Well I'm alive, but is that enough?
 

on July 9th, 2013 I was in a severe auto accident where I rolled my SUV 3-4 times and ended up in oncoming traffic. While I avoided even minor physical injury to my body, my car had roof collapse and I hit my head really hard.

I got the concussion exit sheet from my ER physician and within three hours of my accident, walked right out of the ER. I felt fine, but knew that I definitely escaped the clutches of death by a miracle. I went to bed that night thankful for my life.

I woke up a different person. I had severe cognitive deficits right upon awakening. I couldn't do math in my head at all and I was having trouble with word searching. I was extremely foggy and it was immediately apparent that my injury was more severe than anticipated.

I had an MRI two weeks to the day after my accident and it was shown that I had a focal point contusion to my right parietal lobe. I found it surprising that my injury showed so long after my accident, but I can't find anything to say if that is significant or not. Also, I'm a left-handed person, so I have to deal with some issues related to that.

While I have improved slightly, I still have a very difficult time with math and my word-search difficulty is made worse depending on the type of day I'm having. I do finance and accounting for a living! D'oh!

I just reached out to the BIA for my state. I wonder how they can help me.

So the title of my post: I am alive, praise be to God. But, I suffer so much :(

I desperately want a full night of sleep. I use a pink-noise generator app on my tablet, which I keep bedside. Thankfully that helps to reduce distractions in the middle of the night but I still find myself waking up frequently. My Neuro gave me an RX for xanax to help with panic attacks, which popped up a couple weeks ago, and just last week he gave me a RX for lexapro. I so desperately hope it helps...

I can't get my mind to calm down. I am being tortured by forgetfulness, lack of focus, fog... It is refreshing to know that I am not alone in my suffering. That is primarily why I am posting here now. I want to say thank you to all of you who share your experiences. I know I am being whiney but I had to get that out :winky:

OwlinFl84,

Welcome to NeuroTalk. Sorry to hear of your accident.

I suggest you try to avoid the Xanax. It is a benzo and they are rough on the brain. Read the vitamins sticky at the top. It will help your brain cleanse from the injury toxins then start to heal and deal with sensory struggles.

Try to limit sensory stimulation. Your injured brain just can not tolerate sensory stimulation like it could before your injury.

You are still early in your recovery. Your injury will likely require diligence in pursuing quiet rest. A few hours of over-stimulation can undo a week of good quiet rest so try to moderate your daily life.

My best to you.

Thanks, Mark. I hate the xanax but it does keep me from having panic attacks in the middle of the night. I've tried other sleep remedies but nothing knocks me out. I am trying to do a slow draw-down on it now so that I can let the lexapro do its thing. Every day is a struggle. Thanks for the encouragement.

Hi OwlinFL84,

Sleep is my nemesis as well after suffering a concussion. Somedays I sleep well and other days I can't fall asleep.

I too suffered anxiety attacks, but am not able to control them by either meditation or breathing through them. I used a cd called Let Go by Eli Bay. I can't tell you the number of times I have listened to it to try to bring myself to a calm. I have also used many of the supplements that Mark has mentioned and they help alot as well.

I had a lot of great advice from seeing a naturalpathic doctor about natural remedies vs seeing a MD.

The two supplements I find help me the most for sleep issues are
- Magensium Citrate (Natural Calm Brand)
- Melotonin (Spray kind)

Its a long journey and mine isn't even close to ending but what I can say is after going through this tough part of my life, I appreciate little things more and realize that no task can be more difficult then fighting your own worst enemy (Your brain)

Hi Owlin. Being alive is certainly a good start, especially considering the alternative! :winky:

I don’t see you as being whiney at all; sharing our experience, strength, and hope is why we are here.

Your accident was relatively recent as head injuries go. At my two month mark I was still in the hospital in the neuro-rehab unit. I shared your difficulties with math, to the point where I was shown a 7 + 4 = ? flashcard and I couldn’t figure it out. Three months later my math skills were rated “superior” in a follow up neuropsychological assessment.

The fact that you have improved slightly already is a good sign. Are you currently having any form of therapy for your cognitive deficits? I found occupational and speech therapy very beneficial in this regard. Things I continue to find useful for alleviating the anxiety and “mind chatter” nearly three years later include yoga and mindfulness meditation.

