pains in head

[Petros-1931]

Anyone with similar problem ?

Lost much sight in right eye in June, an eye-stroke, proved not GCA from scans and blood tests at the time and two temporal biopsies three weeks ago. Out of the blue Friday morning, during breakfast several internal stabbing pains in the head, only on the left side, above the good eye.

The stabbing pain was not really a headache, as it was lingering and not lasting, with an awareness that left side of face was very slightly numb for a short while. A second less intense event after three hours. A&E made very thorough check, bloods and CT scans etc showed no brain-bleed neither anything untoward. A very light repetition at bedtime and nothing since then. Reasons remain unanswered. Anyone had a similar problem ?

Thanks, Petros

( PMR from 2011. 5mg pred, 75mg clopidogrel 2.5 bopprolol 30mg lansoprozole)

[PMRpro Ambassador]

No idea Petros - sorry to hear that.

Mind you - if you have lost vision, I don't think the problem was in the temporal arteries and while being positive is 100% certainty it is GCA, being negative doesn't mean it ISN'T GCA, it means they didn't see giant cells in the sample they had and GCA is renowned for forming skip lesions - irregular patches in the artery wall, If it were me I think I'd fancy a bit of pred "just in case" and you don't often hear me approving of "just in case" medications.

[Petros-1931 in reply to PMRpro]

Thank you PMRpro and the great advice to increase the pred., which I have now done.The consultants were very clear that the June eye-loss was an eye-stroke, but nothing about the recent pains from the A&E. I am wondering if I should try to see a neuroligist or wait for my next opthalmic appointment, mid-September.

[DorsetLady PMRGCAuk volunteer in reply to Petros-1931]

.The consultants were very clear that the June eye-loss was an eye-stroke.

My understanding is that a stroke is caused by a blocked artery, so who's to say the ophthalmic artery [the one that feeds the optic nerve] wasn't blocked by GCA cells...

Sure PMRpro will correct me if I'm on wrong track.

[PMRpro Ambassador in reply to DorsetLady]

I agree entirely. Loss of sight in GCA is exactly the same process as a stroke - interruption of blood supply to nerve cells but in a very specific position.

The medical term for eye stroke is a retinal artery occlusion,

n.neurology.org/content/75/....

says

"Central retinal artery occlusion results from internal carotid artery disease, cardioemboli, and rarely GCA."

There are other papers mentioning it.

Rare doesn't mean it doesn't happen - rare means it can happen occasionally.

So Petros - some info for your doctors that they obviously don't know,

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Thanks - knew you’d find it easier than me…

[Petros-1931 in reply to PMRpro]

Dear PMRpro and Dorset Lady,So much info available from bloods and scan, still a weighted guess to decide. They concluded the central retinal artery occlusion fitted my eye, and I hope that their decision works out. My thoughts are, should I try to see a neurologist for the pain, or wait to see if it returns, after a week on 5mg added pred.

Thank you both for your very helpful advice. Best regards, petros

[DorsetLady PMRGCAuk volunteer in reply to Petros-1931]

I would see what happens with the increased dose -then you have something to discuss with GP initially -who hopefully will suggest best specialist to consult should that be necessary.

[PMRpro Ambassador in reply to Petros-1931]

Well yes - not arguing it isn't an ROA. I'm saying it COULD be GCA that caused it.

[Petros-1931 in reply to PMRpro]

If only we knew...I appreciate your and DL's thoughts and vast knowledge in this area, sadly sometimes someone has to guess (informed decision?) and the patient has to hope.Perhaps one day there will be sufficient demand, so that funding will be given to PMR/GCA research

Thanks again to you and DL for your help today, and all days for the community.

[DorsetLady PMRGCAuk volunteer]

Hi,

No instances like that, but I'm surprised [or maybe not] that a trial of extra pred wasn't suggested.. as PMRpro says GCA cells aren't in all arteries, and those they are in they are random... so not always easy to locate.

I'd be inclined to try 10mg for a few days, a week would be enough and see if that makes any difference... if it doesn't then you can drop straight back down to 5mg, if it does the you need to pass that information on to your medical team.

[Petros-1931 in reply to DorsetLady]

DoersetLady, Thanks for your message. I have upped the pred by 5mg, now 10mg, and hopefully return to 5 at the end of the week.

Such a great site, brilliant crew of personal experience.

[PMR65 in reply to Petros-1931]

Did increasing your pedisone dose make the pain go away?

[Petros-1931 in reply to PMR65]

The pains were several sharp pains, last Friday, three occasions, not lasting. Aand E ran tests without any conclusion.

[Petros-1931]

pred added 4 days after last event.