Girlfriend with PCS
 

Background

On 10/23/13 around 8pm my gf and I bumped heads pretty hard while in bed. I pulled the blanket from under her, but pulled her along with it and the left back part of her head hit the left front part of my head. We were less than a feet apart. I am an RN and I work nights, so she complained of a headache, but hid the severity of the headache from me and she was mostly normal conversationally with me. After waking up I had to rush off to work, so I didn't notice much more. The next morning I came back tired from work and she seemed to be a bit strange to me and in my tired self, I ate and went to sleep. When I woke up she was about the same as the previous morning. I decided we had to take her to the ER. Went to a Stroger ER (Chicago) due to a lack of health insurance. Short story, terrible experience and came out with a diagnosis of headaches secondary to head injury, with possible concussion. At stroger they did a head CT and gave her benadryl and reglan (migraine coctail) and it helped slightly. I brought her back home exhaused from the near 6 hours of waiting at the ER.

She seemed to have gotten worse by the next day and when her mother came to see her she was shocked. I used this time to get in touch with my friend's friend, who happens to be a neurosurgeon and after my description of her symptoms he immedietly diagnosed it as post concussion syndrome. He recommended I get her to an ER and get a cervical spine CT and an MRI. This time I went to the best hospital in chicago (Northwestern) and they immedietly diagnosed her correctly. They gave her IV compazine, toradol, and decadron. They also did the c-spine CT and MRI like the neurosurgeon recommended. We spend about 9 hours here. During both visits she was telling me she wanted to go home.

A little about her
She is a 32 year old teacher that has taught in Korea for 3 years and speaks korean fairly well, speaks some spanish, but she is fluent in english. Very smart, very caring (almost altruistic), and a perfectionist. She recently started an online business for organic, made to order baked goods and body products. She makes scrubs, body butters, lip balms, cookies, granola....she is very creative and highly talented. She has had one know concussion at age 6 and then at age 13 or 14. She returned to the US in the first week of August to be with me and was done teaching in Korea.

Symptoms by days
Day 1 - Headache (only on left side, which went from back to front and tender to touch on the outside)(pain of 10/10) but almost conversationally normal, with photophobia and sensitivity to sound

Day 2 - Headache (pain 8/10), neck hurting on the injured side, same symptoms as above, but nausea, and not at all normal conversationallly. She would give simple delayed responses and very rarely start any conversation. She would tell me she needs to go to the washroon and wait for me to tell her lets go. She needed to be reminded to keep eating bite after bite. When she gets in bed she would complain of being cold, but won't pull the comforter up until I tell her. She had some long term memory losses. Also started crying because I jokingly said I won't get her boots from high up in the closet. She was also sleepy for most of the day.

Day 3 - Headache (pain 5/10) Same, but after the toradol, decadron, and compazine IV push she was a little less foggy, but still speaking very slowly and rarely starting conversations. At the ER at northwestern I saw her go from shivering to being really hot. (Vitals were stable during all visits)

Day 4 - Headache (mostly 1-3/10 with instances of 5-7/10)She made a sentence with her normal tone. All other symptoms exist. New symptom were numbness of legs and noticing being hot and cold more frequently. Around the afternoon time, she was conversing normally. Able to conversate for about 30 minutes before headaches became worse. She was beginning to make more decisions herself. Still very tired and sleepy, has dizziness at times, nauseous sometimes, photophobia (wearing sunglasses since day 3 to help), sensitivity to sound. We went for a 20 minute walk in the afternoon with sunglasses on. She did ok, but judgment and decision making was slightly delayed. She complained of having too many thoughts on her mind and started pacing around 8 or 9pm. Took benadryl and reglan around 11pm and has been asleep since.

Today is day 5 (10/28/13), so hopefully I see more progress in her. I been depressed for the first 3 days, but did my best to put on a strong appearance for her. Day 4 was better and I will keep you all updated on the upcoming days. Writing this really is helping me and is also a way for her and I look back at this period in time. One thing I know for sure from this experience so far is that she is the only one for me and she is everything for me. Please share your experience or make suggestions. I do plan on taking her to a neurologist and hopefully get her some concussion rehab. Due to her not having insurance this is going to be difficult.