Wishing you a steady recovery. Let us know how things progress, and don’t be reluctant to ask questions; lots of experience can be found here.

Best to you.

I am blessed that I work in the family business and my father is also my employer. I have an amazing support system in place. My sister is a Speech Pathologist. I have not seen an occupational therapist but I think that is on the list of questions for my doc.

Today I was trying to collate some papers. One set was 2-sided, and I needed all of the pages on the same side. So instead of having 10 pages of paper I needed 20. It took me the entire day to sort the damn things and my Dad was not getting why I was making an easy task so difficult. The problem was, each time I turned over a piece of paper, it was staring back at me as if I had just started. The back of the second sheet was the same as the front of the first! I could NOT figure out why each time I flipped the paper, it appeared as if I had done nothing at all. It completely stressed me out and I was exhausted. That is the hard part for me. the seemingly simple things are soooooo difficult, yet I can have moments of complete clarity and discuss portfolio diversification and market theory.... so weird!

One of the things I have picked up on is to write a goal sheet for the day on a note card. I will put things like "go out for coffee" or "call xxxxx back" "stay calm" "cook a real dinner" and try to see how many things I can accomplish. On the back of the card, I write how my day went, and which tasks were too daunting or which were easy. I've found that I can then trace back a few days and see if I have something that I just can't overcome so then I can ask for help.

My family can't understand why I have panic attacks in the middle of the night but not when I'm driving. I don't have any anxiety about driving at all; I am totally cool with my accident. **** happens, right? no big deal. What makes me so worked up in the middle of the night that I start hyperventilating? I wish I could give them an answer. I just hope the meds start working soon. They are worried that I'm withdrawing and being anti-social because I don't want to "go out". Holy crap, dudes, I'm exhausted! No, I do not want to be around people because I am so freakin tired! What part of that don't you get? LOL! Let me finally get some rest and MAYBE I'll have enough energy to deal with people... I haven't had a good night's rest in WEEKS. Catch me on a Monday after I've had the entire weekend to relax. You'd probably think I was totally fine. Today (thursday), and tomorrow especially, not so much. I'm pretty much ripping at the seams. I will likely sleep in much of Saturday and feel a lot better. Its so frustrating!

Anyway I feel the desire to write so much but when I sit down to do it I find the task very difficult. it took me 20 minutes to write all of this down. I do feel some relief by documenting my symptoms so I think I might treat this thread like a blog of sorts. We'll see. Thanks again for all the support and well wishes. It does mean a lot to me.

I second not taking the xanax. I went to a quality concussion clinic and they told me to avoid it at all costs because it affects the brain like alcohol which is really not good. So sorry about your accident. It honestly sounds like you are better than you could be at only a month and a half or so out. So try to stay positive and make sure to take around 2000 Mg total EPA/DHA of omega 3 fish oil and b 12 vitamins at least. Read the vitamin thread. Also try resveratrol it helps with inflamation. Everything will be ok and you will improve. Also try melatonin for sleep and ask your dr about gabapentin for sleep. Its helped me. Good luck my friend.

Also you need to take time off work if possible. This is a serious problem and you need to rest your brain so it can heal.

The first few months are the worst because of not knowing what is happening to you but it does get better, but very slowly . Its best to stop working and to rest . Every day. Rest your brain dont think dont plan . Dont get stressed. Avoid tv and computers. In the early days of my cuncussion ,making breakfast was too much . Try not to think about the problem . I was prescribed elavil for my headaches and mood swings. Get the people close to you to research what cuncussions are all about so they understand what your going through and can help. Your life is on hold and has changed suddenly and youll need to come to grips with that and realizing that will give you some peace.

Well the BIA-FL called me back today. The woman who called was very nice and said she would email me some information about TBI, and also send a list of physicians in my area who can help me. I didn't expect much more than that but it was nice to tell her about my injury and to hear that what I was experiencing was normal. She suggested I get a neuropsych evaluation so that I can get some idea for treatment or management of my symptoms.

