Dear Mint et al,

PCS McGee is right -- it CAN get better. My then 14-year-old daughter had a concussion playing basketball 17 months ago and several weeks later was hit in the head with a full backpack. Without going into all of the details, life was hell and there were many times that we gave up hope. But we found that the right combination of acupuncture and Effexor helped. Yes, McGee, the latter is an antidepressant, but the way it works for TBI is that it and other antidepressants promote NEUROGENESIS, to re-establish nerve pathways in the brain.

Anyway, I just came back from visiting my daughter in overnight camp (she's been away nearly 4 weeks) and she said that she feels normal again. She's had only two short (5 to 10 minute) headaches and no more light/sound sensitivity, difficulty reading (focus/concentration), dizziness, fatigue. This, despite being slightly sleep deprived. (This is a girl who needed 12-14 hours of sleep at the height of her PCS.) The true test will come when school starts, but we'll cross that bridge when we come to it.

Keep us abreast of how you're doing and keep your chin up.

PCSMom

Glad to hear that your daughter is doing well!

PCS takes so long to heal that it's difficult to be patient and let the healing process go at its own pace and it's easy to give up especially as the symptoms randomly get worse sometimes. Does anyone else experience that some weeks are worse than the week before?

Hi everyone,

I'm currently in tears after having read all your posts. Here I was thinking I was going crazy and I'm thankful that I'm not the only person experiencing this problem.

I was involved in a car accident just over three weeks ago and besides soft tissue damage, I hit my head pretty badly (my partner and I were very lucky to get away with lots of bruises, since we rolled 3.5 times and the cars been written off).

After the accident, I spent a couple of nights in the hospital and was then discharged. My head didn't seem to get better and a cat scan showed that my sinuses had filled with fluid. I was on antibiotics which I finished last week and was feeling really good. By Sunday, I was back on the couch and two days later (today) I just feel totally crap (sorry, Aussie slang).

I've also been told that I've got something called Benign Positional Vertigo, but I don't care what I have, I just want the boat to stop rocking and want to stand on still land again!! I can't sleep and when I do have horrific nightmares (not about car accidents) but about death and being chased by very scary people and aliens.

I keep using the wrong words (I love my words and hate this aspect) and I'm an emotional wreck. These are about half the symptoms, but the main ones.

My family lives on the other side of the country (six hour plane flight home), my partner is a six hour drive away, and the nearest doctor/hospital is an hours drive. I feel isolated and alone, but now relieved that others have experienced something similar to what I'm going through.

Good luck to everyone. I just want to get better and soon. I don't know if I can put up with this for 4 years!!

20, male, had it two years. Its gone, 100% symptom free. I worried myself into such a deep depression, never thought I'd get out, never. Tried every treatment i found, EEG's (LENS), neuro meds, chiro, acupuncture, psych...didnt do much. And then finally it lifted by itself. BTW, don't bother with the statistics, useless in my opinion. You can get better.

Thanks for this post. Gives me hope. Oh- I'm 37... Well, we'll see.

After 6 months of doctors trying to tell my son that the vomiting and nausea he had every morning was due to stomach problems (even though he told them he had probably sustained a concussion days before he fell ill) he was finally diagnosed this week with PCS-and by a gastroenterologist at Children's Hospital in Boston.

He had months earlier undergone ultrasounds of his stomach, kidneys, liver and spleen, had an upper gi and an endoscopy and a lot of blood work-all which were inconclusive. One doctor told him he was suffering from Cyclical Vomiting Syndrome.

Now that we know what is the proper diagnosis he is going to have a treatment called "LENS" which stands for Low Energy Neurofeedback System. Although his first session is not until later this week, what I understand it to be is a procedure that monitors and analyzes EEG (brain activity) using the EEG information as feedback. The signals which are recorded through electrodes influence the feedback and normalize the brain activity. It is supposed to improve functioning much quicker than other forms of neurofeedback and it is FDA approved.

I googled it and got a lot of information. I will get back with how it is going.

