Originally Posted by owen

Im so glad i found this place. Heres my PCS story.

I was at a paintball tournament in florida. It was two days before our team was scheduled to play. We were walking through the vendor area when a freak gust of wind blew one of the vendors balloons, about 10'12 feet in diameter, tethered by rope maybe 50 feet in feet in the air, it came down directly on my head. I didnt see it coming, i had no idea what had happened untill someone told me. I went to the ER, they xrayed my neck. Nothing was broken. They called it cervical strain, and said "physical activity as tolerated". Well, two days later my team needed me to play, so i indeed tolerated. The persistant headache i was having since the accident, I just assumed was from the extremely sore neck.

About a week later, i noticed my vision was noteably worse. I woke up one morning and anything past 6 feet or so was extremely blurry. Like vaseline smeared glass. I was also have a hard time concentrating, which i blamed on the headache. So i went to the ER. They said the persistant headache unresponsive to pain medicine, difficulty concentrating was text book PCS. That it normally gone within 4 weeks. They said as far as the blurry vision goes i probably had bad vision and are just now noticing it. Which angered me, because up untill a week before i could see fine. Now i cannot recognize a friends face from across the room. I can guess with a high degree of certainty, but there have been several bad guesses. Including my GF of 5 years.The part that bothered me the most in the ER was that they treated me like pain medication seekers. I never asked for any kind of pain medication. They talked to me with a high level of disbelief in their voice. Granted i was rather miffed at the idea of having this pounding headache for possibly 4 weeks ( i wish at this point ). I had already tried ibuprofen and tylenol to no avail. They reitterated the fact that persistant headache unresponsive to pain medicine was textbook PCS. And then they have me 500 mg of ibuprofen. I wish i had thrown it in their face and told them to eat ****, but i just did as they said. I was desperate. They called it a "loading dose" as they chuckled at each other ( the two ER docs ). I was thinking "wtf you just said its standard for medicine to not help pcs headaches." They told me to keep taking ibuprofen to get it to "build up" in my system. Which i did for a couple days, which did nothing so i stopped. Now my normal pre-PCS self, i dont like taking anything for a headache, cause its normally gone within 6-12 hours. I just dont like polluting my body if not needed. So i wasnt going to keep taking the ibuprofen if it wasnt going to help.

4 or so weeks pass. Nothing had changed. I got a refferal to see dr. jane ( of christopher reeves fame ) who simply poked at me, and said it was the PCS, but he wanted to run an MRI to make sure it wasnt something else. I had the MRI ($2,200 for my uninsured self), then waited anxiously waiting results. After battling the UVA health systems automated phone system for some time I had a nurse of dr. janes call and say " dr. jane wrote on your record here, " mri does not show anything to explain the symptoms patient is having."" So im like ok, wtf? Dr. jane also reffered me to a opthalmologist for my vison problems.

So a few weeks later i have my opthal appt. with dr. newman. An interesting fellow, but definitely a wound up guy. After his techs tested my eyes he came in, just shy of yelling said " your vision problems have nothing to do with getting sacked on the head, your visions been getting bad your just now noticing it." and left. Again, F you guys, i could see fine before this happened.

I go get glasses, so atleast i can see. But my non stop headache, and problems concentrating are still there, and dr. jane says "mri doesnt explain symptoms". So i dont know whats wrong with me. So i go to my primary care doc. She was the first helpfull dr. and explained that it was PCS, and that it normally doesnt show anything on an MRI. And she had no idea what dr. jane was talking about. That with PCS theres nothing really you can do but wait. As far as the headaches, she suggested i try midrin, a mirgraine medication. Which i tried. It knocked me out, but didnt help my headache. Ive never had trouble sleeping, despite having a headache. If anything its hard to wake up, because when im a sleep its the only time i get a break from the pain. So i wasnt going to keep taking the midrin if it only put me to sleep.

My PCP Dr. way reffered me to a neurologist at uva dr. perrin. She performed the same neurologic tests, squeeze my hand, watch my finger, whats todays date, where are you questions. She again told me theres nothing you can do for PCS except wait. When describing the headache as coming from the bottom half of my skull, she wasnt sure that it wasnt a torn ligament in my neck. I asked her if i should stop seeing the chiropractor, she said it would be a good idea untill the could rule out a torn ligament. My neck had still been bothering me so i thought i could be possible. So she ordered an CT scan. As far as the headaches, she said she didnt think i was at a point where i needed anti depressants, but she wanted to try a drug called Nortriptyline which would "lower my pain threshold". So i filled my prescription, immediately researched nortriptyline. Turns out its an anti depressant , also used for bed wetting. I decided id give it a try, i was desperate.

time passes, i have the ct scan. ( $1600 ) Fight the UVA phone system again
finally get dr. perrin to call me back. CT doesnt show anything. At this point my neck is killing me, so i ask her if i can go back to the chiropractor now. "no, i want to do an MRI to rule out any torn tendons". ****. The part that bothers me the most is knowing the extent of my injury, they could have just gone down a couple more layers when they were doing my brain MRI. But it doesnt work like that. So i get my neck MRI ( yes another $2200 ).

IN THE MEANTIME - The nortriptyline, I started out at 10 mg a day, and supposed to go up to 20 mg. the 2nd week, and so on till i reached 50 mg. So, 10mg was bearable. It helped knock the headaches down a notch. But they were still there. Well when it came time to move up, at 20 mg. I could not stay awake. So i just stuck to 10 mg. I originially blamed the medication on feeling crazy. But now that ive been off it for a while, im just feeling crazy.

So, i got hooked up with a neurologist named Dr. Isaacs. Did alot of weird neck manipulations. nothing like a chiropractor, no jerking or twisting. weird stuff like, head in his armpit, looking one direction, hand in my mouth, moving a foot. Holding my head. He then sat me down and asked me a lot of questions. Explained that while he was a neurologist, he studied osteopathy for many years, but emphasized the fact that technically he was not an osteopath. He said he wasnt sure it wasnt my neck causing my headaches. After the 1st visit my neck was 75% better! The 2nd visit he asked me to bring my GF. He asked her if i was irritable? Yes. Was i acting crazy? Yes. Then he manipulated my neck again. Same weird stuff. At this point my neck is 95% better! but it hasnt helped my headache any. He ordered a test to see what exactly my brains problems are, as far as concentration and abstract thinking and whatnot. Its not untill 4/25 so ill let you know afterwards.

Dr. isaacs said i could stop taking the nortriptyline because it could just as easily be a hangover headache from the drugs. So i stopped. my head still hurts, but im glad to not be throwing chemicals into my body.

MRI came back not showing anything torn.

So thats about where im at. Its been 5 months. My head still hurts 24/7, i still need glasses, i cant concentrate, and im feeling crazy. Crazy because these constant pounding headaches just start to wear on you.