Not sure I'll learn anything new since I have pretty much read the entire internet's worth of research about TBI, but maybe it has stuff I can forward to my family. We shall see!

Good deal.

I would second the recommendation about the neuropsych assessment. This evaluation can help identify specific deficit areas and can better focus rehab therapies. Hopefully your health insurance will cover this.

The physician list may also be valuable, TBI/PCS is still not well understood my many in the medical community, a good doctor specialzing in Physical Medicine/Rehabilitation (also listed as physiatrists) can be very valuable.

You may also find a TBI support group helpful, a list will likley be in the information from the BIA.

I went throught the same thing in 1989. I couldn't find my way out of a paper bag!!! My Dr. sent me to cognitive therapy. I went for a year. I went through the whole program. It did help me through one of the most frustrating, fearful, years of my life. My car insurance paid for it. You might look into it. They will help you cope and do things you've done all your life just different enough to help instead of frustrate. Good luck. I certainly have empathy for what you are going through, but their is help out there! Blossom25

It takes time and patients
 

Your message spoke to me this afternoon and I just had to say it does get better. I am 8 months from my accident and still experiencing daily problems, memory laps, migraine headaches - lasting days and weeks, mood swings and just not being myself. I keep waiting for life to become normal, my family keeps reminding me that this maybe the new normal and I do just not want to accept that. I came to this site looking for answers and I am finding people just like me, frustrated by the lack of progress but encouraging each other through their own experiences. I will say the right Neurologist does make the journey easier. Take care, good luck, be patient with yourself.

Well just an update for everyone. I had a great weekend! I allowed myself to sleep prodigiously and not worry about any of the things that stress me out. I relaxed by the pool briefly, read a book, watched some movies (didn't finish a single one though...) and napped. I haven't taken a nap since my accident and it felt great!

My spirits couldn't be better, truly. I returned to work today ready to tackle anything in my way. And then I realized that despite all the rest, I will continue to have difficulties. BUT - and this is big for me, it doesn't bother me. I don't care that I have difficulties with math and finding patterns in numbers. I don't care that I talk in circles and forget why I'm saying things. I don't care that I forget most everything that I don't write down or make a very concerted effort to remember. I'm just so glad to be alive.

Yes, I do believe the lexapro is working. I am soooo happy to be less anxious about everything. I even have a date Friday evening and she is aware that I have an early bedtime and fully aware of my difficulties. Her comment to me was "if you are this sharp and you are having difficulties, then I can't wait to see what you are like when you are fully healed." What a gal...

I am still hour to hour, and I don't know what I will be like with a bad night of sleep. All I know is that I've had 5 consecutive nights of sleep and I feel great. Thanks again for all the encouragement everyone!

another update. Still feeling pretty good. I'm getting quality sleep consistently, given that I follow a very strict schedule for bedtime. I'm down to a 1/4 pill (.25mg) of xanax per night (doing a slow draw-down just in case) which will end in a week. I still have ups and downs throughout the day but I am consistently better over all given that I am sleeping more.

My sister, who is a Speech Pathologist, ran through a few diagnostic tests with me a couple days ago. She said that I have difficulties with planning, sequencing and such and more noticeably, auditory processing issues. She suggested that I take prolific notes about everything, especially for conversations. She also said that I would do better if I had a list made out for tasks ahead of time, although she said she knows me and that will be a struggle for me at first. I've never had to make lists! Very frustrating....

At any rate, I am doing a lot better and am learning to adjust to my new self. Every day is a new day with new challenges - it is how we deal with them that defines us.

Sounds as if you have made a great amount of progress over the past couple of weeks. I understand the frustration with the list making and other adjustments, but considering your accident was just two months ago you have a lot of progress to celebrate.

Having a sister who is a speech pathologist is great! She would also have a good insight as to whether an assessment from a clinical neuropsychologist would be helpful.

cognitive therapy
 

Hi all,
had a good experience with cog ther individually some years ago, then not so good a while back with VA sexual trauma PTSD, which was in a group setting. I know there are a lot of variables at work, and overall, it's a great tool for so many things, tho. Be well, all!:grouphug:

Every week has been better than the last. Currently having trouble with getting up on time for work :D I hadn't been sleeping for so long that I treasure it a little too much now.