Hi Mint

I think the term post-concussive syndrome is really not accurate. You need to think about concussion for what it is: a brain injury. Brain injuries can widely range in severity. What most people call PCS is actually "mild traumatic brain injury." The word mild is misleading, because the effects of MTBI can be debilitating and life-long. I suffered a TBI a little over 2 years ago. There is an excellent book on the subject of MTBI, which I recommend to you. It is called Coping with Mild Traumatic Brain Injury: A Guide to Living with the Challenges Associated with Concussion/Brain Injury, by Diane Roberts Stoler and Barbara Albers Hill. This is a very comprehensive book on all aspects of MTBI, how it affects your life, physical, mental and emotional effects, and recovery. It is an excellent resource.
-pasara

Hello, Post concussion syndrome is a new term for me. I have never heard of it before coming here last week. I received a tbi when I was five about 42 years ago when I was hit by a car. Among other injuries, I had to relearn how to talk, and my personality was drastically changed. There has really been no therapy available for me when I was growing up. I just had to learn, relearn and adjust on my own. School was difficult for me, and I was always put in the slow classes. M y moods were always dark afterwards and as a result I have very volatile mood swings. I do talk with a therapist, and take a mood stabilizer which does seem to help. Other than that I just try to learn the best way I know how. I have developed skill as a medieval calligrapher over the past 5 years or so.

I've had the most recent bout of PCS symptoms since 2004. I also had an shorter bout where most of the symptoms went away where the injury was in 1998 and the symptoms faded dramatically on their own in a few years.

The most recent concussion would probably be termed 'moderate', with only a few seconds of greying or blacking out after impact. However, the symptoms from this concussion are more dramatic, with the following symptoms

*Concentration issues
*Dyslexia when writing or typing
*Issues forming coherent sentences or speaking verbally (loss of vocabulary, etc.)
*Headaches (these are fortunately getting a lot better and are few/far between)
*Feeling of pressure/'congestion' in the back of my head, at the base of the skull/beginning of spinal column (nothing has shown up on any x-rays or MRI about vertebrae being out of alignment or any soft tissue issues. This also tends to occur more with headaches. I also have borderline-to-high blood pressure, which I'm sure ties into this symptom somewhere)
*Inability to deal with being in large groups of people-I'm almost agoraphobic
*Depression and anxiety issues
*Radical mood swings
*Easily irritated/extremely short temper
*Extreme inability to deal with stressful situations-at some point where the stress level reaches a certain point, all sorts of things begin misfiring. Something seems to take over on a fight-or-flight-instinct level and I just physically leave the situation. Naturally, this has caused a lot of problems, and has cost me one job, one relationship, and has repeatedly strained friendships.

Overall, I've had some symptoms improve, but overall things have been steadily declining.

I share a lot of the frustration that the other posters have with the medical community's reaction and treatment- I remember doing a lot of online research and took a bunch of printouts to the doctor when I first got treated, and the doctor actually TOLD me to my face that I was more well informed and knowledgeable about PCS than she was. Her treatment, rather than refer me to a neurologist, was to tell me that I'd have these symptoms for the rest of my life and to prescribe anti-depressants (Xoloft, which did absolutely nothing and I have since stopped taking them).

Wildcard, your symptons are just about the same as mine other than the dislexia. (spelling?) What interests me the most about yours is what you said about the base of your skull. I have the feeling there that when I am extra tired and not the just tired feeling, my skull feels like it is not attached to the very top of my spine. I have asked and asked about it. Like you, nothing showed up in the MRI. My blood pressure is also high and I have to now take pills for it. 2 years ago I was rushed to hopsital with a hypertensive crisis 230/190 - the pain in my head was absolutely unbearable fortunately I didn't have a stroke as was expected! Pre accident I didn't have any signs of high blood pressure. I don't know if there is any link. I also feel that I know more about PCS than my GP - even though he had it at med school. I note that the insurers psychologist has actually criticised me for studying up PCS - but it we didn't ourselves who would! The accident that caused this for me was in 2001 and was very minor. Since then I have re injured about 4 times, the latest being 3 weeks ago - the last brought back the worst headaches and memory problems. The headaches have got better and are mainly when I let myself get too tired. The key is not to get too tired.