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Post Concussion Syndrome
I suffered a concussion on Jan. 3rd of this year. I was trying to open my car door which was frozen shut. I was pulling on the handle when all of a sudden my feet started slipping on the ice, and then all of a sudden the door flung open and I fell back and I hit the mirror of the pickup behind me with the back of my head.
I remember seeing stars and the next thing I know I was sitting in the snow and my mom trying to help me up. I had a slight headache, little dizziness, big lump on the back of my head and I felt little nauseous. I got back in the house and laid down, but my sister's fiance said that I needed to go to Urgent Care. The doctor there did an exam and CT Scan, she said that everything was normal and that I just had a concussion and that I should go home and rest and take tylenol for my headache, then follow-up with my regular doctor. A couple days later I developed real bad dizziness, unsteadiness, and real bad headache. A week later when I went to see my own doctor then I developed ringing in my ears, light headedness, light and noise sensitivity and nausea. So she put me on pills for the nausea, headache and sent me over to see a neurologist that day. The neurologist gave me some IV medicine for the headache, which helped but couple days later it came back again. I am going to be starting physical therapy for my neck next week to see if that will help, because ever since my accident my neck has been bothering me too. I keep asking my doctor's why I'm not getting better and they now told me that I now have Post Concussion Syndrome. I don't care if its concussion or pcs, I just want to know how long it's going to last and when will it go away. They don't have any answers for me every time I ask them, except that it takes time for a injury to the brain to heal no matter how bad the injury was. That is'nt the answer that I'm looking for. I can't drive my car, go to the mall or Walmart, or even work at my job right now. I"m afraid to even walk down my stairs in my condo because of my dizziness and the fear of falling down them. I'm just getting so frustrated and upset right now, and just feel so alone because I feel like my doctor's are giving up on me, because they don't know how to help me or treat me anymore. If anyone is going through the same thing that I am or has any answers for me Please let me know!!! |
yup...sounds like me...same symptoms. I can barely watch tv or computer...few mins at a time. My accident was at a waterpark 6 months ago.
Today I sat in all day long...nothing to do...barely read, no tv..no music, just the kids in and out. I saved it all up to go to dinner with my husband to a restaurant that is very quiet. Needless to say...I'm more dizzy now and my head feels all tingly and I'm tired and i was only gone an hour. I hate to tell you but there is no answer to when you will be better. I've been to a half dozen different doctors if not more...and no one can tell me. My hubby told me today...stop looking for when it will be over and be happy the worst is behind you and only better days to come. GOod advice just didn't want to hear that. |
Sorry to hear of your struggles. It has been 20 months for me since I had my latest concussion.
I was in full post concussion for about 14 months before my symptoms started to subside somewhat. The fogginess reduced but I still deal with the headaches, dizziness, insomnia, sensitivity to light/sound, confusion etc. This is also after having many concussions in my life, from sports, car accidents or just accidents. But, that is not to say that this is what you will face. I am just saying I have said those very words so many times. I did that until someone told me to stop looking for someone to answer a question that there is no answer to, to instead practice patience and realize that your brain will need time to heal. Stressing over how long it will take and feeling frustrated won't help things heal faster, it will just leave you feeling more frustrated. Your brain needs time and stillness - as do you. There are many amazing posts on this site that will help you, Mark is a wealth of information. Just try to be gentle with yourself, it may not last long and unfortunately not many doctors know a lot about PCS. Post any questions you have, and I am sure that you will find that there are many caring, supportive and knowledgable people here for you. People who have experienced what you are going through and will support you or just be there if you need to vent. Be well |
my husband just gave me the same advice...and he never had a concussion.
did anyone see the movie What About Bob?? Richard Dryfus is the psychologist and Bill Murray is his patient who follows him to his vacation home. Its hysterical...but the bottom line is "baby steps". I have to remember that...maybe even rent the movie and watch it in "baby steps" ...aka 15 min intervals for me! |
We all commiserate
Sorry to hear about your troubles, we all are going through similar troubles and feel for you.
