If you injure your knee, it’s super important to quickly start rehabilitating it through physical exercise. You don’t stay in bed in a dark room and wait and hope for it to improve on its own. The same thing applies to the brain!
My name is Casper Renman and I live in Stockholm, Sweden. I fainted and hit my head in April of 2018. This lead to a concussion and 4 years of Post Concussion Syndrome (PCS). It’s been a long journey and I’ve struggled a lot, but today (April 2022) I feel better than ever and would say that I’m about 85% recovered! The purpose of this website is for me to share my experience and knowledge to help others in similar situations.
I would like to give a huge shoutout and thanks to my company and leadership at Fast Travel Games who have been so supportive and helpful!
In short, what has helped me is:
- Gradual physical exercise.
- Gradual and super careful increase in cognitive tasks/work.
- The PCS clinic Cognitive FX in Utah, USA.
Cognitive FX has my highest recommendation. If you have PCS, take their free consultation and speak to them! Tell them Casper from Sweden sent you đ I was apparently the first native Swede to undergo their treatment!
If youâre in Sweden close to Stockholm I recommend Neurocampus. Theyâre on the right track, but theyâre doing perhaps 1/20 of what you do at Cognitive FX.
My Symptoms
My symptoms come from having conversations, looking/playing/scrolling at screens, too much mental and/or physical activity, bright lights or loud noise. The symptoms are:
- Nausea
- Lightheadedness
- Sensitivity to light
- Sensitivity to sound
- Fatigue
- Brain fog
- Feeling like my head is “stuffed” or “full” which increasingly makes me lose touch/connection to myself and the world.
Short summary of my life the past few years
- Fainted and hit my head in April 2018.
- Spent two years on sick leave, ranging from being off 100% to being off 25%. A long exhausting battle with doctors and the Swedish Social Insurance Agency to convince them I couldn’t work.
- Struggled mentally with the slow progress and guilt of being away from work. Saw a therapist to deal with this. I highly recommend doing so!
- Tried to find expertise to help me but was unsuccessful. Turns out there is little to no help to get for a mild traumatic brain injury in Sweden according to my experience. The system is generally very confused when it comes to PCS, since a normal MRI doesn’t show anything and my body doesn’t look injured.
- After 9 months of staying at home on sick leave, started working 2 hour days. Felt so happy to be back and thought everything would just resolve itself from there on. I overworked myself by not resting enough and crashed all the way back to square 1, or square 0 even. I felt worse than ever.
- Was once again off work for another couple of months, feeling depressed over how I still wasn’t better and I saw no hope for improvement.
- Started getting scared of the world and the idea of work, so pushed myself to try to introduce work in my life again. This time I was careful and started working slowly and carefully, 1 hour days. This is the correct strategy. The following two years I slowly ramped up the time I could work all the way to 100% or 8 hour days.
- The challenge is to not constantly use up the excess energy as you start feeling better. Try to stay at 6-7/10. I failed at this miserably of course, but that is probably the smartest thing to do.
- Physical exercise has been my key to being able to do life. Working out has the effect of cleaning out the gunk that adds up in my head throughout a day, making it feel clearer. The day after exercise I would also feel clearer in the head than if not exercising the day before.
- I could work 100%, but after a work day there was no gas left in the tank. The daily routine was to eat, sleep and workout after a work day to be able to cook dinner and live life the remaining hours of the day.
- 3.5 years in, me and my fiancée got pregnant with our first child and we felt more seriously that the situation needed to improve, considering how my freedom to workout and rest would surely decrease.
- My fiancĂ©e googled “Post concussion syndrome treatment” and found Cognitive FX (www.cognitivefxusa.com). Reviews seemed too good to be true, and as a Swede, I am naturally skeptical towards an American website with reviews saying “it’s a miracle” (Swedes think of Americans as good sales people with big words).
- In September 2021, because no measurable improvement had happened in the past year, my doctor declared my condition to be a medical disability. She said “sorry, there is nothing else to be done for you”.
