GCA and double vision

Hi all

I have been following this forum for over 2 years now and have found it to be excellent. This is my first post and I am hoping someone can help.

I was diagnosed with suspected GCA in November 2013. Temporal Artery biopsy was negative but I had been on Pred for 3 weeks by then. I have subsequently been diagnosed with secondary breast cancer and have been receiving chemotherapy for the last 6 months. All was going very smoothly until one morning 10 days ago when, out of the blue, I woke up with double vision (both eyes) which is still present. I cannot drive and wear an eye patch ( so look like a pirate). A CT Scan suggests the cancer is not the problem.

Until now I have had no GCA symptoms since last autumn and had tapered Pred down to 1mg. However, as well as the double vision, I now have a headache round my right eye which is making it very difficult to sleep despite taking Paracetamol. I have been taking Pred again for a week (60 mg for 4 days and now 40mg) but my symptoms are still present. I see my oncologist tomorrow for the result of an MRI scan, but am wondering if GCA could be the cause of my current problems.

I would be grateful if anyone has any experience of whether GCA could cause double vision and headache for 10 days.

Thank you all

[HeronNS]

I don't know the answer to your specific question, although it seems likely the answer could be yes. However I do know that the symptoms warrant a trip to the emergency department. Better a false alarm than loss of sight. GCA is treated as a medical emergency as serious as a stroke or heart attack.

I do hope you find a way through these difficult health problems. Let us know how you get on. 💕

[Hidden in reply to HeronNS]

Thank you, HeronNS. I certainly realise the risk to my sight but am taking 40 mg Pred. Maybe I should increase it back to 60 mg. I will ask tomorrow. I have no other GCA symptoms eg blurred vision or jaw claudication, and in fact I am feeling well apart from looking forward to a good night's sleep.

Will let you know what transpires

[Celtic PMRGCAuk volunteer]

Sandra, GCA can certainly flare causing double vision and long-term headache but, whatever the cause, do go straight to A&E and get that double vision and head pain investigated immediately.

[markbenjamin57]

Sandra, so sorry to hear about your problems.

From all that I've read here about GCA symptoms, I agree with the other responders: get yourself down to A&E, with the help of your nearest and dearest if necessary. It sounds like you need a lot of looking after right now, and you might have to take the lead in terms of explaining the possibility of GCA to your specialist. Just push, push, push!

[DorsetLady PMRGCAuk volunteer]

Sandra,

Totally agree with others, please get yourself checked ASAP. You cannot afford to wait and see (sorry no pun intended) - hopefully it could be a false alarm, but best to check. Been there, not good ......

[knit1purl2]

Sandra, I had double vision, which was eventually diagnosed as 3rd nerve palsy and, yes, wore a patch and looked like a pirate. This condition can last up to 3 months. And, almost to the day, three months later, it cleared up. Hubby drove "Miss Daisy" during that time. Before the double vision, I had the TMJ, following week the "jackhammer" of a headache. Neuro thought I had an aneurysm and sent me right to hospital. They thought I had mystenia gravis. Was not diagnosed until another month when I was referred to a Neuro-opthmalogist at Wills Eye Hospital in Philadelphia. He ruled out mystenia with a blood test and scheduled the TAB, which confirmed the GCA. He did tell me that I was fortunate I was referred to him with the double vision as he usually does not see patients until after they have lost sight in an eye.

[PMRpro Ambassador]

It could - these are typical early signs and can precede other symptoms by even weeks. It is definitely something to get checked out by someone.

[pilgarlick]

Sandra Hi. I had all the symptoms of what I now know to be GCA for months without being particularly troubled - regular headaches and a sensitive (bald) scalp. It wasn't until, on a day when I had a particularly bad headache, that I experienced double vision. The images were displaced sometimes horizontally and sometimes vertically. I went to the local eye hospital who checked my eyes thoroughly and could find nothing wrong but diagnosed GCA as the most likely cause and put me on 60mg of pred. immediately. I am so grateful for their prompt and sensible action as it may well have saved my eyesight. A year later I am down to 10mg and have not have any further optical disturbances since the diagnosis.

[Hidden]

Thank you all for your help and support. My consultant has ruled a flare up of GCA. He thinks the double vision is due to a slight impedance of one of the nerves controlling the eye muscle., and will treat it with a single dose of radiotherapy. So we are getting there.

[Hidden in reply to Hidden]

Radio therapy? can you elaborate how that went?

[Hidden in reply to Hidden]

I just checked some stuff, and I fit all the symptoms of Myasthenia gravis, Class I. In about two-thirds of individuals, the initial symptom of MG is related to the muscles around the eye.[9] There may be eyelid drooping (ptosis due to weakness of levator palpebrae superioris)[12] and double vision (diplopia,[9] due to weakness of the extraocular muscles).[10] Eye symptoms tend to get worse when watching television, reading, or driving, particularly in bright conditions.[9] Consequently, some affected individuals choose to wear sunglasses.[9] The term "ocular myasthenia gravis" describes a subtype of MG where muscle weakness is confined to the eyes, i.e. extraocular muscles, levator palpebrae superioris, and orbicularis oculi.[12] Typically, this subtype evolves into generalized MG, usually after a few years.[12]

That's me. Sound like any cases anyone knows of?

[kamille in reply to Hidden]

great information, thank you