A half year ago (one week after hip surgery) on wake-up I discovered that I could see badly with my left eye. Initially, only the lower-half of my visual field was covered by a kind-of dense mist. After one week the dense mist spread out to the whole visual field of my left eye.
This was diagnosed by a neurologist and a neuro-ophthalmologist as a NAION (non-arteritic anterior ischemic optic neuropathy) after many medical tests (CT, MRI, OCT, blood tests, lumbal punction).
Initially, this was painless.
After a few months however I got episodes of eye-pain in my left eye.
Nowadays, I have this eye-pain daily. Normally, when I wake-up I have no pain. Then after a few hours of being upright (walking or sitting), pain in and around my left eye develops. It feels like increased pressure of my eye itself or against my eye.
This eye-pain may spread to a strong left-sided headache around and behind my eye, up-to the top-left-front of my head.
This eye-pain (and headache) does not disappear out of itself. The only thing which helps is lying down. The eye-pain then disappears after a few minutes up-to one hour (dependant on how long I kept going with my eye-pain and waited before lying then).
Sadly, the neurologist and a neuro-ophthalmologist who examined me, have no explanation for this eye-pain and have no solution at all.
Having daily eye-pain is no fun, so now I hope to find an explanation and possible solutions here.
I am a male, live in the Netherlands and I am 47 years old (so relative young for a NAION).
To prevent a NAION from occurring again (in my still good right-eye), I use the following medicines:
a) Carbaspirin Calcium (Carbasalate Calcium) 100 mg (daily)
b) Persantin (Dipyridamole) 200 mg (twice daily)
c) Fluvastatin 80 mg (daily)
Now I had this eye-pain already a few months BEFORE I started with Persantin and Fluvastatin. So the eye-pain is not a direct effect of using these two medicines.
However, when you start with Persantin, many patients (including me) get a head-ache. This medicine-induced headache disappears (also with me) after one or two weeks of using this medicine. Now for the interesting aspect: during these two weeks when my body still needed to get used to the medicine and I got daily (both-sided) headache, I also had an increased-pressure kind-of pain in both eyes. After two weeks the general headache and the general eye-pain in both eyes disappeared (but of course, the left-sided eye-pain and headache remained).
Normally, during the night and when I wake-up I do not have eye-pain. That only comes after a few hours being upright (walking, sitting).
But when I have a cold, and my nose is congested, I often also have eye-pain during the night and during wake-up.
Probably due to the hip surgery (since then, my operated leg is now 1 inch shorter then my other leg) I have also regularly neck-pain.
It seems that when my neck-pain gets more severe, I get eye-pain in my left eye faster and more severe.
As you can see, I am trying to discover patterns and try to find out what triggers my eye-pain, in the hope that this may give clues to the medical cause of the eye-pain and possible solutions.
Some suggestions you can run by your team: the two catagories of your problem are "arteritic" (temporal arteritis also known as giant cell arteritis) and non-arteritic. You're is behaving like an arteritic. Although it has been classically tought that it does not occur at age 55 or less I have a biopsy proven case of a man in his 40's. So consideration might be given to a temporal artery biopsy on that side. Also MRI of sinus and orbit to rule on orbital inflammatory disease.
As far as pain relief referral to a pain clinic; trial of neurontin; trial of accupuncture might be tried.
Last week I have been to the neuro-ophthalmologist.
Just like the other specialists before, she had no explanation for my eye pain (and neck pain).
So I explained that I posted my eye-pain question on this forum and that you suggested that it could be giant cell arthritis (resulting in A-AION). Given negative results of blood tests for (among others) CRP that were done twice in the past (CRP < 1), she currently does not find it likely. Nevertheless, she ordered new blood-tests, the results of which will be discussed on my next visit over 6 weeks. No biopsy is planned yet.
I forgot to mention your other suggestion, orbital inflammatory disease, so I will send your complete answer to the neuro-ophthalmologist by mail and discuss it during my next visit.
I did find one other eye disorder in the medical literature that results in eye-pain that increases on being upright and decreases when lying down and that is ocular ischemic syndrome (OIS). No idea how likely or unlikely this is. Also something to discuss during my next visit.
About pain relief, I do indeed think about acupuncture, but find it difficult to find out which acupuncturist provides quality. It is considered to be alternative medicine in the Netherlands, so this profession is not protected or regulated.
I am so happy you say that you have found some one who's not over 50... I am 46 (woman, in Sweden) and had the biopsy - though they had a really hard time getting anything, the pulse was gone. Anyhow, to hear that GCA can be the correct diagnos even if the age doesn't "fit", makes me a little more at ease.
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