- As there were no other options left for me in Sweden, we decided to go to Cognitive FX. The worst thing that could happen is that there would be no improvement. We went there in October 2021.
- Cognitive FX was everything I could have dreamed of. Currently still doing my homework from them and feeling the best I’ve felt in 4 years!
Cognitive FX
Important: If I would have gone to CFX after my big overdid-it-and-went-back-to-0-crash I don’t think I would’ve been able to do and benefit as much from the CFX week. To fully benefit, I would say you need to be able to hold a 1-2 hour conversation without getting completely overstimulated.
I will now in complete non-scientific layman terms explain how I have understood what it is that happens to a PCS brain and what needs to be done to fix it. I want to make it very clear that this is only how I’ve come to understand it from the conversations I had at Cognitive FX. I don’t claim it to be scientifically accurate. However, I think this way of visually thinking about it makes a lot of sense and is how I’ve come to explain it to people. I’m fairly confident that it resembles the truth at least figuratively.
The brain consists of, among other things, cells known as neurons. Neurons are information messengers. They use electrical impulses and chemical signals to transmit information between different areas of the brain, and between the brain and the rest of the nervous system [1].
In the figures below, I use speech, balance and vision as examples to explain a concept. There are of course many other areas and functions of the brain.
Let’s say these blue circles are neurons that communicate with each other to get things done. Communication flows in the direction of the arrows. The top left one deals with speech, the middle one with balance and the bottom one with vision.
The concussion happens and some connections become blocked or congested. Since the brain is elastic and smart, it finds ways for the signals to reach their destinations anyway, by taking different paths. This leads to some neurons being forced to work way harder. In the image, the areas of the brain that deal with vision now also have to deal with balance. This is one of the reasons why we get so tired. For most people, this congestion resolves itself within a few weeks. For people with PCS, this hasn’t happened, and the brain is stuck and happy with doing things this way.
By fully activating the vision, the balance finds the pathway through the balance neuron to already be busy, so it might try to use the speech path instead. But by also activating the speech neuron, the speech pathway also becomes busy. The balance has no other choice but to try to push through the original blocked/congested path. This way, the brain is forced to rediscover the correct way of doing things. What this shows is that the name of the game is active MULTITASKING.
Again, speech, balance and vision are only examples. Other examples would be things like processing speed, working memory and long term memory retrieval.
Here are some examples of actual exercises I did at Cognitive FX:
- Standing on a balance board, I got two tennis balls thrown to me one at a time. The balls were thrown to me in a way so that I would never know which ball would end up in which hand. While balancing and catching and throwing balls, I had to go through the alphabet, naming a country beginning with each letter.
This worked my balance, my brain/body by catching the balls, my vision by tracking the balls, my working memory by remembering which letter I was at, my long term memory by retrieving a country starting with a letter and my speech by having to say the countries out loud.
- Sitting at a desk with a deck of cards, I had to sort them into piles. I first placed each ace face down and had to remember which ace was where. Then while sorting the rest of the cards onto the correct pile, words were read to me which I had to say the opposite of, while also having quite loud disturbing music or noise on in the background.
This worked my working memory by remembering which pile to place a card in, my processing speed by understanding what card I was looking at and figuring out the opposite of a word, my word retrieval from long term memory by finding the opposite word, my body/hand coordination by having to pick and place cards and pushing my brain to learn to ignore or block out the sound in favor of the other things I was doing. This is something the PCS brain is bad at – knowing what information/stimulus to pay attention to and let in and what to shut out and ignore. This is another reason why we get so tired.
The Cognitive FX week
Read about the treatment here!
The week starts with a specialized fMRI brain scan called an fNCI. In the scan you get to do a set of brain challenges while they measure the blood flow in your brain. This lets them see where the blood flows when your brain performs certain activities. These results can then be compared to what the blood flow should look like. From this you get an overall score of how “bad” your brain is doing and also more detailed graphs and tables of exactly what it is that isn’t working. The results show some areas of the brain getting too much blood during certain activities, meaning those areas are overstimulated and should ideally work less hard, and it shows areas of the brain which are getting too little blood, meaning they are under stimulated and should be working harder and doing their part. These results are completely individual and are different for each person.
