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

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Old 10-30-2013, 05:43 PM #1
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Default I Need Your Help Everyone

the gabapentin is not working 300/day, i broke down crying really hard just now...i feel i will die from this condition the headaches are destroying me...my young son saw the whole thing, i truly believe i will not make it...what do i do? I dont want to die, not now...i have a family...please i need ur help!

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Old 10-30-2013, 07:30 PM #2
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Default Hi Ed

I am sorry you hurt like you do. I am glad you reached out. It is so easy to get despondent when physically you are having a ruff time . Maybe it is time to seek your doctor, and really let him know what is happening to you. Don't give up. Go to the ER if you have to. TBI can and does get better in time. So many here on NT say that symptoms do get better. I know what it is like to come unglued. Sometimes the medical conditions we suffer, get the better of us. I think it is mind over matter. Do some good thing each and every day. One thing you like, a moment, a prayer, reading a book. Something that makes your day better. Focus minute to minute if you have to. Your child needs you, You need you. Find the direction you must to make your life better. Do seek help if you need it Ed, and know that you are not alone. Mark From Idaho, is a TBI injured person here, and very very knowledgeable about this condition. don't hesitate to contact him. He may have useful information to help you. I have watched his posts for several years now, and he usually can find something that may get you on a better track. I will be here to talk to. I do care, and I will keep you in my thoughts and prayers. ginnie
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Old 10-30-2013, 07:46 PM #3
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Ed,

Calm down and know that things are going to be okay. Being as upset as you are is not going to help you, and you must trust that it will be better if you try to calm down. Do whatever you need to do to make sure you can rest tonight. Tomorrow is a new day and you will find new strength to work on this a little bit more after rest. Each day will get a little better to deal with if you take it slowly, working on something each day little by little. Tonight your task is to calm down and rest. This will take time, a lot of time, but you have the mind and will power to do it but you have to break it down little by little.

As Mark said Gabapentin at 300 mg is not much. It is how much I take. My neurologist thought that it would not be enough and she told me to double the dose if it didn't work. Did yours tell you that? Can you double it or can your wife or son call your doctor on call to see? Is there anything else you can do to calm your nerves right now? If there is, do it or ask for it.
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In July 2013 ran into a metal bar at a playground, remained conscious. CT normal. Headache subsided after a week. In August woke with thunderclap-type headache in right side of head, right eye was droopy. Ever since had electrical-type pulsating all over when falling asleep and during sleep. Strong muscle twitching occasionally. Chest pain in heart region, front left neck region, and left shoulder. Strong heartbeat noise in head and occasional weird noises in ears. Taking Gabapentin to control nighttime nerves. Other symptoms: anxiety attacks, goosebumps, fine motor coordination problems, sleep apnea, headaches/migraines, fatigue, unclear thinking.

Update as of Jan. 2015 - almost all symptoms gone except for some tinnitus. Taking good care of myself except sometimes when I overdo it.
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Old 10-30-2013, 09:04 PM #4
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Ed,

I'm living that life right now.

I've been diagnosed with cervogenic headaches, vestibular migraines, and occipital neuralgia.

I've been on topamax, had two rounds of nerve blocks, and am on keppra now.

Topamax didn't work, nerve blocks lasted 4-6 weeks each time. Keppra, I don't think it's working.

I am the most pain free today than I have been in mooonnnttthhhssss. Yesterday I felt the same as you. My shooting pains are getting worse as the night goes on.

I use rubbing alcohol and water ice packs triple bagged. Heat does not work for me. I sleep when my brain tells me to. I also see a PT for my neck.

Tom. I see a pain management dr. I can't wait. Everyday is a headache, it's levels shoot up and down. I've had dark thoughts and its scary. Head pain is unlike any other pain because we use our mind to think. I don't have an answer but I can relate and I hear you. I'll post what the doc says tom.

Get to a doctor ASAP. Keep us informed.

Peace and healing,

Jace
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.


*TBI with mild to severe damage November 2012 from car crash. Stroke with hemorage & 4 clots in veins in brain Feb/Mar 2015.

*Vestibular damage, PCS, hypercusis, severe visual processing and tracking issues, short term memory loss, headaches/migraines, occipital neuralgia, cognitive issues, neurological issues, brain fog, brain fatigue when over stimulated, twitching, vertigo, neck issues, nerve issues, PTSD, personality change, Since stroke left side weakness, rage, worsening of vestibular problems, recall, speech, memory.

*Can't drive or work. Have done occupational therapy, cognitive therapy, physical therapy. Learning work arounds, and strategies to be competent in daily life. Change your attitude/perspective changes your life. As TBI survivors this is a vital part of our healing and living.

*Working on getting to know and accept the new me.
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Old 10-31-2013, 12:10 AM #5
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Ed...I was like that and feel so much better now. There is a time when it really is minute by minute. See each minute as success.
My children saw me break down. They saw me lying on the floor in a closet because it was the only quiet place in the house. Children are resilient! Mine are feeling so much better when they see me like I used to be.
You will get better. You have to believe that. I promise you will improve from where you are now. But unfortuneately it takes time, and no one can say how long. Be strong. You will be fine!!!!!! I am out of hell now. It took a long time but I am out.

Sending you lots of courage. Dig down deep inside yourself and find that core of strength that we all have. It is there.
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What happened: Legs pulled forward by a parent's hockey stick while resting at the side of the rink at a family skate....sent me straight back. I hit the back of my head (with helmet) on the ice, bounced a few times, unconscious for a few minutes. September 11, 2011. Off work since then…I work part-time at home when I can. It has been hell but slowly feeling better (when I am alone☺).

