I have the same problem. 2 years ago I was dx with pseudotumor cerebri after being admitted to the hospital for 3 days for severe headaches. I was feeling like crap my head was hurting like I was being stabbed with a huge knife the pain was so bad I was vomiting.they did the whole workup mri ct scans lumbar puncture blood work... My radiology reports and blood work were all clean according to my neurologist my lp came back with 2 oligoclonal bands otherwise normal slightly elevated pressure.i was sent to opthamology in the am to find severe pappilledema billaterally however no vision loss im still 20/20 and viual fields were acceptable.neuro put me on diamox which made me super sick... She dx me with pseudotumor and has since changed my med to topamax as a prophalactic to help prevent the headaches.it doesnt do a whole lot.but neither does anything else and I just cant stomach as you go pain killers.my head hurts daily with infrequent breaks of non painful days..i have frequent numbness and tingling in my feet and calves sometimes as far up as my knees if I have been on my feet all day and in my right hand.i have difficulty grasping simple words and concepts to extract from my thoughts and pull forward at times its so frustrating as im not slow or even short on ways to express my thoughts.ive always been a bit boisterous,obnoxious even in my intelligence. The pains travel at times from my head like an electrical shock wave through my shoulders and arms and even down my spine if I bend my head forward. The psuedotumor cerebri the headaches the papilledema none of this is getting better yet I was told it would! Things seem to be declining and at a rather rapid rate at times.sometimes I feel like a dolt with parkinsons like I cant even pick up a glass of water without sloshing every drop on myself and my floor before it reaches my mouth..like I cant brush my daughters hair with out jerking out every strand on her poor little head and I dont have the strength even to ponytail it! Its frustrating and embarassing.i dont go in public much I dont enjoy stares or kids asking their parents whats wrong with me.im 29 and feel 79.i hate that my body jerks and twitches violently and uncontrollably and I hate even more that theres so much tingly numbness like I fell asleep in places that shouldnt be sleeping!i havent had another mri or ct or lp since my hospital admission.apparently my neuro doesnt deem it important..just follow ups in her office to talk.. Wants to send me to the neurosurgeon to discuss shunts..(uhhh NO effin thanks lady!) And back to the opthamologist to check the papilledema...WHICH since my vision is a-okay they put in my chart that the papilledema is the baseline for ME not to look for further cause or concern since its been monitored for 2 years with no vision loss or change... Sooo I guess long story short..i should be happy??? Wth?
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.
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!
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.
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