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.

Owen,
What a scene! My son has PCS and we also have ran into alot of ignorance from professionals. Did any of these people tell you to rest ( if that has been at all possible). You actually have a temporary disability. The problem with this whole scenario is none of them can do anything anyway. Time and rest seem to be the only treatment. One of the biggest challenges is not going crazy with stress and anxiety over how devastating this is. Check out some of the websites people have given in the posts. Specifically Michellecutloose. Good resources there. I would save your money and not get too many more MRI's. Probably the neck injury keeps confusing them and making them want to treat that. Ibuprofen did not help my son's headaches either, when normally before injury it worked fine. I'm sure there are alot of other symptoms that you had or have had that seems too hard to even describe. My son lately has been very sensitive to smells and gets pretty freaked out about small matters, very hypersensitive. He is 2 months from a wrestling injury and has not been able to do much. We are going to a neurologist who specializes in concussions in sports injuries, but it is all the same thing in the end. The end result in all our appts. is listen to your symptoms and back off and rest. They seem to feel very sure he will get better but even rest can make him pretty bad. Some days are really bad and other times I think he is back to his regular self. I am a Critical Care Nurse, so I see alot of weird things but this is a test to all patience. Very, very hard and hang in there. Save your money and look around as you have and find info. on line. Rest and time and staying relaxed make the most sense. It would be nice to tone that headache down, that may be why your recovery is slow because you are so uncomfortable and cannot rest. Find a neurologist who likes PCS patients. Treat your headache, despite what the ER docs say. you know yourself better than they do. Keep us all posted.
Nancy

The one thing I can think of to suggest that helped me a lot for both my neck problems, and my headaches with my PCS was Physical Therapy.

Yes, I know that sounds crazy, but even though I'm now done with the therapy in the hospital setting I went too, I have what is called a Tens machine that I use at home, it takes care of the tension and headaches that happen at home.

The other thing that helped emensely when we thought nothing was going to,
my therapist and I. Was to stretch my neck. With traction, it felt really good, and it relieved the headaches too.

Donna

The one thing I can think of to suggest that helped me a lot for both my neck problems, and my headaches with my PCS was Physical Therapy.

Yes, I know that sounds crazy, but even though I'm now done with the therapy in the hospital setting I went too, I have what is called a Tens machine that I use at home, it takes care of the tension and headaches that happen at home.

The other thing that helped emensely when we thought nothing was going to,
my therapist and I. Was to stretch my neck. With traction, it felt really good, and it relieved the headaches too.

Donna

Wow Owen - I commend you for your attn to detail. I don't have the same pain as you, but mine happened with an accident and has been 24/7 for almost 4 yrs. One word of advice: Take your "journal" to each provider. Search until you find a family physician who will be your advocate. One helpful thing for me: I'd do a short version of medical HX, failed TX and current meds. I'd give this info to anybody and everybody who was seeing me for the first time. My trigeminal nerve was damaged (facial nerve). From what I can understand you have a very narrow window of opportunity to "fix the problem". If you don't it becomes a chronic problem. Good luck and God bless. Janet

Thanks for all the kind words guys.

My chiro was adjusting me and having me to neck traction and physical therapy. And it wasnt till i saw Dr. Isaacs, the neurologist gone osteopathic medicine did my neck actually get better. Its still not 100% but its close. But my head still hurts.

I didnt really touch that much on symptoms. Headache stays at a pretty consistent 8 out of 10. One in a while it will jump up to a ten, and its hard to function at all. Ive tried everything short of narcotics and nothing even dulls the pain. The nortiptyline helped. It was still very much there, it just bothered me less. Not enough for me to want to keep taking it though.

I have good days and bad days. Some days im just tired of trying to function like this. Other days ive got more of a fighting spirit. I have trouble forgetting what im doing. I have extreme trouble formulating a plan. Like im going to do this, and then this, and then this. Ive adapted to just doing things as i think of them.

