A Dream Recovery with Melanie Wienhoven
Show Notes:
On today’s episode, we are visited by Melanie Wienhoven, a fully-recovered post concussion patient. She is here to share her story of how six years of research and therapy led to a full recovery, and how she has dedicated her career to showing others that they can too. Tune in to hear the story of how she was initially injured and misdiagnosed, and why she believed her doctors even though she was flabbergasted by what they had to say. Finding behavioral rehab was a pivotal moment in her journey, and she shares how, along with how she discovered that it was not rest she needed, but training, tailored to her injury. You’ll also hear how she came to start her business, LifeYana, what the name means, and what the course she teaches entails. We hope you join us today!
Key Points From This Episode:
• Melanie tells us about the cycling accident that caused her concussion.
• The feelings and sensations that accompanied the injury including a high pitched sound, loss of vision, a metallic taste in her mouth, and a piercing sensation in her skull.
• How the metallic taste in her mouth has occurred again since the injury.
• What happened after the injury and some of the long term effects she experienced.
• The neurological tests and CT scans that came back saying that nothing was wrong.
• Why she believed this diagnosis even though she was flabbergasted by it.
• What it was like to try behavioral rehab on her company doctor’s recommendation.
• Why she chose to avoid all kinds of stimuli on her brain and the impact this had.
• How she compares the experience of being concussed with having a fever as a child.
• How she discovered that it was not rest that she needed but training tailored to her injury.
• Why it was important that she changed her mindset in order to heal her body.
• Career challenges she faced: managing her own expectations and feelings.
• The message of hope she wants to share with all her followers.
• How LifeYana was started and what the name represents: “you are not alone”.
• What the course that she offers through LifeYana includes: brain training and how to tailor it to your injury, schedules, choosing intervals, mindset and belief work, and more.
Connect with Melanie:
Website: Life Yana
Follow Melanie on Instagram
Follow Post Concussion Inc on Social Media to stay up to date on the podcast
Transcript - Click to Read
[INTRODUCTION]
[0:00:05.3] BP: Hi, I’m your host Bella Paige and welcome to The Post Concussion Podcast. All about life after experiencing a concussion. Help us make the invisible injury become visible.
The Post Concussion Podcast is strictly an information podcast about concussions and post-concussion syndrome. It does not provide nor substitute for professional medical advice diagnosis or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition.
Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. The opinions expressed in this podcast are simply intended to spark discussion about concussion and post-concussion syndrome.
Welcome to today’s episode of The Post Concussion Podcast with myself Bella Paige and today’s guest Melanie Wienhoven. Melanie is 33 years old and living in Amsterdam. She loves traveling, meeting new people and learning new ways of looking at life. She graduated with her masters of science change management in 2012 and within a few months, she fell off her bike and the start of her career was changed. Her doctors didn’t know how to help and she was told to learn what the symptoms she had, which Melanie refused to accept.
After six long years, she believes she’s fully recovered. Melanie created Lifeyana and the “Cure my concussion course” and she was here to share her story and things she’s learned today.
[INTERVIEW]
[0:01:43.5] BP: Welcome to the show Melanie.
[0:01:45.4] MW: Thank you Bella.
[0:01:46.8] BP: To start, do you want to tell us about your bike accident and what happened?
[0:01:51.6] MW: yes, of course. It was back in 2012 and I was cycling home from work and then I noticed that something was wrong with my bike so apparently, my pack lamp broke off and it swung between the spokes of my wheel. That is how I was launched forward and it’s really strange that because of the adrenaline, I think that time really went slowly and that in those seconds, I really don’t remember landing on my hands and on my knees but I did. Because right in that moment, it felt like a big, I would say, pin moved inside my skull, it sounds really gross, I’m sorry, but it was the feeling that I had, it was like something pierced my skull and it was really painful.
It really didn’t happen, it was just the feeling. Right after that, a whole range of sensations came over me. For example, I had this really strong metallic taste in my mouth and I had a high pitched tone in my ears so the one that you often hear in a movie when there has been a blast, that one was the one going on in my head.
What really scared me in hindsight but in that moment, it didn’t scare me at all is that I couldn’t see. I was blinking my eyes and I wanted to check and I knew that my eyes were opened but still, I couldn’t see, it was all black. I know that I wasn’t unconscious because I felt someone grabbing me and putting me on the curb.
