Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Hello. I was recently diagnosed with Pseudotumor Cerebri after a 10 day stint in the hospital, several MRI's, 2 lumbar punctures several eye exams and a lot of infiltrated IV's. I believe that I have suffered from IIH for the past year and a half. However, even upon urging my neurologist and GP that something was definitely different....wrong, I was ignored. Over the past year, I initially began having the "whooshing" in my left ear. I would hear that sound every day and night for the next eight months non-stop. Then I felt the head pressure and eye pressure....like my head was in a vice. Usually, dizzy spells would come along with that. Then I began having seizure like symptoms including daily muscle spasms. I also suffered from memory problems and was extremely fatigued all the time. Still, my neurologist saw no need to investigate. (I was already dealing with the diagnosis of hemiplegic migraines...and still am.) Then about 4 weeks ago out of nowhere I pulled a muscle in my neck/shoulder and was taken to the ER for care. (Later I found out that the excess CSF from IIH can leak into your neck/shoulder muscles which is what causes that muscle pull sensation). Yet, again, I was rushed to the ER with extreme pain for what turned out to be the pseudotumor diagnosis. While in the hospital, I was unable to use the restroom on my own as the sensation to go was gone completely. (Temporary damage due to one of the LP's I think.) I have since gotten this sensation back. I am on 1500 mg. of Diamox a day while tapering off of a steroid medication they put me on while in the hospital. Problem is, while the pressure seems better, I feel worse than ever. I can barely get out of bed. Today just taking a shower was more than I could do as I could barely lift the wash cloth to my body. I feel like the whole left side of my body is weak and numb...which could be due to the hemiplegic migraines I have. I am only 39 y/o, I am 5'8" and weigh 190 pds. Obviously, the easiest way to reverse this disease would be to lose weight, but, if I can't even move out of bed I can't imagine this to be an easy task. Has anyone else had this problem with Diamox? I also feel like I have a Urinary Tract Infection and like my blood sugar is low all the time....anyone else have these symptoms? I am supposed to see my neuro-opthalmologist tomorrow and would appreciate any advice you have to offer. Thank you.
That being said I'm glad you are having a fantastic day as well TJ! You deserve it! It's been a long time coming.
As for the rash....well it sounds like what Bax described. I have little red spots all over. My neurologist said that he really doesn't want to stop the Diamox. So, unless these spots become really itchy and bothersome we'll try to ignore it. But...ummmm....is that safe???? LOL
Regardless, thanks for your input.
Your red spotted friend:
MonkeyMom3
Congrats on a great day. I hope that this is the start of more days of "normal" to come. You are in my prayers.
Poleary
I seem to over do it every good day, they are catch up days for me. I have a timer I set now so I don't make myself worse in the process.
Charlotte
I guess I say a perfect tap meaning yeah my pressure was where they would like to see it. Was 180 but the unexplained part is the headaches are still crazy so just wondering if the optomoligist says that the optic nerve still has fluid then would my neuro raise the diamox from 1500 that I am on now to 2000mg..just trying to figure out next options may be I am at a loss like many of us are
That sucks that you still have a headache even with normal CSF pressure. What does seeing stars mean? Has your nero had you try migraine drugs?
The reason I am going in to the hospital for a drain test is that, like you, some people still have headaches even after they get back to normal pressure range with a shunt operation. The drain test will tell me whether or not a shunt will cure my headache.
Let me know what the doc does. If you are good with pressure then not sure what benefit more diamox would be. What is the pressure they measure at you eye?
TJ
I say seeing stars basically when my head gets so bad that I get dizzy and my eyes get blurry, I will often close my eyes and then when I open them its hard to clearly see I see spots kind of like the visual field tests. I take the topomax. I have not seen the eye doc again yet but I will let you know what he says, everytime I have seen him though the optic nerve has become a little more swollen each time even with the change in medication. I agree about the diamox if the pressure is also good around the optic nerve but if its not wouldnt the diamox help that pressure also , am I understanding that right?
Good question. Yes I would think it could help if you still have pressure around your eyes. I am not really clear on the whole issue around ICP vs Lumbar CSF pressure vs what the eye doctor measures as pressure on your eye. I need to see the eye doc again as it has been 10 months. Last time my eye pressure was 18 and my LP openings have all been between 25-30. I was also taking 1500mg Diamox and have no idea what my eye pressure would have been had I not been taking the Diamox. I have asked this question and cant get a good answer.
Can anyone shed any light on this? What is the relationship between eye pressure and LP opening pressure and/or ICP?
TJ
No I don't have papilledema. My neuro says I should get tested 2 Xs per year unless I notice any visual issues then go right away. So far I am lucky with that. I have an apt tomorrow so we will see if anything has changed in the past 10 months.
When is your apt?
TJ