When do you know that your symptoms are permanent?
 

I'm just wondering when I should start counting on my symptoms to be permanent. I'm just really confused. I went from being perfectly fine at the beginning of August, went back to work, having a drink or two everyday, listening to music, going out to the casino...and then in September I get smacked in the face with a hundred different symptoms.

Its now January, close to 7 months since my injury. A lot of the symptoms have gone away, which is a good sign. But the symptom that bothers me the most that hasn't seem to gotten any better...brain fog. Its not bad if I'm just sitting at home in the dark alone. But it gets worse when certain things are added to the mix. Music, 30 minutes or more of TV, video games, going to the store, casino...long conversations...I just want to know...will it get better? I feel like I can't do anything. This specific symptoms didn't even show up until I think November. I didn't have a problem playing video games or watching TV before....why all of a sudden?

Last night my friend calls and tells me he's back in town. I haven't seen him in about 3 years. He wanted me to meet him at a casino by my house. So I decided to go. Well, it didn't take much for me to get completely fogged up to the point I couldn't even speak. Also started getting confused...so I left.

I was told that the part of my brain that was damaged will never heal completely. It will always show on the MRI. So maybe the left frontal lobe being damaged is the reason I get fogged so easily...and maybe it will never get better?

Sorry for the ramble. I wish I could trade this brain fog for migraine headaches. At least you can take medicine for that. If this is permanent, my life is gonna suck.

It sounds like you are very sensitive to over-stimulation. I have this problem permanently. It started with a concussion in 1996. Over time, it got worse with even small jostles to my head. I had to start modifying my behavior to avoid the over-stimulation areas. Then I was injured in 2001 and had to seriously stop all venturing into noisy and visually stimulating environments.

In order to keep your other PCS symptoms at bay, you may need to stay away from casino like environments.

We can survive with the stimulation limits necessary to avoid a relapse. I have lived this way for a decade. Occasionally, I will over do it, like last month when I had a conversation with another TBI person and his wife. I was a space cadet for two days after that evening. It did not effect him at all.

These are lifestyle changes many of us have to make. You still have time for your symptoms to improve. The key concept for you to accept for the time being is simple. The more you can link together good days, the more chance you give your brain to continue healing.

As you learn to avoid triggers like noise, voices, and such, the length of your symptomless periods will become longer. When you can get a month of symptoms free living, you have given your brain a great chance to heal.

So, it has become your choice to be disciplined to avoid your triggers. Be open with your friends. Say something like, "If I go to the casino, the sounds and lights will cause a relapse that will take me a week or two to overcome."

Most people will understand.

Now, as Dr Laura would say, Go and do the right thing.

My best to you.

Mark - It sounds like we have a lot of the same problems, doesn't it? =P

I know if it's permanent, I'll find a way around it. It's just going to take awhile to adjust to the "new me", as I've become accustomed to the "old me" for so long now. 6 months is still a short period of time for recovering from a brain injury. Do you think there is still time for improvement? I wonder sometimes if I'm just getting impatient.

What concerns me the most is my son. As he gets older, he's going to want me to do things with him...like play video games, or take him to an amusement park. He's going to want me to ride roller coasters with him and do other stimulating things. It upsets me that I might not be able to do these things with him.

Mark, have you found anything besides avoiding stimulating things that improves brain fog? I.E., certain vitamins and what-not?

Nick,

First, let's deal with the here and now. I have explained the vitamin and supplement regimen I follow. Many want to pick it apart and minimize the doses of vitamins, etc. I can't comment on the value of reduced doses for others because I know that I do not do well on the reduced doses.

The roller coaster may not be tolerable for you. You will need to determine this when the time comes. You can just tell your son, "Roller coasters make Daddy's head hurt."

As I said, you need to connect lots of days and weeks of good discipline and no or minimal symptoms to see how your brain can continue to heal.

Think of your schedule of activities for the next six months like a recipe for brownies.
If you add a piece of manure to the recipe, which piece of brownies will have some manure? It will likely effect the whole pan of brownies. You can not separate the bad ingredient from the good.

If you need six months of good discipline and no symptoms. Which cheats in personal behavioral discipline that cause symptoms can your brain tolerate?

Your days of "Fun and Games" is over for the near future (year or so) You need to get used to the new behavior discipline or risk riding the PCS roller coaster for a long time. You need to grow a back bone. Tell friends "No, I can not do that. It will cause me a relapse of PCS symptoms."

