Don't tough it out. I'm a newb. Here's my story.
 

Hi!

I will try to make this brief as I am on a limited 'screen' regimen but really wanted to share.

June of 2012 I was riding my bike home from on our Greenbelt. I had a Trek Madone 6 series, purple, my race machine, and I was clipped in. It was a gorgeous day and I was so excited to spend the weekend with my step-daughter, who I refer to as my daughter, as my husband was out of town at a bike race. The air was light, the sun was warm, my face was full perma-grin. As I was approaching a tunnel, I began to slow behind a couple out for a stroll. I was near the yellow lines and probably going about 17mph- but yes- I was slowing down. A cyclist jetted through the stop sign at the side entrance to the Greenbelt, he was fast, out of control, and approaching me quickly. The pedestrians jumped out of his way leaving me. All I remembered next was his helmet hitting my face and seeing his sunglasses hit mine. I got knocked out before I hit the ground. I must have been out for some time as when some passer-by's awoke me, I was still clipped in, a woman was attending to my dress being further up than it should..., and the man who hit me was up, off to the side and attending to his bike. He did not come over, he did not apologize. His wife came to me and asked if I was ok. My first word, and I don't cuss, was the F bomb. I had a bloody nose, my left pinky was perpendicular to my hand, and my wheel was crunched. I was most upset about my bike. I got up, asked the man if I could help with his chain, thanked those who helped me I think, and rode my whakced out bike home. I got home my head was throbbing. My girlfriend came and took me to primary care. It was 6:50pm on Friday night. The PA on duty did not do a concussion test despite my story, despite telling him my head was in massive pain, despite my new double vision. He attended to my hand and seemed rushed to get home.

I did not was to get surgery so I emailed my Xray to a doc friend who said- nope, surgery. I ignored the double vision. I ignored the weird behavior subtleties, I ignored the headaches, I focused on my hand and despite being told not to ride, I rode my bike. I was surrounded by athletes who 'push through' get up and ride despite, tough it out. So that's what I did. I tried racing CycloCross that year. My energy was gone, my performance bad, my standings low. The headaches I experienced after each race left me in the car holding my head with my down jacket over my eyes. My cognition was starting to be noticeably different and my super social personality was departing quickly.

I changed the lights around at my work. I dimmed the computer screens. I ignored not being able to do the books, or put numbers in an excel sheet. I ignored writing break for brake, I ignored how long it took me to type an email and how I could barely look at the screen without getting massive head pain. I smiled, I nodded, but I could not communicate in a way I used to. Words were lost, math was gone, my brow became a forever furrow and the perma grin disappeared. The smile was a facade because is was the best position for my face to be in- I seemed to deal with the pain in that position, others made it worse. Listening to 2 conversations was a cacophony of sound waves and any sudden noise startled me. I became anxious. Really really anxious. I became self-focused and symptom focused. I went to a doctor finally, the same one from the accident.
"I have headaches and am really really fatigued" I said.
"Life is stressful, get used to it, here is some migraine medicine." That was it.

I lived thinking I was really stressed out for another 3 months. I could not organize. I could not plan. I could not think straight. I was getting worse. I went to a sinus doctor as the headaches and facial pain was excruciating, he said nothing there. I went to a naturopath who gave me herbal remedies, they didn't work. I went to an acupunturist, it didn't work. I flew to California for work to take a class- now 6 months after the crash. The flight was hell. Navigating the airport took all of my concentration. My dizziness was on high. My double vision was nearly double. My headache was painful. I tried to talk with the person next to me like I used to. It was so tough. I closed my eyes and prayed. At the class I thought I was having a hard time making friends. I rode a bike they loaned me so hard my headaches worsened. I pushed through. I did not notice how I could not understand what the speaker was trying to convey. It was too complex for me. I rode a 'pump track' and hit my head on the hard pack dirt twice. My thigh was black and blue and my head ached like nothing I had ever felt. I went to the ER straight off the plane when I arrived home.

MRI- clean, EKG- clean, stroke panel- clean, everything clean. I received a raise at work then missed 5 days. I could not understand what was happening. I was having seizure like anxiety. I was becoming a pain in the neck to my family. I went to the ER again- they asked if I had hit my head anytime in the past year. Ah-ha.

The road of finding the right doctors and rehab took me another year. Finally 24 months out with no change in symptoms, I had found a doctor and rehab center who got it. A NeuroPsychologist who said... 'yup, brain injury. PCS for certain". My new hypochondriasis had to be put to rest as I went through and told him why I had every personality disorder in the DSM-IV. He said, you have a brain bruise. He told me he could not tell how long it would take to recover but began treating it as if the accident had just happened. He made me take medical leave from work. Which is where I am now.

