[kikimoma]

Hello, I am new here and reading through posts I cannot find an answer to my question. First let me give you a little background. My 36yr old daughter sustained a level 2 concussion on 12/10/2010. She continued to develop symptoms for two weeks after and had two CATs which show no bleeding or fractures. She is now under the care of a neurologist who has ordered another battery of tests for her. She will see him again in two weeks for the results.

Right now her persistant headache is being treated with Gabapentin and it seems to be helping a bit although she isn't at full dose yet. Gradual increases every three days till at therapudic dose.

Her symptoms include headache, vetigo, dizzyness, cognitive function (cannot read or write without extreme difficulty which ends in severe headache pain) She is noise and light sensitive, mild confusion and easily overwhelmed and fatigued.

She has been wearing sunglasses when not in a darkened room but we are now wondering if this is counter productive to her regaining her ability to be in lighted areas. How can we increase her abilty to tolerate light and should we attempt this at all at this time? Thanks

[Mark in Idaho]

Welcome to neuroTalk, Sorry to hear of your daughter's struggles.

The sunglasses are fine. She needs to give her brain rest from over-stimulation.

She is still in the very early stage of a concussion. Try to help her be patient and stressfree so her brain can heal.

When her brain reacts to a situation, it is simply saying, That situation was more than I can handle at this time. The brain is not like a muscle. Muscles can heal while under moderate stress or even exercise. Brains need rest and plenty of it.

If the imaging studies are normal, further diagnostics are not likely to help. Only a neuro-psychological assessment will show much. Normal EEG's and such will not be much help. A qEEG reviewed by an experience clinician may show the dysfunction but will not help with treatment.

I am surprised at the stepping up of the dosage of gabapentin. It is usually very easily tolerated at a therapeutic level. I have never heard of it being used for head ache but am not surprised if it helps. I take gabapentin to help my brain relax and then take Tylenol for the headaches.

Her struggles may also be caused by upper neck/cervical injuries. An Upper Cervical Chiropractor may be helpful. NUCCA.org or atlasorthagonality.com has lists of chiros. Many generic chiros will tend to be too aggressive with the upper cervical area.

Regarding light sensitivity, I have been sensitive to bright light for decades. Wearing tinted lenses and brimmed hats helps me focus on the important things. Otherwise, the bright light tends to distract me.

Your daughter is going through a common progression of Post Concussion symptoms. The delayed onset is classic Post Concussion.

I'm curious. What dose of gabapentin is she targeting?

My best you you all.

[wtrpk]

I'm on month 4 pcs and just stopped a few weeks ago wearing sunglasses. Even the refrigerator light was too much for me.

I'm curious...can your daughter watch tv or computer? I still get wildly dizzy from both after 15 or 20 mins. My head tingles etc.

I only get the ad headaches when overstimulated. ..lots of people or if I try to get back to my normal like..shopping etc.

Best wishes for a speedy recovery...but most women take longer to heal.. Espec over 40

[kikimoma]

Thank you Mark, I am not sure what dose she is at (3 pills/day) or what she is to go up to (6pills/day). She was told she had to both ramp up and wean off when the time comes. The Neurologist seems really good and so far no concerns with him. He has ordered bloodwork to see if there is any underlying cause that might be contributing to her symptoms. He says it is "out there" but good to check anyway. He is testing harmones and T4 among other things, He has also ordered a closed MRI with and without contrast of both the head and neck. That is scheduled for Thursday. In addition he has ordered an extensive inner ear testing which he says will not be pleasant but feels is necessary.

I have concerns for my daughter because her husband is a bit of a difficult person. He doesn't want me involved other than to help with the children but he is a very poor advocate for her. She told me that when they saw the neuro together he zoned out and she couldn't follow what the doctor was saying and that the doctor had to go through it all a second time. Hubbie even seems mildly put upon that she is not herself. Didn't even take time off from work in the beginning. Yesterday, he had her helping him redo the kids playroom by sorting toys and organizing them.