Honestly, you will be way ahead of the game if you start looking for some new friends who do not need to participate in these over-stimulating activities to feel alive. This will be difficult with your generation and your location (Las Vegas). BUT, you CAN do it.

Have you considered who your friends are? If they want to drag you to bad environments or engage in over-stimulating activities, are they your friends or just your co-conspirators in these activities. A friend looks out for the well-being of their friends. Many in your generation have a long list of acquaintances that they do select 'activities' with.

Do they say you are "No fun" with your restrictions? They are acquaintances, not friends.

If they say, "Let's find something we can do together that will not cause you problems," they are true friends.

You are a Daddy with responsibilities. You need to start making choices for the future. Do your 'friends' have kids?

Most parents find that their 'no kids' friends tend to drop away and their 'friends with kids' tends to grow and strengthen. It is a strong sign of maturing as a parent.

I hope you are starting to get the message. Life is a marathon, not a sprint. Your improvements with PCS will be a marathon. You treat it like a sprint with minute by minute, hour by hour analysis of your life.

I have not focused on minute or hourly or even a single day's symptoms. I look at the trend of symptoms over a month or more time, such as , I had only 4 bad days this month while I had 10 bad days last month. This is the only way one can observe improvement.

Your life changed that day. It will never be the same. Mourn it as the past and start looking for your new life.

You can do it. You son needs you to do it.

My best to you.

Mark is so right, you have to live in the day and time your in.

Work through what is going on at the time.

But with the fog for me it took a anxiety medicine to help.

Donna:grouphug::hug:

Yeah, your right.

Once again, thanks for the wonderful advice you've given me over the past few months. What I'm going through, what we're all going through, is really hard on us, you've shown nothing but compassion and support. Thank you :).

I just got back from hanging with one of those "true friends" you spoke of. He's been there for me since I got assaulted, taking me to numerous doctor's appointments and emergency room visits and really understands what I'm going through and cares. He knows what I can and can't do and is totally cool with it. We actually went to go shoot pool...one of the few things I can still do since the pool hall is usually dark and quiet. We always get a table towards the back, away from the jukebox. I just let him know when I start feeling the symptoms coming on and we go.

So true about the "friends with kids" and "friends without kids" thing. I'm starting to realize how distanced I've become with my friends without them.

I'm starting to get the message.

Any time I feel like I'm walking off the path I'll read this post.

So funny that sometimes we need someone else to point out the simplest solution to us. We can't see the forest for the trees. I am terrible about that. It took me a while to figure out who I could count on and who I couldn't...and to be honest, it broke my heart in the process. The friends you can count on don't care about the casino's or any of that other BS. They care about you.

Your friends are always going to be your friends. You just have to separate the wheat from the chaff.

Good luck!

I kept pushing for the middle months trying to go out and "be normal", go to bars, watch sports, casinos....i did it all. And i had anxiety going in and anxiety and bad symptoms leaving. I knew i shouldnt have been putting myself in those situations. When i finally stopped putting myself in those "normal" situations and started REALLY TRULY taking good care of myself and focusing on just me. I started to get better. Acupuncture helped a lot!!! I stopped going for about a month, and the headaches were starting to creep back in....so i just went a few days ago and i havent need a single pain med besides my nightly nortriptyline.

I also stopped analyzing my situation so much....and honestly...i stopped coming on this website for a while because i started to see that i was picking up other peoples anxieties as well and talking with others who werent getting better were making me think i would never get better. Well, your thoughts are very powerful and if you keep thinking you arent gonna get better....you are setting yourself up for anxiety and failure. Start thinking positive. Start taking REALLY good care of yourself with your diet, supplements, environment control, stop doing things that typically bother you, if it means being bored or learning to read a few good books....its better than a lifetime full of symptoms. The time to start taking care of your self is right now. If it also means spending a little extra money on alternative therapies like acupuncture, massage, or whatever else you think will help....its an investment into your life.

Ive written before about Healing Touch International, and how powerful it is. There are nurses all over the country that do healing touch treatments for clients who need help with relaxation, pain control, overall balancing of energies, and hugely with head injuries. I can say the combination of diet, acupuncture, healing touch, a therapist, supplements and vitamins, and my doctors prescribed meds, and REST all got me to a great place where i was pain free.