The advise I can give you is 1) DO NOT GET A SECOND CONCUSSION!!!! 2) Realize that this healing process might last three months or a year or even longer than that, if this is your first concussion, chances are you will heal within a year...but it doesn't mean anything super bad if it takes longer. 3) If all the docs say there is nothing seriously wrong with you, it means that you are basically OK. All docs know to do right now is treat each symptom, they don't really know what is wrong with us, but if they said you are clear you aren't going to keel over or anything. 4) Find something that can motivate you both short term and long term. This has to motivate you to get out of bed every morning and slowly push you to try new things. You probably can't work out and definitely don't do something where you might hit your head again, but push yourself. For me this is keeping my friends and family from worrying. I also know that if I give in just once to sleeping all day or quitting college, then I will give in for good...I know my weaknesses, and if I give in once I will give in for good. 5) Realize that this is an opportunity. Yes it is ridiculously hard and frustrating, but it is through the hardest things in life that we can grow the most. I have pushed myself further than I would have though possible. I have learned more about myself. I have learned that many things like cards and movies and books can be a lot of fun. I don't dance or jump up and down any more because I will pay for it sorely for the next month if I do. When I work out it is all low impact and I have to be careful not to let my heart rate go up too high. I am 21 years old and I still love having a good time, I have just redefined what a good time is. I am trying to give you the facts because in the first year of my PCS I saw 8 docs and none of them said more than "Yep, you got a concussion alright...you should be better in a couple months...." Well, I got 6 concussions in the year following my first concussion (all from unlucky coincidence) and it has been over a year since my last concussion. I still have daily headaches, nausea, dizziness, trouble with concentration, trouble with any activity, my immune system is down, I have constant pressure in my head, and more. But all the doctors say I am fine. I have learned to cope. I get mostly A's and B's in an intense 20 credit/semester Liberal Arts college (I had a 3.8 GPA in high school which sunk to a 2.1 immediately after the concussion and has risen to a 3.3 now). I am planning on going to graduate school for Architecture or nursing. I believe that while this injury has changed me for the rest of my life, I am a better person for it. I have more sympathy for those who are sick and injured, I have more of an understanding of myself, and I have learned to live life to the fullest because tomorrow it might be changed completely or life could just slip away. I am sorry this is so long, but I was so desperate for answers when I first got my concussion and it was not until a full year after my first concussion that I started to understand what was going on with my body. If you have any questions, please just private message me... Good Luck! Margarite |
Another thread
Sorry to write in again, but search the thread called "Things you wish you'd known when you first got post-concussion syndrome." http://neurotalk.psychcentral.com/thread140214.html There is a lot of good info for people just starting on the PCS recovery process.
Hope this helps. Good Luck, Margarite |
Just asking for some help....
I am writing because I read your post and applaud your ability to continue on. It is quite frustrating to know how you used to be and work so hard to just get thrown back 100ft. I am currently in Nursing School and I am watching my grade drop from A's to C+ or B's. I am having problems studying and taking tests. It is not the same before my accident. Very frustrating!!!
My accident involved me and my fiance. We both were walking across the street and were hit by a car moving about 45 mph. I was sent to the trauma room and my fiance died at the scene. It's been over a year but had to start school a month after the accident to get accepted into the Nursing Program. I use school to keep my mind off of what happened but it takes me longer to study and to understand the material I am reading. I just want to know what people are doing to help them get back to normal or is it time that will heal my injury. I got off medication and started to exercise to help keep my body to stay healthy and to combat depression. Any help or advice will be great. Thanks... |
I'm so sorry to hear about your loss!
I know what you mean as far as grades, before the accident I had a 3.8. Immediately after I think I had a 2.1 and since then, each semester, it has gone up a little until now I have a 3.1. I think it has been a combination of me healing and learning to cope with my injury. I also find that school is a very good distraction, I can't give into my weakness or I will fail out. I can't sleep in, I can't skip class, I can't not study or I will have to leave. My question always is if that would be so bad, but I realize that I wouldn't have any idea what to do. I got my concussion second semester of Freshman year and now it is second semester of Junior year. In the year following my first concussion I got at least 6 more and saw 8 docs who couldn't tell me much about what was wrong with me, but now I understand a lot more. Stay active, keep studying, get someone or a couple people who are understanding and don't mind helping you with your homework and who enjoy doing the things you can do. This is what helped me. One of my good friends even read some of my homework aloud to me a few times when my headaches and light sensitivity was so bad that I could not read myself. The first few months are the hardest, but after that you learn how to live. It is hard, but you will become a stronger person from it. Again, I am so sorry for your loss! Good Luck! Margarite |
holy crap...how are you guys going to class no less studying? I just did 2 math word problems iwth my son and my head started spinning!!
