was normal.  You may want to mention to the next doctor which area of the body was scanned - and if any areas were not scanned.  Vascular problems in the neck can cause eye pain and vision problems. I don't know if they scanned the entire head and neck or just the area around your affected eye and temple.

-  Be very careful when using Neti pots.  Improper use can cause infection or even (very rarely) death if non-sterile water is used, or they are cleaned incorrectly (bacteria can grow in the pot and then it's delivered to your sinuses the next time you use it).  The salt added to the water does NOT kill bacteria or other micro-organisms in the water or pot.  Here's a helpful article w/ 3 steps to help you use the pots safely:

http://www.medicaldaily.com/3-common-neti-pot-dangers-and-how-avoid-them-258177

The FDA issued a warning in 2012 about inadequate labeling on the pot instructions, to help consumers use them more safely:

http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm316375.htm?source=govdelivery

Good luck; I hope you can find a resolution for your eye and vision problem.  And thank you for your service to our country!  
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