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Old 11-30-2012, 11:02 AM #1
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Confused new here 5 months since concussion

Hello everyone

This is my first post but I found the group a few months back. I have read some very useful posts and have enjoyed not feeling alone. I have not felt well enough to get my own words out until now.

About 5 months ago I was finishing up a 65KM holiday group ride with friends and my wheel hit the wheel of the bike in front of me. Down I went sideways and hit my head on the left side above my ear. Dented and cracked my helmet a little. I was totally fine though, aside from what I thought was a broken hand. I went to prompt care to have my hand looked at, it was just a bad sprain, and went home.

The next morning I woke up to my new world. Pressure in my head, confusion, noise and light sensitivity, crying, panic attacks, dizziness, nausea, and blurred vision. Went to the emergency and was told it was a concussion. CT was normal of course. Told to take a week off work but that it could be months to heal.

To try to shorten this up a bit, ater a month I saw a neurologist and told her I thought I was getting better (every day I seemed to say this for no reason? Denial?) so she said good and sent me home. For some reason my husband didn't say a word... like.... no she's not! I've been off work for 5 months and although I can honestly say there has been some improvement in 5 months I am nowhere near the person I was before. I was training for a marathon before the accident and now my eyes are so blurry I cannot walk without getting dizzy/disoriented. I ride a stationary bike now for 10 minutes a day. Big difference from my 65KM ride!

The biggest help I have gotten was from my eye doctor. After about two months of eye pain/blurred vision/light sensitivity I went to see him and he gave me eye drops that I use twice a day and they have made a world of difference. Especially with the sensitivity and pain. The blurriness appears to be more of a brain not reading what it's seeing problem and a tracking issue so I've been told to wait and time will heal this one. Anyone have any thoughts on that? I've been thinking I should see a neuro-opthomologist (sp?) to get this looked at more.

I am now seeing a neuropsycologist and I'm so thrilled I found her! She has recommended a vestibular physiotherapist that I will be seeing in the new year to work on the dizziness. I see an ENT in a couple weeks to make sure there's nothing else vestibular going on. I am meditating every day, a little excercise, eating as well as I can (I'm Vegan), taking my vitamins and getting lots of rest. I guess there's not much more I can do but wait! I've been told I still have a long way to go. Judging by how long it's taken me to get here I guess I have to agree.

I think the things that I'm still having the hardest time with symptom-wise is the sensitivities to noise and commotion. I sit in a quiet house all day and cannot handle social gatherings or even talking due to the noise. I've become housebound (not being able to drive doesn't help either). Will I even be able to participate in Christmas festivities with family or friends?

I think my biggest worry is that the "type A" me is gone and I will not be able to handle my fast paced, multi-tasking, "thinking" career ever again. The big joke about me was that I could hear a pin drop across the room at work and also that I could never turn my mind "off". Both those things have come back to haunt me now I think.

This is way to long. If you're still with me.. thanks for reading. I hope you are having a good day.
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Old 11-30-2012, 01:41 PM #2
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We are still with you. Welcome to NeuroTalk.

While 5 months may seem like a long time, in the world of TBI recovery it’s really not. Every brain injury is different and they heal on their own schedule. That said, we certainly must do what we can to help that process along. You seem to be taking all the right steps. In particular finding a good neuropsychologist is critical, so glad you found a good one. The vitamins are important, especially the B vitamins. I’m not sure how strict you are with your vegan diet, but fish oil is considered to be helpful; there may be a vegan alternative.

It sounds as if you are already making great progress. The “type A” approach may need to be put on the back burner for a bit, so you may either return to that pace later on, or you may find it satisfying to dial it back a bit.

My recovery took a while, but in some ways I think I’ve come out better at the end of the journey. I hope you find that to be the case in your recovery.

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What Happened: On November 29, 2010, I was walking across the street and was hit by a light rail commuter train. Result was a severe traumatic brain injury and multiple fractures (skull, pelvis, ribs). Total hospital stay was two months, one in ICU followed by an additional month in neuro-rehab. Upon hospital discharge, neurological testing revealed deficits in short term memory, executive functioning, and spatial recognition.