IS my PCS that bad???? oh...and reading...read 20 pages of a book thur fri and sat...by sund i was a mess...so exhausted. I think that was the reason |
Lost my 28 year old daughter to PCS
On Oct 26, my daughter slipped and fell in a shower. 1st hospital said 6 staples, no concussion, take 2 days off work. She started getting worse. I took her to local hospital. They kept her for 3 days. She totally lost all memory of events. Short term memory gone.
They released her, said she had a mild concussion. Then she became worse. wobbly, then speech drunk, or drugged , it was awful. I really don't think her Neruologist took it serious. Then she had to go to get staples out, they sent her back to the ER, the dr that treated her was the head dr of the group. He explained she had PCS. that helped me to understand. But she had to go back to original dr, all he'd say she's angry, etc. I told him with her elephant memory she was upset, she list 6 weeks if memory. He sent her to a cancer center for blood work. Which scared her. Then about 2 weeks before her death, she told me she was starting to lose short term memory and she was twitching, but she never said where. I told her to see dr ASAP, dint wait 6 months. She flew up to see me on a Thursday, she was fine, went out with some old friends, came home early, I noticed she'd passed out on her bed, I took wet clothes, sweater shoes etc, they'd been walking in snow. In middle of the niggt, she kept in thinking she was back where she lived. She slept all the next day off and on, me not even thinking about what could of been going on. To make a ling story short, I had to put her in the plane in a wheelchair. The next day, she was upset, was trying to sell her car, going right back or worse than she'd EVER been. That Tuesday night, she was fine, I explained to her not to upset about car, etc, see the dr. I love you. That was the last words anyone said to her. Because thank Fid she was a good worker, they came to the house. From Wednesday morning Thursday I called texted, everyway I could think off, I couldn't get intouch with her. I KNEW something was wrong! Friday morning 6:00am, 1 hr of sleep in 60 hrs, her father came up stairs to wake me up to say tge police where here.... I knew. I really think some of the neurologist really dont take their patients serious. The last time her brain was scanned was nov 1?, she passed March 3rd. Something in my opinion was starting, the plane flight finished whatever was going on......remember the infomercial guy? I won't know what really happened for another 2 months. I'm wish the dr someone would of sent her to physical therapy, anything to help her, maybe she would if had a chance. Only God knows. But I do believe flying and severe head injuries don't mix. |
I am so sorry to read about the passing of your daughter Fiddlers knot. Please accept my condolences. :hug:
You must be very angry that her doctor's didn't take her seriously, I know I would be. Did she have an intercranial bleed? Have you been given any explanation? |
My condolences too on the passing of your daughter.
It is so frustrating when the doctors either don't know or even try to know or pass the patient off as a hypochondriac. Then, all you can do is try to be helpful and help the person relax so they can possibly recover. There needs to be a post concussion protocol for the patient to take home and have with them with their ID so they, their friends and family and First Responders will quickly understand they concussion history. Most bleeds show up on imaging at about the third day. You daughters case sounds to be very uncommon. It sounds like the biggest problem was her being shuttled back and forth between doctors. With her up and down behaviors and symptoms, it was a crap shoot as to which symptoms would manifest for which doctor. There needs to be a sub-specialty of concussion care with doctors referring their patients to that specialist. Continuum of care with such a specialist whether it is a M.D., Physicians Assistant, or a Nurse Practitioner will be a true life saver for many with concussion. Unfortunately, this is par for the course for post concussion care these days. You got the worst of it. Again, my condolences. |
My concussion experience
I got a concussion on November 25 of 2011. I got elbowed during a basketball practice and then fell and hit the floor. I didn't have many symptoms though. A week later I got headaches and I couldn't remember anything during school. I got better with the headaches which was good. Yet I still have trouble remembering things especially in Math before my concussion. What makes it worse is I tutor kids in Math and I feel stupid because I can't help them anymore. I hate feeling stupid. I just want everything to go back to normal. I want to not feel stupid, I want to play ball, and I want to just be normal. I'm only a freshman, I don't need this:(
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BallGirl33,
Welcome to NeuroTalk. Sorry to hear of your struggles. Did you mean you are a freshman in high school? That would make to 14 or so. This is a difficult time to be struggling with a concussion since your body and brain are going through a lot of changes. I struggled after receiving a concussion in soccer at the start of my sophomore year. Math had been my best subject. I even challenged freshman Honors Algebra I and passed it. I was taking junior level math when I suffered my concussion. I went from being the math brainiac to struggling to get by in a short period of time. Math can be a struggle because of the need to process multiple steps in a formula, etc. The mental load can be tough. What kind of care have you received sop far? What have doctors told you? Do you have a sports trainer at school? What did he/she say? Besides the memory and processing issues, what other symptoms are you having? There is lots of good help here. My best to you. |
Blessings from GOD!!
