Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 06-23-2008, 02:59 PM #1
nomorecontact nomorecontact is offline
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Hi. I am 17 years old and am struggling with PCS. I had a concussion in 1997 while ice skating but the next day went on with everything. I had another concussion in 2004 mountain biking, but again, kept going with everything.

Over the years I have had more headaches than normal, as well as some migraines. But they have never interfered too much with my life. Everything hit the fan, though this past October. At a field hockey game-- the last one of the season-- I collided with another player and ended up on the ground. I got up, thought nothing of it, and kept playing. I didn't connect that fall to the problems I started having until January.

School started to become really difficult. The neurologist said I had an inflamed occipital nerve. Topamax didn't help the constant headaches. Steroids didn't stop the constant headaches.

After seeing lots of people and hearing all kinds of diagnoses my mom finally found a concussion clinic and everything began to make sense. I did IMPACT testing and the result corroborated everything I had been describing. My results were awful and the Docs said to cut out all physical and mental exertion. I started staying home from school on April 4 and just lying around the house all day every day.

Now it is almost July and my head is still hurting. I still can't read or do work. I still can't run or exercise and I will not be allowed to play field hockey this fall. I find myself just waiting for time to go by.

And that makes me more upset than any pain. I am 17 years old. I shouldn't be waiting for time to pass. How do you guys live that way?

My friends have not been very helpful. They rarely call and only occasionally visit. They are not there for me. I'm supposed to be working on college applications and getting ready to start this new part of my life but I can't do that because my head does not belong to me. I can't think without it hurting.

I am watching as I gain weight. I am watching as my friends go about their lives and can't make time for me. I am beginning to see my senior year of high school become unrecognizable.

I see you guys writing about 5 years of recovery, 7 years. I am stopping Amantadine and amitriptyline this week to begin with new meds. I am doing physical therapy for the pain in my neck and shoulders. I go for walks every day. But how can I keep having faith in this "no exertion" when I am not getting better. It has been 8 months and I don't know how much more of this I can do. This isn't living. I didn't even know when it happened. It was such a small thing.

I went to the Sports Concussion "Mecca" in Pittsburgh and they said because of my history of concussions and headaches the chemical balance in my brain was alreayd funky and so a small hit like the one in October was all it needed to be knocked completely out of balance.

I want my mind back! I want my body back! I want my life back. I want to live.

And my friends? I don't know if I want them back. How can I when they haven't been here for me at such a hard time?

The one thing that has kept me going is that I know it could be worse. I volunteer as an EMT at a fire station and I see people who lose their lives. I see people who lose much more than I have. Does that mean that I shouldn't even be writing what I have just written? What right do I have to cry myself to sleep and to be upset when I could be dead?

--E
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Old 06-24-2008, 11:19 AM #2
claybuster claybuster is offline
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Default Occipital Nerve

Quote:
Originally Posted by nomorecontact View Post
Hi. I am 17 years old and am struggling with PCS. I had a concussion in 1997 while ice skating but the next day went on with everything. I had another concussion in 2004 mountain biking, but again, kept going with everything.

Over the years I have had more headaches than normal, as well as some migraines. But they have never interfered too much with my life. Everything hit the fan, though this past October. At a field hockey game-- the last one of the season-- I collided with another player and ended up on the ground. I got up, thought nothing of it, and kept playing. I didn't connect that fall to the problems I started having until January.

School started to become really difficult. The neurologist said I had an inflamed occipital nerve. Topamax didn't help the constant headaches. Steroids didn't stop the constant headaches.

After seeing lots of people and hearing all kinds of diagnoses my mom finally found a concussion clinic and everything began to make sense. I did IMPACT testing and the result corroborated everything I had been describing. My results were awful and the Docs said to cut out all physical and mental exertion. I started staying home from school on April 4 and just lying around the house all day every day.