Today: Neuropsychological examination five months post-accident indicated a return to normal cognitive functioning, and I returned to work approximately 6 months after the accident. I am grateful to be alive and am looking forward to enjoying the rest of my life.
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Old 11-30-2012, 03:08 PM #3
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I know what you mean about telling doctors and neurologists that you think you're getting better. I always actually do seem to feel better while I'm in the room with them and then I later regret not telling them how bad it really is. I even have a list of things that I want to tell them and I just skip over some items since, at the moment, I just don't think they're so bad.

Hope you get better!
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Old 11-30-2012, 04:18 PM #4
peacheysncream peacheysncream is offline
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Dear cyclecrash,

I am sorry you are suffering. 5 months is a long time in the life of someones who's brain was so fast paced. I feel for you and am hoping you can get some emotional support here and some answers.

In GB we call them neuro-otologists. They are physiotherapists for the brain who specifically deal with dizziness and vision problems. I wrote the exercises in a post called "You may find this helpful". Look it up.

Overall I'd say for now you are under the right people. Keep in touch.
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I am a 36 yr old female who has played football, as a hobby, for 13 yrs. In July 2012, during a game I was slammed to the floor by two angry guys who hit into me so hard that one of them broke their ribs.
This knocked me back onto hard ground leaving me unconscious. I awoke to chronic head and neck pain, sickness and the inability to see or balance.
The paramedics made me walk to the ambulance, instead of placing me on a spinal board, where I was taken to the ER. I was hospitalised with suspected brain hemorrhage for 1 week, then on complete bed rest for 1 month, in a wheelchair for 2 months.

I have been left with PCS, moderate constant head pain, little short term memory, no memory of the accident, balance and sight problems, depression and exhaustion.
The worst problem is collapsing regularly. This has finally been diagnosed as Hemiplegic Migraines , these cause my brain to regularly shut down when I am tired and I then feel the full effects of a stroke (without the bleed on the brain!!) of which the symptoms last 2-4 days.
I have had 6 CT's, 2 MRI's and am under 3 specialists.

I believe everyday is one more towards improvement. Mainly I believe in the power of acceptance not the weakness of complacency or resignation.
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Old 11-30-2012, 07:47 PM #5
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Quote:
Originally Posted by Chris4329 View Post
I know what you mean about telling doctors and neurologists that you think you're getting better. I always actually do seem to feel better while I'm in the room with them and then I later regret not telling them how bad it really is. I even have a list of things that I want to tell them and I just skip over some items since, at the moment, I just don't think they're so bad.

Hope you get better!

This has me laughing so much!!! I almost always do this with my appointments.i am 11 months into my injury and this is my first time on here. Signed up because it was so comforting to know that I'm not the only one downplaying symptoms for some weird reason! Lol.
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Old 12-01-2012, 12:18 PM #6
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Quote:
Originally Posted by cyclecrash View Post
Hello everyone

This is my first post but I found the group a few months back. I have read some very useful posts and have enjoyed not feeling alone. I have not felt well enough to get my own words out until now.

About 5 months ago I was finishing up a 65KM holiday group ride with friends and my wheel hit the wheel of the bike in front of me. Down I went sideways and hit my head on the left side above my ear. Dented and cracked my helmet a little. I was totally fine though, aside from what I thought was a broken hand. I went to prompt care to have my hand looked at, it was just a bad sprain, and went home.

The next morning I woke up to my new world. Pressure in my head, confusion, noise and light sensitivity, crying, panic attacks, dizziness, nausea, and blurred vision. Went to the emergency and was told it was a concussion. CT was normal of course. Told to take a week off work but that it could be months to heal.

