What to do?
 

Haven't posted here in a few weeks. Have had exams and surgery. Been somewhat busy. Sorry.
I was hoping to get some insight from some of you guys about how to approach a Drs appt on Monday. I probably need to give a little background.

I'm in school studying American sign language and hoping to eventually go back to work as a social worker with the hearing impaired. Things have been rough the last few weeks with school because of the surgery and doctor appointments but also my inability to not get distracted. I had a one on one with my professor. That was his main complaint with me about my signing skills was that I would start a dialog and get distracted by background activity and need to restart a sentence or thought.
I expressed my concerns to my physiatrist (PMR DR) Thursday and asked what I could do as far as exercises in order to remedy this. He said that he was going to have me see another PMR in his practice and maybe she could come up with some meds or treatments that could help.
I'm afraid that my reaction to him saying that meds may be the answer was not the most positive. I'm terrified that medications will only slow me more and make it impossible for me to complete school-- if it is even possible in the first place. He proceeded to get frustrated with me and tell me that I needed to be open and not just shoot things down up front. He also wrote a referral for me to go through speech therapy along with my physical therapy.

I see this new PMR doctor on Monday and to be honest I don't know how to approach it at all. I always thought that being a person who didn't want to take drugs was a good thing. Now I don't know what to think. I also thought that having a drive to not give up and try to do things that may be hard or possibly out of reach was positive. Now I don't know what to think, how to act, or what to do. I don't even know if I could make myself think another way if I tried.

Are there medications out there to reign in the mind that doesn't dull it? I'm really curious from those who have gone before me.

I'm sorry this is so long. I've just been a basket case since my professor pointed out that he had noticed my weakness. I have a proficiency interview in May that decides if I continue to the interpreter program or not. This professor is one of the 4 faculty members who decides that. His comments were a big blow to me.

I have fretted over my professor's comments, the doctor's frustrations with me, my fears of losing the only thing that gets me out of bed in the morning, and confusion over whether my drive is keeping me alive or if I should just give up and give in and trust that these docs with figure it all out.

HELP

Phyxius,

I suffer the "easy distractability" symptom. My neuro could see it in my qEEG. The neuro-psych suggested it also. My understanding is that it is a result of the 'gating' mechanism in the brain malfunctioning. This is also referred to as 'filtering.'

The brain does not know how to shut out the other stimuli. For me, this other stimuli can be visual and/or auditory. A room with too much stimuli on the walls can be easily overwhelming. My attention will be darting from one to the next with very little ability to pull it to a single focus and stay there.

You need to work on finding areas where you can stay focused on your task at hand. It may just be a quiet room, meaning a room with simple visual stimuli and minimal sounds.

I have had two neuro-psych assessments. Both were intended for diagnosis of work disability.

One was in a very chaotic room, professional plaques and auditory distracts were overwhelming. The neuro-psych Ph.D. did not understand my distractability. He actually made negative comments inferring that the claim of over-stimulation was a aberration and not pertinent to his assessment.

The second was in a very sterile environment. My results from the second were much better that from the first. There was no adjustments to the report for the sterile testing environment. This is not a practical work environment. But, the sterile testing environment was not considered in the final analysis.

You have an opportunity to determine if there are work environments that are conducive to doing your job effectively. If there are, and they can be reasonably accommodated, you should still be able to pursue this direction. Of course, you will still need to master the sign language discipline.

But, ADA (American's with Disabilities Act) provides you with access to 'reasonable accommodations' in a work environment. A fixed office should be able to provide this accommodation. If you need to do field work, this accommodation will be difficult to achieve.

So, maybe you need to investigate further into the work environments available to your career direction.

This distractability is very hard to treat. It is primarily organic. So, learning to recognize it and find work-arounds will be important.

JD,
I probably have to practice at least twice as long as the other students in my class. I know that I will have to put forth more effort than the average person. I'm in ASL 4 now and will be taking my proficiency exam/interview in May. Students have to take that at the end of ASL 4 in order to gain acceptance into the interpreter program. As far as my vocabulary, I think that we are at a 500 word average knowledge by ASL 4.

I appreciate the suggestions as far as distractions. It will certainly come in handy when they take some of the reigns off. Right now they have certain guidelines and scripts that we follow when we are signing into the cameras for the professors.

For the moment I think the thing that is stressing me the most is the appt on Monday morning with the new PMR doctor. I don't want to alienate these docs but I also don't want to live in a haze.