Currently I am allowing her brain to rest as much as possible and I hope to fully get my girl back soon. I hate to see her in any type of pain. If you pray, your prayers are much appreciated.

Welcome to NT.

Sound like you are doing all the right things, and rest will be improtant as you mention. The injury was only a few days ago which is very recent as brain injuries go. Most concussions heal on thier own, best to you both.

The questions I do have is how many hours per day should she be in a dark room sleeping? I have been waking her up for meals and having her go back to sleep. Anyone have some clear guidelines for this?

Also my research shows that I should only have her do light excercise starting at the two week mark. So I guess I made a mistake on that yesterday by going on a 20 minute walk with her.

Agent,

I am so sorry to hear about your girlfriend's concussion. It can be so scary, especially when it changes someone you love so much. You sound like a good caretaker. You've come to the right place, and you've come early which is great. Read the sticky "Things you wish you had known when you first got a concussion" this will help you get a quick grasp on the overall picture. Browse the previous posts. You'll learn a lot.

What will be important is that your girlfriend knows not to consume caffeine or alcohol even when she starts to feel better. These things will bring on PCS or make PCS return. There are other things not to consume, but you will read about them if you browse the posts. Doctors will likely not tell you what you read on here, but the suggestions here are good recommendations that we have experience with.

With your girlfriend being a perfectionist, her biggest challenge is going to be not to overdo it and anxiety with her loss of control. Her greatest strength will be her ability to follow the advice here and self discipline. I am a perfectionist and I have learned to let go much more than ever in my life. She will have to learn the same. It's a tall order when she is starting a company. That might be on hold for a while, or she may be able to creatively think of a new solution that doesn't involve her working a lot.

Browse the posts; you will learn a lot and be able to help her a lot. I have also found that concussions - or PCS - has shed light on my life, just like it has allowed you to see your tremendous love for your girlfriend. That is a blessing so hold it and appreciate it while you go through this with her.

Hello,
I'm so very sorry to hear about your girlfriend. There are quite a few people on here who will be able to give you some really good advice.

I suffered a severe concussion in late March, a whole bunch of symptoms, terrible disorientation, slowed thinking, words not coming out correctly, depression, massive headaches, I'd be sitting in a chair and just "pass out" then wake up 15 mins later...on and on, it is very scary. I felt as though I was severely brain damaged, totally different. Every day I felt as though I was getting worse.

Read all you can on this forum, it will help you a lot.

I was an avid hiker and after the concussion couldn't even go for a walk, the brain has to heal, I paid dearly by trying to go for a small hike, set me back for days.

Other more experienced folks will answer your sleeping question, I was told to rest (I had physical injuries so in the end had to rest) but not to sleep all day.

I was in PT and Vestibular therapy which helped. I know various places have a sliding scale for fees.

My headaches were torture for days at a time, I can say they have improved, quite often I had to lie down in a dark room, just had to.

Your girlfriend must not try to do a lot right now, so hard I know but it has to be done.

You are definitely in the right place, it has really helped me, thank God your girlfriend has you, and I know this is very, very difficult for you too.

Please let us know how your girlfriend is doing? Take good care of yourself, my husband was/is going through so much with all this too. :grouphug:

@Vanilla Bean - Thank you for you reply. Luckily my girlfriend does not drink and is not a fan of anything caffeinated. Reading through the sticky things was very helpful. Its funny how things that once annoyed me are the things that I miss the most. Like she used to smack my hand when ever I start my annoying habit of biting my nail.

@Dagma1 - How long ago was your injury and how long did it take you to recover? Mainly to not be so disoriented and start being able to normal conversations?


