Orbital Pseudotumor - What a nightmare!

I've had a medical nightmare getting diagnosed w/ orbital pseudotumor.  Guess because it's so rare.  FINALLY ended up w/ neuro optho - all doc's seem to discount the excrutiating pain I've been in for 9 weeks!  Been to COUNTLESS doctors and ER's.  This thing is ruining my life.  

Compounding problem - I was diagnosed last March w/ overactive thyroid - so the eye specialists say I have the onset of Grave's eye disease - which is what as aggravated/erupted this pseudotumor.  

In reading comments on this forum - I see I don't have as much inflammation/swelling as some others.  I cannot imagine the pain of it being worse!  I feel doc's don't believe my pain because my mri was "unremarkable".

I've been prescribed Neuronton - non-narcotic pain pills (also given to people w/ shingles).  Anyway, I wanted to share that w/ readers as it may help you w/ the pain.  I've been on about 5 days - MAYBE noticing a difference - but when your in so much pain - any little bit helps.  I'm still eating vicadin - but am almost out - and worried sick doc won't give me any.  Especially since the vicadin I had was from a back injury a couple of years ago - and not even given to me by doc's I'm currently treating with.

Also, I'm on steroids - started w/ 60 mg. for 1 week - then 40 for 1 week - and today I'm to taper to 35 mg. for a week - BUT all my research indicates a 3 month course !!  Doctors really don't want me having any!  All doc's are contradicting what my research indicates.  Saying how bad steroids are for you.  Well DUH!  BUT it's the only thing that will keep the inflammation (which is what causes the unbearable pain) away!  So I want to take them for that - even though I can't sleep and my heart races every minute like I'm having a heart attack and am an emotional wreck!  It's still better than the pain...

So - I've rambled enough about this horrible nightmarish thing.

Are there any hints, treatments, anything that has helped anyone on this forum?

Thank you, Ronda

[John C Hagan III, MD, FACS, FAAO]

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