Mark,
Thanks for responding.
I have the biggest problems with auditory distractions. Visual things bother me if they are moving, really colorful,or strange looking.
After my professor mentioned that he noticed me getting distracted, it seemed that the heat had been turned up.
I had two tests that had to be signed in the computer web cam. It seems that he kind of amped things up in the lab where the tests have to be taken in order to either test me or make me tougher.
The 1st test he put me at a terminal where there are workers 2 feet behind me installing a smart board while I was trying to sign the test into the camera. All the while I'm seeing men's butt crack caught on my web cam from behind me. The 2nd test wasn't much better.

You mentioned a QEEG. I don't think I have had one of those. I did have an eeg. Not sure what a QEEG is.

Like I was telling JD-- even though all of these things are weighing me down, the thing that really has me spinning this weekend is what to do about the doc appt on Monday. I really don't want to start shooting things down, but at the same time I don't want to put my schooling in jeopardy either. It usually takes people longer to get so frustrated with me. I've always thought that not wanting meds was a good thing. Now i don't know what to do.:confused:

You might want to ask your doctor about Attention Processing Training (APT). I find that my focus has improved a lot with this therapy.

Cheers

Phyxius,

With your new doctor, rather than shoot down the suggestions, ask for more information about them. Almost all doctors are going to respond negatively if you shoot down their comments.

I take the comments as an expression of the doctor's skills and knowledge. Some what to try the shotgun approach and just throw a bunch of therapies and/or drugs at you and see if they help. Others will be more prone to listen and let you think about what they have to offer.

I have come to the understanding that even Physical Medicine and Rehab doctors are weak on PCS skills. They spend the greatest amount of time getting much more severe patients to the level that we are complaining about. Plus, many PMR patients have coma inducing focal injuries that present symptoms that have a more focused treatment.

If you present yourself as anxious, expect the doctor to try to treat anxiety. Maybe you need a psych therapist or such to help you understand your symptoms and accept them better. Learning to work around your symptoms will likely reduce your anxiety. Trying to force your way through your symptoms as they rage on will be counter-productive.

Your instructor needs to understand your distractability. It should not be his place to throw distraction tests at you. He is not properly trained to understand your PCS distraction issues. Once you get your skill set up to the required level, then you can start working on the distraction issues.

Your disabilities office should be able to help you tone down this instructor's effort to distract you if you can not convince him.

Your goal should be first to learn the skill set. Once you have learned the skill set, then you will need to take it to a mastery level. This means it becomes effortless. Only then will you be able to add distractions, a little bit at a time. Currently, it sounds like distractions are getting in the way of learning.

Hockey, I think that may be included in what they are going to be doing in speech therapy. I'll find out more when I go for my assessment on the 18th. Thanks for the heads up.

Mark, thanks for the advice. I decided to go into the Drs office with a more open mind this morning. I really like this Dr. Probably because she was positive and upbeat.

The new Dr. decided to try me on ritalin to begin with to see if that helps with the distractability. The main thing is that it's not supposed to make me dopey. I have read some positive things from other adults who are taking it for concentration problems. I do not know if they have TBI or not though.

You know anything about the use of ritalin with TBI patients?

I restart physical therapy next week and start speech therapy for the first time. I have hope that it will the key to getting me to where I want to be.

There have been some studies that suggest Ritalin is helpful in some TBI subjects. I would question whether the attention problems in the studies existed at a lesser level prior to the TBI and were made worse by the TBI.

It appears the the result of the Ritalin is evident rather soon. It also appears that a 10 mg dose will demonstrate if it is going to make a difference.

Stimulating a brain that is struggling to function sounds counter to my thinking.

I forget your situation. How much have you done with intensive vitamin therapy? From what I read about Ritalin, it appears to work in some of the same systems in the brain that proper brain nutrition can help.

I have some family members who have been put on Ritalin. They now consider that it was counter-productive to their long term benefit.

You asked about a qEEG. It is an EEG done with more electrodes and processed/interpreted with the help of a computer. A good qEEG specialist should be able to see how you are distracted. If it is a gating issue, the waveform will show it. I don't know how to find a true specialist. My neurologist did qEEG research for 30 years.

Some docs think qEEG is bogus. My physiatrist tried to tell me it is a soft technology, meaning it does not relate directly to a brain injury. The research says exactly the opposite. It diagnostic accuracy is in the high 90% level. It can also be used to pin point ADD/ADHD issues.