A little update

Day 5-Headache (woke up with an 8/10, but some benadryl, reglan, ice, and food helped and throughout the day she remained at a 2-3/10). Around noon time she has normal conversations with me with a normal tone of voice. She gets tired afterwards and then goes into the same state of mind. She needs to be reminded to use the washroom and I have to ask her if she has pain. There was one instance in which her pain was at a 10/10. Basically the buzzer of the dryer went off. I stepped out for a moment at this time to run errands, while my friend stayed. When I came back she was calling my name and started speaking to me in korean and was describing the sound the dryer made. I was confused, by this and later found out it was the dryer. Day 5 seems like a setback when compared to day 4, but I am learning from here that its to be expected. She still has hot/cold flashes, but seems to be less frequently. Numbness/tingling in hands and feet still exist. She has brief moments in which she has no headaches. I am slowly weaning her off medicine and using the icepack more often which really seems to help.


Well today is day number 6 and I found her with a bad headache around 8am. She needed the reglan and benadryl combo, along with ice. It helped and she is back to sleep.

Brain rest
 

Hi there

So sorry to hear about your gf and her concussion. It's very scary and you are so kind to help her and care for her.

Brain rest can be so boring, but if she sleeps, let her sleep.

Avoid screens, TV, driving in the car, (she shouldn't drive or be in a car) texting, movies,

What can you do for brain rest?

Audio books if she can follow the story or it's soothing.

Gentle music if it soothes her.

Petting a dog or a cat if you have one.

Doing something with the hands that doesn't strain the mind. Putting yarn in to a ball...

Warm bath or shower

Maybe look at pictures in a magazine, but no heavy reading

Use Advil or the active ingrediant instead of acetominaphin (can't spell it)

HOpefully the concussion will heal up and you won't need us for the PCS help. My prayers are with you.



poetrymom

Hello poetrymom, thank you first of all for your prayers. Also thank you for all the tips. I think I will definitely use the audio books idea if she can tolerate it. She does complain of being bored often now.

About the use of Advil, I thought we are to avoid using it due to the risk of bleeding. Please explain why you are stating to use it over acetaminophen.

Acetaminophen has greater negative impact on the brain. It is also rough on the liver.

Hi,

My concussion was in late March, the headaches were disabling, had to lie down in the dark, light, voices, actually any kind of noise sent me insane. I totally understand how your gf felt when the dryer made that noise, that darn buzzer can be torture. I was also exhausted from just a small conversation.

I have actually come a long way with mixing up words etc, still do it and my husband says I don't finish sentences sometimes but it is better. I will search and search for the right word and there's just nothing in my brain, it all takes time.

The disorientation is a lot better, I was in vestibular therapy which I know helped, probably got better a lot after about 5 months but I could feel improvement along the way.

You are such a wonderful person and I know this is so stressful for you, my husband said I was a completely different person, as you know your gf's brain is injured, I was told everything is misfiring and it takes time to heal.

I fought all this in the beginning but paid dearly so your gf must not do too much even if she feels she can, take it very slowly. I know when I did too much that terrible headache would be back for days.

You are both in my thoughts, please let us know how your gf is doing and take care. :grouphug:

Hello again,

Just read over my post and typical of what I do is write "probably got better a lot after ..." I always read over my replies several times before actually posting it and don't notice the grammar mistakes at the time :)

dagma1 thank you so much for your insight into PCS.

I have a few questions today that I am not finding anywhere.

1) How long did you guys wait before getting vestibular therapy?

2) Did people say your speech is really slow even a week after the concussion?

3) Did anyone have difficult reading a digital clock? (for example if the time is 8:40am, my gf can make out the 8, but not the 4 and 0). If so did it get better?

4) She does not have insurance, so which specialties really helped and should be seen?

5) Did you guys find it possible to return to some form of employment after a few months?


Little update
I don't notice any declines since my last update on day 5. In terms of progress, I think her headaches are not as strong and everything is stable at where they are at. I have switched her over to Advil since yesterday.Right now for pain its just Advil 200mg during the day, but will be alternating with Acetaminophen 650mg if she gets a strong headache and too early for more Advil. At night have been doing a benadryl 25mg with an Advil 200mg. We also have been doing an icepack while administering medicine each time.

