I have the same exact issues....SO unbearable. It is bitter-sweet to know that other people out there are experiencing what I am. I get so frustrated and pained it brings me to tears.
I have been getting the headache/eye ache pains about every two weeks or so. I started with my opthamologist who said everything was a-okay (I had retinal surgery with a scleral buckle in 2001), finally pushed my primary to do something so a CT was ordered and a mucousal cyst was found in my sinus...HOWEVER, the Ear/Nose/Throat specialist said they would not be causing the pain and that nothing else looked concerning, so my next steps are to see a neurologist, get allergy tested, and see a chiropractor/medical massage therapist (I'm very picky about the chiropractor I see though). I will not take the 'ol "oh it must be migraines...let's get you some heavy duty pain medication" answer. There has to be some cause or some more natural/preventative way to reduce the pain or to fix the source.
Thanks for sharing. And i thank the Doc that commented as well.
Thank you so much for reply. I have made app with my dr. today and will have a disscusion with him regarding better care. Your reply has given me the jump start I needed. I post any news. Again, thank you. cath278.
I would see a second opinion from a rheumatologist. they are the experts at handling GCA. (giant cell arteritis or temporal arteritis) You also deserve a little more sympathy.
This is one of the best references available: paste the link in your internet browser
http://www.emedicine.com/emerg/topic568.htm
JCH III MD
I am a fortysix yr old woman and was recentlly diagnosed with Giant cell. I also have cataracts in both eyes.(prior to treatment). I started off with 60 mgs of Prednisolone daily for two months but when ever I get below 40mgs symptoms return. My dr. makes me feel Im not trying hard enought to cope and should put up with the pain as apposed to the side effects of the steroids.Also, why do my eyes hurt so much? Finding it very hard to get help and imformation. Luckly, found this site last night. Hope you can help in any way. Regards, cath278.
You do need a examination ASAP by a MD ophtahlmologist physician. Any "terrible pains" calls for an explanation. When you go in tell them you are worried also about the possibiity of orbital pseudotumor, orbital and sinus disease, and scleritis. If you are over 40 a rare cause but one that should be considered is giant cell arteritis.
Your work-up by an ophthalmologist should include visual fields, assessment for "bug eyes" exophthalmos, a MRI of the head and orbits should be considered strongly, blood work to exclude thyroid disease and a Sedimentation Rate and C-Reactive Protein should be drawn.
If you live in a large metropolitcan area seeing an oculoplast surgeon might add some additional expertise. Mild HBP would not cause this.
I'm concerned for you. Please get this properaly evaluated. You can go to www.aao.org to find a Eye MD near you. If you want print this page off and take it in to show the Eye MD and tell him/her this is from the official American Academy of Ophthalmology Website at www.MedHelp.org
John C. Hagan III MD FACS, FAAO