posts on hope and healing
 

Please use this thread, to post success story's of your or people you know, or have heard about, that have recovered from TBI PCS to give hope and encouragement, to suffers and there family's

Thank You :hug:

Some hope
 

One of my husband's work mates was knocked out when he was playing soccer a few months back. He actually clashed heads with another guy. He suffered PCS for about two/three months afterward. He isn't one to get too in depth with personal stuff, but he told my husband it was one of most horrible things he has experienced.

He has fully recovered. :)

thanks
 

thanks niki I have asked the mods to make this a sticky so it will be at top of page for new comers to read

Richard Hammond. the Hamster fights back
 

the hamster is now doing more shows than ever my daughter loves his kids shows, and even top gear I think she thinks he,s cute really



http://www.timesonline.co.uk/tol/news/article646322.ece

https://www.express.co.uk/posts/view...-Hamster-back-

http://www.manchestereveningnews.co....interview.html

Great idea, Vini. I'm so grateful to now be in the position of giving hope and encouragement. You can check my previous posts, but the upshot is that my 17 year old daughter is now fully recovered after severe PCS. It took over 2 1/2 years and all kinds of treatments (Effexor, acupuncture, homeopathy, osteopathy) and she is now a fully functional high school junior looking forward to college and living a full, healthy life. This forum was a lifesaver for me during times of deepest despair. Hang in there.

Neurofeedback for treatment of TBI
 

Hi everyone,

I ran across this thread and thought I should throw in my two cents. If you, or anyone you know, has incurred a head injury and you/he/she is not recovering, I would encourage you to look into neurofeedback. You can just google it and find all kinds of information about it. If you live in a big city, you will probably have dozens of therapists in your town who specialize in this. If not, you can also do it remotely with specialists such as Dr. Victoria Ibric or Dr. Diane Roberts Stoler. My quick story is that I incurred 6 concussions while playing rugby in college. I have been doing neurofeedback for a couple of years to relieve symptoms and I have made great gains thus far. If you have any specific questions, just let me know.
Cheers,

Mike

Am starting to feel more like myself
 

Since having an all clear with the MRI and starting on Zoloft, I am starting to feel a bit more like myself again. I think that now that I have my stress and anxiety under control, I am allowing my mind and body to rest and recover. I have never been one to take prescription drugs easily, but I really do think that without the Zoloft I would have just spiraled into a very deep depression that I would not be able to get myself out of. At least now I have a bit of relief and a chance to recover.

Its been 3 & 1/2 months since my very minor head injury. I wish I started on this path 3 months ago!!

Cheers, Nikki :o

i very much appreciate all this hope and encouragement from all you guys. as a 17 year old and a sufferer of post concussion syndrome for almost two years it is giving me hope to just hang in there until it is all gone and better :) much thanks to you all!

-Kaylee

Stem Cell Therapy
 

Hi All,

I normally wouldn't divulge something like this on a public thread, but since we visit this to find solutions/success stories, I thought this would be appropriate. My story is the same as all of yours...multiple concussions, pcs, vertigo, sensitive head to bumps, etc., etc.

I have tried a lot of different theraputic techinques and all of them have been beneficial in one area or the other with the exception of making my brain more resilient to light bumps on the head or slight whiplashes, etc.

So, after a lot of extensive research and a lot of consideration, I decided to travel to China to receive stem cell therapy, which is where I currently am. And, by the way, you'll have to excuse me if this post doesn't read well, they have me on prednisone to suppress my immune system. Prednisone, if you aren't aware, is notirious for turning "normal brains" into "fuzzy brains." Anyway, it is too early to tell if anything substantial has happened yet. The docs say it can take between 3-9 months to get the full benefit of the therapy because that is how long it usually takes for the implanted cells to take root and divide. The cells also contain growth factors that naturally induce your own stem cells to begin repairing brain tissue, which also takes about 3-9 months to happen. There have been some improvements, but I want to wait until the 3-9 month mark before I make a final verdict (plus I'm also on other medication the docs here prescribed for me).
So, I just thought that I would let you all know that this is another, albeit extremely expensive and very experimental, option for us in our roads to recovery.