Think her concentration is better, but still have trouble understanding situations, tired, still have memory loss, sensitive to light and sound, heightened taste and smell, difficulty finding words.


One negative for the coming week is that she has two large orders that the customer already paid for, so that is often on her mind. I will be doing as much as I can to help her and limit the time she spends on it. After those two orders are shipped out, she will definitely be taking some time off from the business.

Thanks for the response Mark! From the start I made sure her daily acetaminophen intake was less than 1000mg a day (the new standard is 3000mg maximum daily), so we are safe there. I decided to primarily use Advil per the advice on this thread and save the acetaminophen when out of options.

Hi,

Very pleased to hear your gf's headache's are not as strong but be careful, they can be deceiving and right when you think they're gone they're back, not saying they will but again take everything slowly.

My Dr. started my vestibular therapy about 2 months after the concussion, I also had a neck and shoulder injury though so wasn't moving a lot but when I started walking around more I would sway and fall to the side.

Yes, speech was slow a week after my accident, the wrong words would come and I'd forget what things were called, I remember asking my husband for an apple but couldn't think of the word apple, just stared and stared at it but my mind was blank.

I'd also read a digital clock wrong! exactly how your gf is seeing it, If it was 9:30 I'd say it was 8 or 9. It did get better, again it takes time, sometimes I still make a mistake and say it's 7o'clock when my husband says it's 9, then I'll look again and see he's right, very strange.

For me there was no way I could go back to work after a few months, too disorientated, foggy, not thinking straight etc the computer/reading made the headaches worse too.

At one point, early on in therapy, I felt worse, my OT said that's typical, you'll feel worse to begin with then start feeling better.

It's hard to say what therapy your gf needs, everyone is different, best to see a Dr for an evaluation, are you managing to see a family Dr so someone can follow your gf ??

I know this is frustrating, we just want to jump up and be "normal" again, I don't know if you've read the sticky on vitamins, it all helps, eat good food, rest, ( I know if I get over tired a bunch of symptoms come back) reading posts on here helps, just to know you are not alone.

Hang in there, :grouphug:

dagma1, thanks again for the response. She learned the hard way yesterday to not overdo it. She spend about 20 minutes on the computer against my advice. About an hour later she nearly fainted with a headache of 10/10. Luckily it went down within 30 minutes to a 2 with medication, ice pack and some relaxation. It migh've been a necessary warning we had today.

You stated your speech was slow after a week, so how long did it take to return to normal?

I am going to try to get her a primary care physician, but the problem of not having insurance is turning into a challenging hurdle.

Agent,

As much as others can suggest doctors and self-directed treatment, it is futile to try to compare symptoms, recovery, and any other issues. There is a saying, "When you have seen one head injury, you have seen ONE head injury." No two are the same. You appear to be very detail oriented. That is fine to a point. It can become excessive and hamper recovery by putting too much focus on minute to minute symptoms.

I believe a concussion should be analyzed with a week or more as a minimum time interval. Other than the need to deal with head aches as they manifest, all other symptoms will likely have an ebb and flow over many days if not weeks. Recovery is a slow process and requires lots of patience.

Even though dagma1 had similar symptoms, don't expect to find much more in similarities.

btw, The 3000 mgs of acetaminophen is a standard to protect the liver. It does not work as a dosage limit to protect the brain. Acetaminophen has some neuro-toxic characteristics.

My best to you both.

Agent007tj,

Get your girlfriend some crayons and coloring pages. I'm 35 years old and back in 2011 I did a lot of coloring just for something to do (couldn't watch tv, read, etc. or even follow the story while listening to an audio book). Coloring is no stress for the brain, but it will take her mind off her injury and will help her to "kill" time.

Hope that will help.

Marina

@ Mark, Thanks for the advice. I am an ICU RN, so it does make me detail oriented. I am not constantly assessing my gf to exhaustion or anything, but I try to observe her. Its been a rough 11 days for her and I, and I am only trying to understand PCS. Books and articles only tell you so much, but the experiences of others who suffer PCS is more valuable for me these day. I must admit PCS is very new to me. I myself had 3 concussions, but luckily have not had to face any severe PCS. I am mainly on this site to see other peoples experiences with PCS and their recovery. I am completely aware my gf likely won't follow the same path, but I still like to remain hopeful for a quick recovery.