I am 2 months in and feel at times like a failure. The why has this taken so long really consumes me at times. The anger comes out at my husband and daughter and my daughter told me she avoids me and has pulled away from me. Awesome. My friends are supportive but living their lives- their lives that have moved, changed, and happened in the past 2 years. I feel aware finally, but scared, sad, angry, confused, and mad at this thing. I put a lot of stress on myself to heal. But it is slower than molasses. I am now trying to build my other neuropathways and am reading and meditating. Meditating is hard, I have not yet gotten to a silent mind as tinnitus, raging sharp jolty head pains, and pain upon deep breathing tend to take control of my attention. I am reading about attention it self and how to "Open Focus" it as the name of the book suggests.

I grieve. I sleep. I journal. I talk about it. I feel embarrassed that I have this injury and I feel upset that I am embarrassed. I feel upset that I get angry. I feel upset that my daughter is growing up and I am not a part of her world. I feel sad as I miss my husband-my best friend- my belay partner and stage race cycling travel mate. I miss racing. I miss working out longer than 15-20 minutes. I sleep, once again, I sleep. It seems to be how I cope, or avoid, or run away from the pain, as when I sleep I can't feel the pain. I have tried nearly every medication. Nothing has helped. I have tried cleanses and chiropractic care, to no avail. I have tried psychotherapy and sports counseling, I come home, forget the next day and remain in the same boat as before. I feel discouraged.

So far, Vision therapy, massage, craniosacral therapy, and Time Outs or Brain Breaks as I call them, are the only thing that has helped. I can't work right now and it saddens me. But I am trying to focus on the small little teeny tiny itty bitty things that show I'm progressing. That my brain was made to adapt and evolve and think outside the box to find solutions. I find hope that there is a ton more research about this condition filling up the newspapers and blogs. I find that if I can have a moment every once in awhile of 'me' the 'me' the True Self that I know and recognize- I know that I can harness that, think about that, act like that and hope to be that again. And I will.

Toughing it out wasn't the answer. "Acting" like I had no symptoms wasn't the answer. Pushing through wasn't the answer. Now I know and I wish I had know this on day 1 at 6:55 on that Friday night. Maybe had that PA been more versed in head injury medical procedures, I would have had that awesome weekend with my daughter sooner than what looks like could be 3 years later.

I joined up with this forum as my NeuroPsych asked if I had communicated with anyone with brain injuries, to show me that what I was going through was not uncommon. And to put to rest all the Brain Poison I would tell myself that this is Schizophrenia, or Multiple Personality disorder, or Borderline personality disorder, or Sinusitis, or a Brain Tumor. He said to talk to people about their experiences and hopefully I will find that extra bit of healing I need to feel that light on me at the end of this "Groundhog's Day" tunnel.

So hello people of NeuroTalk! Anything you can share with me. Any stories, or personal experiences especially with the brain fog, and emotional roller coaster, would help me so much. I will also share what has helped and also taken me steps back during this process. And thank you for reading! I hope I can someday lecture and go out and help people learn about this and help teach docs how to address early signs so people won't have to suffer for years with this debilitating injury. I just keep saying, injuries can heal, so fingers crossed mine does!

I have read a lot of books, so if anyone has any questions, when I am free to have 'screen' time again, I will be back answering your questions!

(I meant to be brief! Oops! hehe)

Welcome back.

That post was a lot of work. I finally made it through it even though I had to skip a lot.

My first impression is you are still struggling with horrible anxiety. Your focus on every detail is overloading to me. I can only imagine how overloading it is to you.

Are you receiving any kind of counseling to help you deal with your day to day thought processes ? It appears you are used to a very busy life. Letting go of a busy life, even temporarily, can be a big challenge.

What is your day like between your Brain Breaks ? How do you occupy your time ?

It appears you have discovered that the local Doc in a Boxes (Primary Health and such) are almost clueless regarding concussions. Some have just enough understanding to be dangerous.

btw, When you post, please limit your paragraphs to 5 lines or 6 max. It is difficult for many of us to follow from line to line when the paragraphs get longer than 5 lines. I am exhausted from trying to read your post. But, I made it through, even if I had to skip along.

My best to you.

I have to second Mark on this. You write beautifully, but I just couldn't make it through that much densely spaced text.

I also second the welcome. :Tip-Hat:

Hello ilikepolkadots,
Welcome to the forum. Sorry to hear about your accident. I can only say that we understand you and we are with you. I had similar accident where the concentration was on cuts on my hand instead of head despite of terrible headache.