Trying to focus on setting daily goals and achieving them, and also to not let things stress me out too much. Otherwise all is well in Owl's world.

another update:

Had a set-back starting a week ago. I haven't been sleeping again :( I really thought things were going super smooth, but I should have known better. I still stick to my very strict sleep schedule but it is to no avail. I am going to call my neuro tomorrow if I don't get a full night's rest tonight. Might be time for some Rx assistance...

Besides sleep, I do continue to feel improvements week to week, despite this set -back. My thinking is getting clearer, I can articulate my thoughts better, and I am not as tense as I once was. Now, if I can just get some rest....

Do you have a 'get to sleep' routine ?

I need to start slowing down my activity level about 2 hours or more before trying to sleep. I also take gabapentin 2 hours before sleep. It helps my mind and body relax.

Look at me!
 

Hi there. I am now eight months with TBI and have just posted a new thread. Just keep trying. You will be ok.

We wish you speed recovery.

Like Mark said stay off benzo meds as they are tough on brain.

Follow the vitamin regimen and eat healthy

Don't drink alcohol.

Keep us updated with your process.

Just another update for ya'll. I have been sleeping (thank god) but I definitely waited too long to get some help. Brain fog, extreme fatigue, inattentiveness, difficulty reading... Sheesh. I am still only 3 months post-injury so I know I have a long way to go. I am positive about everything and just taking every day on its own.

I may have to withdraw from graduate school though. It seems to be a bit much for me. That is a huge disappointment, but my health is far more important.

-Owl

Yikes I didn't realize that I haven't posted in so long!

I did formally withdraw from graduate school. It was too much and was causing so much stress. I noticed an immediate improvement in my symptoms once I didn't have to think about homework, studying, due dates, etc... Definitely the right decision! I can resume classes in the summer with no fall-out. Thank God for that.

Otherwise I have been so-so. I haven't had any real improvement in symptoms, but my ability to do sustained mental effort is improving bit by bit. Where I might have been wiped out after 90 minutes of real effort, now I can do 2-3 hours. I still have a lot of issues but I consider it progress. My sleep is so-so... I can't quite sleep through the whole night, but I have been falling asleep right away. I am trying to avoid marathon sleep sessions on the weekends, and have noticed an improvement with that by placing my pink-noise generator app on a timer instead of simply being on. When it turns off, I generally wake up. So, that has been a good way to limit over-sleeping.

I took a long walk about two weeks ago at a brisk pace. I walked for about half an hour. I returned home, feeling good, but I was dizzy. I remained dizzy for over 14 hours; got little sleep that night and of course that wrecked my next day. I wasn't very steady on my feet and felt like I had to look at the ground the whole time I was walking. I didn't realize that I was so unsteady. My eyes were darting around and I couldn't help but constantly check the ground to look for obstacles. Not sure what is up with that...

Hmm... what else... Reading is still a challenge. I told my family that reading is a bore because the words are just on the page. Before my accident, reading was a lot of fun. I could "enter the story" and become the character, envisioning myself as the words flowed through my subconsciousness. Now I just read words on a page and can't quite imagine the scene. So, I don't read much... But, I do enjoy movies again. That, and documentaries, or anything with very high emphasis on the visuals. Audio is just lost on me so I hardly follow dialog. That has been a strange thing to realize, but I am adjusting.

Not sure what else to say really. I am just moving along. Seems like my recovery has slowed down a lot since my last update. Kind of on cruise control right now. Thank you all for your continued support! you rock!

OwlinFl84,

You might want to try using head phones or ear buds when watching TV. This will improve your ability to sort out the ambient sounds so you can focus on the dialogue of the program. The improvement can be remarkable.

Without my head phones, I have a similar problem. I hear the words but they get lost in the ambient sounds.

I can't read fiction or even overly descriptive non-fiction. There are too many people and concepts to keep in memory. I end up reading the words but not comprehending the subject.

As a general rule, female writers are harder for me to follow that most male writers. Male writers of non-fiction tend do be more mechanical in style. This allows my brain to fit the pieces of the writing together like a puzzle. The more abstract concepts are very difficult for me to process and comprehend.