I experienced everything but still I couldn’t hear voices well, I couldn’t see anything so it was like, I was inside this bubble for a while. That’s when slowly, my senses came back to me so the ringing in my ears subsided and also I didn’t have this headache anymore so this feeling of this pin, it was just that moment and I started to see a golden ring, it was trickling down from the upper part of my vision and it was like, it was moving behind a curtain of black, it’s really strange and I can still see it if I want to imagine it today because I’ve never seen such a thing before.
Then my senses came back and everything was blurry, I could see a bit and I could see all the people and I was so ashamed, I felt really ashamed. It’s so stupid and I don’t want to judge myself so I have accepted, I felt ashamed and I just wanted to get out there and that’s when that man tried to sit me down repeatedly and I heard people say something about ambulance and I was like, “No-no-no, I just want to get out of here” In the end he couldn’t detain me so I got on my bike and I was shaking so badly and I was crying and in the end, I got home but it was a really dangerous ride I think and it was also a very long ride.
[0:04:59.7] BP: Yeah, I bet. It’s interesting how that flight instinct kicks in when incidents like that occur. No, I want to leave, get out of this scenario, I just want to go somewhere.
[0:05:11.2] MW: Yeah.
[0:05:13.7] BP: I know you had some crazy vision stuff happen, that’s for sure. That metallic taste that you mentioned, have you ever had that again since your injury or was that the only time?
[0:05:24.4] MW: No, I have had it again.
[0:05:25.1] BP: You have? Okay, yeah. I’ve had it too, I know what you're talking about.
[0:05:29.6] MW: You have?
[0:05:29.8] BP: It’s weird. Yeah, it taste like you’re eating metal and you’re like, taste so weird. Yeah, I haven’t had it in a while but I did use to get it pretty often. After all that, what type of therapy did you try? I know you talk a lot about doctors in Lifeyana. What happened next after the injury.
[0:05:52.6] MW: Right after the injury, I went home, I went to sleep and the next day, I woke up and I thought, “Okay, new day, I think it was a nightmare, I’ll go to work” I realized it hadn’t been a nightmare when I got on my bike or at least, I was trying to.
Because then it was like, I froze, it was like, my body didn’t want me to go on the bike. Then I realized it was true and – okay, for one and a half or two weeks, nothing was wrong so I just went back to work and my colleagues laughed about my clumsiness and I laughed even more and that was it, I thought that in the meantime, a whole new life had started actually.
In about two weeks’ time or so. I realized that something was really wrong so I couldn’t concentrate on work, I couldn’t deliver on my work, all these monitors, it was physical pain actually, to look at the monitor. The sensation probably and yeah, then I went to visit my GP. He told me to go home and rest and cancel all of my month and just try not to do anything which I did for.
He said two weeks and after one and a half weeks, I felt like everything was getting worse, all my symptoms became worse. I went back to him and he said okay, I don’t know what to do, just visit the neurologist so he has referral and you can go there.
I had to go on my bike, at the time I was living in The Hague and it was on the other side of The Hague and it was really horrible to go there because by the time I had been lying in bed for about two weeks and my symptoms were so bad and I had to go through traffic and well okay, it was not the best time of my life, let’s say.
[0:07:41.1] BP: Yeah, for sure.
[0:07:42.2] MW: Then I came in the hospital and they did of course did a neurological test which they had to do and they performed a CT scan and then they told me that nothing was wrong and that’s the message that you’ve been reading a lot from me probably because I know a lot of people get this message still because I said to him, well first I was flabbergasted, it doesn’t happen a lot but I didn’t know what to say.
Then I said, “Okay, something is wrong, how can you say nothing is wrong?” He said, “Well, you don’t get it, there’s nothing really wrong so this is good news.” I understood the part of good news but still, I felt something was really wrong and he said, “Well, this is outside of protocols, this is outside of everything we can do for you here. It’s best that you wait and see. Go home, rest, and go back to your GP if your symptoms persist.”
This has been going on for a while so I went back to my GP. He said, go back to the neurologist and in hindsight, I should have gotten a more second opinion so visited more doctors at that moment but I didn’t know what was going on with me.
[0:08:59.2] BP: No, you don’t know.
[0:09:00.7] MW: There were -
[0:09:02.4] BP: Like you said, your GP like, you know, if you’ve known them for a long time, you develop a relationship where you trust what they say. They say rest, you go, okay.
