Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 11-13-2013, 10:55 AM #1
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Default Need guidance for girlfriend with possible PCS

Hi all,

I feel fortunate to have stumbled upon this forum as I've been frustrated by the lack of information that is available through our doctor. My girlfriend fainted about two weeks ago, hitting her head on a very hard wood floor. She came to after a few seconds but was unable to speak to me for a few minutes. Eventually I was able to gather her up and get her home and in bed. She was very confused and was in and out of sobbing. When I got her home she was a bit dazed, but generally with it.

Over the next day she had a few emotional outburst and needed to be calmed down, noticed that her coordination was a bit off, felt spacey, pain in her left forearm and some tingling in her fingers, dizzy and nauseous in the car, changes in her sense of taste, overly sensitive hearing, had trouble with faces, slowed speech (reaching for words), and I noticed that she was becoming childlike. Very calm, but glazed over and a bit distant.

I rushed her down to the ER and they admitted her right away. They did a CT scan and EKG, both came back clean (whew). We were finally discharged after a few hours with a diagnosis of "concussion" and that we should follow up with her doctor later that week. He is a nice fellow, but didn't really know what to do with her except to tell her to get lots of rest and fluids.

I won't list all the symptoms for the following two weeks here (I have been keeping a log), but she has been making some progress. She is able to walk more often unassisted around our apartment, though she took a step back yesterday. Her memory (long term and short) is great, as is her sense of humor (though she can't take any jokes that involve her). Her word recall is much stronger, and a sort of stutter she had developed seems to be fading. It only pops up when she is tired. She usually ends each day with a feeling of being "dopey". That childlike glaze comes back and breaks my heart every time. Her taste, and motor skills seem to be back and her vision is unaffected. We have been spending time listening to podcasts, doing jigsaw puzzles, painting, eating good food and lots of rest. I work from home so it has been very helpful for keeping an eye on her.

The main symptoms that seem to run the show now are emotional and psychological. She becomes easily overwhelmed in conversation or by too much stimulus. She is terrified of loud noises and it will usually cause her to cry and need to be calmed down. She has also complained of strong feelings of depression and anxiety and a complete inability to deal with anything negative, whether it's in the news or something in our life (she will basically shut down and get very quiet). We took our first trip outside the apartment yesterday, and it was a total disaster. We live in NYC, so there is not much space for a quiet stroll (garbage trucks, people everywhere, honking, all of that). Her reaction was to basically stare straight ahead and speak very quietly, almost inaudibly. The walk didn't last long and she came back inside and lied down on the rug, unable to speak or move much for the next half hour. We've been back to our normal routine since as I felt the walk did her too much harm.
Around 2pm that afternoon, she lied down to take a nap and complained of hearing noises that weren't there and feeling as they she were going a bit crazy. She said that the hum of the refrigerator (usually a distant, quiet one) grew very loud and even distorted in her ear.

Her doctor wants to see her again, though I'm not sure it's worth the hour cab ride that last time seemed to only negatively affect her (dizziness, overwhelmed, anxiety, nausea), so that he can tell us that she needs to sleep more. I also am uncomfortable with self-treating this as I am not a doctor and would like her to have medical attention in case there is something else that might be at play. In particular I'd like to find a neurologist, though I know some people here have had negative experiences with them.

Does anyone here have a good recommendation for a neurologist in the NYC area? Someone with an understanding of concussions? Does it seem like we are dealing with PCS here?

Any advice on how I can help my girlfriend with some of her other symptoms? I feel torn between keeping her extremely comfortable and happy, and also helping her to slowly become desensitized to the outside world.

Thank you!
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Old 11-13-2013, 02:55 PM #2
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If you can, take her to NYU - they have a concussion specialty department that was just launched in March.

She should have an MRI done. If she can get one with Diffusion Tensor Imaging that would be ideal because the effects of concussion on the brain can often be seen only on an MRI that with Diffusion Tensor Imaging.

Every head injury is different.

Is she on any medication? They had me take an anti-depressant for a few days and it made me hallucinate. It was the scariest evening of my entire life!

Later, when I told a Psychiatrist what had happened he was appalled that I had been given any drugs because apparently head injured patients tend to react differently and are much more sensitive to medications because of the brain chemistry changes that are going on due to the injury and healing process.

I am sure she's sensitive about her functioning levels which will make it difficult for her to have humor about herself for at least a while...

Be patient with her. Things will get better. But they may be a little weird in the meantime.
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Old 11-13-2013, 09:26 PM #3
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Default Oh patience!

