Hello everyone. My name is Oliver. First, I ‘am trying to do my very best in English because I’ am from Germany. So sorry if I produce some faults.

Our daughter (24yr) had been diagnosed with post concussion syndrome, about seven month ago. She had an accident. She have been fallen on the backside of her head. The doctor recommended to stay in bed for two weeks, but it didn't get better. Then she was about six weeks in bed and it got slowly better. Then she hit her head a little bit by getting in her car and her state became as it was at the beginning. Then after several weeks it was getting again a little better. Two months ago it was almost gone, but suddenly it became worse again. We’ve been to all kind of doctors and all had different recommendations. Some said absolutely silence, others said get up and walk around. Our daughter broke up now her study, close to becoming a Master. She is close to a mental breakdown and we are quiet desperate. Let me tell you about her symptoms: She cannot watch TV. That makes her very dizzy and she gets headache. Same with the computer. She always have the feeling to be in a boat that moves. Her own movements appear to her time lag. She cannot focus longer than a few minutes on something. As a result of all these things and circumstances she is losing weight too. We are total helpless. Can anybody help us with suggestions or recommendations?

A post concussion syndrome in Germany becomes a treatment like a cold in November. That’s my opinion. So if you have any ideas, please let us know. Thank you!
With kind regards.
Oliver

Oliver,

Welcome to NeuroTalk. I'm sorry to hear about your daughter's struggles. Her experience is not uncommon.

There are a few specialties that may be able to help her. It sounds like she may be struggling with a visual convergence insufficiency. A behavioral optometrist may be able to help her with prism glasses and other treatments. When she tries to use a computer or watch TV, she could try it with one eye closed. If that helps, it would suggest convergence is a problem.

She also may benefit from a thorough vestibular assessment. A vestibular therapist would do this. Some may need a referral from an Ear Nose and Throat doctor. A hearing and balance clinic may be able to help.

Many suffer a subtle upper neck injury and benefit from gentle therapy (physical, physio or gentle chiropractic ) to help the cervical vertebra stay in proper alignment. She should be discipline to sleep and rest with good straight head and neck posture. Bed rest can make this difficult as one tosses and turns.

Bed rest is not helpful at this point. A low stress environment is important. She needs to have enough low stress activity to support good blood flow in her brain. She needs to maintain a normal sleep schedule so she sleeps well. Napping or bed rest during the day makes it hard to get the proper sleep she needs at night.

Many of us benefit from good brain nutrition. We have a vitamins and supplements regimen posted in the stickies at the top labeled, Vitamins. Read the whole first post and the updated post linked. The B-12, D-3, fish oil are the most important.

Gentle walks are good. If there is a manual activity she can do such as art, knitting, crocheting, etc. That will be good. The hands cannot work faster than a struggling brain can handle. But, she needs to keep her brain active with some kind of low stress activities. Mental activities should be minimized or done in short sessions with frequent breaks.

This is a hard time. We understand. In time, she will improve like she did in the past.

It may help to keep a journal of daily activities and symptoms so she can learn what her triggers and activity limitations are. Activities on a Thursday can cause a delayed onset of symptoms on Friday. This is common.

Please feel free to ask us or tell us anything. We have heard it all.

My best to you and your family.

Oliver,
I struggled with terrible dizziness as you mentioned. But not really room spinning. Condition improved but still have symptoms. Some days ok and some days bad. I just go with it. There are somethings which helps me to manage.

Are you on any medications? Any therapies? What kind of tests been done?
Any MRIs or CT scans?

Hello Mark,

many thanks to you quick response. I told my daughter that this kind of illness is common and she was very relieved, because she thought she is the only one. People and even doctors dont know much about it.I just got back talking to her and your words made her feel better.She tried to watch with one eye, but it didn't worked. She also said that when she is up longer (2 Hours) then she got the feeling to get draged to the left side. When she get touched she feels the contact not immediately rather milliseconds later. OK, she wants to know if you can assess if it's gonna take again 5 Months to get better, like it was in February? By the way Mark, how you get all this knowledge about these things? Ok, I' am very grateful for the sympathy and the recommendations you given us. How is the treatment in the U.S. with that kind of disorders? I got a sister, living in Houston.

Our best regards and god bless you.

hawaii13,

Nobody can predict a timeline for recovery. She may improve in one symptom but take longer with another symptom. There is no single treatment.

Once she start to understand her triggers, she can slowly learn to reduce them and healing will move forward. But, it she keeps triggering symptoms, her recovery will be longer.