As a 77 year old widow, I am truly blessed to have found this board. I've lost count of how many concussions I have had, probably more than 10 but 6 sincee I started counting in the last 12 years. Then, an automobile accident resulted in a severe head injury which kept my type A personality on vacation for a year. Seizures cancelled my driver's license and I had just been accepted to college for an advanced degree in history and spirituality and that too became a thing of the past. Therapy by a woman trained to treat stroke victims for nearly 9 months, journaling and rest brought me back to near normal but now, having had another concussion 44 weeks ago, my patient neurologist, who has been treating me since the first counted one 12 years ago, remains patient with my type A personality. But I am not. This was one concussion too many; and the symptoms are so different. I do have a permanent damage to the left frontal lobe, the result of another auto accident which required more professional therapy but I was able to learn again and remember much of what was inaccesssible for months after the accident. Now, I'm impatient with rest, rest, rest. I don't sleep well, so after several sleepless nights I sleep like a babe, then, feeling healed the following day, as I did yesterday, I went to church, the grocery store and came home exhausted. Back to square one; no sleep, terrible headache, nausea and frustration. I am blessed to have found this board to realize that I am not alone. Thank you all for sharing your experiences; I shall try to listen to the neurologist, rest, rest, rest and remember that recovery is more difficult with successive concussions! God Bless, Sally
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I am a 12 year old and I know what you are going through. Crazy right. I know it is really hard to be going through this but you are not alone. There are lots of people who get concussions all the time for doing odd things. Unfortunately you have a post- concussion syndrome which takes a little longer to recover from. I have one too and have had mine since December. I have not had once a headache free day. The doctors are trying to help you as best as they can and I think you know that. But they have done everything in their power to try and get you better without much success. Have you tried PT and/or OT?
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Sally,
Welcome to NeuroTalk. You are the oldest person with Post Concussion Syndrome that I have ever met. And I have met many many with PCS. From what you say, you are fortunate to be doing so well after so many concussion is such a short period. Do I understand that you miss your Type A personality? I have lost mine too but live a better life without it. The stress of living as a Type A is rough on the injured brain. The ups and downs can be miserable on oneself and ones friends and family. Most of us find that we need to plan ahead and moderate our activity to prevent the over-load and exhaustion. For me, I can attend Sunday School but not the Worship Service and Sermon. The sounds leave me exhausted for the rest of the day and into the next. Finding a way to get a minimum of sleep each night is crucial to recovery. The brain only heals during REM sleep. Even if you have to get cat naps throughout the day, getting some good sleep in important. Let us know how we can help. My best to you. |
[unfortunately im learning as well as you and alot of other posters that post concussion is a long journey of ups and downs and there is no definate time line of when youll wake up and magically be yourself again. as everyone tells me...dont be hard on yurself, ask for help and praise yourself for small accomplishments.
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I feel what your going through
Quote:
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Thanks
I am so happy I found this thread...