You are so kind to be helping her out.

If you can avoid being outside in all the confusion etc. then do so for now.

Early on, when my husband drove me to appointments, I covered my eyes so I would not see the traffic or any of it because it was too visually stimulating. That might help her if you must travel. Even drving in the car made me dizzy sometimes and your girlfriend might feel dizzy too.

She needs brain rest, so limit screens and TV, texting, computers, all of that.

There are helpful stickies here with good info. too.

It can be really strange and stressful taking care of someone with a brain injury so take care of yourself too.

Keep asking questions if you have them and updates are great too. This a very helpful places.

Take care

pm
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[SIZE="1"]What happened. I was in a car accident 2-23-2013, and got a mild concussion from it. I had some time off for brain rest, got somewhat better, but slipped into PCS in March 2013.

Symptoms I had: dizziness, light and sound sensitivity, fatigue, tinitis, occasional headaches and migraines,

Symptoms as of 5--2013: poor sleep, tinitis, some confusion /short term memory blanks, balance. The other symptoms are mostly gone, but flare up if I OVERdo something.

Therapy I had: vestibular

3 months in: I could drive more and for longer distances. I felt like a younger, happier version of myself and I feel so blessed to have this feeling.

9 months in and I am working full time. I do get tired, and some sound and light sensitivity from time to time, but mostly I am over most of my symptoms.
I pray every day and I m praying for your recovery.

Over a year in: I can multi task (limited) and have humor in my life. But when I am tired, I am very tired.
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Old 11-16-2013, 10:50 AM #4
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Default First visit with neurologist

Thank you both for your advice and kindness.

She had her first visit with the neurologist yesterday. Earplugs and sunglasses saved the day, and we were able to take the subway, though it was very exhausting for her.

Much of the visit was spent one on one with him giving her an exam, however, I was concerned that he didn't get a clear enough picture of what her symptoms had been up until that point. She told me afterwards that she was very confused and unable to really explain much of what her symptoms had been. The good news is that he administered a thorough physical exam to check for everything else, and came back saying that she had clear symptoms of PCS but that everything else seemed to be alright. He wants to follow up with an ultrasound and an EEG to look more into why she fainted in the first place. We'll also be doing a follow up next week to check on her progress.

Following the exam she came home and had a nap. Upon waking she said it felt just like after the concussion. She was having trouble remembering immediate things, was very confused, had difficulty speaking, and her vision would "flicker" as if a light switch was being turned on and off. I managed to keep her calm and in a few hours the symptoms subsided and she became more lucid and easy going. I'm at a loss for why this happened, but my best guess is that it was a stressful day and the doctor was also asking her to do a lot of physical things (pushing her around, moving her head quickly. possibly she aggravated her injury and that's why she seemed to be back to day 1?)

Our plan is to continue with rest, low stress, plenty of fluids, vitamins, and possibly look into some acupuncture (she's has success in the past) as she continues to meet with this neurologist. She has also started listening to ambient noise / binaural beats and has said it helps to keep her calm after an anxiety episode.

As her caretaker I'm exhausted, but doing alright and staying positive. The main things that I'm struggling with is knowing where the line is between her symptoms flaring up and a true emergency where we need to return to the ER. I know that recovery tends to be one step forward, two steps back, but to see her revert to day 1 was really difficult, and I wasn't very far away from bringing her back down to the ER out of concern for her well being.

Are there any red flags that I should be looking for?
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Old 11-16-2013, 01:24 PM #5
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Default red flags

Hello

Glad she made it to the appt and back. Yes, all of that is absolutely exhausting. And getting out to appts. might make her tired for a few days afterward.

As for red flags, I recall my doctor saying that if I had a very bad headache, like one I've never ever felt before to go in ASAP. But that was just after the concussion so I don't know if that helps or not.

Your girlfriend will just need lots and lots of rest and a low stimulation life for a while. The brain is a slow healing organ.

I don't know about other red flags you will want to look out for. You seem to have a good understanding of this so far, and it's important to take care of yourself too.

Other people will weigh in.

Thanks for the update.

Sincerely,

pm
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[SIZE="1"]What happened. I was in a car accident 2-23-2013, and got a mild concussion from it. I had some time off for brain rest, got somewhat better, but slipped into PCS in March 2013.

Symptoms I had: dizziness, light and sound sensitivity, fatigue, tinitis, occasional headaches and migraines,

Symptoms as of 5--2013: poor sleep, tinitis, some confusion /short term memory blanks, balance. The other symptoms are mostly gone, but flare up if I OVERdo something.