Also, I have learned about a couple of drugs on the market that are used in Europe and Asia very consistently to treat head injuries. Loads of research has been done on them and the results look very promising. The drugs are: Oxiracetum and Cerebrolysin. Just run a simple google search and you'll find tons of info on them. The docs here put me on Oxiracetum for the first 3 weeks and I am currently on Cerebrolysin. The Oxiracetum made a huge improvement, and I'm still waiting to see what the Cerebrolysin does. However, take this with a grain of salt since it's hard to tell what is going on since I'm on the prednisone. Well, thought I would just let you know about the three new treatments I discovered. If anyone has any questions, let me know and I'll somehow get you my email backchannel.

Thanks,

Mike

You Can Get Better!
 

After "lurking" on the board - and seeing all the negative information - I felt compelled to post. After a slip and fall at the airport 3 years ago, I struggled with horrible post-concussion syndrome for 13 months. After which - I made a FULL recovery. Six months ago, I banged my head on a radiator (freak accident) which again caused post-concussion syndrome. During both episodes, I visited the best doctors NYC has to offer to no avail. Time was the great healer - and I am again fully recovered. Folks who "get better" go off this board- but most do get better! I am happy, healthy, extremely high functioning married 36 year old woman with an MBA - and I got better - twice! There are obviously circumstances contrary to this, but to all newbies - you will recover.

Are you in Beijing?
 

Hi Mike,

I was in Beijing 2 wks ago visiting the Beijing Tiantan PuHua Hospital regarding the use of stem cell for TBI, MS and Parkinson. We you in the hospital at that time?

Dr. Diane Roberts Stoler

You missed me by a week. I left on June 20th. Out of curiosity, what did you think if the place?

Mike

Results from 1st mTBI & PCS conference-Vancouver
 

I attended and was a speaker at the 1st International conference on mTBI and PCS in Vancouver this past week. There was some exciting news for hope of recovery. Key factors are getting restorative sleep, exercise, nutrition and diet, attitude and use of proper diagnosis using some excellent imaging techniques, such as SWI MRI and PET Scans, of course funds for treatment ( healthcare-which has affected all of us) and the use of neurofeedback and biofeedback for recovery along with grieving the loss of your prior self.

I presented my recovery story and how hope and grieving are essential factors of recovery.

Once I get over my jet lag, I will be writing more on my blog on **

As a survivor of a stroke and 3 Traumatic brain injuries, I can attest there is hope. My focus was we might have a disability is some areas, we just need not be handicapped by them. There is a Way.

:winky:

Many of the oldies know me. And I am still around to try and answer questions. But my story hasn't ended to the degree we would hope.

But lots of my TBI and PCS has gone away, but I'm not sure how many
I've had. I really had no clue as a yound adult that I was suffering from
these at sometimes. I can count at least 7 times that I've suffered these
in my years.

Each time the recovery has been longer, and less is back to the same. But
to know that it will get better, is a saving grace. I know that headaches
and whiplash are always connected. But the rest is what ever choses to
come.

Having gone through some vision retraining has helped to lower the amount
I have to look forward too. Thankfully I located this doctor and he not only
took away the migraines but also helped with a reaccuring problem.

There is always hope.

Donna

Neurofeedback Advice
 

Hi Mike,
I am just about to start a course of neurofeedback for Post concussion symptoms resulting from a car accident that I had two years ago.

Questions:
1. How can you tell if it is really helping? I was told by the therapist that sometime you feel worse in order to get better and other times you feel better. This sounds like covering your bases.
2. How long did it take for you to start feeling better? In other words: How long can I expect to wait before seeing results?
3. What sort of neurotherapy did you have? I am going to start with LENS but there are other typse available. What are the pros and cons? What worked for you?

