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?

Mint,
Yes, 3 steps forward 2 back! This was definitely us. My son would relapse alot, depending on stimuli. He is continuing to improve. He will be starting his Junior year in high school this September, 7 months after his concussion last February and we will have to see how it goes. He has a pretty intense class load and I hope it will not stress him into his symptoms again. PCS is so hard, and impossible to predict what is too much and what is just enough. Hang in there and keep on hoping for the best. You are not alone.

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 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!!

I am in my fourth month with this mild TBI

Cassical- I too have the issue with words which can be like a pesky fly at times when I am trying to write. I also spent a lot of the first month thinking I would wake up and feel everything was back to normal. My second month I began to feel really helpless as I couldn't go out and do "normal" things without getting sick, cutting them short, or showing up at all. For me, even though I have only been released to work part time it does help me keep my eyes on the bigger picture that someday these problems I face now will either be "cured" or I will find a way to adapt my life around them instead of letting them adapt my life.

I have BPPV too or that is what they tell me. I have recently done the canilith maneuvers and am hoping it will cure my new seasickness that I have most of the time. It is extremely frustrating at times not to be able to go to the grocery store, or get "stuck" somewhere from the vertigo so I now carry a cane to help stabilize myself and plan a lot of extra time when I go anywhere that has open spaces which seem to affect my vertigo the most. I have felt lucky that people overall are very helpful at assisting me out of those places I have gotten trapped in. I also found that walking near walls helps. Often times I am able to get in somewhere and seem to expereince a lot of confusion leaving, so after talking with a friend who had similar problems, I took his suggestion to take a different path back out so that my brain doesn't have to process the same space again. Of course, this is not possible in all locations but I take advantage of it when the opportunity arises.

I am also from a smaller community and felt quite isolated as my family is not super close and my boyfriend dumped me when I was no longer "fun" anymore. If you have the chance at all, you might want to consider asking around your community of people who have had head injuries before. I have been lucky to connect with a couple of people in my community, and beyond their knowledge of how you are feeling, you might be able to get out and about without feeling out of place. I often get nauseous, have to stop driving or quit the activity and it's a very good feeling to know that the other person was once in that boat too!

Hope this helps, and I hope you don't give up on this journey!

hi concussiongirl and thank you for telling me of your experiences...

this time last week, i was so good, my head felt so great and i was looking forward to getting my life back onto track... today, i was back at the hospital again (headache just got way too much for me and anxiety set in and i couldn't cope)... the doctor was very nice and gave me an extra two weeks off on sick leave and told me to go home... so it looks like i'm about to book flights to get to the east coast of oz... now if i could just stop crying and get some decent sleep i'd be happy...

my small community incorporates seven whitefellas and about 50 indigenous... my boyfriend is trying to understand what i'm going through, but he doesn't deal with emotion very well, so i can't lean on him to go through this... but he does provide comfort where he can...

strangely enough, the vertigo was pretty much under control today (yesterday was a horror), with a little bit tonight as i write this (laptop on belly, laying on couch)...

crossing my fingers for you... i hope things go well for your recovery...

Please take good care of yourself. Vertigo is one of the hardest things to work your way through. So I know exactly what your going through.

I can make a recommendation when it starts to get really bad take a couple of really deep breaths and focus on something across the room if at all possible even a imaginary object. THis is something my physical therapist taught me and it really helps.

Also take your time and try to slow down. And let yourself recover as much as you can.

Donna

What Dmom said!

Look, I've had more concussions than I can count, one skull fracture, two go-rounds with meningitis, lead poisoning, and over-exposures to some real nasty solvents in the workplace. Guess what? I still keep getting better!

Yes, it's a learning curve for those around us when we get into emotions or foggy brain or sudden fatigue, etc.. Those people who truly love us come to accept these realities, just as we have to find our own levels of acceptance. Those people around us who are not willing to deal with these issues can (and often do!) take a stroll.

The few people standing with me today are the other heroes who love me as I am in the here and now.

This recovery business takes a LOT of patience. That's the hardest part for us head-injured, in my humble opinion. A lot of us experience increased impulsiveness, irritability and impatience. I've spent my life learning cognitive tools to deal with that aspect alone, and I hope I never stop learning.

Let us be gentle with ourselves. We can get through this.

Jeff

Hi everyone...

again, thanks to everyone for your stories and how you've been coping and recovering from this awful thing...

the headaches started getting really severe, and being so isolated i started to get very worried (interpretation = "i freaked") and went back to the doctor (another hour and a half drive on dirt road through the bush to get there)...

the doctor told me quite honestly that if there were anything else wrong with me that they couldn't do anything, so i was best off going home to where my support systems are, along with medical care on the door step, instead of being so far away... she said she could arrange for a medical certificate and all i had to do was arrange the flights... so off i toddled and booked my flights....

ok, next time remind me to discuss flying with you guys before i do that again!!! to get home from where i work takes three airflights, all from 2.5hrs up to 4hrs...

i was apprehensive to start off with, which i thought was kinda reasonable... plane took off and within a half hour to 45mins i was ready to rip my head off... the pain was so intense, even though i'd dosed up on painkillers before taking off...

plane landed and i almost kissed the ground when i got off the plane... i was alive and pretty happy about it... i thought very long and hard about it and decided that i wasn't going to keep going... wimping out was much better than continuing with the pain i'd been going through...

i took myself off to the nearest hospital and spoke to a doctor about it... he suggested that with my sinuses, i had experienced a sinus squeeze, where an air bubble has expanded and had nowhere to go - similar to needing to equalise your ears when scuba diving - and that was what had caused the pain... he suggested that i could take some pseudoepherdrene, except that would just cause high blood pressure and cause the headaches to get worse... he also suggested that i not fly for at least another three weeks...

so, now i'm stuck in the city of Perth, the capital of Western Australia... thankfully, my family all love me and all wanted to come to my rescue... my younger sister is flying in tomorrow night and then together we're going to catch the train over to the east coast to Sydney, which will take three days, followed by another train in order to get to Canberra... (whooops, wiping away tears again - wishing they would stop leaking out of my eyes!)

so, lesson i've learnt? don't bang head during car accident... *lol*

carol