Therapy I had: vestibular

3 months in: I could drive more and for longer distances. I felt like a younger, happier version of myself and I feel so blessed to have this feeling.

9 months in and I am working full time. I do get tired, and some sound and light sensitivity from time to time, but mostly I am over most of my symptoms.
I pray every day and I m praying for your recovery.

Over a year in: I can multi task (limited) and have humor in my life. But when I am tired, I am very tired.
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Old 11-20-2013, 01:58 AM #6
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My girlfriend is going through PCS symptoms since October the 23rd of this year. Pretty much all the symptoms still exist, but its more tolerable. Cognitively there are delays...such as difficulty comprehending some things, short and long term memory loss, unable to read a digital clock, light and sound sensitivity just to name a few. Strangest symptom is how it effected her voice, she sounds very different. I live in downtown Chicago, so I can relate to all the noise and visual stimulation that can be difficult. How is your girlfriend doing now? Are you seeing progress?

I was an emotional wreck during the first 2 weeks, but slowly I had to accept it and deal with it. I think this it could be a long road ahead, but as long as she rests things are slowly improving.


Quote:
Originally Posted by epicnirp View Post
Hi all,

I feel fortunate to have stumbled upon this forum as I've been frustrated by the lack of information that is available through our doctor. My girlfriend fainted about two weeks ago, hitting her head on a very hard wood floor. She came to after a few seconds but was unable to speak to me for a few minutes. Eventually I was able to gather her up and get her home and in bed. She was very confused and was in and out of sobbing. When I got her home she was a bit dazed, but generally with it.


Thank you!
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Old 11-20-2013, 02:52 PM #7
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Hi Agent007,

I find it hard to measure the progress because I'm so close to it, as I'm sure you are as well. I've been keeping a log everyday (sometimes with her help, mostly without). When I read back over it, I still see all the same symptoms, but the frequency with which they present is changing. She has been having some better days, and has made some progress with trips outside of the house. I make sure to pay attention to new symptoms, and also to acknowledge the positive things she's able to accomplish, no matter how small. Our walks outside the apartment have gotten a bit easier, and she seems to be able to handle more of the world than she could last week. A lot of her initial symptoms return when she becomes overwhelmed or overly-anxious. This will lead to slowed speech, speaking very quietly, some trouble with balance, dull headaches, and a return to a dopey or childlike behavior.

Earplugs and sunglasses have been a huge help for our ventures out of the apartment. I can't recommend them enough. She has also found that listening to ambient noise or chants has helped to curb her stress when she is feeling anxious. There is an iphone/android app called iMeditate that's free and she has been using that every evening before bed.

We are meeting with a second neurologist next week, as the first one spent most of our visits typing on the computer and has left us both overwhelmed and confused with so many questions unanswered.

Besides trying to stay on top of the getting her medical attention that she needs and a clear recovery plan, these are a few things that I've found helpful. I'm not sure if they will be relevant to your girlfriend but I hope they can be of some use.

1) Going to bed at the same time every night, and letting her sleep as long as she needs to. Short naps / meditation breaks of about 20-30 minutes have also helped to recharge her during the day. She was taking long naps (2hrs) during the day, but I found that these long naps almost always lead to an emotional episode / difficulty coming back.

2) Drinking plenty of water, eating good meals, and having a regular vitamin regimen. Regardless of the direct impact of good nutrients, good food keeps her spirits up and something to look forward to. The vitamins seem like something to invest in for the long term, but we've been doing a multi, vit D3, iron (she's anemic), a B complex, and fish oil.

3) Spending time doing puzzles, listening to podcasts, and painting / drawing. All three of these have let her conscious mind shut off a bit and helps her to feel a sense of accomplishment.

4) Not asking her about her symptoms all the time. I ask in the morning and in the evening. Making sure to be steady and encouraging. My girlfriend's most alarming symptoms right now are emotional. If I am upset or stressed she can sense it and she will unwind, become very upset and needs to be consoled. I speak with my friends / family and am trying to find ways to take walks for my own head, but I find it important to keep a sense of positivity for her and make sure that her mind does not wander towards worry and anxiety.