That's about it. I'm sure there are other people out there considering neurotherapy, so I think that your answers might be of general interest.

Thanks.

13 yr OLD BOY MUCH BETTER AFTER 11 WEEKS
 

I wanted to post this to offer support to all those who are going through what my son dealt with this Fall. After accidentally hitting his head on the ground during football practice, my 13 yr old did n;t tell anyone for 24 hours until his headache was so bad he couldnt read or tolerate light. He was diagnosed with a concussion and told it would clear up in 1 -2 weeks. Well after two he was still home from school and still unable to read or tolerate light or noise. It was terrifying and isolating. We lived like ferrets underground with the lights off and I would read to him by flashlight.
Slowly the headaches diminshed, they would re appear if he read or watched too much tv. No computers. Car sickness. No school work. After six weeks he still had lingering symptoms, though improved. It took a total of 11 weeks for his symptoms to disappear. We still have anxiety they will pop up, but he can finally run and jump and seems to be clear.

Find a good doctor, one who can administer the IMPACT test, an orthopedist, not necessarily a neurologist, who may not ahve experience with athletes.

Make sure to be evaluated for vestibular damage as well.

My son didn't like the elavil, it worked on the headaches, but it made him feel sad and out of it, so we dropped it. But it works for many.

Be patient.

newt,

What value did you find in the ImPACT test? Did the doctor use it to determine a treatment regimen?

Has your son has any imaging done?

Has he returned to play?

Donny Winn website
 

Donny himself is interesting, atleast to me because I see some correlation in my experience. There are also a lot of good links to helpful info. Thought it might help someone. There are also people who post there with PCS.

www.donnywinn.com/

1st mTBI & PCS conference
 

I'm just glad that there was a 1st mTBI & PCS conference.
But then I thought, "The First! There has never been a conference on this subject before!"
Seems incredible, seeing so many people are affected.
About time.
CS

Thanks for posting your positive outcome. Im wondering what type of symptoms you had and how severe your pcs was. I have it as well and it is not fun to say the least. Glad you had such a positive outcome. Hope mine is as well.

Someone who has recovered
 

Well done, Oakland, on being one of those who has recovered and come back to tell us. I believe that most people do recover from postconcussion syndrome. Of course, recovery is likely to depend on the extent of injury and on age. It is nice to know that some people do make it though! :)

Hope is a good thing! I am ~six months into PCS. I am finally starting to feel a little better, my brain seems to be working better (still not normal, but better), I have a bit more energy, headaches are less frequent and severe. I am starting to believe that I actually might feel moderately functional again someday. I've tried to rest as much as I can (I'm a stay at home mom with 3 kids who I home school), take recommended supplements and avoid situations and places that make me feel worse (I still don't do well at all in crowded, loud situations or when I have to stand around and talk to people). I'm still having problems with dizziness, nausea, ear and eye stuff but I am feeling enough better to feel so HOPEFUL that I wanted to post this.

Mike,

I to am interested in your thoughts about neurofeedback. I'm six months PCS, and am now just scratching the surface on information out there. Before I was feeling way to overwhelmed with symptoms and was told the only way I am to get better is to have complete cognitive rest. I am SO GLAD I found this place. I've only been a member for less than a week, but I cannot tell you how theraputic it is to hear that people are going through the same thing.

How did you get a concussion? What were you symptoms? What exactly is neurofeedback? I plan to do some research on it, but I'd like to hear first hand from someone whose done it.

Thanks for your post.

Erica

I don't think Mike posts here anymore. If you look back through his posts I'm pretty sure you'll see some posts regarding neurofeedback. I think it helped him a lot.