Current symptoms: Vision problems (but 20/20 in each eye alone!) – convergence insufficiency – horizontal and vertical (heterophoria), problems with tracking and saccades, peripheral vision problems, eyes see different colour tints; tinnitus 24/7 both ears; hyperacusis (noise filter gone!), labyrinthian (inner ear) concussion, vestibular dysfunction (dizzy, bedspins, need to look down when walking); partial loss of sense of smell; electric shocks through head when doing too much; headaches; emotional lability; memory blanks; difficulty concentrating. I still can’t go into busy, noisy places. Fatigue. Executive functioning was affected – multi-tasking, planning, motivation. Slight aphasia. Shooting pain up neck and limited mobility at neck. Otherwise lucky!

Current treatments: Vestibular therapy, Vision therapy, amantadine (100 mg a day), acupuncture and physiotherapy for neck, slow return to exercise, magnesium, resveratrol, omega 3 fish oils, vitamins D, B and multi. Optimism and perserverance.
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Old 10-31-2013, 09:28 AM #6
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Thank you for your support, I'm at work now better than yesterday, headache trying to come through again...I'm glad you all know how I feel...what can I say, I have to move forward, these are bumps in the long road ahead to recovery...just hope it will end soon, for my family sake.

Your friend and brother,

ED


Quote:
Originally Posted by ginnie View Post
I am sorry you hurt like you do. I am glad you reached out. It is so easy to get despondent when physically you are having a ruff time . Maybe it is time to seek your doctor, and really let him know what is happening to you. Don't give up. Go to the ER if you have to. TBI can and does get better in time. So many here on NT say that symptoms do get better. I know what it is like to come unglued. Sometimes the medical conditions we suffer, get the better of us. I think it is mind over matter. Do some good thing each and every day. One thing you like, a moment, a prayer, reading a book. Something that makes your day better. Focus minute to minute if you have to. Your child needs you, You need you. Find the direction you must to make your life better. Do seek help if you need it Ed, and know that you are not alone. Mark From Idaho, is a TBI injured person here, and very very knowledgeable about this condition. don't hesitate to contact him. He may have useful information to help you. I have watched his posts for several years now, and he usually can find something that may get you on a better track. I will be here to talk to. I do care, and I will keep you in my thoughts and prayers. ginnie
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Old 10-31-2013, 09:35 AM #7
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Thank you Monkey your ur support, just wish I could close my eyes and fast forward 3 years from now in the hopes I will be in a better place. I'm trying my best, but when your not yourself and in constant pain it's so difficult and sometimes the thoughts come and you ask your self how can live this way, what type of life is this? Why did I not die that day?, I mean the pain Im in how its I am still alive? Just hope things get better...really do because its agony...it really is horrific.

Your friend and brother:

ED

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Originally Posted by Mokey View Post
Ed...I was like that and feel so much better now. There is a time when it really is minute by minute. See each minute as success.
My children saw me break down. They saw me lying on the floor in a closet because it was the only quiet place in the house. Children are resilient! Mine are feeling so much better when they see me like I used to be.
You will get better. You have to believe that. I promise you will improve from where you are now. But unfortuneately it takes time, and no one can say how long. Be strong. You will be fine!!!!!! I am out of hell now. It took a long time but I am out.

Sending you lots of courage. Dig down deep inside yourself and find that core of strength that we all have. It is there.
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Old 10-31-2013, 09:52 AM #8
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thank you for your support Vanilla, today is new day and I hope its better than yesterday...really do. Yesterday was a scary day really thought it was over...just hate all of it!

My doctor had mention to wait a couple of weeks until the gabapentin gets into my system, than increase to 600 mg/day. I been many times to ER when this are at there worst, they wont to MRI unless ur actually dieing and the doc's just send me off with a new prescription and tell me it takes time and nothing they can do...I tried of taking trips to the ER, just so tired of it.

Thank you again really appreciate it.

Your friend and brother;

ED

Quote:
Originally Posted by Vanilla Bean View Post
Ed,

Calm down and know that things are going to be okay. Being as upset as you are is not going to help you, and you must trust that it will be better if you try to calm down. Do whatever you need to do to make sure you can rest tonight. Tomorrow is a new day and you will find new strength to work on this a little bit more after rest. Each day will get a little better to deal with if you take it slowly, working on something each day little by little. Tonight your task is to calm down and rest. This will take time, a lot of time, but you have the mind and will power to do it but you have to break it down little by little.

As Mark said Gabapentin at 300 mg is not much. It is how much I take. My neurologist thought that it would not be enough and she told me to double the dose if it didn't work. Did yours tell you that? Can you double it or can your wife or son call your doctor on call to see? Is there anything else you can do to calm your nerves right now? If there is, do it or ask for it.
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Old 10-31-2013, 12:05 PM #9
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Hi ED, I notice that of all the test you have had done, you have not gotten your vision checked. This is one of the more important test as vision problems can be big factor in headaches. Go to someone that can test for convergence insufficiency. My vision is 20/20 so I never suspected my vision was messed up when in reality it was big time.
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Old 10-31-2013, 12:19 PM #10
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thanks for your advice, I forgotten to mention that, I have checked my vision... did a full extended exam..ALL OK.

Your friend and Brother;

ED

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Originally Posted by todayistomorrow View Post
Hi ED, I notice that of all the test you have had done, you have not gotten your vision checked. This is one of the more important test as vision problems can be big factor in headaches. Go to someone that can test for convergence insufficiency. My vision is 20/20 so I never suspected my vision was messed up when in reality it was big time.
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