My results
Personally, getting undeniable proof on paper that my brain in fact was not working the way it should was such a relief. For so long I had had to try to convince people that this was the case without being able to truly prove it. Just getting that result alone almost made the trip to the US worth it.
CFX week details
What follows is a 4-5 day week of 8 am to 5 pm days full of activity, rest and recovery, with 1 hour sessions back to back each day. Every session is different and with a different person with a specialized expertise in that area. The schedule is the same for everyone more or less, but what you focus on in each session is adapted to you and what your brain needs to work on.
Each day starts with a physical interval session, in which you try to get your heart rate up for about 30 seconds to reach about 80% of your max. Then you sit down and use special breathing techniques to try to bring the heart rate back down. This helps show the body how to get out of a fight or flight mode, which PCS peoples’ brains usually spend too much time in, drawing more energy than necessary.
The rest of the days are filled with various multitasking sessions but broken up by sessions of rest and massage. The first few days I was completely exhausted afterwards, but in a sort of nice way. On the last day you do the brain scan again to see how your brain has improved. I was very happy with my results! The craziest thing is, the changes you see on that paper are permanent improvements to the brain meaning you are finally in the clear of having a relapse back to where you started.
Today I feel the best I’ve felt in the 4 years since it happened. We had our son two months ago and I’ve been able to deal with everything that having a child entails in a way I never would have been able to pre-Cognitive FX. I’m so happy to have so much of my life back, and I hope you will have that too!
Please feel free to leave comments on this page or email me if you have any questions at [email protected].
Carol
Yay! Congratulations! To both being a dad and retrieving your brain function – and life!
I did not see any mention of the cost involved? Feels like it might be out of reach.
Your symptoms are much the same as mine although my issues are as a result of a brain tumour – do you think this treatment could help others than those with post concussion issues?
Casper
Hi, and thank you!
The treatment is $9900, which I at first felt was too expensive. But with help from family I managed to go. Now afterwards I would say it was 100% worth it and I would absolutely pay and do it again! Worst case Iâm thinking itâs something to save up to long term, since the PCS will stay with you most likely forever until properly âtreatedâ.
My mother has and has had similar symptoms but from overworking/burnout. I asked CFX about this and they said the treatment should work for that too! So the way Iâm hearing it, symptoms are symptoms and the brain is the brain – it doesnât matter as much how you got them đ
Janke Nobel
Hej!
SÄ kul att lÀsa att du Àven har varit i Utah!
Min EPICweek var redan aug 2019 och sedan dess har jag försökt att vara ett slags ambassadör hÀr i Sverige.
Jag var den första svenskare som besökte kliniken. MÄste sÀga: din berÀttelse Àr nÀstan 100% min story.
GĂ€rna skulle jag komma i kontakt med dig: just nu samarbetar jag tajt med kliniken för att “sprida budskapet” Ă€ven hĂ€r i Sverige/Norden…
Kanske kan du hjÀlpa mig?
Jag Àr ursprungligen frÄn NederlÀnderna (mÄnga hollÀndare har besökt kliniken).
Hör gÀrna av dig.
// Janke Nobel
[email protected]
0705585071
Casper
Kul! Absolut, vi hörs!
Hans Dyrvold
Bor du i Sverige?
Finns behandlingen i Sverige?
Kan man bli uppringd och tala med dig eller sjÀlv ringa upp?
Har lĂ€st âThe gost in my Brainâ och förstĂ„tt att det finns vĂ€gar ut ur mörkret.
Ps. 2018 i Juni fick jag min skada och har precis fallit tillbaka frÄn att testa 50% till 0%
Casper
Hej! Jag bor i Sverige. Behandlingen finns inte i Sverige tyvĂ€rr. Allt jag önskar Ă€r att det hade funnits hĂ€r. Min lĂ€kare bedömde mig som medicinskt invalid i Sverige samma mĂ„nad som jag Ă„kte till USA och blev bĂ€ttre pĂ„ 1 veckaâŠ
Vi kan höras om du vill. Skicka ett mail till [email protected]!