So in the last week of July.. about 11 weeks ago.. I hit my head getting out of a car.. it hurt pretty bad but it didn't knock me out.. which I now know (according to the doctor's in my area) is the key to "getting a concussion"..anyway I didn't think anything of it until the next day, when the back of my head started to swell and hurt where it had been hit.. 2 days later I decided to go to a urgent care to see if anything was wrong and they said it was just a bump and to take some muscle relaxers.. but by the time I got home the dizziness set in.. and I don't know what it's like for all of you.. but this scared me.. it wasn't like any other kind of dizziness I had known before.. it was like a pulsing, pounding dizziness that seemed to reach from the top of my head to the tip of my toes and NOTHING made it stop.. they prescribed meclizine which helped a little.. I went to the ER for a CT scan which they said looked fine, but the pain and dizziness stayed for about a week.. at that point I stopped taking the meclizine and went back to my normal routine.. tv, computer, loud music in headphones, dancing... all the usual.. and about a week later.. I woke up feeling so dizzy I could barely move.. it came with extreme sensitivity to light and sound... it's like anything could trigger an "attack".. that lasted for a few days at which point I went to a physical therapist who wanted to treat me for "vertigo".. that obviously didn't work and after a few more days the dizziness subsided... Basically after that things gradually got better, little by little.. I think the noise sensitivity has improved to the point that the tv doesn't bother me anymore... nor do every-day noises.. I still cannot tolerate loud concerts and I haven't tried to use my headphones again.. the light sensitivity is better.. but I still have trouble in the bright sunshine.. I squint a lot.. I tried glasses, but they only made me worse since I do not have a vision problem... I still feel "off" somedays.. I don't know how to describe it but if I have been stressed or even if I just did a lot that day.. I will feel kind of foggy-headed or slightly dizzy, but in a different way than before..usually at that point my nerves set in though and I start getting scared that the bad dizziness is going to come back, which doesn't help... So far I'm taking it little by little.. I feel like all my friends and family think I'm making a bigger deal out of something that isn't a big deal.. but they just don't understand.. I had to drop out of college because of this...and as a 4.0 student, it sucked...I don't have a job because I don't really know if I can handle one yet... and there isn't anyone that's been able to guide me through this.. that's how I found this thread... I was never accurately diagnosed. Last night I went to church meeting and they had really loud music playing and bright flashing lights shining out from the stage and I really freaked out thinking it was going to send me back into a dizzy spell but I seem to be alright today.. When is the point where you start taking chances and doing things you used to do without being stupid about your healing process? When am I going to not have anymore symptoms? If I haven't had a major dizzy spell in 2 months, am I likely to have another one? Am I on the right track? Thank you all for your help. I am trying to trust the Lord to heal me and help guide me through this, but still want to be smart about what I'm doing day to day and what risks I'm taking.. :) Anna |
Hang in there, and on here on NT, All Posters -
There is a wealth of supportiveness and understanding, excellent longterm experience here on NT. Please do not feel alone in all you endure. Keep posting! We're here for you, and we *do understand* from our own experience. Sincerely, Theta ;) In year#4 of PCS |
Anna,
Welcome to NeuroTalk. It sounds like you have not given your brain enough time to heal. It needs quiet rest. No loud sounds, busy visual images, socializing with multiple people talking or other excessive stimulation. If you want to get back to your studies and a job, you need to take the time to rest your brain. When you can go two weeks without any symptoms, you can start slowly adding activities. Try adding one activity and wait a day. It is not uncommon for over-stimulation to feel OK but cause symptoms to flare up the next day. You also need to avoid caffeine, alcohol, MSG, artificial sweeteners (aspartame, Nutrasweet, Equal, Splenda, sucralose) high fructose corn sweetener and trans fats. Natural sugar in moderate amounts is OK. There is more I can add but this is a start. If you give you brain enough quiet rest, it will slowly start to heal. I can post a list of good brain nutrition to help too. Check my post under "New Here, Hello" by patty. My best to you. |
Thanks
Thank you for the replies.. I am feeling better this morning.. I have noticed that at my worst over the last few weeks I have just felt foggy-headed.. and I pick up on sounds a little bit louder.. like when I'm chewing something crunchy...this mostly happens when I am feeling nervous or stressed.