This is great place to find advice from first hand experience individuals.
Hope you will feel batter soon. Take care!

Hi, ilikepolkadots!

I was a push-through person, too. My pushing through didn't last as long as yours did, though! I was only able to keep up with my daily activities for about a week after my concussion before I totally crashed.

I was fortunate that my doctor recognized the concussion and got me resting fairly early on, but the care I got other than that was very frustrating and incomplete.

Trust me, you are not alone. As you read the forums, you will see that many of us share (or shared) your symptoms and your desire to pretend that nothing is wrong!

It's a good place to get support and ideas.

Welcome to the forum!

Welcome to the group that none of us really wants to be "qualified" for! I was also injured in a cycling accident, was mis-diagnosed, tried to push through, and after 17 months, am still dealing with acceptance of my "new normal" but not giving up hope for improvement.

I think as athletes, we not only have the mentality of pushing ourselves and developing a high tolerance for pain (that sometimes masks serious injuries), but also find that when our ability to exercise at high levels is taken from us, we suffer more from the withdrawal, both physically and mentally.

Then there is the social loss - for 10 years my social life was built around the triathlon community, my vacations around the race schedule, etc. Some of my closest "tri friends" have disappeared, and I have to accept that those friendships were built around activities that I can't do now or that some people aren't comfortable with the new me - I think it's a too-close reminder of how vulnerable we all are out there, or they worry that I'll feel left out when they talk about their training and racing.

But I've also been surprised at some people who are there for me, and I appreciate and love them with a whole new appreciation for what it means to be a true friend. I also found a support group where people understand me, and I see a psychologist every few weeks - originally it was just a safe place to vent and cry, but after a few months, I'm more open to his insights.

I don't have any answers, but you are not alone. Hang in there!

That was an interesting read. I hope your 'lightning bolt' headaches and double vision have stopped, and you are recovering okay.

Have you tried any supplements? I am recovering from a second major set back and am fed up, so am using an antioxidant cocoa powder and high-dose vitamin-C each night before sleep. I had heard that it can help with tissue recovery, including blood vessels. I also try and have a low fat, high protein diet.

Get well soon. :)

Originally Posted by Mark in Idaho

btw, When you post, please limit your paragraphs to 5 lines or 6 max. I

-- Thanks Mark!! haha, I too had a hard time following my story on the computer. Note taken=)

Have you tried any supplements? I am recovering from a second major set back and am fed up, so am using an antioxidant cocoa powder and high-dose vitamin-C each night before sleep. I had heard that it can help with tissue recovery, including blood vessels. I also try and have a low fat, high protein diet.

-- I have tried the following supplements:

Gaba/Glutamate
Fish Oil
Vitamin D
Multi V
B12

I'm interested in the cocoa powder and Vitamin C. Can you send me some info on where you found that info?
Thanks!

[QUOTE=mdiane630;1108248]Welcome to the group that none of us really wants to be "qualified" for! I was also injured in a cycling accident, was mis-diagnosed, tried to push through, and after 17 months, am still dealing with acceptance of my "new normal" but not giving up hope for improvement.

I think as athletes, we not only have the mentality of pushing ourselves and developing a high tolerance for pain (that sometimes masks serious injuries), but also find that when our ability to exercise at high levels is taken from us, we suffer more from the withdrawal, both physically and mentally.

-Thank you so much for your support.

I completely agree that trying to accept your 'new normal' is quite hard to do. I keep thinking that I became that person and athlete I was with the same brain that I have now. And if I continue to focus on healing like I did on racing events, then I can know I will get better despite the injury.

Not exercising at that level is extremely hard. Getting fatigued after 15 minutes gets pretty frustrating. Have you found exercises you can do that you can sustain for longer periods of time?

Also, what is your supplement routine like currently?

The social thing is very hard as well. Thank you again for your candidness. What you are going through is exactly that which I am adjusting to currently. It's hard but there has got to be a silver lining in here somewhere!!

[QUOTE=Eowyn;1107404]Hi, ilikepolkadots!


Trust me, you are not alone. As you read the forums, you will see that many of us share (or shared) your symptoms and your desire to pretend that nothing is wrong!

Thank you Eowyn. I am very happy to have found a place to hear stories of others who are in the same recovery boat.

I'm curious, you mention in your signature a program by Dr. Nedley. Can you tell me a bit more about that?

Thank you and happy Post Turkey Day!

There is only a small part of cocoa powder that shows help for the brain. It is cocoa flavanol. M&M/MARS candy is working on ways to isolated and concentrate it for large scale production. Here is a link http://www.marscocoascience.com/cocoa-flavanol-advances.