Lydia
Wow! Fantastic to read. Iâm struggling with burnout and I can relate to basically all symptoms. Wish you luck!
Casper
Great to hear! The best of luck to you and your recovery!
Hugo LF
Close friend of Casper here! Really nice of you to share your story here and I think, and our circle of old friends who have been through Caspers abysmal years are so happy that he’s feeling better again. I hope you all the best and hope for you to reach 100% as soon as possible đ
Casper
â€ïž!
Agneta Ellert
Hej! Det Ă€r fantastiskt att lĂ€sa din berĂ€ttelse! Du beskriver och förklarar sĂ„ bra, och din rehabilitering framstĂ„r som sĂ„ logisk med tanke pĂ„ hur hjĂ€rnan fungerar (det lilla jag vet om det…:) Jag nĂ€stan trillar av stolen av “kortslutning” och utmattning i hjĂ€rnan bara jag lĂ€ser om de övningar du gjorde!
Ă terigen, sĂ„ bra beskrivet av dig! Jag Ă€r ocksĂ„ vĂ€ldigt tacksam för att du berĂ€ttar om din första “krasch ” nĂ€r du körde pĂ„ i början. (jag vet precis hur det Ă€r…) och att du Ă€r noga med att berĂ€tta att det krĂ€vdes en viss nivĂ„ av ork för att du skulle kunna tillgodogöra dig rehabiliteringen.
Jag kommer att lÀsa din berÀttelse fler gÄnger och Äterkomma till den lite lÀngre fram. Den inger stort hopp för mig!
Ăr det ok för dig att jag delar din berĂ€ttelse med mitt rehabteam?
Jag Àr sÄ glad för din skull att du hittat en vÀg framÄt och mÄr sÄ mycket bÀttre!! Och största varmaste Grattis till att du blivit förÀlder, vilken lycka!
Jag hoppas vi hörs vidare!
BÀsta hÀlsningar
Agneta Ellert
Casper
Hej och tack! Och tack för att du tagit dig tid att lĂ€sa! Du fĂ„r jĂ€ttegĂ€rna dela den med vem du vill. Jag Ă€r superintresserad vad ditt rehabteam har att sĂ€ga om den, och om de hört talas om behandlingen jag fick i USA đ
Lina Grimhammar
Hej! Vilken resa du har gjort! Vet du om behandlingen funkar efter en stroke ocksĂ„? DĂ„ Ă€r ju nervbanorna döda pĂ„ ett annat sĂ€tt…
[email protected]
Hej! Jag kan inte svara sÀkert, men jag kan tÀnka mig det. Neurocampus som jag fick hjÀlp hos i Stockholm behandlar Àven/frÀmst stroke-patienter, sÄ det finns nog en hel del överlapp dÀr
Charlotte nörklit
SĂ„ bra att du delar dina historia och underbart att du fick rĂ€tt hjĂ€lp! đđŒ HĂ„ller helt med om att det inte stort sett inte finns nĂ„gon vĂ„rd alls i Sverige för TBI och mĂ„nga fĂ„r aldrig ens veta att man kan bli bĂ€ttre. TvĂ€rtom Ă€r det fortfarande uppfattningen bland flera lĂ€kare att detta Ă€r nĂ„got man fĂ„r lĂ€ra sig leva med. Jag har ocksĂ„ varit i USA och fĂ„tt ovĂ€rderlig hjĂ€lp pĂ„ alla sĂ€tt pĂ„ flera olika kliniker. De Ă€r verkligen i framkant och det Ă€r den forskningen man borde följa hĂ€r men rehabiliteringsvĂ„rd Ă€r inte direkt prioriterat tyvĂ€rr.
[email protected]
Exakt, det Àr synd att det Àr som det Àr⊠Var fick du hjÀlp?