To try to shorten this up a bit, ater a month I saw a neurologist and told her I thought I was getting better (every day I seemed to say this for no reason? Denial?) so she said good and sent me home. For some reason my husband didn't say a word... like.... no she's not! I've been off work for 5 months and although I can honestly say there has been some improvement in 5 months I am nowhere near the person I was before. I was training for a marathon before the accident and now my eyes are so blurry I cannot walk without getting dizzy/disoriented. I ride a stationary bike now for 10 minutes a day. Big difference from my 65KM ride!

The biggest help I have gotten was from my eye doctor. After about two months of eye pain/blurred vision/light sensitivity I went to see him and he gave me eye drops that I use twice a day and they have made a world of difference. Especially with the sensitivity and pain. The blurriness appears to be more of a brain not reading what it's seeing problem and a tracking issue so I've been told to wait and time will heal this one. Anyone have any thoughts on that? I've been thinking I should see a neuro-opthomologist (sp?) to get this looked at more.

I am now seeing a neuropsycologist and I'm so thrilled I found her! She has recommended a vestibular physiotherapist that I will be seeing in the new year to work on the dizziness. I see an ENT in a couple weeks to make sure there's nothing else vestibular going on. I am meditating every day, a little excercise, eating as well as I can (I'm Vegan), taking my vitamins and getting lots of rest. I guess there's not much more I can do but wait! I've been told I still have a long way to go. Judging by how long it's taken me to get here I guess I have to agree.

I think the things that I'm still having the hardest time with symptom-wise is the sensitivities to noise and commotion. I sit in a quiet house all day and cannot handle social gatherings or even talking due to the noise. I've become housebound (not being able to drive doesn't help either). Will I even be able to participate in Christmas festivities with family or friends?

I think my biggest worry is that the "type A" me is gone and I will not be able to handle my fast paced, multi-tasking, "thinking" career ever again. The big joke about me was that I could hear a pin drop across the room at work and also that I could never turn my mind "off". Both those things have come back to haunt me now I think.

This is way to long. If you're still with me.. thanks for reading. I hope you are having a good day.
So similar to my experience. Sept 11' 2011. It does get better slowly, and everything you have written rings so true (type a, high functioning, social events, Xmas, etc.). I am still recovering and hope to see more of it. Spent last Christmas (and any other occasion when the house was noisy) in my bedroom closet on a mat on the floor. Only truly quiet place i could find in my noise). you may need a place like that. i decorated mine a Bit so my children would not be spooked. This Christmas I will be at the table!!! So there is hope. But it is a long lonely journey. You need to dig deep and rely on tha inner strength that you used in so many other life situations! Not easy to find some days. But it is there.

I made HUGE gains once I saw a neuro opthamlogist. I now have prisms in my glasses and do vision therapy. Much has improved. Sound sensitivity is getting better. I also do vestibular therapy.

A few great people in Toronto. I am in winnipeg...flying to an appointment there next week.

Send me a message if you want more info.

Hang in there. This is a major life challenge that has been dumped on you and you will handle it.
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Old 12-02-2012, 09:30 PM #7
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I am one month behind you and also deal with nausea/dizziness/and feeling off balance. I also deal with light sensitivity especially in stores (florescent lighting is a huge trigger for me). So.... I have become opposite at the doc. appointments.... I have become a SWEARER..... I have resorted to just telling them I feel like total sh%$!! I used to be a spinning instructor and a ran 25 miles a week and now I just walk a mile here and there .

I would love to chat more!!!.... I hope you had a good day today.
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Old 12-05-2012, 11:39 AM #8
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Default Thank you for replies

Thank you all for your replies, kind words and advice! It's hard to post on here because then you feel bad for not having the energy to reply back to people....

I think the thing I am finding the most frustrating is not being able to communicate with people. whether it be by phone, email, text or in person, I find it too exhausting and it causes setbacks. I LOVE to learn new things and talking to people is my favorite thing in the world because I get to learn what they know. I love some of the tips I've found (from Mark?) about staying in a corner of the room, only having one person talk at a time, etc. The earplugs tip is fabulous but I seem to have short ear canals (one is very short) and the earplugs don't go in far at all and keep falling out and look stupid sticking out of my ears so far. Any suggestions on this one? The wax ones don't show at all but don't block as much either. I have construction workers earmuffs for when I use the blender and food processor or if the house noise is loud. Those would look stupid out of the house though...