I'm currently in Vancouver visiting. Tomorrow I head back to southern Oregon... tonight I sat up seeking ways to help myself regain/find what has been lost thes past 8 months since a wind gust pulled a tree off the side of a cliff and onto my head. Before PCS devasted my day to day life. Do I press on, forcing myself to try and do as much as I use to? Do I slow down or stop and let my brain regroup? Take meds? Take nothing? I'd just like somebody who's been here to give me counsel...

my real life hero who gives me hope
 

My friend Suzette Allen (google her) suffered a tramatic brain injury 21 years ago, as a result of an auto accident with a bull moose while driving in Alaska. Her head was crushed and the bones in her face were shattered and had to be wired back together...many surgeries to reconstruct her nose...but the worst part was brain damage. It took her 8 years total to completely retrain her brain to be able to do all her previouse activities and relearn emotional and cognitive functions. "It was a very long, dark road with much depression and confusion! But there is hope, no matter how bad things look, no matter how far you've slipped and how much damage you have done or has been done to you! Today I am completely whole and successful person and actually teach Photoshop for my living along with photography."
Suzette travels the world teaching and unless she tells you her story you would never know that she had to relearn almost everything or that she had huge issues that forever changed her life because of PCS. I am lucky to have her in my life and to be able to call her any time. Its nice to have some one who understands and tells you it will get better because they are living proof even when you cant believe it for youself.
And you really should Google her and look at her work its amazing - life after TBI!

Thanks for this post! I am also recovered from a major concussion (it took 6 months). I suffered everything from throbbing migraines to vetigo to depression. It is great to hear another positive story. I find it is easy to get lost in some of the negative posts on this board. There is hope and you will recover!

Carmell

Mike, I don't know if you are still on this forum, but wanted to find out more about this. Was it neurofeedback specifically that you had, and if so do you know which type? I am in the UK so this is less available here, but there is one guy who offers LENS neurofeedback, is this the kind you had? Did it make you feel better from the beginning or did you experience fatigue in response to the treatment? Thanks,

What does it feel like to recover?
 

Does it happen symptom by symptom? All at once? Very slowly? I'm 8 weeks and still feel like the whiplash/concussion happened last week.

Feeling like yourself again
 

Thanks for your post Nikki. I am really confused about the concept of "feeling like myself again" since my concussion in a ski accident on March 10th. I work full time and found that I can be fired for medical reasons after 120 days of job protection by law. I have been more than motivated to recouperate and have hired a team of Dr.'s and clinicians that specialize in brain injury and am taking a host of meds due to my fear of losing my job. I have been feeling better, but was shocked at the meeting of my experts that the neuropsycologist said that "we" will have to see what kind of person you become. When I began to cry he said that he hoped I didn't think that I would be the same person I was after going through an experience like this. I agree with him now as the trauma is more than I have had to deal with. I am learning new coping skills and ways to live my life without sports or physical excercise for now

What I do want to feel is healthy and energetic again that would be like I used to be. I don't care what kind of a person I become (not mean I hope) as long as I am rid of the sickening headaches, nasea, fatigue, confusion and lonliness.

Hope?

Proverbs 3:5-6

Thank God for His faithfulness.

Dear Sturgeon,

I am wondering if you heard my jaw hit the floor when I read that your neuropsychologist said that "we will have to see what kind of person you become"? The lack of compassion in that statement is horrible to say the least and his follow-up explanation was even worse. I am so sorry that you had to go through that. That is not helpful at all. Your doctor should be supportive and not bring you to tears.

Anyhow, it only half surprises me because many just don't get it. My daughter has PCS and it still amazes me to hear some of the things people say to me and her.

You have every reason to feel optomistic and to believe that you will return to the excercise, energy, and things that you love. It is still very soon after your accident and you are healing. Be kind and patient with yourself. You have been through a lot and your body is recovering. It will get better in time.

over my head by Claudia Osborn
 

I am reading a book called:

over my head by Claudia Osborn

It's about an MD who is diagnosed with a concussion and PCS after an accident with nothing showing up on her MRI or CT Scan, like so many of us!