While I thought sorting was a good activity for her I was concerned about the amount of stress setting up an organized system might cause her. So I asked if she was able to do that and if it was giving her a headache and his response was "she's fine". Further probing determined that she could not do that part of it and that he was taking care of the "organizing". Then later when we were driving to a light display that I was going to take the kids to by myself but he insisted we all go to he swerved rapidly shaking the van quite a bit as a joke. I told him that wasn't a good thing to do that she didn't need her brain shook up any more than it alread has been. He said nothing. I'm hoping that he didn't take it up with her later as my meddling and causing her more stress.

She is trying so hard to be "normal' and has the stubborn athletic attitude of pushing through pain and difficulty. Thankfully I have her to myself for a few hours a day (but not this week because he is on vacation). During that time I try to assess what she can and can't do without difficulty and what her needs are and I encourage her to advocate for herself with neighbors and friends.
I also help with the children's homework so she doesn't have to. I run them to their activities when their father can't. And I pamper her and keep her company till her husband comes home.

Her husband won't read anything outside of work so I am the one doing the research since she can't and she wants the information. Yet he tried to shut me up when I told her about the risks of continued high doses of OTC pain meds and that it was a good thing her doctor was trying to get her off them. I must keep my peace with him so I can help her. It will be a tough road if history dictates how he is going to deal with this situation.

[kikimoma]

Aireyden, No she cannot watch TV and can only do the computer via her droid phone (smaller screen less light) and only for about ten minutes at a time.

She gets nauseous dizzy and her head aches with activity and too much stimulation. She said yesterday that she hadn't realized how much we had altered her daily environment until she visited her sister's house for Christmas dinner. She also cannot stand u if her eyes are closed she will fall.

[wtrpk]

I basically only work thru my blackberry. I have a very similar situation to your daughter...but my initial 2 months I couldn't get out of bed..put kids on the bus and layed in my dark room no music or tv. My husband has been extremely supportive ..does all the food shopping and even did all the xmas shopping.

My heart goes out to your daughter...luckily she has you. I was on my own other than hubby. My daughter just started college and boys are 7th and 4th grade.

Do sounds bother your daughter?

How is she sleeping at night? Insomnia is awful!! What about ringing in the ears??

[kikimoma]

My daughter has some sleep disturbances and she also has a ringing in her ears that she describes as simular to being under water.

Her husband has been doing the grocery shopping and most of the cooking and errands so I am sorry if I portrayed him as totally disconnected. The difficulty is that he will only plan one day at a time and won't set things up for long term even though she has asked him to. He also is in alot of denial and IGNORANCE and doesn't even try to educate himslef on how to be the best partner/advocate he can be.

He is of the notion that she should try to do everything she wants to try (except the driving but even that he thinks she will be able to do very soon) and if she can't then well rest a little while and try again. He isn't getting that rest comes first. He feels that she got enough of that the first week when she was sleeping most of the time.

This isn't the first situation like this he has had to deal with. Each time he takes too long to realize how much help she needs. She almost died with their firstborn due to a severe hemaorage that was ignored by the staff till she lost consciousness briefly. She neded transfusions but she has a medical condition that needed to be concidered in administering them and the staff was being uncooperative. My daughter tried to explain but was confused and weak. He was not advocating well for her so I steped in and he and his family got really upset with me. I forsee a few more of those situations comming up in the weeks to come if he doesn't educate himself on PCS.

BTW where can I get a copy of the TBI guide by r Johnson?

[Mark in Idaho]

kikimoma,

The TBi Guide is at http://www.drakecenter.com/file.axd?...vivalGuide.pdf for download and print out. You can read it online chapter by chapter at www.tbiguide.com

You need to read it and find the pages that are her symptoms. Highlight them for your SIL to read. Ask her neuro if he can get her a social worker. Some neuro-rehab centers have social workers who can help the family get on the same page.

The blood work can be beneficial. Folate and B-12 levels can be assayed and supplements can be taken to up the blood levels. Hormones are also important, especially at her age. She is in the middle of no-man's land. Drs don't usually think about hormones at her age but they can get really screwed up.