Now it is almost July and my head is still hurting. I still can't read or do work. I still can't run or exercise and I will not be allowed to play field hockey this fall. I find myself just waiting for time to go by.

And that makes me more upset than any pain. I am 17 years old. I shouldn't be waiting for time to pass. How do you guys live that way?

My friends have not been very helpful. They rarely call and only occasionally visit. They are not there for me. I'm supposed to be working on college applications and getting ready to start this new part of my life but I can't do that because my head does not belong to me. I can't think without it hurting.

I am watching as I gain weight. I am watching as my friends go about their lives and can't make time for me. I am beginning to see my senior year of high school become unrecognizable.

I see you guys writing about 5 years of recovery, 7 years. I am stopping Amantadine and amitriptyline this week to begin with new meds. I am doing physical therapy for the pain in my neck and shoulders. I go for walks every day. But how can I keep having faith in this "no exertion" when I am not getting better. It has been 8 months and I don't know how much more of this I can do. This isn't living. I didn't even know when it happened. It was such a small thing.

I went to the Sports Concussion "Mecca" in Pittsburgh and they said because of my history of concussions and headaches the chemical balance in my brain was alreayd funky and so a small hit like the one in October was all it needed to be knocked completely out of balance.

I want my mind back! I want my body back! I want my life back. I want to live.

And my friends? I don't know if I want them back. How can I when they haven't been here for me at such a hard time?

The one thing that has kept me going is that I know it could be worse. I volunteer as an EMT at a fire station and I see people who lose their lives. I see people who lose much more than I have. Does that mean that I shouldn't even be writing what I have just written? What right do I have to cry myself to sleep and to be upset when I could be dead?

--E
my wife has constant migraines caused by her occipital nerve. here is what i have learned in a search to help her. mayo clinic in phoenix is doing a study on a nerve stimulator that is in it's third phase. there is a doctor, neurologist Pamela Blake, in houston that uses a minor surgery procedure that removes the pressure on the nerve. i have given very short descriptions and would suggest you look into them.. maybe one of these may help... good luck
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nomorecontact (06-24-2008)
Old 06-30-2008, 01:32 AM #3
PCSMom PCSMom is offline
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Dear NMC,

I can hear your despair and frustration. The fact that there are people worse off than you doesn't mean that you have no right to be upset by your situation. It's REALLY HARD to live with PCS. And no-one understands it unless they or a loved one has been through it.

I'm writing to give you hope and suggestions. My daughter was slightly younger than you when she developed PCS at the age of 14 as the result of a series of sports and school injuries. Now, a little more than 2 years later, she is fully recovered. While I don't know if she's back to the way she was, she's regained her energy and vitality and is living a normal life.

What worked for her were: (1) Effexor (switched from amitriptyline because fewer side effects and lower dose) to help re-establish nerve pathways in the brain; (2) acupuncture to help with neck muscle tightness impeding blood flow to brain; (3) chiropractic also for neck tightness; (4) homeopathy; (5) osteopathy. Except for the medication, she didn't do these concurrently. Some things worked for a while and then didn't, so she moved on to the next treatment.

My point is, you don't have to just sit and wait for this to go away. There are things you can do to help the situation. While a lot of this is out of your hands, doing anything to help gives you some degree of control.

Also, regarding college testing and applications, you may have to delay these for a year while you recover. I know, I know -- it sucks, but you have to do what's best for your health. And just think of what a great college essay this will make

That your friends haven't been there for you is unfortunate. The only thing I can think of is that they're wrapped up in their own lives and can't relate to your situation. Even if you can't go out with them (my daughter had problems with this because she couldn't keep up energy-wise and was ultra sensitive to noise and light), can you connect via im'ing and Facebook? At least this will maintain some contact.

Hopefully, your family is there for you and watching out for your interests.

I wish you all the best and can't stress enough that this is not the way it has to be for years upon years. Good luck and let us know how you progress.