The only times i notice headaches now are when i've been neglected my body for many days in a row....like drinking too much, forgetting to take my supplements, or not doing healing touch on myself or acupuncture for a long time. I just get right back on track and do what i know works. Yes, it might be lonelier staying at home, but i make it as good as i want....Ive been using the time to work on my own personal growth, reading, meditating, exercising, and being happy in my own skin at my own home with the good friends that have stuck around or by myself. I no longer think of the brain injury as a curse....but a blessing!!! I'm happier, more positive, and the healthiest Ive been in my whole life once i worked on me! It took total chaos for me to now have clarity and see that i was living an unhealthy lifestyle and truly blessed and thank god that i can know see all the ways i should be living. Good luck

I've been wondering when I need to think about what I'm dealing with is permanent too. It's been about 18 months since the initial injury for me, but the injury caused me to have iicp for six months after that, so everyone says I need to count healing since the spinal tap that relieved the pressure.

Regardless of whether it's been 12 or 18 months, I still feel largely impaired compared to how I was before the accident in many ways. The people I work with perceive me as very impaired as well. I don't want to talk about all the symptoms or impairments I'm dealing with. Suffice to say I dislike them intensely and I get scared I may have to live with some of them for the rest of my life more often than I'd like to admit.

But I still notice improvements, and so do my friends, family and co-workers around me.

My boyfriend says once it appears that the improving has stopped, then I can worry about having to live with whatever's going on with me for the rest of my life. Once we notice a long period of plateau then we can consider that I might not improve much more. But the improvements really continue to be very noticeable. It just feels like overall very slow progress at the same time. (I was a very accomplished, bright, over-achieving, independent, hyperactive and energetic person before the accident and the impairments have been vast and seem to have affected many areas of my brain, so there's still a lot of improving to do.)

And my Dr. told me early on that I should NEVER ride a roller coaster again. The car accident that gave me the brain injury, gave me pretty severe whiplash and gave me bugling disks in my spine. She told me riding a coaster might harm my spine and I think she also said it could hurt my brain too.

Personally, I would NEVER risk the chance of anything remotely similar to what I'm going through now from jostling my head around for a 60 second joy ride on a roller coaster - it's just not worth it to me! I even bought a HUGE SUV to try to ensure I'll never be in as bad a wreck as I was before... (My compact car was totaled between two large SUV's while we were all at a dead stop by a fourth vehicle that was speeding and didn't see that traffic had stopped...) I'm doing everything I can to protect my brain from another injury.

nwsmith1984 - Can't you just watch your son ride the coaster? Or give him cash so he can go with his friends? Maybe you can be joyful that you can provide that experience for him rather than sharing it right next to him while he's having it.


nightnurse, I'm *so* glad to hear you're doing so much better! BTW: I'm a Reiki Master and a Re Hu Tek Healer, and I'm trained in other healing modalities as well. My mom and her best friend are healing touch practitioners and reiki masters as well as RN's too.

Years ago when we determined that I needed to severely limit my driving, we consolidated cars and bought a brand new, full size GMC Yukon. We are not usually new car people. They are just too expensive. This time, the new Yukon offered side curtain airbags. We felt this was an important feature to have since auto accident concussions often come from the side glass or door pillars.

EstersDoll, You said <I was a very accomplished, bright, over-achieving, independent, hyperactive and energetic person before the accident and the impairments have been vast and seem to have affected many areas of my brain, so there's still a lot of improving to do.)>

These same people are often the most effected by persistent concussion symptoms. We are so used to working at the top edge of performance that we notice every difference. It is also a reason we rarely get good concussion diagnosis and care. Our post concussion functions are still so high that many dismiss us. I believe the NeuroPsych who first assessed me was intimidated by my high IQ scores. He was definitely pushing the limits of his IQ and making up for his deficiencies with ego and arrogance.

We are also most able to develop many work-around skills for our good days. They don't help much on our bad days as we struggle to sense any intelligence at all.

As some have mentioned, learning to live in the present and find ways to keep going has made us better, more compassionate people.

Some one mentioned a high maintenance wife on TV tonight. I asked my wife if I am high maintenance. She said No, not now. But she said I was high maintenance 6 years ago, before I started working at learning better people skills and coping skills.

Hope we can all learn to not be high maintenance.

My best to you all.