You can get early versions of it as Cocoavia by Swanson and other brands on Amazon and such. It can be pricey.

[QUOTE -Thank you so much for your support.

I completely agree that trying to accept your 'new normal' is quite hard to do. I keep thinking that I became that person and athlete I was with the same brain that I have now. And if I continue to focus on healing like I did on racing events, then I can know I will get better despite the injury.

Not exercising at that level is extremely hard. Getting fatigued after 15 minutes gets pretty frustrating. Have you found exercises you can do that you can sustain for longer periods of time?

Also, what is your supplement routine like currently?

The social thing is very hard as well. Thank you again for your candidness. What you are going through is exactly that which I am adjusting to currently. It's hard but there has got to be a silver lining in here somewhere!![/QUOTE]


As athletes, we train longer and harder to improve, so going to the exact opposite where we need rest and patience is tough. It's hard to get excited about 15 successful minutes of exercising when it wears you out.

I had to quit looking at my old training logs and start from where I'm at. The old logs just depressed me, but the new ones help me to see my progress. It's still a struggle to accept it, but what choice do we have? I remember being excited the first time I swam 200 yards and a few seconds later I was in tears because I shouldn't be excited about 200 measly yards.

As you know by now, every concussion is different, plus the "extra" injuries complicate things. In my case, we learned that when my heart rate increases, my symptoms get worse. At first, the only exercise I could do was walking, very slowly, and if I went up even a slight incline, I had to stop and rest. Every few weeks we'd re-evaluate on a treadmill.

Over the last year, I've gone from being able to tolerate a HR of 90 to 150, but I'm more sensitive to heat. I could probably go longer on a treadmill, but I want to be outside!! My neck and shoulder issues complicate my attempts to return to cycling, but I've gone from being able to ride 7-8 miles to 20 miles before it's too uncomfortable. I'm facing shoulder surgery soon so will be putting my bike on the trainer, but it was important to me to face my fears and get back out there.

I started out doing my PT exercises at the gym after I was discharged. A PT friend who does training on the side helped me come up with a strength and flexibility routine, and that's been a lifesaver. I like the feedback I get - when I started I could lift x pounds or do x squats, and now I can do more, or it's easier, or I don't get as dizzy....

I'm following a lot of the supplement ideas from the thread on this site. I also tried something called Cellgevity that is supposed to help with production of glutathione which is supposed to help our brains. I took it for about 2 months and didn't see any benefits, and it was expensive so I dropped it. I have seen glutathione mentioned in a couple of other articles recently but haven't looked into it - the science confuses me and makes my head hurt ;)

Social stuff - I volunteer at a lot of races - it's hard sometimes because I want so badly to race, but I think it's good for me. I allow myself a few seconds to be sad that I can't race, and then suck it up, cheer for everybody, and try to encourage those who are struggling. I get dizzy when a lot of people are going by, so I have to work around it and sometimes walk away, but that's ok.

I joined a group called Team Red White and Blue (Team RWB) as a civilian member. Our goal is to help veterans returning from duty to assimilate back into society through sport and social activity. I've met some awesome people, and it's been interesting because even though I can't understand what they've been through, a lot of them totally get the PCS issues and are so supportive.

I also found a support group - most of the people had more serious injuries than I did, but they don't hold that against me. We meet once a month just to talk, share tips, vent, or whatever.

Sorry my posts tend to get really long - hope I didn't make your headache worse!!

Dr. Nedley's depression recovery program is a 10-day intensive in-house holistic program. What makes it especially appropriate for PCS sufferers is that he focuses on brain health. He incorporates nutrition, exercise, water (both drinking sufficient water as well as hydrotherapy), being outdoors, appropriate amounts of rest, music therapy, and healthy spiritual and cognitive practices.

He does have some books you could use to try to incorporate some of the elements of the program on your own.

Hope this helps! Let me know if you have any more questions.

Meditation Technique
 

Hi, Ilikepolkadots,
For different reasons I suffer from some of the same problems as yourself, although my first serious injuries were also caused by a bike/car accident. My double vision is caused by a brain lesion and headaches are of the Cluster type. I also suffer severe Neurological Hypersensitivity.
All this impinges on my ability to reach a relaxed, meditative state, but I noticed in your post that you are utilising deep breathing techniques which trigger problems. At the start of some Buddhist meditation classes one is taught simply to concentrate on your breathing while learning to empty your mind. Do not change your breathing pattern, listen to it and slowly allow it to become the background to your empty mind.
It takes practice, peace and quiet and commitment, but has kept me going through most of the darkest hours and has quelled the majority of anxiety attacks.
Good luck with your recovery.