[0:09:11.1] MW: Yes. Not even if you hadn’t known a doctor for a long time it’s – I think maybe a bit wired to respect authority and also, I think it’s a good thing to trust and have faith in people and people’s expertise of course.
[0:09:24.9] BP: For sure.
[0:09:25.8] MW: It’s a lesson now that I know also. If you think for yourself, that’s very good at all times. This has been the first part of my recovery. If you ask about therapy, if you could call it therapy, resting. Resting therapy, they don’t work for me and I know it doesn’t work for a lot of people and especially if you have had your symptoms for a long time already.
Then, my company doctor, from the company that I was working for at the time, referred me to rehab. It was behavioral rehab. When I got in, I figured, because I was really not doing well and I didn’t know what’s happening, it felt like I was losing control in illness for the rest of my life.
I was feeling like, “Okay, now I’m here, they’re going to make me better, this is it.” No, we’re going to end this.
[0:10:18.8] BP: Well, hope is good though.
[0:10:21.9] MW: Then, it appeared and I learned a lot from it so, like you already also share it with me that learning tools to cope with that or cope with energy drops are very useful in your recovery because she can save energy but it doesn’t solve the source of your concussion.
That was actually what we were doing at the rehab clinic. Although I learned a lot, it also didn’t cure my concussion. Then, a whole while of nothing so this is the time when I got isolated and eventually also depressed because I had believed this narratives that my brain injury was very bad that probably wouldn’t recover anymore, that was probably a time later on, it became, it wouldn’t recover.
Because of this, I just avoided all kinds of stimuli on my brain in order to give the best chance for recovery but this only left me isolated like I just said and also, not having any perspective on the better future. This was really bad for my mental state.
[0:11:37.8] BP: Yeah, I get that and it’s amazing how powerful your thoughts can be and if you lose that hope, it’s really hard to get it back. Now that you do say that you are recovered and it took six years. I’m glad you are recovered now. What made you decide that you’re recovered and what actually helped you become recovered. I know you actually found things that worked for you. What were those things?
[0:12:04.3] MW: Yes, let’s divide it into two. The first part of the question, how do I know I recovered?
[0:12:11.2] BP: Yeah.
[0:12:11.8] MW: It’s been two years already, over two years and that’s also how I know for sure because it’s been so long.
[0:12:17.2] BP: Yeah, that’s great.
[0:12:19.1] MW: Also, I often compare it with the feeling of being ill, having a fever while you were a child, maybe you remember it. While being children, we often have feverish for maybe two weeks or so, long time. Then you were feeling like you got low energy, you’re in bed, just sick. After that, someday, you just felt like this cloud was being lifted, right? You felt energy again, maybe a bit wobbly but happier and then the day after, you will feel like yeah, this whole new body and you could do, play around and do everything you wanted again.
I think it’s that feeling that I had after all those years that I just felt like, “What should I do with this energy?” In the first year, I was still very aware every day on, “Is it back? What is happening? Am I feeling this?” In the end, I came to realize and I also gained this trust that it was gone, that I had done the right things and also, I was lucky enough to be healthy again and to be able to find my brain.
[0:13:28.9] BP: Yes. That’s great.
[0:13:31.7] MW: If you ask for the second part of the question, what really helped me?
[0:13:34.8] BP: Yeah, what worked?
[0:13:35.7] MW: Yes. The first part was very important. Coming from this situation where I was depressed and isolated and I finally have this epiphany I would call it so this moment where I realized that I had to let go of this narrative of doctors telling me that I couldn’t recover. That brain damage after two years was just not able to heal anymore.
This was really when things started to change for me. I decided that I had to create this live action therapy research project for myself where I became my own empirical researcher, my own guinea pig, my own doctor, all in one because I had to learn and if doctors weren’t going to give me the cure, I had to find out for myself and that’s where the basis of my recovery started. I started to learn about cutting edge science and neurological research and I followed bio hackers.
I researched patient stories, anything I could get my hands on and that is when I discovered that it was not rest that I needed but I needed consistent training and I needed this training to be tailored to my injury. I need it to be constructive, I needed to be scientifically dosed in a way that I could always adapt and based on the results that I was getting and also I needed a whole package of lifestyle changes that were bringing my brain in this state where it will be able to recover and also even regenerate.