I am hoping that we are starting to see the first steps towards her getting better, but like yourself, I'm not sure how long a recovery we're in for. Please share anything you're finding and please let me know how she is doing.
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Old 11-20-2013, 08:20 PM #8
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Hi,

I just wanted to thank you, on your girlfriend's behalf, for taking such good care of her. I'm sure she appreciates your support more than you can ever know. I hit my head about three weeks ago and have had a terrible time with headaches and whatnot, and I feel guilty because I worry about being too much of a burden on my husband, who had surgery just a few days before my fall. I'm sure my emotional outbursts are driving him crazy, and I'm trying to not make my headaches, nausea, etc, his problem... but on some level I know that, if he's going to be around me right now, he has to "put up with" my symptoms. I'm sorry your girlfriend is going through this, but in a way your post is therapeutic to me because hearing about someone else who wants to support someone with a head injury makes me think maybe my husband feels the same way you do (he may not... but at least it's possible).

Anyway, not to hijack your thread, but thanks. I hope she continues to improve daily.
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Old 11-21-2013, 12:16 AM #9
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Default yea for the caretakers!!!!

I don't want to take away from your thread either. My husband, mom, and teen daughter took care of me. I know it is stressful and so important.

I just wanted to commend you -- the caretakers.

God bless you and just keep asking your questions. Part of being in this mysterious brain healing is --- becoming your own advocate or advocating for your loved one and asking questions.

It's a scary journey, but with your faith and will, you will make it.

Yea for the caretakers!!!!! WE could not make it without you,
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[SIZE="1"]What happened. I was in a car accident 2-23-2013, and got a mild concussion from it. I had some time off for brain rest, got somewhat better, but slipped into PCS in March 2013.

Symptoms I had: dizziness, light and sound sensitivity, fatigue, tinitis, occasional headaches and migraines,

Symptoms as of 5--2013: poor sleep, tinitis, some confusion /short term memory blanks, balance. The other symptoms are mostly gone, but flare up if I OVERdo something.

Therapy I had: vestibular

3 months in: I could drive more and for longer distances. I felt like a younger, happier version of myself and I feel so blessed to have this feeling.

9 months in and I am working full time. I do get tired, and some sound and light sensitivity from time to time, but mostly I am over most of my symptoms.
I pray every day and I m praying for your recovery.

Over a year in: I can multi task (limited) and have humor in my life. But when I am tired, I am very tired.
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Old 11-21-2013, 05:53 AM #10
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epicnirp,

Its good to hear from you. Its been a very rough month, but like you said its hard to see the progress when you are there daily.

We always ate fairly healthy before, but its more serious these days. We also have been following the vitamin regimen laid out on the stickies, drinking plenty of water, reading a little bit each day, and she does a personal project for about an hour each day. She doesn't seem to want to get away from her business and she is really pacing herself well, so these personal projects are business related. She and I also pray together daily and I also use this as an opportunity to assess her without her knowing. I notice improvements in her word usage and memory over the days. She sometimes doesn't think about things being hot or a knife being sharp, which is always scary for me to think about when I am not home or trying to sleep.

Like your girlfriend mine is also anemic and I am starting to suspect a mild case of sleep apnea also.

In terms of medication she takes one advil 3 times a day (at 730am, 330pm, and 1130pm), she also takes a benadryl at 1130pm. Her headaches are still there and she rates them at a 2-3 out of 10. She uses icepacks about 4 to 5 times a day for her neck and also her head. Her neck is still sore to touch after all this time. She goes to sleep the same time each night and that is around the time I leave for work. For the last 5 days, she is able to stay home by herself while I am at work.

Just as you stated, all the symptoms are still there, but not as bad as the first week. She can become emotional easily so I also do my best to not stress her out. It can become difficult because I have a stressful job and I work nights and sleep has been an issue for me. Luckily she is still the same extremely caring and sweet girl that I first knew. Its difficult to watch the "dopey or childlike behavior" that she also presents with at times. Her long and short term memory is still effected and I haven't noticed any improvements in the longterm memory since the concussion. She has pieces of information and events missing in her long term memory. We have been in a relationship for 2 years now and its tough to see her not be able to remember some of the trips that we took together. This is one of the toughest part about this whole situation for me. Short term memory is improving, but very slowly. Her speech has improved, but her voice is still different from before.

I also have dimmers on all the lights at home, so that works out nicely. We also have blackout drapes in the bedroom windows when she really needs total darkness. Also I bought a motion sensor night light to help her navigate the bedroom at night.

In terms of getting further medical help...that has been an issue due to her not having health insurance. Honestly, I am really believing that time and staying away or limiting things that aggravate symptoms is the best thing to do. I do have an appointment for a clinic doctor on December 2nd, and I am expecting it to be a waste of time. Hopefully we get a referral to someone that knows about PCS from that appointment.

Please continue to share your experience and I will do my best to do the same. Stay strong, things will work out.
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