This past week I had a friend who was killed and it has been eating away at me.. I don't know if I am more emotional than I was before... I have always been pretty mellow dramatic but it's like a fight every day to not get upset over something...but I pretty much refuse to take medication for it. The headaches are pretty much gone, but I never had a ton anyway.. I am avoiding loud noises in excess but I can't avoid everything altogether, and the bills are coming in and I don't really have an option to just wait it out... It's been a little over 2 months... this is my first concussion (that I am aware of).. and I think it was probably prolonged out of fear.. no one told me what was wrong... I agree with the diet aspect, which seems a little harsh but I can definitely try to cut out caffeine and, obviously alcohol ( I don't think I could handle it anyway)...I'm 23 years old, pretty good health.. always suffered from anxiety...that's pretty much it. Has anyone on here gotten better in 3-6 months or are most of you multiple concussions...and a few years recovery?? :( |
PCS since1/25/2010
I am a 62 yr old widow who was rear ended on the way home from my job as a psych nurse. It wasn't a high speed accident but i haven't been the same since that day. I was An A type personality. taking care of my parents and grandson and now i can't work, drive or even set up my own meds. I have lost my personality, independence and drive. I forget most things and lost the ability to smell and taste, but I am here. I get in a fog, brain freeze and exhausted. My adult children want their old mother back they have already lost dad. I have wonderful partner who takes care of me, he loves me,but due to financial reasons we can't marry.
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myofascial release
Hi,
i am going thru Physical Therapy after my injury (hit my head, whiplash etc).. The myofascial release massages definitely helps with the pain and that may help with the headaches sometimes, but not fully. *edit* If you are doing PT, you should ask your therapist about that. If not, ask your doctor if it's ok for you to get one. Like everyone else, i also have issues with the following: - Watching TV/reading too long - Difficulty with simple math problems, simple strategy, new memories - Difficulty/confusion when multiple people are talking at the same time - Dealing with conflicts/general communication - it does take me a lot faster to get angry or lose control of my emotions since the accident - Driving tires me out faster. I'm on constant OTC pain meds to manage the headaches/migraines (i've been told this helps but you gotta consistently take it to keep the pain meds in your blood stream to help with controlling the pain) but sometimes you get what they call "breakthrough pain". There are options to manage them, but you need to discuss with your doctor on what they are and which one works best for you. Unfortunately there is no best formula and it's different for everyone. for reference, I am headache/migraine free a few hours a day on the current regime.. but i'm probably gonna be switching it again soon. Finding a good doctor: - Some doctors are not equipped to treat brain injuries, in fact, there is a whole lot of unknowns around it. Don't blame them. It's not their fault. It doesn't help that you're likely to get angry/[enter negative emotion] faster due to your concussion.. So try to find a doctor that can explain the situation to you better. Or ask for a referral, and if possible, do it nicely. (I'm going thru this challenge myself right now). There is also a really good website (podcasts, so no reading involved!) that talks about brain injuries. Can't post links yet, *edit* I'm still struggling A lot with not being able to work, fearing i'm gonna lose my job, and the financial things that go along with that..along with the concussion symptoms, on top of having to deal with friends and family who don't quite understand/know how to react around me. But, glad to know there's a support group at least. |
its been 2 years for me
I have found cranial therapy works wonders. and being able to talk to other like yourself helps with the depression and loneliness. keep sharing, we all need each other for the long haul.
Lots of hugs! Rabbit |
What kind of cranial therapy have you had ? Classic CST is of little use to most. Some CST therapists have other techniques that can help, like subtle neck manipulations, etc.
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I have the soft manipulation on my skull base, jaw, face, neck, and spine. it seems to get worse at first, but after about 5 treatments i was able to feel the difference. she also tries to balance my spine fluid. she also does acupuncture. It did not seem to help at the start, but i stayed with it and my head pressure, dizzy spells had gotten better. you have to do alot of research to find a certified and well trained therapist, some do not know what they are doing and can make things worse or not help at all. they need years of training. good luck!
Rabbit |
check this out
concussionsontario.org very good info in downloadable pdf
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Pcs
How do you deal with the insomnia?
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Pcs
I think you're doing one of the best things out there right now. You're on a forum with people that can help you and steer you in the right direction. Also, it can help with any loneliness you might experience.
If your condition continues you might want to see if there is a Brain Injury Association of America chapter support group nearby. They can help you too. On my first visit I met someone that was suffering from PCS and she helped with with information quite a bit. |
fabfalk,
Insomnia can be tough. Do you have any sense of what is keeping you awake ? Does your mind race ? Struggle to relax and feel comfortable ? |
Fab,
I went through a year of insomnia full time. After it became evident to me it would be around for awhile I started using the awake time to pray for others. That seemed more Productive to me than laying awake being mad at God. Bud |
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