Because I didn’t only want to recover but I also wanted to get better than ever, that was my goal and most of them maybe underlying of this, I also needed a mindset that was going to help me to learn continuously and eventually win and it took me a lot of years to work all of this out because there is so much science in this area and so much I needed to learn and there was this whole world opening up for me because –
[0:15:46.5] BP: Yeah, it’s changing all the time. The science is all of a sudden this is bad for you, this is good for you but last year it was different and it’s constantly like that.
[0:15:55.9] MW: Yes, so that’s constant and on the other hand, some things are stable. When I was figuring out back then it was still a bit new but that we need training in order to recover. That’s exactly what I needed to figure out for myself and what does the training look like, how do I do it, how do I determine my intervals, all of these things I needed to figure out and that is all the things that eventually fear my concussion but yeah, it was such a long road to figure all of it out.
[0:16:25.0] BP: Yeah. Well, I am so glad that you did even though six years seems like a really long time, it still doesn’t matter because it worked and you feel great now and that’s what matters and everyone, you can connect with Melanie and learn more at lifeyana.com, which is lifeyana.com, which will also be found in our shownotes today but with that, let’s take a break.
[BREAK]
[0:16:55.7] BP: TheraSpecs are therapeutic blue light glasses for people with brain injuries, post-concussion headache and photophobia. They filter up to 25 times more of the light that causes pain and other symptoms, making them more effective than typical blue light glasses. Fluorescent screens or sunlight feel too bright or trigger your symptoms, try TheraSpecs, risk free for 60 days and see if you can find the protection and relief you need. Visit theraspecs.com/bella and use code Bella15 for $15 off your order.
[INTERVIEW CONTINUED]
[0:17:34.1] BP: Welcome back to The Post Concussion Podcast with myself, Bella Paige and today’s guest, Melanie Wienhoven. Something I wanted to ask about is your career. You kind of mentioned it a little bit, so what kind of career challenges did you face and then now that you have Lifeyana, so what led you up to that?
[0:17:54.4] MW: That’s a beautiful question especially the last part. Yeah, my career challenges, I would say that they have mostly been at the start. At the beginning, I was – well, just only weeks, I think seven weeks or so before my accident, I started a traineeship right out of university at a big large corporation and I was really looking forward to becoming the first chief executive something, I don’t know.
[0:18:25.1] BP: Yeah, I get it.
[0:18:26.9] MW: I have all of these ambitions in this career area that I wanted to fulfill and then I fell and it was really hard for me at the beginning. Well, it’s been hard all the time but especially then to tell people that I couldn’t do what was expected of me and most of all, what I expected of myself and I had to drop out of the traineeship because it was this group thing, group dynamic and if one was missing all the time and sometimes step in there were issues with trust or growth paths.
It was my decision to say, “Okay, it is better not to do this anymore” and also for myself, it gave a lot of space to not do this but it was really hard to decide. It was a big thing because I think it was the first step of letting go of those ambitions that I had. Then also, I didn’t feel especially in the beginning I couldn’t keep up with work. I couldn’t keep on performing the way I did before and especially for myself that was hard so I was beating myself up big time of all these things.
I had for example, in the beginning I was calling my manager because my doctor told me and I said, “Okay, the doctor tells me that I have to stay home, maybe tomorrow I could come in. Can I, please?” “No, didn’t the doctor told you to stay home?” and I just felt so guilty for not going to work. Well, in the end after a while, so after doing some recovery already, I decided that I couldn’t do the full-time work week again anymore, so I decided to ask for 28 hours I think.
Yeah, 27, three times nine, 27 hours and I did this for a while and my manager was so supportive and also because it was a big corporation, they really helped me. Yeah, they could carry me in a way but still in the end, I felt that all of my ambitions, I didn’t feel aligned with them anymore because this was also around the time that I was so depressed.
I just couldn’t care about making a career in the old sense anymore. I just would be happy with happy, being happy. But still, in the end, it was just something that belonged to my past and that was when I gave them my three month notice to stop working there and since then, I haven’t worked in a company anymore.
So I have been doing some freelance work, I also still have a really small [inaudible 0:21:30.5] that I started back when I was at university. This gave me space to work on my recovery and that was all that counted for me.
[0:21:42.9] BP: Well and it shows that we can be our hardest critics because as you said, the hardest part was what you expected of yourself and not being happy with it and that can be really hard because people don’t always realize it is not really what other people think. A lot of times, it is you’re having a hard time with what you think about all of it and what’s really hard and it is interesting how careers can change and how your motivation changes and mental health can do that a lot to you as well.
