Hi all,

Let me start by saying THANK YOU to you all for being so candid and straight forward about your struggles with this insane diagnosis. I am Jess, 40 y/o mom of 3 boys. I am a nurse and a wife and a billion other things on any given day. More importantly I am a PCS victim. October 3rd, 2012, 5:45(ish), I was rearended on my way home. I was in a 2008 accord, he was in a full size pickup with a trailer. I was stopped, he was going 45 down a small hill. BOOM! I was transported from the scene with suspected concussion and whiplash (my seat broke and my shoes flew off!) I was ambulatory (up walking around) and in full possession of my senses, but nauseated and dizzy and my ears were ringing. Needless to say, the real fun began on day 5 of the injury. Suddenly I had distorted vision, a constant head ache, ringing ears, imabalance, memory loss, facial numbness and I was losing words. I immediately sought an neurologist and was diagnosed with PCS.

This is where the fun began. I was sent home with strict instructions to observe a low stimuli enviroment (brain rest) and put on Valium, Tizanidine and Fioricet for the head aches. I missed a week of work, layed in the dark and felt sorry for myself then got back to it. Only the symptoms didn't go away. I didn't have them all, all the time, but there was always something. Everyday it was headaches,insomnia, weird eyesight and the ringing in my ears. Then every other day the headache would be a crusher, just debilitating and I would just flounder at work. This went on for 3 months. Then in December, for no known reason, I got worse. I couldn't function at work, I couldn't talk without pausing, losing my train of thought or just jumbling my words completely. I was forgetting things, BIG things. I was a mess. I went back to the neuro (I had been doing PT also but did not notice an impact on the symptoms) He advised me to increase the Tizanidine, try and anti inflammatory (3rd one to try) and put me back in low stimuli. That didn't work so we added Imitrex, nope, then I had to go through a series of DHE injections, no better. At this point my symptoms were daily head aches, cognitive issues, distorted vision, ringing ears and anxiety. I flet like a loser, like I was going crazy and completely cut off. I was in a panic that this was going to be my LIFE!

I had seen a Headache specialist, a physical therapist, a neurologist, my PCP and a chiropractor. I was on FMLA pending a medical release for work, I couldn't drive, I felt like my life was over. Finally, in March of this year I got a 3rd opinion. Thank you Jesus because this guy knows his stuff. He immediately took me off the meds ( I was up to 7 pills a day). He scheduled a new MRI to look for Shear Injury, had me see a therapist, a sleep specialist and most important, a VESTIBULAR therapist. This has been the key. Immediately they identified Post Traumatic Positional Vertigo. They also found that I had developed nystagmus (shaking eyes) and a drift in my left eye. Now, prior to this accident my eyes were 20/20 nd my ears were just fine. Apparently, when the guy hit me it caused a chain of events in my head. Concussion, and whiplash...ok....how about this: a shock wave went throught the fluid filled spaces in my brain that completely scrambled everything. The jury is still out on the shear injury but it would explain the memory loss and cognitive impairment. Then it also knocked the crystals from the innermost part of my ears out of position. They settled in 2 different places in my left ear and 1 in my right. So I get dizzy and fall to the left (my bad side) When I spin, it's to the left, my Migraines are localized to the left side of the brain....see the pattern? Turns out that since I have this insane vertigo and the drift in my left eye and the nystagmus, my brain is constantly being overworked on a level I can't even feel trying to correct my balance, orientation, hearing and vision....not to mention ALL the other issues!!! Can you believe that?? The good news is is that Im doing better. Im 6 months out, I still can't drive, but I have the really great glare reducing glasses that help the visual stimuli tons, I am working again, not as a nurse and only part time, but it's work! I still get debilitating Migraines but only every 6 or so days instead of every other day and I only take 4 pilss a day now instead of 7-8! I still have some cognitive issues, especially when I am tired, but dang, Im at like 85% instead of 40 and I am thrilled.

So that my story, Thanks for hearing me I highly recommend seeking a neurologist proficient in PCS, and if dizzyness and eye issues persist, find a vestibular therapist, you wont regret it!