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...
Hi Everyone,
I'm back to teaching full time, and haven't been very good at keeping in touch on here, but my IH is always there to remind me of this amazing group of people. So I've been back into the full swing of school, and dealing the best I can, with lots of naps, ice packs, and tears. Low and behold I have a new fun symptom that has stumped the neuro-optho and neuro. I have been feeling like my right eye is swelling (I describe it like my eye gets little), most people don't notice unless I tell them then they see the difference. I've been trying to ignore this fun new thing, and attributing it to IH, Until Monday when my right pupil became dilated and my left was normal. This sent the my friends I work with into a panic, and I called my neuro and nuero op. I had a full eye test Monday night with an opthomologist and he found no swelling behind me eye, and couldn't explain the swelling or pupil size. Since I have high pressure symptoms my nuero had me go to the ER and wanted a cat scan and an LP.
I got the run around at the ER ...they were actually quite rude they finally did a ct scan which came back normal...which is a huge relief and then decided that they weren't going to do a spinal tap. So I'm home with "little eye" and a dilated pupil and still no idea why??
So after I ranted for so long...has anyone had anything similar? Or is just, just another fun side effect!
Hope all are well,
Nicole T
I'm back to teaching full time, and haven't been very good at keeping in touch on here, but my IH is always there to remind me of this amazing group of people. So I've been back into the full swing of school, and dealing the best I can, with lots of naps, ice packs, and tears. Low and behold I have a new fun symptom that has stumped the neuro-optho and neuro. I have been feeling like my right eye is swelling (I describe it like my eye gets little), most people don't notice unless I tell them then they see the difference. I've been trying to ignore this fun new thing, and attributing it to IH, Until Monday when my right pupil became dilated and my left was normal. This sent the my friends I work with into a panic, and I called my neuro and nuero op. I had a full eye test Monday night with an opthomologist and he found no swelling behind me eye, and couldn't explain the swelling or pupil size. Since I have high pressure symptoms my nuero had me go to the ER and wanted a cat scan and an LP.
I got the run around at the ER ...they were actually quite rude they finally did a ct scan which came back normal...which is a huge relief and then decided that they weren't going to do a spinal tap. So I'm home with "little eye" and a dilated pupil and still no idea why??
So after I ranted for so long...has anyone had anything similar? Or is just, just another fun side effect!
Hope all are well,
Nicole T
Sometimes it will be the right , sometimes both.. when I asked about it last time.. they said it can often be a reaction to pain.. or reaction to meds.
When I stopped taking all meds one day.. they were still huge.. I believe it's a reaction to pain. Anytime i have a really really bad h/a , I notice them change. I beleive its a side effect of pressure on the optic nerves.
This group has been such a blessing for me, to simply have a sounding board for women ( and men) who understand what I'm going through and all these weird little quirks.. and things that just dont make sense.
Like you, I am young.. yet some days, I wake up and take my 5-6 pills in the am, my 5-6 pills in the afternoon and then again at night, and I feel like crap. I feel like I am 80 years old..
I feel sluggish, even when I dont have h/a's.. and am balancing out my life with a serious Starbucks addiciton! ..
I am trying so hard to just remain postive each day for now though, and coming here helps me with that. Just knowing that It could be a lot worse, and some days, it is.. but for those days, I am able to enjoy a walk in this beauitful weather, or sit and watch the sun set.. or get up and go to class, I have to look up and give thanks to God.. for all the small things.
One day at a time.. and for the days i can't bear the pain ~ I fake it , till i make it!..
Sending positve engery!! ..
Can I ask by chance, do you get vertigo ( dizziness/ or a spinning sensation) when you have this change in pupil size?
I am a little curious why they ordered a head CT instead of a MRI of the brain.. a CT is a very basic stuructural scan , which shows basicaly the outline of structures, and not the detials. That is why it is so quick. An MRI would show more detial, such as fluid sitting on the brain, or a mass .. explaining neurological changes.
I was alreted to these red flags, b/c when I did a rotation through ICU , we had many head injuries and I aslo worked on the neuro floor. While I was there on night shift one of the nurses allowed me to shadow her, when I became a ICU tech, and she had one pt who had a major stroke and was basically brain dead. She allowed me to do the neuro exam, and I noticed that when I dialited his pupils, they were non - reactive, and fixed, and were differnt sizes. Indicated there was a brain injury or something sitting on the brain.
When there is a change in the pupils, wheather it be, reaction, fixation, size, ect.. it generally has to do with the brain as well. but it can have to do with pain meds ( generally opiates / benzo's) or be a reaction to pain itself.
I would continue to bring this issue up and demand some difinitve answers. you are your own best advocate. Even if it's just a "side effect" of pain, or medication, at least you will have that knowledge and know for future refrence, but if not, and it indicates something more serious.. than it is critical that you find out early on , so you can try and get some type of treatment.
--- Laura
Honestly, I believe that it is due to a spike in pressure at that point in time. Our pressures fluxuate, that's how come a headache can come or go very quickly sometimes.
But know, you're not alone..... It's amazing how many of the strange little things that the docs don't think are relavant and then you find out on here, other people with IH have had as well.....
Best of luck to you !!
My doctor believes that because I don't have the "gold standard" pappiledema and instead of the pressure being on optic nerve that it is actually pressing on I believe the 8th cranial nerve, which controls balance and ear functions.
Just hoped that maybe I could help some with what you were thinking about.... Have a great day !!