The sorting and organizing the kids' bedroom can be useful if she can do it ALONE. The slow pace and manipulative nature of sorting can be therapeutic. I spent hours upon hours sorting cans full of misc nuts, bolts and screws. The one step at a time pace allowed my brain to complete many tasks. The visual exercise was also good.

If she tries to take on any tasks, she needs to recognize the signs of fatigue. The slightest sense of zoning out means stop, change environments, and maybe even take a nap. If she thinks she can push through, she will find out that she may be able to but she will pay dearly. Her following crash will put her down for the count, maybe hours or even days.

If she wants to try reading, use a sheet of paper to cover the text she is not reading. This will lessen the risk of overload. I can't fill out forms with lots of blank spaces. My mind keeps wanting to try to understand all of them at the same time. If I hide most, I can then focus on the few I need to fill out. Is this making sense?

Check with your Motor Vehicle Department for a driving rehab program. They may have a resource to use to get her hubby to back off the driving insistence. I drive in very limited situations and yet, most people would think I am symptom free. I can do well at night because I can only see the area lit up by the headlights. During the day, my mind wants to process everything so I struggle to stay focused on the lane I need to be in. I also cannot drive much faster than 35 to 40 mph except at night. Too much visual stimulation flying past the car.

The simple explanation for everyone to understand is this. The part of her brain that acts like a traffic cop/signal is malfunctioning. Rather than let just one lane of traffic go, it lets every lane of traffic go without any direction.

The neurological term for this is 'gating.' If this gating mechanism fails, the brain become overwhelmed with too much information coming from every direction at once. Think of the days when you have a bunch of kids all trying to tell you something different at the same time. You have to finally yell, Stop, one person at a time. That is what her brain is doing except it does not know how to yell stop. It just crashes into the wall.

Your daughter has two things available to her right now. Ear plugs and closing her eyes. Both can do wonders to stop an impending overload. I have to tell people about my need to close my eyes when trying to focus in thought. They get confused otherwise.

Regarding the gabapentin, I started off at 600 mgs. After 8 years, I needed to increase my dose and doubled it overnight. Then I realized that I could split the large tablets and now take 900 mgs. I only take it before bed. Otherwise, my mind and body race with nervous energy. Back when I started taking it, it was only sold as Neurontin. It was very expensive, about $600 per month. My health plan covered it so it only cost me $35 per month. Now it is available in generic and is affordable.

A system that helps me is to wear clothes that are soft and have no uneven feelings. I do best in cotton. In the beginning, I slept with chenile gloves on so my hands did not feel cold or uneven. If she experiments with different textures and fabrics, she may find that there are some that allow her to relax better. I have a soft stuffed donkey that I sometimes hold to give my brain that soothing sensation. It is amazing what one can do to trick the brain into a comfortable place.

More later. Let us know how things are going.

My best to you.

[kikimoma]

Mark there is a place for you in heaven. Thank you so much for your caring attention to my concerns. I have downloaded the guide and am in the process of studying it. I will do as you suggest and highlight pertinent information but I am not certain her husband will read it. I also found a DVD on Amazon that I ordered. I am hoping he will watch that if I give it to him.

I am not sure I will be able to talk with her neurologist. I have not be invited to her appointment as of this time. I keep reminding her to write down any questions she has for the doctor and to maybe take a tape recorder to her appointment. I will also suggest that she ask about a social worker.

I will also have her try your suggestion of covering the page of a book with another sheet of blank paper when reading. She has always been an avid reader and is missing it already. I have also volunteered to read to her and she seemed receptive to that.

She has not said anything about uncomfortable clothing or tactile stimulation when trying to sleep being a problem but I will read your suggestions to her all the same. It is possible that she just has not realized that this is an irritant affecting her sleep yet.

I will continue to check in here with my concerns and updates on her testing. Once again, thank you for all your help.

[ConcussedinPA]

I am 16 mos PCS and still experience light sensitivity. It has gradually improved, but I still tend to wear sunglasses when I leave my house. Sunglasses in various tints have been very helpful. I especially have problems with bright overhead indoor lights. Whenever anyone looks at me, I simply state I am light sensitive.