@Marina, Thanks for the advice. She is a creative person, so naturally she was drawing and coloring a few days ago.

As an ICU RN, You are predisposed and trained to look for and track every change. This is counter to brain injuries. Brain injuries, even mTBI's usually result in a roller coaster ride as symptoms come and go. There will be trends developing over time (weeks or more)

11 days is just getting started with mTBI. Symptoms can get worse for up to 6 weeks or more as the brain tries to sort out the permanently damaged areas and those areas that will heal. Minimizing stress and further injury while supporting the brain as it tries to purge the toxins that result from the injury is often all that can be done.

Coma is the brain doing this. It limits functions so that the brain can rest as it slowly gathers the best functioning parts and brings them into use. Drug induced comas are forcing the brain to rest so it has time to re-establish proper fluid regulation.

She needs a simpler form. Simple manual tasks to keep her occupied so her brain gets decent perfusion without cognitive strain are best. Concussions are managed, not treated, in most cases.

Do your best to not let her see your concern or frustration with her recovery/condition. A comment of "You look much better than last week" is the limit. Better yet, You look like you are slowly improving. I am told to expect improvements to be slow. No 'You look good today' because when you do not say it tomorrow, she will want to know why.

Read the TBI Survival guide at www.tbiguide.com

Praying for a speedy recovery for your gf! As the wife of a TBI hubby, I thought I'd chime in . . .

Mark is right - you do sound very, very detail oriented. I'd like to say that CAN work in your gf's favor. My husband is almost 3 years into this journey and we have tried many different medicines to increase his quality of life. My primary role has been to take VERY careful, detailed notes regarding his response to new medicines and dosages. Thru my observations and arguing with doctors when need be, we are finally at a combination of meds that has allowed him to regain some quality of life back.

So, my advice? Don't drive her or yourself crazy with details! Bite your tongue if you find yourself asking 20 times a day "how are you" (been there, done that). But do pay special attention to her reactions to the meds she is given. As I'm sure you have gathered -- everyone with TBI takes a wide variety of meds to manage their symptoms. If her condition persist, continue to do research (& take notes while doing so) and record different meds and dosages, etc. It was very, very helpful to us and trust it will be for you too.

Agent007...
 

Hi Agent007...How is she doing? How are YOU doing? What is the status? I would be careful with the audio books - especially if they are at an adult level. The speed may be too fast, and the information may be too much for her to process. Start simple with child books, something by disney. Being bored was one of my biggest complaints. I am now just about two years post injury. If you want to talk/need advice -
please feel free to email me.-- ************ --
I have done vast amounts of research on TBI's and PCS since my injury, and continue to do so. I am involved in support groups and give speeches to local schools about it. I understand that she is your main concern, however, it is important that you are okay throughout all of this as well. Although she suffered the injury, you also are a victim to the injury. I know this probably seems strange to hear/hard to grasp, but the family/friends/significant other's are directly impacted as well.

Best,
Meaghan

Meaghan thanks for asking. Her headaches are still painful, but not as bad as they were. She still has memory loss, less sensitive to light, and she still speak slowly and quietly. She has trouble thinking thing some things through. She just recently started an online business and had an order from a customer that was placed 2 months in advance for a wedding, so she spend almost 15 hours being up one day to finish the order with about 30 minute breaks in between every few hours. She also spend about 4 to 5 hours on two other days also finishing up orders. So there was a definite setback from this. She did not want to stress out the person getting married, by cancelling the orders.

I am doing better than the first week. I rarely show emotion, but I think I cried every single day in the beginning. Her personality is still the same, but her thought process is delayed and she is always tired. Its also sad to see her unable to remember things. She used to be the one with the better memory in the relationship.

I am taking Mark's advice and just taking it a week at a time.