My daughter's psychologist and neurologist went back and forth about prescribing ritalin. They decided not to because ritalin can cause headaches and that was a huge problem at the time. If that isn't an issue for you it might be worth looking into.

I've always wondered if stimulants would be helpful in with PCS. Many of the symptoms overlap with ADD. I have often found myself thinking my daughter has concussion induced ADD.

But then you wonder - if the injuried brain needs to rest and little to now stimulation - wouldn't the use of stimulants be counter productive? When do you say - you've "rested" enough and have to move on and try things other options?

My daughter did have qEEG. The results were interesting. It came back more as if she had ADD rather than a head injury. I'd have to say the bulk of the issues I have seen post injury weren't present prior to her head injury - though ADD does run in our family.

That is a very good question. Over the years I've wondered if my daughter had a mild form of ADD as she goes from one thing to the next very quickly. For example, she always seems to be the last one to get a joke. Not because she didn't understand it, but because she had jumped past the punch line and started thinking about other implications. She could always pull her thoughts together enough to pay attention in school, which has been a problem since her injury.

I'm also interested in your comment about "rest and little to no stimulation." Neither our GP nor our neuro suggested this. They both said, "let her do whatever she feels like as long as it is not going to result in another impact." So for 7 months that is what we have done. I pray we haven't slowed her recovery down by not further restricting stimulation. And you are right...when is it enough? When do you quit telling them to turn down the stereo or reduce screen time?

From my understanding, any activities that require mental recuperation can be counter productive. There is a need to try to minimize such activities and learn to understand the tolerance threshold.

Recognizing where this threshold is takes serious introspection. Young people tend to want to just forge on ahead until they finally crash. The culture of feeling like they need to be constantly stimulated makes this a difficult process.

nancys,

How was your daughter's qEEG analyzed?
Some qEEG therapists do not use an analysis database that has a strong brain injury component. ADD/ADHD is often the primary focus of the therapists since it is the most treatable with volitional neuro-feedback.

The NeuroGuide database includes mTBI discriminant factors. http://www.appliedneuroscience.com/

Mark,
Sorry it took so long to get back to you.
Right now I don't know why they call ritalin a stimulant. I have been dragging. I'm only on a half of a Mg pill at AM and PM, but I have been feeling rather sloooow.
I'm supposed to go up to Mg 2x a day after a week. I think maybe I'm too much of a light weight to handle that.

I do take vitamins. I use sub lingual b-12, a multi-vitamin, biotin, fish oil, melatonin, grape seed, and ginko. My internist laughs at me and says that they are just taking my money.

At this point I'm not worried about the ritalin over stimulating me. I'm worried that I will not get over this doped feeling.

You are way behind the curve with your vitamin intake. You neuro is way off the curve.

What times do you take these supplements and what dosages? A multi is a start but a poor start.

The results were sent to Dr. Walker in Texas for analysis and run through a database. The report came back negative for a head injury. He didn't implicitly state she had ADD, but in looking at the recommended a series of protocols for our neurofeedback guy to target, it implied ADD. Many of the areas were executive functioning areas that significantly decreased as a result of the injury.

What dosage are you one? It could just be too high. It could also not be the right stimulant for you. There are lots of different options out there and not everyone reacts the same even to drugs that are in the same class. Formulations and release mechanisms really have an effect. If ritalin doesn't work, the adderall family is also another option. (My youngest has ADHD and I have lots of experience with different medications...)

In the beginning recovery stage - we were told no stimulation - no screens of any kid (tv, computer, texting, etc). We adhered to that for a while, but as she did get better, we did allow screens but in a limited in time. Check out the following news release:

http://www.childrensnational.org/pre...nesJune09.aspx

I did also read that some screen time is ok. The mindless tv is relaxing to the brain. Watching funny shows is also good for the mood. Now, as long as it doesn't increase symptoms, I don't have a strict limit other than she needs to get off a couple of hours before bed.

Thanks for that link. Wish I would have seen it a long time ago. We imposed strict resting after school and weekends and limited screen time to a certain extent. Her socializing was basically limited to friends who came by our house, but she was still going to school all day. After we saw neuro and pscychologist at 3 months they suggested we forget about grades for awhile but never suggested she stop going to school.

I feel guilty...we definately let her do too much at the beginning. We probably slowed her healing down. But at 7 months we are still seeing lots of improvement. And her neuro keeps saying she is way ahead of the curve for this type of injury, so I don't know.

There has to be a balance somewhere between restricting activities and maintaining some sense of self. I'm afraid too much restriction would have brought on depression.

