Papilledema but spinal pressure was 9?

Hi Brooke thanks for answering. Have you been started in diamox? If so how is it working for you? Do you have visual issues with the papilledema? I mean do your eyes feel any different?

I have not, and am honestly scared to.. i had a lumbar puncture done earlier this month and my follow up isn’t until November 6th. I assume they will prescribe me diamox then. A few months ago I was prescribed topamax for headaches and had a terrible reaction, I mean I felt like an Alzheimer’s patient, I couldn’t talk, couldn’t remember my husband or children’s names, it was awful and the effects lasted for weeks after getting off of the medication. I read that diamox is in the same family as topamax so this has me nervous but I need to just breathe and have patience.. as far as visual disturbances, I’ve had bouts of blurry vision over the past year, where my vision would get extremely blurry for a split second then return to normal, that’s what led me to the opthomologist where he found optic nerve edema.. recently it has been worse, I have a very difficult time concentrating, when there is movement to my side (cars, animals, people) I get easily startled, like it almost seems as if I jump out of my skin, not all the time but it has happened enough to catch my attention. The blurry vision occurs more frequently now.. also, I almost feel intoxicated at times, especially when driving early in the morning, I am just now realizing this is probably because of my vision issues. The neurologist told me that your eyes transmit what they are seeing to your brain, with papilledema the messages aren’t sent to your brain fast enough and can cause confusion.. 

Sounds exactly like me. I am in a dilemma my neurologist says I can't have papilledema because of my low open pressure so he sends me to a neurologist opthamologist and he said I have pseudo papilledema which is not like true papilledema. I don't think its pseudo though. My opthamologist says no it's actual papilledema. I ask about your vision because mine is crazy feeling. Things to the sides of me freak me out like you. I can also see my eyebrows at times you know what I mean? I also feel like my eyes are pressured when I open them really wide I can feel the optic nerve stretching ya know?  I too feel like I am drugged or high most all the time it's like living in a dream world nightmare. They put me on diamox before the whole pseudo papilledema thing and I wouldn't exactly be afraid. I had the normal side effects. Tingling in hands and feet and soda tasted awful. The 4th day I got the weirdest feeling like my head was being pulled down by a force of gravity my ears started to ring and headache worse. So I stopped. But I believe this is because it lowers your fluid and mine was already low. I am now thinking mabe I have a leak. I'm so confused. They prescribed me topamax but I won't take it because I know I don't have migraine and I already feel dopey. If you are in true high pressure the diamox will help. If it's not high pressure it will worsen your symptoms. I have a question everyone I read about with iih after their lp they said their symptoms were so much better ( I guess because they removed fluid?) anyway they had to draw mine off to test it for infections even tho I had a low pressure . I felt awful dizzy and just awful after. That also confused me because most people get relief . Did you?

Yes, my eye sockets often hurt, it’s awful! Honestly so glad I’m not the only one who feels “dopey”! Regarding the Lp, I had had a terrible headache the morning I went in, I mean awful!  I had to cover my eyes to hide from the lights as I was having the procedure. However my headache and eye sensitivity was relieved during the procedure. They had me lie flat in the hospital for 4 hours after the procedure before I could leave. Once I got to the car I had the worst headache of my life that slowly got worse over the course of a few days, I barely stood up for anything as rising brought the headache on.. it was awful! My neurologist dismissed my symptoms before I saw the opthomologist. The opthomologist is the one who requested for the neurologist to do the lp, he didn’t even seem to deem it necessary even after being aware that the opthomologist found swollen optic nerves.. it is exhausting! I recently contacted a new neurologist, as I didn’t feel I was in caring hands with the other one, maybe you should do the same! Get a second opinion.. I just recently saw the other neurologist and he immediately thought it was iih before having the results of the lp, he’s the one who told me you can have ih/pseudotumor cerebri without high opening pressure. 

Yes I am being referred to a different neurologist but you know how long that takes. I am in misery. All of my symptoms just came on one day and I have been like this 7 months. I find it hard to keep up with conversations it's just exhausting trying to think. All of my doctors think I'm crazy and have anxiety. I really hope this doc will do something for me.  I hope you find your answers. Yes papilledema is a emergency and requires a emergency MRI. Keep me updated when you go to the doc and start the diamox. You can private me if you want just click the envelope beside my name

sending you a message now!

Hey Brooke13,

I has a brain aneurysm end of 2015 after my opening pressure was 36.... then had the angiogram done to stint the 8mm aneurysm. Fast forward to now 2018 and I have had 5 total spinal taps in the last 2 years. My pressure always being 19 or higher.... My Neurosurgeon had me see a shunt specialist for possible diagnosis of Psuedotumor Cerebri, but the specialist said I didn't qualify for a shunt because my pressure "was only" 19. I feel exactly like yall every single day and right now I am sitting at 10 days severe headache with all the normal symptoms. But because I have state insurance the doctors treat me bad, discount my care and will not diagnose me with a pseudotumor cerebri. So I lay here and suffer every single day because of my insurance. So I don't know what to do and when I saw that your spinal tap had an opening pressure 15 and they diagnose you with the pseudotumor cerebri how about fell off the couch. You would think I would be diagnosed with that by now since I've had over 19 opening pressure all the way up to 36. Do you think it's my insurance because it sounds to me like I have this and I've done my research and it's the only thing it can be. I went in to see pain management about a month ago to see about getting a nerve block for the back of my neck because it hurts so bad near the occipital nerve and the pain management doctor didn't want to give me the shot because he was scared my insurance wouldn't pay him in full and my husband had to force him to give me the shot and tell him we would pay out of our own pocket. So I was just wondering what they saw in you other than your spinal tap that got you your diagnosis of pseudotumor cerebri. And I'm sorry that you have this and I know how bad you feel just wondering if you could share some insight. God bless

I'm so sorry you are going through this. Did they happen to tell you what your opening pressure was? My optic nerves are swollen also. My scans are normal also. I really am suspecting I have a spinal fluid leak. Diagnoses for that is tough. I am currently switching neurologist so I don't yet have an appointment my last neurologist was a quack and summed it all up to anxiety. 

My pressure was 25 but I'm going to search for other options because I know he's going to give me that medicine and I don't want to have to deal with that but my primary doctor told me I had anxiety but I'm not going for that it has to be something they can do for us. It's like some people don't care cause it's not them

Yes I know. My problem is I look very healthy I can walk talk etc... but the way I feel is different and so hard to explain. They also tried to diagnoses me with incranial hypertension but with a opening pressure of 9 I don't think this is the problem I also am not overweight. Diamox made me worse . Lp made me worse. I also found out that my MRI showed a chiari malformation. They also wanted to diagnoses migraine but who has symptoms 24/7 with migraines? I never feel normal not for one minute. I wish you the best on your next dr appointment and hope you get answers

Yes they told me I had that to SMH well thank you for feed back and I wish the same for you as well my dear we will fight this so that we can have our normal life again😇