Every time I go a day or two or heck even a few hours feeling better I start to think... maybe I'm getting better. My neuropsycologist says it is very common in this situation and the running joke is everyone says... maybe now I'm getting better.. all the time. One of these days I'm hoping it will be true.

I still think maybe I need to see a neuro-opthamologist to help with the blurred vision/tracking problems. I see some people have had luck with it. Do most people find it helpful or is it another appointment where he'll say I'm perfectly normal and there's nothing he can do, it will just take time?

My next big questions for all of you are:
how do you deal with people/relatives saying that you look fine and acting like you're exaggerating everything. Whenever anyone asks me to explain what's going on, or I just try to tell them because I can see they don't believe me, I get anxious and then all the symptoms flair up and I don't explain anything properly at all because I'm so confused.

last question is: how do you deal with Christmas. My in-laws are 2 hours away and I think riding in the car with my vision/dizziness/sensory issues for that long will be the end of me, not to mention all the conversations once I get there. And then there's my side of the families xmas festivities to go to. Should I not go? Am I setting myself up for a huge setback here? I can't even have a half hour one on one visit with someone. I don't want to be setback months just because of Christmas.

O.k. those are your questions for the day! Hopefully when you're feeling well enough you can get back to me but no hurry!

I wonder if I should have started new threads for these..... still new here

Thanks
(just re-read my post and it jumps around a LOT ... sorry
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Old 12-05-2012, 01:30 PM #9
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The "you look fine" comment is very common. There is a 6 segment YouTube video called "You Look Fine" by John Byler. It is at http://www.youtube.com/watch?v=x9Xso...ature=youtu.be

It takes about an hour to watch all 6 segments. If you can get close family to watch it, it will be helpful. It addresses your issue exactly.

Regarding Christmas activities and travel. This would be a good year to tell everybody you need to stay close to home and out of the social situations. Maybe you can say your NeuroPsych says to lay low. It is just not worth the risk. If anybody complains about you staying home, suggest they watch the YouTube series. Tell them to just be glad you walked away from your cycle crash. Since you were in such a large group, the outcome could have been much worse.

Check out http://www.brainline.org/content/201...u-to-know.html
It also has good information.

Just know that you are not alone at having a slow and quiet Christmas. Many of us need to stay quiet.

My best to you.
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Old 12-05-2012, 03:52 PM #10
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I have mostly canceled Christmas here. Normally my parents come to visit and stay a couple days (I only see them twice a year) and I've asked them not to come. They came in May (my fall was in Feb) and I had major setbacks after their visit. They are very upset about not coming, but I no longer care.

I am not doing any gift shopping this year at all. We don't have any little kids in the family, pretty much all older kids and adults. I spent 2 hours and wrote 4 cheques for the older kids, that's all they want anyhow is $. Who knew writing cheques could take so long and require so much sleep after?? Turns out typing is way easier than writing with a pen.

My husband and daughter (24) are getting a cash budget that they can choose to spend how they want and they will go buy what they want. I won't be involved in that. They are insisting on me getting something, so I will online shop for myself and have it delivered.

Other people that we normally visit or exchange gifts with, I told we are not doing that this year, that I feel like crap and I just don't have it in me. Many are upset and don't understand, but I no longer care.

I'm just not doing it, period. I will likely cook a turkey on Christmas day for the 3 of us, big enough to feed us for a few days so that I won't have to do much cooking after that.

Not sure I'll even bother putting up the tree. If I suddenly get motivated and find the energy, great, if not, that's fine too.

I find it hard enough to get through what HAS to be done each day to keep my hobby farm going, all my animals alive and my family reasonably looked after. I just can't take on anymore, I don't have it in me.

I've never tried it before, but this year I'm trying to learn that "No" IS a complete sentence.

Starr
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