PrettyIll

Header Right

Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

Reply To: palpilledema anyone? Also does anyones eye pressures test high first when they first get checked? then go down the longer they sit in the Dr Office?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Vision › palpilledema anyone? Also does anyones eye pressures test high first when they first get checked? then go down the longer they sit in the Dr Office? › Reply To: palpilledema anyone? Also does anyones eye pressures test high first when they first get checked? then go down the longer they sit in the Dr Office?

May 16, 2012 at 2:40 am #2167
whatsreallygoingon
Participant

I have had papilledema since 2002. But since my lumbar punctures have shown normal pressure, they don’t believe I have high intra-cranial pressure. Thanks to the Driscoll Theory, I understand that the pressure may be mildly elevated, but not show up on lumbar puncture. So I very likely would benefit from Diamox…once I find a doctor to prescribe it. But currently, I can’t even get an rx for a pain medicine.

Hon, if you have papilledema (or “pseudo-tumor cerebri” as we call it), and the doctor DOESN’T prescribe Diamox, said doctor had better have a VERY GOOD explanation as to why the HECK you are not on that medication. And if they DO have a very good explanation (let’s just say a BAD allergy to sulpha meds, for example), they need to tell you what they are going to do to treat it. This is NOT something to ignore, Hon. Eye doctors usually treat pseudo-tumor cerebri with Diamox, and don’t even NEED an LP to do so. Heavens. My friend, if you need to see another eye doctor, PLEASE DO SO. K? Promise? Big hug, Diana

Dr D,
I was on diamox briefly thru my pregnancy they quickly took me off because it was not tested on pregnant women (at that point anyways) they put me on topamax 8 years ago and have been on it ever since.