Hi Eowyn!

I actually just got this book from the library- I'm trying to look through it and it's pretty similar to others I've read. I'm curious a if I'm missing something with the 10 day program. Can you msg me or just post here a bit more about it? Thank you!

As athletes, we train longer and harder to improve, so going to the exact opposite where we need rest and patience is tough. It's hard to get excited about 15 successful minutes of exercising when it wears you out.

I had to quit looking at my old training logs and start from where I'm at. The old logs just depressed me, but the new ones help me to see my progress. It's still a struggle to accept it, but what choice do we have? I remember being excited the first time I swam 200 yards and a few seconds later I was in tears because I shouldn't be excited about 200 measly yards.

As you know by now, every concussion is different, plus the "extra" injuries complicate things. In my case, we learned that when my heart rate increases, my symptoms get worse. At first, the only exercise I could do was walking, very slowly, and if I went up even a slight incline, I had to stop and rest. Every few weeks we'd re-evaluate on a treadmill.

Over the last year, I've gone from being able to tolerate a HR of 90 to 150, but I'm more sensitive to heat. I could probably go longer on a treadmill, but I want to be outside!! My neck and shoulder issues complicate my attempts to return to cycling, but I've gone from being able to ride 7-8 miles to 20 miles before it's too uncomfortable. I'm facing shoulder surgery soon so will be putting my bike on the trainer, but it was important to me to face my fears and get back out there.

I started out doing my PT exercises at the gym after I was discharged. A PT friend who does training on the side helped me come up with a strength and flexibility routine, and that's been a lifesaver. I like the feedback I get - when I started I could lift x pounds or do x squats, and now I can do more, or it's easier, or I don't get as dizzy....

I'm following a lot of the supplement ideas from the thread on this site. I also tried something called Cellgevity that is supposed to help with production of glutathione which is supposed to help our brains. I took it for about 2 months and didn't see any benefits, and it was expensive so I dropped it. I have seen glutathione mentioned in a couple of other articles recently but haven't looked into it - the science confuses me and makes my head hurt ;)

Social stuff - I volunteer at a lot of races - it's hard sometimes because I want so badly to race, but I think it's good for me. I allow myself a few seconds to be sad that I can't race, and then suck it up, cheer for everybody, and try to encourage those who are struggling. I get dizzy when a lot of people are going by, so I have to work around it and sometimes walk away, but that's ok.

I joined a group called Team Red White and Blue (Team RWB) as a civilian member. Our goal is to help veterans returning from duty to assimilate back into society through sport and social activity. I've met some awesome people, and it's been interesting because even though I can't understand what they've been through, a lot of them totally get the PCS issues and are so supportive.

I also found a support group - most of the people had more serious injuries than I did, but they don't hold that against me. We meet once a month just to talk, share tips, vent, or whatever.

Sorry my posts tend to get really long - hope I didn't make your headache worse!![/QUOTE]



oHmiGosh!! Our stories parallel so much!
I also volunteered at bike races but found it really depressed me though I was a cheerful cheer squad for my buds! It's so hard from going from winning events to being winded going upstairs!

I'm starting (finally with dr approval) to exercise again and am getting on a strength training program. I keep reminding myself that this is a new opportunity to start a program new but have all the knowledge from before! But it's hard!

How are you coping and what are your routines like?

Also my supplements are
Vit D
niacin- a lot! Like 2500-5000 a day
Nordic naturals fish oil
B12
Multi v
Potassium
Glucosamine
Looking into more amino acid building supplements at the moment and trying to get more info thanks to the vitamin supplements forum here=}

Love to hear more of your story and healing. pM me if you think of it!

Cheers

The 10-day intensive is just a lot more hands-on. You will get individual blood work done, have several 1-1 meetings with Dr. Nedley, and they guide you step-by-step through implementing all the aspects of the program and planning how you will incorporate it into daily life after you return home. Plus they serve really great food!

Hi, I pushed through for several years, and still do. Just a big lunkhead I guess.
I try to gauge the benefit vs the drawbacks of any activity before pursuing. You will definitely need much more rest than before, think of your condition like a serious broken bone that may require multiple surgeries and therapy over a long period of time. We can accept something like that as burdensome but necessary, so we need to view our head injury the same.
All the advice about anxiety is great, STRESS is the #1 trigger to worsen my symptoms. Try to find relaxing things, try not to worry, see psychologist that specializes in brain injury.
You will survive, you will endure.