I was diagnosed with Pseudotumor Cerebri May 31, 2009. I first had 3 spinal taps and it went undercontrol and I had some vision loss in my left eye and I've learned to deal with it. My doctor that was treating me tapered me back off my dose of Diamox in March of 2010. This september I got the same stabbing headache again and it was back. I haven't had any vision loss this time but all in all I've now had 9 spinal taps and I now take 1500 mgs of Diamox a day with 75 mgs of Topamax a day. Subsequently I have migraines that come and go between that also require ER visits to be kicked. My new Pseudotumor Cerebri doctor is great but his opinion is that I need a shunt and that my secondary migraines are caused by pressure that just doesn't cause optic nerve swelling. My migraine specialist isn't quite so sold on that theory, and he wants me to get a second opnion on Pseudotumor. So with this I guess I'm looking for names of specialist that may have seen multiples of people like me. I know I'm rare, and even for it to have occured again makes me even more special. Thoughts on the shunt?
Hi! I was reading your question and I could not believe that you sound just like me. I was diagnosed 1 year ago and have had a lot of problems. I have had 8 LPs done this year. I am on Diamox but it does not help. All it does is lower my potassium. I do not understand why you said it was not normal for it to reoccur. Are you saying pseudotumor does not usually return? My doctor has told me that there is no cure and that most people have it till they die. Some may get better but not many. Recently, I have been told I need a shunt but I do not want to go down that road. I am losing my vision so I may have an Optic Nerve Festration down to help with the vision loss.
Is the ER giving you a hard time for going to the ER for pain management? Mine is giving me hell. The ER doctor has told me the ER is for life threatening medical issues. Mine is not life threatening and I am taking up room. I need to go to the office and not the ER. They tell me that there is no reason for me to come in for pain meds. I need to go home. I am not going there for pain meds only I am going there for a LP as well. I know how you feel. If I can help please let me know.
Hi Tinker bell.
I noticed your post and that the previous ones are a bit old.
I have been sick for 4 years now, have a VP shunt and back on Diamox,again.
If you want to chat about this, why not message me?
Seems we may have a lot in common. Cath278
I was diagnosed with psudo tumor in early 2010 after I got health insurance and went to get my vision checked at first they thought it was MS untill they did a MRI. I was 39 years old. I had 3 lp's and the first one I had done the opening pressure was so high my brother said the neurologists looked at each other like "how is this person still functioning and not in a coma". The only signs I had that anything was wrong was a migraine that lasted for 3 months then a blind spot in my central line of vision for my left eye after the double vision went away. I was sent to a Neuro Opthamologist who looked at my eyes and told me that to save my vision I needed a shunt. My neurologist put me on diamox as well but I had to many side effects like pins and needles in my legs so they took me off of it. The funny thing is when I was finally diagnosed I wasn't having headaches or any other sign other than dizzyness and forgetfullness. I waited 6 years before I was seen I was told had I gone in when I first started having headaches and double vision they could have saved my eye sight as it is now because of the csf pressure the nerves in my left eye are dead now.
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