I have a lot to be thankful for this Thanksgiving. I wanted to post in the "Hope and Healing" thread, because I'm pretty much on my way to a good recovery. The thing about "full" recovery is that it cannot be an expectation that one will return to pre-injury levels. One will be different. Perhaps better, even. I know that I am more even-tempered and let life flow a heck of a lot better. There were several keys, however, for me. #1: I accepted myself in my new reality. This really seems to be the number 1 step toward recovery, and was a work in progress for several months. #2. There is this phrase that I latched on to: "the less you think and worry about your symptoms, the faster they will usually go away." This is very, very true. Not that my symptoms have completely gone away, I may still have a few of them come and go for awhile, but thinking about them less and less is very important. #3: Really, PCS is a terrible and bizarre affliction, but thankfully, with patience, it can be recovered from. I think it's really important to keep one's anxiety in check. That was probably what exacerbated my symptoms the most. Stay strong and positive and things will eventually work out! Thanks to everyone on the forum, and especially Mark from Idaho to help me get through this.

I would say that I'm now "95%" recovered and pretty much fully able to lead a full life now. I cannot emphasize how much seeing a neuropsychologist helped me in my healing journey--plus getting my anxiety and depression in check. I still have a few symptoms (mainly fatigue, now, and ever so slight balance issues, esp. under artificial light) but I am a fully engaged 40 something now with energy to spare. In addition to training again for next year's cycling season.

I cannot emphasize this enough--stay positive, and get that anxiety and depression in check. In a bizarre twist in how the brain works--both anxiety and depression exacerbate and make the symptoms 10 times worse. Also--once you glean all the information that you can from forums like Neurotalk, it's the best idea to look to other more positive places for input. I would highly suggested "Full Catastrophe Living" by John Cabot Zinn as a starting place. Don't let the title scare you, this is a great book about mindfulness and living life to its fullest even when suffering from chronic conditions.

Stay positive people! Things will work out OK! Stay positive!

I’ve been wanting to post to this thread in the hope that it may provide some comfort and help to those recovering, especially those who are at the beginning of their journey.

My backstory: I’m a 48 year old male. In July of this year I was in a mountain biking accident where I was thrown into a tree head first at close to 20 miles per hour. The other part of my story is that this was my 9th head injury. This time around, however, things have not been easy.

Most of you already understand the suffering related to the multitude of physical symptoms, the fear, the loneliness, as well as the unforgiving psychological effects of this injury. I feel no need to narrate that part of my experience. Besides, I understand that there really are no words that can completely capture what you’re going through.

Instead, I want to simply say that I’ve made great strides since my accident, that I’m starting to put my life back together, and that I expect to eventually get back to a point where I feel healthy. In short, I can attest that there is hope.

But I want to do more than that. I also want to describe some of the things that helped me and relate a little of what I have learned during this process. Understand that much of what follows is not anything new. In fact, I echo many of the voices that have contributed to this forum. But, there is a little of me rubbed on what follows, a little of my therapist, as well as a small contribution from my neurologist. I hope you find it beneficial.

1) Read the sticky thread “Things you wish you’d known when you first got post-concussion syndrome” in this forum. It took me almost a week to get through the thread due to my initial fatigue, migraines, and light sensitivity but it was worth it. The discussion got my recovery off to a good start and helped me understand what I was facing.

2) Keep a journal of your physical and psychological symptoms. This is something you’ll be advised to do repeatedly. Heed the advice. You’ll need it to accurately discuss what you are going through with the health care professionals in your life. But more importantly, your journal will allow you to track the improvements in your condition however small they may be.

3) Pay special attention to your physical and psychological symptoms. They are the best indication of what’s going on for you. If something makes you feel better, such as meditation or a hot shower, do it as much as you can. If something causes any of your symptoms to get worse avoid it if possible. It’s that simple.

4) Do an accounting of your assets. I don’t mean money or anything of that ilk. I mean things like your family, your life partner, your pets, your plants, your creativity, your strength, your drive, your will to heal. Anything that brings you joy, is sustaining, and is life affirming. Keep them close, don’t forget about them, and engage them as much as you are able. You’ll need them more than ever.

5) Do not put a time limit on healing. This is different for everyone and for some it takes a while. I remember the despair I felt when it was a month, then two, then three with little or no improvement. It took three and a half months before I started to see significant changes in my condition. Do not lose faith in your body’s ability to heal. The majority of people do get better. It’s just that this is an injury unlike anything you’ve ever experienced it probably won’t conform to anyone’s expectations.