The question, in my mind, is time. If you impose these kinds of restrictions for, say, one month, and then gradually add activities, then will you be more likely to avoid a prolonged post concussion syndrome? And if you can compare nerve regeneration to how babies develop those little brain pathways, then rescricting activities for too long would actually be counter productive. Don't brains need some stimulation to regenerate and find new ways to accomplish tasks? Isn't that what rehabilitation is all about?

Ugh....gotta love that parental guilt!

Don't feel guilty! You've all done the right things in terms of sports activitives and slowly building her back up. School - as long as it is low stress - which it sounds like it is - and it does't make her symptoms worse - I'd have her go. The schedule and routine are good for them.

I also don't think you've done anything to slow down recovery. My daugher is at the 5 month mark and she's still not in school. For the past 3 weeks she's has been working daily with a tutor on only one class and we are slowly building up from this. She tried school for 2 periods last week and did ok. I tried to have her go yesterday, but she didn't make it due to a bad headache. I think we'd have less issues transitioning back into school if her injury hadn't happened 7 weeks into her freshman year. If she were back in 8th grade or if she were a sophomore it would be much easier.

Every situation is different and there is no one size fits all recovery plan. As a parent, we take in all the information we can - from the doctors, internet, other parents, etc - and make the decisions that feel right for our kids. Noone knows them better than we do. I am confident that you would have looked elsewere if you thought your neuro & pyschologist were off base.

Mark, here is what I take (supplement wise),
Ginko- 120 mg in the AM
Fish oil- 2400 mg in the Am and PM
Grape seed- 100 mg in the AM
Biotin- 2000 mcg in the AM and PM
Sub-lingual b-12- in the AM
Multi-vitamin- in the AM

I thought I was doing pretty well by taking the supplements that I take. Like I said in earlier post, my internist thinks that I'm just throwing my money away. The physiatrist hasn't said anything about them either way.

I was taking melatonin for sleep along with those but after they put in the baclofen pump-- it was a bit too much. Now with the Ritalin on top of that, I honestly think I could have an army of fire ants on me and I would just sit here half clueless to their arrival.

Nancy,
Just read my post again and realized that I didn't put the milligrams. I'm on just 1/2 of a 5 Mg tablet 2 times a day for this first week. Next week I'm supposed to go up to a whole tablet twice a day.

That's a really low dose and I'm like a zombie. Supposedly therapeutic dosage is around 10 Mg twice a day:eek:. I really am a light weight when it comes to these things. If I were a drinker-- I would be a cheap drunk.

Maybe it's a stimulant for some people. To me it seems like it does to me what a xanax would do for a lot of people. It's early though, I've only been on it for 2 1/2 days. Hopefully these effects will change. I'm glad it's spring break this week.

That's a really low dose. If you increase to the 5 mg and your still a zombie - then I would question if it's the right medication for you. The stimulants should make it easier to focus but not turn you into a zombie. I wonder if a non stimulant like Strattera would be a better option. It's supposed to help with focus in inattentive type ADD.

Phyxius,

Your regimen is very low in B vitamins and the other neuro supplements.
I would not rely on the ginkgo for much effect. It has recently been shown to have much less effect that commonly promised. I have been taking it for years, too.

I would suggest you take a B-100 complex. It will have 100 mg of most B's and 100 mcgs of B-12.
I would also add A, C, D, E, niacin, folic acid, magnesium, and be sure the fish oil has a good percent of DHA and EPA. Some are very low percentage. Shoot for at least 50 to 60%.
The multi will probably have some trace elements so you can stay with it.

Regarding B-12. There are two types, some people do not absorb the cheaper version and need the methylated version. Sublingual is intended to help absorption but check it.

The important number will be what a blood test shows. You want to be at about 1000 pg/mL for B-12. (picogram per milliliter), 20 ng/mL for folate. Vitamin D helps with a myriad of other processes besides bones so you need to have good D levels.

Magnesium will help with sleep. It also helps calcium absorption. Most people are magnesium, calcium and D3 deficient.

Meat protein will help maintain some amino acids needs. If you are a vegetarian, you need to be sure to get proper amino acids.


Your post said
<Ginko- 120 mg in the AM
Fish oil- 2400 mg in the Am and PM
Grape seed- 100 mg in the AM
Biotin- 2000 mcg in the AM and PM
Sub-lingual b-12- in the AM
Multi-vitamin- in the AM>