Understanding if you have similar limits allow you to select readings that are comprehendable.

My best to you.

I found the vitamin regimen to be very effective at lifting the brain fog, its definately worth a try. I've been taking the vitamins for months now and the fog has dissipated. Actually, it only took a few days before I started noticing the change. Diet is important too. I'm cutting out processed sugar and eating more fresh vegetables, berries and nuts. All that is helping with forgetfulness and concentration issues.
Best of Luck!
Jamie

When I read your post about having a bout of dizziness after walking, it reminded me of the relationship between your vision and vestibular (balance) system.

You might have your vision examined by a neuro-opthalmologist to look for convergence, binocular and accommodation issues. Often the eyes can get misaligned after mtbi.

When you walk your brain must continuously receive messages from your eyes and then output to your body in terms of walking. If you are unsure of your gait while walking (i.e. having to constantly look down), this may signal issues with your vestibular system. If the walk triggers dizziness, it could be the brain getting overstimulated from input (vision) and output (vestibular).

It was a good call to postpone your studies-you can always go back. Best of luck!

OK I had my 90 day follow-up with my neurologist and he believes that I am progressing fine. All of my symptoms are perfectly normal and expected, and he wants me to focus more on tracking my sleep. He is concerned because I am having at least 2 bad nights a week and wants me to have only 1 bad night per month.

So, for the next few weeks he wants me to keep a detailed sleep diary and visit him again so he can see what to do about it. In the meanwhile he said to just take it easy and keep doing what I am doing, but to try to do yoga and meditate instead of going out walking or trying to run or anything too crazy.

As for how I'm doing, as of late, it really has been a struggle to sleep all the way through the night. I've begun to write poetry, which I've never in my life been able to do. I also have been writing down some short story ideas that, when I have a little more capacity, I intend on writing to completion. My creative side, which has never been a part of my life, is roaring to fruition in a way I never could have imagined. My "new" self is quite an "artist" :p It feels good to express myself through writing so I've been writing a lot.

Has anyone else noticed new skills or interests post-injury that previously were impossible or had little value to you?

Hi there, hope you feeling better physically
 

and emotionally about things--I had to wd from grad school also a while back. Have several other diagnoses as well, I must medicate for, but the gapapentindoes helpw sleep. Other things that help are the vitamins, supplements, and as much physical activity as I can stand, stretching, gardening, getting out with dog, etc., friend. Be well, Owlin and others! Anneo:)

Time for an update. Largely I feel fine. I don't really have fog issues, although I still struggle with fatigue daily. I am writing and drawing and being artsy like never before. I've begun to really like that side of me, so if anything I am thankful for the time I've been given to learn about my creative side.

I still have sleep problems but it isn't out of control like it was before. My tinnitus is still very bad. I guess my focus is now on lessening the fatigue and trying to learn the triggers for it, so that I can avoid feeling tired all the time.

Hey at least I'm going out more :) I just sleep the whole next day haha!

Owlin, glad you are doing better, very neat about
 

you finding your artsy side! I have been thinking about expanding my horizons here as well. Part of this coming from having to come up with a number of inexpensive, creative Christmas gifts!Take care :hug:now!!!

Coming up on month 7 of recovery. I am still dealing with fatigue and difficulty with organizing, planning, math, prioritization, etc. My dizziness has largely gone away. I've been diving into photography and continuing to write more and more. This has been the positive change, and what I put my "good" energy into.

My family has finally come around to believing that PCS is real. It was my impression (and no one will admit to it) that my family thought I was faking my symptoms in order to avoid responsibility. Well, seeing my slow recovery has changed their perception.

Being religious about my bedtime routine is so important. I am glad that I adopted the strategies listed on this site and others so early after my accident. Good restful sleep is the only thing that helps me.

I pray for you all frequently. May you find peace and happiness despite your limitations.

We are not limited! We are otherwise abled. I have gained more from my injury than I ever lost. Yes it was painful, hard, frustrating. Once I accepted where I was I could see what had been before me all the time. I just was to busy to see it.

What do you mean by "Accepted where I was" ?

To me, that means accepting my current level of function and dysfunction. Denying and fighting against our limitations only adds stress. Accepting them can give us a place to stand to start to move forward.