6) Learn mindful meditation. At first, when I couldn’t sleep, this was the only form of rest I got. Later, it was something that I did to help with the headaches and tinnitus. When I felt a headache coming on or the incessant ringing in my ears got worse, I’d stop and meditate. This practice helped ease (not eliminate) the worst of the physical symptoms.

7) Sleep as much as you can. Everyone will tell you about the importance of rest and reducing stress and they are right. I can only add there isn’t any substitute. Sleep is your first battle. Drugs didn’t help me, the only thing that did was meditation. That said, it was about three weeks before I could sleep for more that 2-3 hours at a time. (This is by far most pernicious part of the injury.) Also, keep in mind that after you can sleep, you going to need a lot more than you did previously. Plan on it. I went from being someone who needed 6 hours to function well to someone who needs 10 to feel okay, 12 to feel good, and 16 when I pushed a little too hard. Sleep as much and whenever you can. It’s the single most helpful thing you can do.

8) Stay positive. There is a good chance you will have to be stronger than you ever have been in your life. But I’m surviving this, others have survived it, and you can too. Hang in there, things can and do get better.

9) Learn your limitations. This was particularly hard for me for many reasons, the most notable being that my limitations seemed to change from week-to-week, sometimes day-to-day. It took a while to learn how much activity I could sustain before becoming incapacitated. In time, by paying attention to my physical symptoms and by making accurate journal entries, I got to a point where I could predict how much activity, as well as what kinds of activities, I could tolerate before needing to rest. The goal is to not push yourself to a point where your symptoms are really bad. Once you’ve hit that point you won’t bounce back right away. Learning your limits is the first step in reclaiming your life.

10) Understand that you are going to have bad days. Sometimes it seems like I had regressed weeks in my recovery. Do not get discouraged. Figure out what put you back in that place, make adjustments, and remember that your good days are a benchmark. You can learn to make every day as good as your best days and use that understanding to accelerate your recovery.

11) If you have speech issues, singing may help you overcome them. If your condition is similar to mine you will have to wait a little while, but once I could tolerate the noise I was able to recover from the worst of my problems in about a month.

12) The physical symptoms are only part of the challenge. You may also face significant psychological challenges. Do not let this diminish your hope. I am, for instance, having to relearn some pretty fundamental stuff like how to stay on task. How to keep my fears in check. That when I become irritable, its really about the fact that I’ve reached my limit and just need to rest to right myself. But I am relearning and it’s not as hard as you may think. It’s just scary when you first realize how far reaching this can be. I have no doubt that in time all of this can be overcome.

13) Last, accept that you will never be the same. It is unavoidable. This experience is very traumatic, there is no way you’ll come out of this the same person even if you do fully recover. But you can come out of it a better, a stronger, and a more grounded individual. I have come to view my experience as a rare opportunity. How often do people get the chance to rewire their brain, to have their life razed to its foundations, then rebuild it? That’s what we get (yes, get) to do, and I personally, in spite of the suffering and the hardship, will accept nothing less than coming out of this a better individual.

So five months into my recovery, I still have good days and bad days. I’m still learning my limits and learning to accept the changes in my life. I’m not exactly sure what the future holds but I can say that I no longer live in constant pain, that I’m putting my life back together, that I’m working, that the time I spend with my children is just as fulfilling as it always was, and that I know I can relearn everything I feared I had lost. I’ve also been sensitized to how amazing the brain is, how resilient our species is, and to the fact that the things that truly made me who I am are immutable.

I wish you the best of luck. Be strong, stay positive, be patient with yourself, and embrace the challenge that has been placed before you.

Wow, Impressive that you can put so much information together. That shows quite an ability to process and store information.

Regarding number 7, sleep. Studies show that appropriate sleep is important over quantity of sleep. Very early on, quality sleep is important (first few weeks) but after that, too much sleep is counter to recovery. The brain needs mild stimulation to enhance good blood flow that does not happen during sleep. It appears that it is more important to sleep at points of fatigue (napping) so the brain does not go into debt. It was not uncommon for me to take 3 or 4 short naps during the day. Some of these were spontaneous. Others were a result of realizing I was fatigued and taking a short nap.