The very good news is that she eventually heals enough to return to work after four years of recovery and rehabilitation. (My stepmom told me what happens to bring me some hope; she already read it!)

It's an inspirational book so far and just wonderful to read about some of the details of her experiences because I can *so* relate!! (Luckily, my symptoms have finally reduced their intensity enough to allow me to read it, albeit in pieces, now.)

I'm getting better, it's been ten slow months, but I hope to post here someday with my own story of a full recovery! :)

There IS Hope!!!
 

I would just like to share with you that a dear friend of mine suffered a severe tbi 10 years ago. She was affected so badly by this that she forgot how to drive and completely forgot everything about the life she had before. Now she is driving, typing, and has made a great life for herself. Just know that there is hope in any situation. It just takes action a prayer, faith anf patience. My thoughts and prayers go out to everyone out there.

~Jenna :hug:

I'm glad I thought to look for support groups, I banged my head and had staples just about a month ago. The ER doctor didn't do any imaging, told me she didn't think there would be any concussion. Well THAT was wrong. :mad: Three days later after feeling somewhat OK I got severe severe dizziness, sleepiness, nausea...and I have vertigo already, I can tell you THAT dizziness was much worse than my usual. After I went back and got a clear CAT scan and a diagnosis of concussion I took two weeks off from school and felt better when I went back. Then after about a week the dizziness returned, the nausea, the headaches, anxiety, mood swings, forgetfulness, I was having panic attacks because I didn't understand how this could be happening..I was going through my final testing to be a nurse's assistant which involves some lifting and critical thinking and to be honest it was 3 days of hell. I just barely passed a course which should have been easy for me. :Sob:
Now I've just finished yesterday and I looked around and saw that I had post concussion syndrome and that it takes time to go away. But my secret fear has been that I will never get better, in fact that I will just get worse and worse until I'm demented...not knowing much about what's happened to me. But I'm almost in tears here to see other people saying that yes others have had it and have fully recovered, even if I'm sincerely praying it doesn't take 2 years......BTW what do you do with yourself if you have to live this way for 2 years??

I've always wanted to post in this thread. Now, I think I can. I'm a 28 yr old male in good health. On May 27, 2011 I sustained a mTBI. I was trying to break up a fight and punched 3 times in the head. Immediate symptom was feeling very dizzy. For the rest of the day I felt dazed. Taken by ambulance to hospital. No imaging done.

The next day was when pcs hit full force. I had HORRIBLE fatigue. I slept the whole day. I was very nauseous. My vision was off (things appeared smaller as if I couldn't focus properly, which was by far my worse symptom). I didn't have bad headaches although they were present. No dizzyness, but I was always sleepy.

The next few days I had HORRIBLE insomnia. I woke up every 45 minutes of the night. On top of that I was always sleepy. I stayed in a dark room all day. Depression set in. I thought that my life would suck forever and I'd always have these symptoms.

I read Mark In Idaho's posts of how important nutrition and rest were in the healing process. I bought a high potency fish oil supp from GNC. I also took Vit. D and B 12 supps. I ate 4 whole eggs each day and one serving of pasta. Eggs have high levels of B12 and choline. Pasta contains high levels of folate i believe.

About 2.5 months I started to see recovery. My sleep came back just like that. My eyes also started to focus and I could see things the way I saw them before (my biggest relief). The fatigue also went away. Today I can lift weights, read for hours, play video games and not get any symptoms.

Btw guys, neuros and GPs are useless when it comes to mTBI. Mine did absolutely nothing but listen to my story and nod his head. He told me I'll be fine and 100 % better in no time.

Today I have almost no symptoms. However, I do notice every now and then I'll fumble when typing. Before the concussion, I was very good @ typing on a keyboard, rarely making mistakes. Sometimes I stumble over words when talking, although this is also rare. In addition, it has left a psychological scar on me that I don't think I'll ever be able to shake. Every now and then I worry about the fact that having a concussion puts you at a higher risk for alzheimer's and parkinsons.

