Post-concussion syndrome sleep & hope for recovery

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Table of contents:
01:17
Hope for post-concussion syndrome recovery
07:30 Neuroplasticity and evidence-based therapies
12:20 Post-concussion syndrome sleep disorders
17:54 Post-concussion syndrome and vivid dreams

Introduction to this episode on post-concussion syndrome sleep & the power of hope

Post-concussion syndrome causes sleep problems for many of us. What is the reason behind this, what processes cause sleep disorders after sustaining a traumatic brain injury? Dr. Ramon Diaz-Arrastia explains in this Concussion Stories episode. 

Before he does that, he talks about the absolute and essential need for medical professionals to give hope to patients with a traumatic brain injury – especially to those of us who experience a prolonged concussion or post-concussion syndrome. There are a lot of reasons for hope when it comes to complete recovery from a mild traumatic brain injury (this is a concussion).

Concussion Stories

[0:00 Melanie] Welcome to Concussion Stories, a Lifeyana podcast series filled with hope. I’m here to let you know that you are not alone in your concussion recovery. I’m Melanie and I spent more than six years experimenting, training and learning in order to heal myself from a very bad case of post-concussion syndrome. And today, I feel better than ever before. 

In Concussion Stories, we dig deep while discussing hopeful stories of recovery, as well as the hard stuff in the messy middle. If you’re struggling to focus, be sure to take breaks. Down in the description of each episode, you can find a table of contents – in case you want to skip ahead. Let’s dive right in. 

Dr. Ramon Diaz-Arrastia

Welcome to yet another episode with Dr. Ramon Diaz-Arrastia. As a leading researcher in the field of traumatic brain injury and a practitioning neurologist, he has so much to share with you about concussion and post-concussion syndrome diagnosis and recovery. 

If you haven’t listened to the first episode yet, I recommend you do that first to get a better understanding of everything our guest is talking about. Without further ado, let’s hear from Dr. Ramon Diaz-Arrastia. 

Hope for post-concussion syndrome recovery

Hope for post-concussion syndrome recovery

So I wanted to ask you one other thing that’s very closely related to what we just discussed. You and your colleagues composed quite an extensive list of potential negative consequences of wrong estimates of TBI severity. 

Doctors took my hope for recovery away

On the one hand, you describe overestimation, which can lead to, for example, a fear of the future, adaptation of unnecessary illness behavior. And when I read this, I could absolutely relate to this, because when different doctors told me that my brain damage was beyond repair and that I had to learn to live with my debilitating symptoms, I tumbled into depression. 

The importance of hope for post-concussion recovery

And I wanted to ask you: what role do you feel that hope, so not false hope, but the possibility of hope or taking it away entirely has in post-concussion recovery consultations by doctors?

[2:26 Dr. Ramon Diaz-Arrastia] Oh gosh, hope has a fundamental role. Frankly, in all of medicine. Someone who has a diagnosis of cancer, for example… And there are many studies done on this: people who are hopeful tend to live longer, they tend to have a higher quality of life. So that’s something that’s inherent to humanity. And I think here we’re delving outside of my expertise and into philosophy or religion or whatever. 

But clearly, any of us who are in medicine and are involved in managing and treating sick people have to recognize that you cannot take hope away from people. Hope is a fundamental feature of humanity and we all need that. 

Neuroplasticity and cases for hope

Having said that, I think in neurology and in brain injury medicine, there’s actually good reasons for hope. The brain is a very remarkable organ in the way that it works and the way that it’s designed and the capability that it has for repair and recovery and plasticity. It’s actually quite remarkable. 

And I think, here, it’s most remarkably seen in something I was talking about earlier, which is people with severe brain injuries. So people that come in after a very severe automobile accident or motorcycle accident. They have large areas of hemorrhage in their brain. Their intracranial pressure goes up and they need neurosurgical procedures. They need a lot of invasive monitoring, etc. 

Somewhere about 20% of those people make a full recovery, meaning that within six months to a year, they are back to doing exactly what they were doing before in their life. If they were a PhD student in physics, they are back to studying very high-level science. 

It’s very remarkable to see. You look in their brain and their MRI still looks terrible. They still have areas of scarring in important parts of the brain: how is this person doing so well, when their MRI looks so terrible? 

Good outcomes for mild traumatic brain injury

I think the answer to that is that there is remarkable redundancy and plasticity that’s sort of built into brain function. That doesn’t happen all the time, but it happens enough of the time that it’s certainly very worthwhile and critical giving hope. And of course for people with milder injuries, the likelihood of a good outcome is even better.