Im extremely irritable. Sometimes, just being touched drives makes me almost lose it. Ive started snapping at people. Things not normal for me at all. Im a bitter person now. The weirdest thing is that ive been having extremely premiscuous feelings. Now im a loyal guy,ive never cheated, so i dont understand where they are coming from. I havent acted on them, nor do i intend to. I dont know if im trying to fill this emotional void with sex? It causes me a great amount of distress. Should i seek a psychiatrist to sort this out?

A psychiatrist can't hurt. But you would rather have a psychologist
someone to talk to about how you are feeling. A psychiatrist just
prescribes meds.


Donna

Owen, I got my concussion one month ago and the doc in the ER sent me home that day and said go ahead and drive myself to school tomorrow, didn't give me any kind of CAT scan, even tho I need 3 staples. 3 days later my PCS set in and I had to have a CAT scan uninsured, because my insurance ran out THE DAY AFTER I got hit, AND the ER doc knew that on the day of! I was ticked and I'm fighting the bill with a request for FreeCare since it was her negligence that meant I had to get the scan uninsured anyway. But I SOOO sympathize with the trouble to form plans and the forgetfulness. It's hard to think straight when your head hurts that much, I'm no doctor but it's obvious that the symptoms are terribly distracting. I had to do my clinical skills testing for a CNA course taking care of nursing home patients while this was going on, doing heavy lifting and planning how to do safe care in a timely manner. HA HA, as you can probably imagine it was 3 days of HELL and I barely passed a course that I should have breezed through.
From all that I've gathered, there is indeed no better treatment than as much good sleep as you can manage, counseling for the emotional trauma, and I've seen references to biofeedback which I'm going to explore. I have vertigo, an anxiety disorder, and ADD anyway so I maybe should have looked into that before. I've started drawing again- just picking up a pencil and doodling images that make me feel good. Roses, chickadees, stars and planets, horses eyes, whatever. I found that I was pleased with how they turned out because I was drawing something I loved that I already knew well. And I cry a lot. Even if something makes me laugh, the laugh usually turns into crying. I know that's part of it too, so I'm learning to be alright with it for now.
AND, when you mentioned feeling promiscuous, that rang a bell because I've been longing for the past month to be held again by my ex from 5 years ago, at the same time that I'm feeling like giving in to the advances of this nice guy who I'm never been attracted to, just to be touched and held. I'm fighting it tho, because I'm pretty sure if it weren't for this I wouldn't feel that way, but I do think it's the trauma, emotional or physical, that makes one feel more in need of physical affection. I haven't heard it from anyone else but I do think it's an effect of the injury in some way.

I am also so happy i found this place--there's nothing to make you feel better like someone else who feels like they're going crazy, too.

I am on day 13 of the non-stop headache torment. I just got diagnosed with "text book" PCS, because of memory and concentration problems, dizziness, etc. My biggest frustration so far is that no one gets specific about the headaches, and docs don't seem to care that my headache is not like any other i've had before. This headache is so bad that it hurts to talk at a volume that's audible to most people, it hurts to shift my gaze, it hurts to walk down the stairs because of the bounce, it hurts when someone talks at a normal volume on the phone (i have to hold the phone away from my ear).

I was a passenger in a small truck that was rear-ended by a bigger truck (going about 35 mph, i think). I hit my head on the back window of the cab, and had momentary confusion that hardly dazed me (notmal accident stuff).The headache was instant, and i've only had a couple hours of relief here and there since. My CT was normal, and i was sent away from the ER with "cervical strain."

Has anyone else had this kind of headache? I cannot function at all like this, and I'm scared my life is never going back to normal because of a stupid fender-bender.

Owen: I don't know if you are still following this thread, but I must share my daughter's encouraging experience with you. She's now 15 and for over a year she had PCS symptoms including debilitating headaches, dizziness, extreme fatigue and lethargy, difficulting focusing and concentrating, light and sound intolerance. Notice I said HAD...Her doctor prescribed a low dose of Effexor XR to promote neurogenesis and I was able to finally convinced her to see an acupuncturist. Within 3 weeks her symptoms cleared up by at least 90%. The acupuncturist said that blockages in her upper back and neck were impeding blood flow to her brain, causing her symptoms. I don't know how it works, but I can tell you that it DOES. For the first time since this nightmare began I am confident that she'll be able to live a normal life.