I get the, as you said, space. Flexibility is really important to me that’s why I do this and I do everything from home because I like to work in the morning and then I like to take the afternoon off and then I like to work at night because that’s how I work better that way and that’s what works for me and having that flexibility makes a huge difference for me as well. Do you want to tell us about your concussion course and what it’s all about?
[0:22:42.2] MW: Yes, of course. I also will answer that by answering your question that I almost forgot about how I came –
[0:22:48.5] BP: What started Lifeyana?
[0:22:49.8] MW: Yes, exactly so let’s get back to Lifeyana first to introduce it. Back when I was recovering and also during my depression when I realized that I had to change my narrative and I would find a way out that there was just no way around it, I also decided that once I found it, I would go back and share it with others because I had felt so alone and if I am not mistaken this has been one of your motivations as well, right?
[0:23:18.1] BP: Yes, for sure.
[0:23:18.8] MW: Yeah, so it was really important for me and it also really helped me to find a way because I knew I was going to try and help others as well. It’s not only being about me really helped me as well but I knew also that I really wanted to have made the recovery before sending outward that I had recovered and what I did and then about one and a half years after making my recovery, I was finally Lifeyana was online.
I really knew that I wanted to share that there is hope even if doctors tell you that it can’t be done, there is always hope and I wanted to share, use my story to help bring across that message. I wanted to share nobody was alone in this that there’s so many people going through it that is also why I make concussion stories but also that I am here and I am helping. I am trying to make materials that are helping people and I wanted to share my lessons so that others don’t have to suffer as much and don’t feel as alone as I did and can recover faster.
That’s why I wanted to do what I’m now doing and Lifeyana became the name because Yana firstly also means “you are not alone” and that is one of my main messages. I was really happy to use that part in the name and also Yana is a Buddhistic term and it means somewhat like a vehicle that brings you across the road. Yana in a broader sense to me it means that it helps you, it gives you tools to cross the road of life and it’s a bit deep but I like it.
[0:25:02.2] BP: I love it, that’s great. It’s so great, I love it, yeah.
[0:25:05.1] MW: Yes, I really love the Buddhistic referral as well, so that’s how it came to be and the cure my concussion course, I don’t know why but I always have this name in my head so it just became the cure my concussion course. I think it says it all, it cured my concussion and in it, it’s really based on the things that I shared about that helped me just before. Lifestyle changes that I needed to make in order to bring my brain inside this area where I could recover, regenerate, the brain training.
What is brain training? How do you do it? How do you tailor it to your injury? What are the schedules? How do you decide the intervals, all the practicalities in order to do the brain training and of the intervals and of your capacity all the time? Then there are also a lot of mindset and beliefs things because maybe on day one you can say, “I can do this” but after failing five days in a row for example, it’s really much harder to say, “I can do this” and how do you work with your mind.
That is a big part of it too and then there are also bonus modules and that’s what I’m constantly working on. For example, I am also a yoga instructor and I am also making videos about yoga and meditation, yoga nidra, those kinds of things.
[0:26:24.9] BP: Well, I think that’s also great. Is there anything else you would like to add before ending today’s episode?
[0:26:31.5] MW: Yes, thank you for giving me that chance. I just want to spread the message that there is always hope and even if you feel like there is none, even if you feel like tomorrow is going to look like yesterday, it is all trick of the mind and it’s really important to tell yourself that there is hope and if you need to, look at my story, look at Bella’s story, give yourself hope. It is really a choice to give it to yourself.
[0:27:01.3] BP: Well, I just wanted to say thank you so much for joining and sharing your story and all of the work that you are doing to help others feel less alone.
[0:27:10.4] MW: Thank you Bella.
[END OF INTERVIEW]
[0:27:16.9] BP: I just wanted to say thank you. The podcast is just over six months old and I couldn’t be happier with the response. If you truly love the podcast, please consider leaving a tip in our support the podcast tip jar down at the bottom of our episode description. All tips are greatly appreciated and help cover cost of the show.
Has your life been affected by concussions? Join our podcast by getting in touch. Thank you so much for listening to The Post Concussion Podcast and be sure to help us educate the world about the reality of concussion by giving us a share and to learn more, don’t forget to subscribe.
[END]
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