The difference in my ability to function in the time just before the nap and the time after the nap would usually be appreciable. My brain just needed the time out before returning to the activity/task at hand. I only sleep in/on my bed at night and after a serious overload/ over-stimulation event. The rest of the time, I napped in a recliner. It was more convenient and safer for my neck. I could put my head back while reading, take a short nap and awaken to return to my reading.

For some with physical injuries beyond just the brain, sleep may be needed due to the body's struggle to heal.

Mark,

Thank you for the additional information on sleep. The last thing I want to do is articulate anything that prevents someone from recovering as quickly as possible.

In looking at my post, I'm realizing that its a little misleading in that it leaves out a few details. My ability to sleep, the quality of sleep, and my need for sleep has changed dramatically over the course of my recovery. I've gone from insomnia to hypersomnia to what's getting close to a fairly normal sleep cycle (8 to 9 hours) most days. I still have nights where I sleep a lot though (10 - 12 hours). I try not to nap because it tends to interfere with my ability to sleep at night. Instead, I meditate when I need to rest my brain.

In the end, I don't try to govern it as long as when I awake I feel rested, and the following day is productive.

A couple of other points that may have changed things for me. My MRI actually showed swelling in the ventricles 45 days after the accident, a fair amount of white matter (more than normal) in the right hemisphere, and I did some damage to the discs between C4, C5, and C6.

That said, I've gone from barely being able to function, not being able to speak coherently or spell, not being able to plan or deal with anything spontaneous, along all the physical stuff, to being able to work and have a relatively normal life in a fairly short period of time. What I outlined got me from where I was to where I am now. But, I'd still say anyone ready my post should weigh my statements against what others have said in this forum, the advice they are getting from their care providers, and of course what seems to work for them.

I wish you all the best.

This is fantastic. I wish that I had read this midway through my recovery--because that was the hardest point and when I was losing hope the most.

I have to honestly say that the psychological component is just huge in this. I became so discouraged and depressed, at about 6 or 7 months into my recovery, that my wife almost took me to the hospital--that's how severe my depression was. Now that I have been treated for the depression and anxiety, I must say that it was my last hurdle and that I am closing in on 100% healed. With that said--I know now that I will never be the same as I was. I will be better. Finally--mindfulness is huge in all of this, and especially meditation.

hello all,

happy to be contributing to this forum, xxl and seth both did amazing jobs explaining what to do/what not to do and i don't want to be repetitive. my situation isn't the same as everyone's obviously.
here's what i'll say writing from a place of hindsight.

1.) if you are troubled with severe vertigo, see a vestibular physical therapy doctor - FORGET your neurologist. the PT Doc will ultimately diagnose you, treat you, and you will get better. i've been seeing the most amazing doctor and she is helping me a TON with different exercises and things. if you find you feel more dizzy or more vertigo (two completely different things) after sleeping too much like i did...keep it to 8 hours.
***nausea trick - keep limes handy in the kitchen, whenever you feel that gross, nauseated, feeling like you need to spit about to vomit kind of thing, squeeze half a lime and drink the juice as a shot. helps me every time***

2.) if you can, take time off work. by the grace of god, somehow i got 3 months off from work. i thank my Doc for filling out the paperwork and HR for approving it, if i were to forget the supplements, the physical therapy, medications, and everything else - i'd just want the time to rest and HEAL. this time is so crucial, i wish i hadn't tried to push through...i waited 3 months to apply for a medical leave, imagine if i had applied right after the accident in august - i'm sure i'd be functioning at 90% now versus the 75% i'm currently feeling.

3.) don't let the memory issues mess with you. this was and sometimes still is, my number one problem. my memory is horrible now, things that happened 2 minutes ago feel like they were 2 weeks ago. even 4 months out, i still feel the same. i don't think my memory/sense of time has improved, i've simply gotten used to it. hopefully one day this will clear up, but i won't put money on it. you've just got to adapt. before i realized this, i was suffering with derealization/depersonalization, panic attacks, incredible anxiety - and for what? we all have enough going on already, plus the TBI/PCS, and now this? give yourself a break and only deal with the problems that you can solve...the memory, no one knows if/when/how this will be fixed, so i have had to...and i suggest you also, let it go.

