Dear Lynlee,
THANK YOU SOOOO MUCH for providing me more information on PCS, the meds (which I will bring up to my neurologist in my next visit with him) and share with me more of your experience that are so similar to mine, as if I am the one who write them!!! It is very comforting for me to find out this whole host of communities suffering this most unfortunate health issue like me! I empathize with you and Mark SO MUCH for your sufferings as well! I WISH YOU MUCH continued success in your recovery as well Lynlee!
You are so right, a lot of time people think I am crazy too when I described to them my sufferings and symptoms, especially my gp, who is rude, narrow minded, short temper with me and always downplay my health complaints/symptoms (unfortunately I have not been able to find anyone to replace him yet, but I am continuing my search). He gave me the feeling that I made things up or I don't know how I feel! My neurologist seemed frustrated with me at times, especially when he could not explain to me why i feel so much pain on one side of my head and then it switched to the other side on another bad day!!! A second neurologist told me it's migraine and told me to go back to my gp to ask for prescription of Lexapro, but I have not done that since I am still having other symptoms that were not explained.
In terms of searching for a right doctor, just like Mark in Idaho had warned me, it has been frustrating for me to find a doctor who has experience with PCS around where I live. In the past 2 days, I called NYU HOsp, NY Columbia Presbyterian Hosp, BIANJ.org, and was given a few names, but when I called to inquire about their specialization in head injury or PCS, it was not much. Even funnier in one case, the woman gave me the name of a supposedly neurologist, but it was a lawyer instead (there is no such neurologist by that name at that location!) Isn't that funny? BUT I will continue my search as you and Mark in Idaho encourage and advise me, I won't stop my search.
But currently, I am still quite miserable with my latest relapse that occurred 7 days ago as I mentioned in an earlier posting (after the violent coughing), I can ONLY lie down and do nothing to feel ok! Any movement that affects the head, from physical moving gently (the head) from one side to another, or a gentle nod or a gentle shake, or talk a little, even a short sentence, or a thinking or a frustration feeling, or writing this note with intensity and anxiety, then come pain in the head, then dizziness and nausea, down to the eyes, including the 24/7 ringing in the head getting a little louder. A simple movement of head from left to right or vice versa (very small degree) even while resting on the pillow caused dizziness! I just took a few seconds rest, sit very still, leave eyeball resting, then feel better and can continue writing, isn't that weird? I never had a relapse this bad before ... I wondered if I have concussed myself again by that violent cough, or whether I had created a minor tear in blood vessels in the brain causing a slow subdural bleeding(?) I have been refraining myself from asking my current neurologist to send me for another CT scan although I am very tempting to do.
I will certainly keep you all posted with any new development in my recovery searching effort that I will have. Again, I feel so comforted by you and Mark in Idaho, for consoling me and giving me very very very valuable advice and directions to follow. I cannot express enough my appreciation and gratefulness to you... Will keep you posted again soon. Please take care and have a great day meanwhile Lynlee
! margie