After your response I googled you (thank you world wide web) and came upon many of your case studies..i may be researching too much but should I bring up nmo (devics disease) to my neuro to have it ruled out?she hasnt ruled out ms..(cant and wont due to the og bands in my csf continually and absent from my serum) and I am negative for the herpes viruses that tend to bring forth og bands and cause encephalitis with no other diseases and all immunizations up to date.( and then some, when I was active duty I was innocculated for some nasty stuff like anthrax and the like)..but original question should I keep digging and asking for answers or accept what I feel is an incorrect dx? I just dont want to be that lady on your table brain dead b/c it was too little too late.
Just had a vf and dialated exam on my eyes 3 weeks ago and my vision is okay they said.except when im in in pain and see spots zig zags or nothing at all..frequently my headaches begin behind or around my eyes and this affects my vision greatly during a painful episode.especially if I move my eyes. Again I state the opthamolagist put in my charts to baseline the papilledema for me...is papilledema EVER normal? For anyone? I also understand this dx commonly is based upon being overweight, and yes I AM overweight.i am 5'10 and 224 lbs.my bmi is 22. My whole life I have been overweight but not out of shape if this makes sense? I have no other problems such as high blood pressure diabetes bad cholesterols and all of my blood workups are good if sometimes on the low side of things at times still in normal ranges always.the og bands found in my spinal are NOT in my serum. I have been having these problems for over 9 uears even though ive only had treatment for it and a dx for 2 years.thank u for your reply im not agreeing with whats going on and feel things should be reevealuated.ive also taken and have an rx for amitript. And it doesnt help at all.even when I take it at first sign.(initial dx was migraine headaches) I dont take it because of its ineffectiveness for me personally and all of the risks associated with use,i just dont use it.i take topamax 150mg 2x daily and I also take prozac 10 mg once in the am.(i am a combat veteran with ptsd as well and I choose therapies and activities at the va the manage my symptoms mostly) I dont like to take too much medicine as my stomach is rather sensitive..omeprazole is my best friend. Thank you for taking time to read my post and offer advice somedays I dont know what to do or how to do it!
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
Without the ability to obtain a history from you and examine you, I can not comment on a formal diagnosis or treatment plan for your symptoms. However, I will try to provide you with some information regarding this matter.
Pseudotumor, as it name implies, is a non-neoplastic (non-tumor) process that produces signs of an orbital tumor, e.g., proptosis (bulging of the eye) and/or papilledema (optic disc swelling) and/or ocular muscle palsy. It is also known as idiopathic intracranial hypertension. It is usually unilateral and the cause is usually not known. The papilledema, if left untreated, does represent a risk for permanent visual acuity reduction from atrophy of the optic nerve. Because of this, it is recommended to have visual acuity testing performed at regular intervals. This can be done with a local optometrist. Clinical signs include headaches, nausea, vomiting, vision deficits, decreased eye movements, and worse with coughing or sneezing. It is diagnosed by having a brain scan to rule out other causes and a lumbar puncture (spinal tap) to measure the pressure of the fluid surrounding the spinal cord and brain. Treatment options include lumbar puncture (which may be done serially) to relieve the pressure surrounding the spinal cord and brain. This option may be repeated. Another option includes the medicine acetazolamide (diamox), which you mentioned. In severe cases, ocular surgery (optic nerve sheath fenestration) or shunting may be required. It may be worthwhile to hear what the neurosurgeon suggests or thinks.
Regarding your headaches, attention, and frustrations, you should speak to your PCP about this. You may need to have your eyes re-examined if you have not done so recently. Also, you may need to begin or change your headache medications. Some medications that have been used for headaches associated with pseudotumor cerebri include amitriptyline.
Thank you for using the forum, I hope you find this information useful, good luck.