4.) get blood going to the brain, there is something called graded exercise. the principal is that you have a new and much lower baseline of exercise, and you continue to improve upon that little by little. apparently it's helped PCS patients recover much faster than a group of PCS patients who did not. it releases endorphins, it is a distraction, and it'll help when you're at home binge eating because you're too afraid to leave the house alone or go to see friends, haha. don't push yourself too hard, go for 20 minute walks...or less! just get started.

a few months ago, i thought there was no end in sight. i became incredible depressed and was stricken with constant anxiety, crying myself to sleep for weeks. while it is important to stay at home, minimize stimulation, you also need to continue with your life and maintain normalcy. still see your friends, but opt for dinner and a movie - relaxing things. if you need to go shopping, go during on a weekday or earlier in the morning on the weekends when there are less people. write everything down, and just deal with it, you CAN handle this. once i told myself to stop feeling so sorry for myself, gained a positive attitude, it became a LOT easier to handle (hence staying at work for so long before requesting medical leave).

almost 4 months later, i am feeling much better. you will get there too. we may all NEVER return to our normal selves, but you WILL get better. take what you can from it. look at the pros - while heavily outweighed by the cons, and keep it moving.

from this experience:
-i've learned to be alone
-more organized as i have to write everything down
-the more i pay attention to my symptoms, they more they happen! funny thought huh!
-enjoying the simpler things in life
-realizing that i'm blessed to have those who helped me out through this in my life

good luck and hope you all heal quickly.

This is great to hear, Lily! I think the numero uno thing(s) for me were, like you mentioned--staying positive and also accepting my situation. Mark always told me that acceptance was the first step toward real recovery, and he was dead on with that. Also, and this might seem completely odd-ball, but I have allowed myself one drink a night--maybe 1 good beer or a glass of wine, and this had also really helped me. Just thought I'd mention. Cheers, and keep on moving in that positive direction, sounds like you are on your way to a good recovery and a full life again!

Seth8a,

Its really interesting what you mention about a small glass of wine or a beer. Alcohol for me has been one of my most anxiety inducing things since injury. I felt a lot better 3 months post injury and then went clubbing, drinking heavily with my friends, and going out on weekends. After about a week or two of that my symptoms came back and have been here to stay ever since.

I wonder now if my anxiety over not having a drink is almost counter productive and if I were just to relax and allow myself to have a little bit after work like a small glass of wine or like half a beer if that would get rid of that anxiety association and would let me just chill out about the whole thing. If you think about the amount of alcohol I am actually intaking with half a beer I can't imagine that the brain is going to be THAT sensitive to such a small amount of alcohol. Especially if I'm not drinking on an empty stomach or really quickly or something like that.

Have any thoughts on that?

I have been reading this blog ever since my 12 yr old son was diagnosed with PCS a few weeks after he got a concussion playing futsal 2/22/16. Head to ball, then head to head, then head to floor contact (he got headed on the back of his head). His first concussion ever.

I have a hard time talking about the last 11 months. I feel like retelling it is reliving it and it was just the worst thing we have ever been through. The reason that I am finally posting is because I want to share with you what finally helped him…

We live in NH and went through our local hospital originally. First we were told a week, then a month , then he started PT. He wasn’t getting better. He couldn’t walk down our driveway without turning red and getting a massive headache. If he closed his eyes, he would shake like he was having a seizure. He told me that he didn’t know where he was when he closed his eyes. His hands would get numb and he couldn’t make a fist when he was hungry. He could not track with his eyes. His head looked crooked. He would get car sick. He felt isolated from his friends and teammates and was very emotional.

A few months went by without any improvement (and with a few more head hits and trips to the ER from lack of balance). He got incompletes at the end of 6th grade because he could not do school work. He got migraines at school (2-3x a day only half days) and had a chronic headache 24x7 that he described as a level 4.

We tried a NUCCA doctor a friend referred us to. That helped his exercise ability tremendously and even reduced his chronic headache—he was able to swim this summer and was able to walk a mile because of this doctor. But he still had horrible balance and vision issues. He continued going to pt 2x a week making barely any progress.