It is important that she find a way to get quality sleep at normal times with good head and neck posture. I did best in a reclining chair until I learned how to manage good sleep in bed. Some do well with an adjustable (hospital style) bed so they get comfortable and do not toss and turn. The best healing happens during REM (Rapid Eye Movement) and slow wave stages of sleep. This quality sleep is not often achieved during the day while taking a nap.

Too much pillow can reduce blood flow to the brain from the neck so a straight position is best.

I have gained my knowledge over decades of dealing with my own injury that happened in 1965. Lots of reading since 2000 when I suffered my last concussion. I've had a total of about 14 concussions, most were very mild. One was severe and three were moderate.

Oliver,

Sorry to hear of your daughters struggles with PCS.

Please tell her for me that she is not making things up, PCS symptoms can be a real roller coaster ride. No doctors informed me of what I was in for after my accident and as things got worse I thought I was going nuts. This site was a real life saver for me as I found out from others experiences I was hurt, not crazy.

Patience and calm are what she will need to master while she heals.

Anja on this site is in Germany.

Best wishes,

Bud

Hallo Oliver,

schreib mir doch bitte eine private Nachricht. Ich lebe jetzt seit zwei Jahren mit PCS und es ist nicht leicht in Deutschland überhaupt einen Arzt zu finden, der einen ernst nimmt und sich damit auskennt.
Lg
Anja

Glad to see Anja found this thread to offer support. I was hoping she would. That's Greek.... err, German to me. Google translate works to understand.

My best to you both.

Please translate before posting, so posts are in English for all readers..
Googles translate link - https://translate.google.com/?hl=en&tab=wT
Most of our readers are English speaking/reading, PMs can be in your native language.
Thank you
translation below -
[write me please a private message. I live for two years now with PCS and it is not easy at all to find in Germany a doctor who takes seriously and is familiar with it one.]

*New members do not have the PM option for a short time*

Hello! (gluten tag!)

How are you this Sunday? (Wie gehts dis Sontag?)

I speak very little German and understand even less. ( Ich spreche sehr wenig deutsch. und zu verstehen, noch weniger).

I hope you can make the Google translate for you. ( ich hoffe, dass Sie die Übersetzungsarbeit zu machen.). If not, and if she is feeling alone, she can message me and I can try to translate back and forth. (Sie kann mich in der deutschen E-Mail und ich kann versuchen zu übersetzen.) this condition can make you feel lonely, because it is very difficult to explain. (Dieser Zustand kann sehr einsam sein, weil es schwierig ist, anderen zu erklären.)

I have had post concussion syndrome or minor traumatic brain injury for almost 1 year now. I am from Canada. The doctors in Canada are varied in their knowledge. There are a few that really know what is going on and what the most updated and correct treatments are.

What I've learned from this so far from the professionals that seem to be able to help me is the following:
Do not push through a headache. (Nicht durch Kopfschmerzen drücken.)
Rest the mind with meditation, relaxation, etc. (Ruhe den Geist)
Once the symptoms reduce or disappear, only Then can you start to gradually add activities or computer work back into your life. As an example, it you can work on the computer for 10 minutes without getting dizzy or a headache, then reduce that to 5 minutes. Continue to do this for only 5 minutes at a time so that no symptoms appear. If she can do this many days in a row, then she could try increasing the time on the computer by a few minutes, and then remaining at that time period. What is important ( my neuropsychologist tells me) is that we consistently stay Below the time, and that will allow the gradual increase. The symptom Reduction phase comes First though, before she can add things back.
For me, stress or becoming sad to the point of tears, is very bad, and makes all of my symptoms come up very strong.
This next one I have not seen anyone else write, so not sure of it's accuracy, but I am told not to do any kind of exercise or activity that puts my head below my heart, as too much blood flowing to the head at one time is not good.

Sometimes certain things in life have to be put on hold. In order for her to recover, it is important that she understand that. Only until she can become well enough that she has learned to reduce her symptoms. Fight through symptoms to get things done is the wrong thing to do, and can make us worse for days at a time.

I speak from experience, in that I returned to wok too early and only lasted one and a half months before having a complete relapse.

Please tell her I wish her a fast recovery and that I am always here if she needs to email or message me. (Bitte sagen Sie ihr, dass ich ihr eine schnelle Genesung wünschen und sie können mich jederzeit durch private Nachricht oder E-Mail erreichen.)

Danke! And take care!


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