XOXO
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Old 07-04-2008, 09:53 AM #4
nomorecontact nomorecontact is offline
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Default dry needling

Thanks for your response! It is really nice to hear.

Not much has changed lately . . . I went off all drugs for a few days and then started Neurontin-- but had a very bad reaction to it so just stopped that. I am doing physical therapy and just started something called dry needling to work on some pressure points. anyone used that?

I will go on some different meds soon after the neurontin gets out of my system.

And friends . . . Things are better with some of them.

That's really good to hear that your daughter recovered! Very encouraging

Happy 4Th!

-Elsa
Quote:
Originally Posted by PCSMom View Post
Dear NMC,

I can hear your despair and frustration. The fact that there are people worse off than you doesn't mean that you have no right to be upset by your situation. It's REALLY HARD to live with PCS. And no-one understands it unless they or a loved one has been through it.

I'm writing to give you hope and suggestions. My daughter was slightly younger than you when she developed PCS at the age of 14 as the result of a series of sports and school injuries. Now, a little more than 2 years later, she is fully recovered. While I don't know if she's back to the way she was, she's regained her energy and vitality and is living a normal life.

What worked for her were: (1) Effexor (switched from amitriptyline because fewer side effects and lower dose) to help re-establish nerve pathways in the brain; (2) acupuncture to help with neck muscle tightness impeding blood flow to brain; (3) chiropractic also for neck tightness; (4) homeopathy; (5) osteopathy. Except for the medication, she didn't do these concurrently. Some things worked for a while and then didn't, so she moved on to the next treatment.

My point is, you don't have to just sit and wait for this to go away. There are things you can do to help the situation. While a lot of this is out of your hands, doing anything to help gives you some degree of control.

Also, regarding college testing and applications, you may have to delay these for a year while you recover. I know, I know -- it sucks, but you have to do what's best for your health. And just think of what a great college essay this will make

That your friends haven't been there for you is unfortunate. The only thing I can think of is that they're wrapped up in their own lives and can't relate to your situation. Even if you can't go out with them (my daughter had problems with this because she couldn't keep up energy-wise and was ultra sensitive to noise and light), can you connect via im'ing and Facebook? At least this will maintain some contact.

Hopefully, your family is there for you and watching out for your interests.

I wish you all the best and can't stress enough that this is not the way it has to be for years upon years. Good luck and let us know how you progress.

XOXO
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Old 07-08-2008, 09:52 AM #5
MargN MargN is offline
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Hi there. I believe dry needling is a form of accupuncture. It should help your pressure points around the neck/shoulder. So will physio. Over the last 8 months, your neck has likely tightened up quite a bit.

I am about 8 months after concussion as well, and what's working for me is understanding what sets off symptoms, and NOT doing those things. Always resting BEFORE I'm tired and pacing my activites. Because of my personality, I have to plan for breaks.

I worked with an agency to figure out my baseline for how much I can work, and how much exercise I can do (which was almost nothing to start with) and then am gradually adding a little bit at a time. I had to cut back initally. Also, the Effexor is a big help to me and physical therapy, especially neck stretching exercises. I'm doing desensitizing exercises too, to retrain my brain to motion. These are really helping me deal with travelling in cars, buses, etc and dizziness. Lastly, I'm working on relaxation exercises (deep breathing, etc.) to keep myself calm. I do believe I will get better now, but I sure can relate to your feelings.

Hang in there.


Quote:
Originally Posted by nomorecontact View Post
Thanks for your response! It is really nice to hear.

Not much has changed lately . . . I went off all drugs for a few days and then started Neurontin-- but had a very bad reaction to it so just stopped that. I am doing physical therapy and just started something called dry needling to work on some pressure points. anyone used that?

I will go on some different meds soon after the neurontin gets out of my system.

And friends . . . Things are better with some of them.

That's really good to hear that your daughter recovered! Very encouraging

Happy 4Th!

-Elsa
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