4 months in, we went to a hospital in Boston for a second opinion. The doctor thought he may have had a hole in his ear canal, but a day at the brain injury clinic and then further hearing and balance testing revealed that was not true and the problem was a brain stem injury—he had problems processing the information from his body, eyes and ears. They told me he was the worst case they’ve seen in a long time, but not the worst case they have ever seen. That was devastating to hear because I didn’t really know that he was that bad—I had nothing to compare him to. Anyway, they told me that his current pt was insufficient and that we should switch to their pt program. But after a few weeks of doing home exercises they gave us, he was not really responding to it. Because of his reaction to a test at the brain injury clinic (it was a test where the doctor whipped his head side to side—brought him to tears and made his eyes glaze over), they sent him to their psychologist, who told him his concussion was healed. Umm, what about his shaking when he closes his eyes? “That must be from a different cause.” After all of that, that was the conclusion? His concussion was not healed--he still had almost all of the symptoms! I just didn’t understand and felt alone and hopeless at that point. I didn’t understand why they would give a kid who said the words jumped all over the page a 100 question written questionairre, then a verbal memory test on top of that. He told me that my son bombed the verbal test and suggested that some kids fail the test on purpose to not have to go to school. But my son was dying to go back to school. It didn’t make any sense. I wondered if the sequence of the testing could have anything to do with it. I am sure his brain was fried after filling in those little circles on the questionnaire. I had to actually help him fill them in toward the end because he got a headache. And the verbal test was after that. Why would they do that? A follow up with the initial doctor he saw there resulted in a suggestion that we not focus on structured eye therapy, and instead just continue with as much physical exercise as he can tolerate. Let play be his therapy. You know, pretty much what we had already been doing for the last 6 months. After all that testing, we were back where we started.

I knew from lots of reading that the right therapy early on can prevent long term problems. I wasn’t giving up. I already knew about functional neurology because of another mom in NH I read in a magazine whose daughter suffered for 2 years before finding a functional neurologist in RI. I talked to her many times and she was so helpful and we still talk. But moving to RI for a few months for therapy was not an easy option for us (I also have a 9 year old daughter). After lots of research, I decided I was going to contact Carrick. I read on this blog that some people have success with the program and some do not. However, I felt I had to give it a shot. I could not afford it, but I was going to find a way. I finally got up the guts and left them a voicemail… and never heard back from them.

In the meantime, I did more digging and found a local functional neurologist in Acton, MA (Dr. Carlson at ChiroPro). I came across a blog by another mom in MA—her son had a 70% success at Carrick and followed up with ChiroPro for the rest of his treatment. Our experiences with doctors in this area were very similar. She was kind enough to call me on the phone after I e-mailed her. She had nothing but wonderful things to say about ChiroPro. After I talked to her, I called them (Mary, who answers the phone answered all of my questions and did it with incredible patience and compassion!)

Dr. Carlson tested my son. A few days later, I went in to hear her findings. I was so scared and sick to my stomach. I felt like this was really our last hope and I was afraid she was going to tell me she couldn’t help him. She explained to me where in his brain his injury was (brain stem), what this area of the brain was responsible for and why it affected him the way it did. She told me that the problem with his current pt was that they were trying to get him to walk before he could crawl. She said she would like to have 2 weeks with him to see if he responds to treatment and if not, she would refer us out. We stopped all of his other therapies. We have never looked back.

Her treatment was nothing like the other places we had gone. It was one stop for everything. She is amazing. Her staff is amazing. She put the whole picture together and she knew what to do to treat each and every symptom. She showed me problems that he had that I didn’t even realize (like his shaking that she told me is called myoclonus--and he couldn’t lift his knee up without falling forward). She was confident, treated him like a person and truly cared about him. In just the first week, he was able to track with his eyes again. The next week he could hold his gaze fixed on an object while moving And it just got better and better from there. Dr. Carlson, Dr. Crifasi, Mary, Carol Anne and Tina all are wonderful. They are a great team. They saved my son. And saved my sanity. My son ended the first trimester of 7th grade on honor roll.

But, even better, on January 10th, he came running in to find me yelling “mom!”. He was holding his head and was in tears. I thought he hit his head again, but I tried to stay calm (a skill I’ve only picked up the last few months). He said “My headache is gone! It is just gone! I didn’t notice even notice until right now! ” Huh, it’s just.. gone? That’s it? It’s really gone?! He remembered having it the day before. That was his last remaining symptom (we were starting to believe he would have that headache for the rest of his life). There was a worry buried inside me that it would come back, but it has been almost 2 weeks now, so now I feel it is safe to write this.

On January 11th, 2016, Dr. Carlson wrote a note clearing my son for activity. Of course, now I am faced with a 12-year old boy who thinks he can do anything. But I’m not complaining about that. We’re just going to take it day by day.

I am still in disbelief that all of this happened.. like a bad dream. If you are suffering, even after years, call ChiroPro in Acton, MA . I am sure glad we did! Feeling grateful.