For example, I know that my memory skills are dismal. I accept that and use other ways to move forward that do not depend on good memory skills. I also must avoid audio stimulation. I wear ear plugs or just avoid the noisy environments.

Well it has been many many months since I've updated but not for lack of having anything to say. I am 15 months post accident and still having many difficulties. Reading is a problem, listening to conversation is a challenge, math is a non-starter. Sleep remains the single focus of every day, since it dictates how I will be the next. I am on medical leave from work, and don't anticipate being able to return. I simply can't perform what is asked of me in a timely and accurate manner, and certainly not without great expense to my well-being.

I have not returned to graduate school and I do not thing that I will ever.

I had no idea that I'd be writing the things that I am writing :(

I am hopeful, though, and I continue to pray for all of you.

Hi Owlin I have been lurking on this forum for at least 3 months now. In 10 days i will be 5 months into my recovery from a very severe frontal/temporal lobe, coup counter coup concussion. Your situation and symptoms are very similar to mine.

The same night of my concussion i started feeling very different like a different person. The next morning i couldn't even get out of bed and all of my cognitive deficits kicked in. For 2 weeks i would sleep for like 18 hours a day and would hardly have any appetite. It was almost impossible for me to do any daily activities and it still is to some degree.

The next 3 months i would wake up around 9 am, stay up for 3 hours then sleep for about 2 hours in the afternoon. The whole time i would still get about 10 hours of sleep at night. Now almost five months in i don't have to sleep in the afternoon and i still get about 10 hours of sleep a night.

From the beginning of my concussion until now i have had terrible short term memory loss. I am barely able to remember from one day to the next. My attention span is terrible. I can barely retain what i read, hear or watch. If i listen to a new song i have to listen to it 10 times or more before i can even recite half of the lyrics.

The day after my concussion the way i see things visually changed drastically. And to this day i have seen little to no improvement in that aspect. my world still doesn't look the same as before. Its like my perception isn't as clear as before and i can't take in all of my surroundings the same way. From what I've read its as if i'm experiencing chronic derealization or depersonalization because it is 24/7 and never stops.

I can still Speak fine with little to no impediments but my fluency and energy for speech is way worse. Sometimes it feels like a struggle just to speak. I stumble on words and get tongue tied way more often now kind of like a very minor stutter every so often. I struggle to remember words and i have many spelling errors and typo's now.

I have gotten far weaker emotionally from damage to my frontal lobes as I've cried about 20 times or more since my concussion. The crying happens far less frequently at this point but still happens if i smoke more than 2 or 3 hits of marijuana in succession.

Before my concussion i was a heavy marijuana smoker and could smoke 20 pipe bowls a day or more easily. Now the marijuana seems to exacerbate my emotional and cognitive symptoms. But i still smoke because it helps me grade where i am in my recovery as the more tolerance i build to it the more i know i am getting back to being like my old self again. One positive effect the marijuana does have for me is it makes me think and converse very deeply and universally about my cognitive deficits to the point where i can actually feel myself making progress in very minute increments.

Anyways i just replied to you because i can totally relate to your situation and i think i am going to be in the same place as you at the 15 month mark because i don't see much hope for a full recovery at the 1 year mark.

By the way if i didn't have spell check on my computer this post would be full of typo's.

God Bless all of you in your recoveries. I never knew something like this could happen to me.

Eli456,

Welcome to NeuroTalk.

Many would suggest that you will heal better without the marijuana. Studies show it delays healing and effects the proper function of the immune system. There is also a strong link between marijuana use and cognitive impairment.

On the plus side, smoke enough and you will be less concerned if you ever recover.

Yes i am aware of the hazards Mark. I guess the main reason i use it is because right now i'm trying to cling to whatever i can do that makes me feel like my old self.

**

I'm not trying to promote marijuana or push it on others but i don't think it should be overlooked or discredited as a good source of natural medicine to alleviate various ailments whether they be mental or physical.

And from what i understand the cannabinoids in marijuana promote healthy myelin growth. **

I can't post links yet but i have some good videos and articles on the subject.

I guess you have all the answers. Smoke on.....