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 there.
My name is Sam and I'm almost 25 years old. I was diagnosed with IIH almost 3 months ago after seeing numerous doctors trying to figure out why I'm having blurred vision and headaches. I've had the vision problems for as long as I remember but just thought i needed glasses and being the procrastinator that I am, I never got them.
But 2 days before this past Christmas I was involved in a fender bender which was unfortunately my fault... I slid on ice and hit the guy in front me. Living in New England I'm surprised it doesn't happen more for me. About 2 weeks after the accident I was having these headaches that only happened on the left side of my forehead which I blamed solely on the fact I had hit my head on the visor above the steering wheel during the crash. So I saw my doctor thinking maybe it was a fracture or post concussion syndrome... I work at a hospital so I thought I knew what I was talking about. But after a Head CT Scan there was nothing evident.
My PCP then ran labs and come to find out my SED rate was through the roof so she sent me to a Rheumogolist, Ophthamologist, and a Neurologist thinking maybe it was Lyme Disease. The Rheumotologist had no answers for me but the other two specialists did.
So here I am diagnosed with IIH/PTC. I was gradually put on Diamox at 1000mg a day and the side effects were too much for me to handle. The intense constant tingling in my feet and fingers and the Charlie horses that paralyzed me lead to tears which lead to frustration and conversation with my neurologist. I was told to stop the medication cold turkey.
I am now 2 weeks off medication and frustrated more than ever. I still have the tingling and now increased eye twitching and blurred vision. I work in the Radiology Department at a hospital so I know enough about Lumbar Punctures to worry about them. My Neurologist mentioned the procedure once and hasn't returned to the conversation.
So I ask all of you, should I stop freaking out and allow the medical professionals to guide me or look for a second opinion?? Like my subject says... I'm freaking out.
Thank you for reading and allowing me to rant.
my son is always 23 and they close him at 14 and he feels fantastic for two days, no low pressure headache. but that is not as much of a change as what you probably had, going from 35 to hopefully a normal closing pressure (around 15)
I am so glad you finally got an accurate pressure reading. that was important to document, so you can get this treated properly.
https://www.ncbi.nlm.nih.gov/pubmed/27928418
I was diagnosed with IIH and Pappilledema in 2013. After seeing an eye doc for the headaches, spots, balckouts - they sent me straight to a neuro-opthamologist where he diagnosed me and sent me to a neurologist for a second opinion. This was in a span of 2 days. The neurologist actually sent me straight to the ER after he saw me. I got an LP there by the neuro-opthamologist and as scary as it was it did relieve pressure. I havent had to have another one since. I was put on Diamox and the side effects you experience while taking that are some of the worst I have ever experienced and have taken myself off of it as it causes too many bad side effects for me. I would suggest finding a neuro-opthamologist if you can. Im not sure if you are still getting side effect from the medicine since its been a while since youre original post but having gone on the medication twice and going off cold turkey the side effects do last for a bit after you stop. Now i just try and eat healthier and exercise. I do have some elevated pressure in my head and ears when i overexert myself working out. There are also certain exercises that always seem to make me feel that pressure and get a little dizzy/blurry vision like planks, sprinting, burpees, etc. I wish you the best and hope that other people going through the same situation as you can help answer some questions you have.