I do believe that something good came from all this. The first few days I was very depressed. Lol I even cried a few times. I got on my knees and promised God that if he healed me, I would serve him until I died. Today, I feel as if I am back to my old self. And that promise haunts me constantly. Before, I lived a pretty carefree lifestyle. Today, I am a better Christian. I feel in my heart as if a divine power had something to do with my healing, (although most neurologists would disagree) :winky:.

My best to all of you.

Can you tell me more about the "alternative" treatments (accupunture, etc.) and how they were used and if they were sucessful? My doctors keep talking about them in encouraging ways, but when I press them for details or referrals, they seem to run for the hills.

Healing
 

Hey friends, I am new to this board. I have been going through PCS for almost a year now (March 3 will be the anniversary of the day I hit my head). I am a preacher so this has really shaken me and has utterly brought me to the depths of despair. It started a week after I hit my head. I would describe it as hell on Earth. I had extreme anxiety, depression, migrane headaches, OCD, confusion, no good feelings, and horrible thoughts. I had the words of Jeremiah the prophet,"Cursed is the day that I was born" in my heart. It got so bad that this past month I almost died. The doctor told me on February 1, 2012 that my body entered flight or fight mode, 24/7, even when I slept. He said that I had to literally reverse the chemicals in my brain, regenerate dead brain cells and neurotransmitters. However, he did say that I was going to live and talk about this one day. They wanted to put me on prozac, but, I did research on it and decided not to. I was at my wits end and last hope. I decided to do my healing the natural way. I stopped eating fast food, processed food and red meat. I started eating everything organic and researched brain super foods that brought healing to the brain. Within three days, I saw a significant difference. Then I added all natural raw milk to my diet. I read that raw milk is actually nature's perfect food and regenerates brain cells. You just have to find a farm that has a license to sell it. Just a few days after that I had everything get better. I also added working out to my regime. The brain needs blood flow to heal so working out helps alot. I also only drink Alkaline water. I am taking Beyond Omega-3 Better brain Vitamins from Garden of Life, B-complex and St. John's wort. I also take RAW Meal Supplement by Garden of Life. I am now on day 28 of actually doing something to get better and now everything is getting better. I am dealing with the OCD part of this still, although it has slowed down tremendously. I know that I am going to get fully healed in the next month. God is faithful. I thank Him for showing me the way to get healed.

Your diet has a huge role in your healing. Many of the processed foods have chemicals in them that alter and damage brain function. Stay away from things with MSG and high-fructose corn syrup. Really, anything artificial well not do well for your brain. Anyone who has an ear let them hear.

I am not a doctor. Just one who seeks the truth in everything and a fellow sufferer of the horrible post-concussion syndrome. May Christ be with you in the time of sufferings.

Doing much better
 

Hi all-

I posted in a thread a few weeks ago "When should I resume activity" where I explained my situation?

Since then I have made a rapid recovery and am almost back to 100%, both at rest and with activity, almost 40 days after my concussion.

I know that my situation has not been as bad as many of yours' but always remember to keep hope.

Research, rest, research, rest.......... answers will come.....
 

It does get better!!! My symptoms are all related to my eyes.

I did extensive research all over the internet to find a answer. I figured if I could solve the problems with my eyes the rest would take care of itself.

I found a site on photophobia and PCS. I contacted the individual that posted the information. He e-mailed me back and referred me to individuals that did similar work. After 5 months of questions, a few conversations, a little persistence, and some humility by not demanding help, just asking for help, I was able to get a binocular eye exam.

They placed prisms in my glasses and 10 days later I actually have periods in a day without headaches. I have to rest when they act up and be smart about what I do, but it is getting better - Finally Relief!!!!

Don't give up, the answers are there on forums like this and all over the internet, just have to be persistent and patient - it does work itself out once you find the answer that works for you. The key is what works for the person because no one is the same. Figure that out and you start to make progress.