[5:32 Melanie] Yes, indeed. In fact, the things that you just mentioned are the things that exactly gave me hope in the end after losing it from all the consultations with specialists. I found hope in a book that described brain injury recovery in patients with so much more severe injuries than I had.

The Central Park Jogger

[5:54 Dr. Ramon Diaz-Arrastia] I mean there are several of these books have been written and I’m not sure the one that you’re referring to, but there was a very famous case in the United States many years ago, when I was still a resident, in New York City of the Central Park Jogger. I don’t know if you know that story. 

This was a young woman who was working in the financial industry. And this was in the 1980s in New York City. There was a lot of crime and a lot of violence. She was jogging in Central Park and she was assaulted and raped and had a very severe brain injury. She was in a coma for over a month and had a very prolonged recovery, rehabilitation for many months, etc. 

But over time – and it took her several years – she made essentially a complete recovery. She didn’t remember anything about the assault or her hospitalization. Her brain was so injured that she wasn’t forming any memory during that, but she wrote a book about her experiences. And it’s a very dramatic book, I think, talking about her process of recovery.

The brain can recover from traumatic brain injury

But there have been others. There have been other people, many of them I’ve met personally. Not all, but many of those stories are incredible in terms of… It really humbles you to know about what the capacity of the brain can do to recover and obviously, the resilience of many people who have recovered

Neuroplasticity and evidence-based therapies

Neuroplasticity and evidence-based therapies

[7:30 Melanie] Yes, it’s so wonderful what the brain can do and how surprising it is with regard to how much it can change and adapt. And I was even the most surprised back when I was learning all of this about how other centers of your brain can take over functions that have been lost by certain centers. That was when I decided: “Okay, this is going to work for me. I’m going to use this.” 

Neuroplasticity and neurogenesis

And that’s exactly the thing that also for example tens of thousands of dollars costing clinics in the US are basing their treatments on. The thing that I used also, in order to recover. One of the principles is neuroplasticity and even neurogenesis, which you can stimulate by yourself. Is this something that you use in practice as well, that you mention to your patients?

[8:34 Dr. Ramon Diaz-Arrastia] To be honest, brain injury is so common, and it’s primarily an unmet medical need. This means that, as neurologists, neurosurgeons, rehabilitation specialists, we actually do not have therapies that are scientifically evident on an evidence-based basis and have proven to work and to improve outcomes. 

Because there’s this large demand and there are many individuals who are struggling to recover from these brain injuries, that has led… Many clinics have popped up, frankly, all over the world, promising alternative therapies. Some of which may work and some of which may not. 

Stick to science-based recovery treatments

So I think that’s another message that I think is really important. Obviously, as human beings we are very inclined for magical thinking, let’s put it this way, which is part of the same need  that we have for hope. We are inclined to magical thinking. And that works some of the time, but frankly, it’s not as effective as the scientific method. 

We’ve used the scientific method only for about 200 years, which is a speck of time, a blink of an eye, in terms of the time of our history on this planet. But really, the scientific method is what is going to get us out of this morass. It’s what’s gonna allow us to truly have effective therapies, the way it’s worked in other areas of medicine. 

So I think that’s another message that I would think that the audience for this podcast should listen in: stick to things. Obviously, you need physicians, you need medical specialists who do provide hope – because there is a lot of hope to be administered. But also who are focused on therapies that actually are supported by science, that are supported by science and evidence, rather than… There’s a lot of stuff out there that just isn’t.

Applying preliminary TBI research findings

[11:10 Melanie] Yes, I agree. Oftentimes, in the field of traumatic brain injury, it’s hard, if you’re going through it right now, to wait for science to catch up with what we already can assume based on what has already been proven in several research papers, for example, but not has been peer reviewed enough and consolidated into new protocols, and wait for it until we really try. 

So that’s the thing that I did for my recovery. I researched so much. I read so many papers. And then based on what I saw coming into existence, I used that and applied it. And that’s what helped me.

Clinical trials for post-concussion recovery

[11:51 Dr. Ramon Diaz-Arrastia] And I would certainly encourage anyone who has the ability – but not everybody has the ability – to enroll in clinical trials, because that’s ultimately how we’re going to work your way out of this morass. And there are many clinical trials ongoing. And I think if people live in a community where there’s a major university, a major research center going on, I think that’s something I would definitely encourage.

[12:19 Melanie] That’s a really good suggestion. 

Post-concussion syndrome sleep disorders

Post-concussion syndrome sleep disorders

Can I just switch to one more topic that a lot of us have trouble with? …And that’s sleep. Last year, you co-published an article in which you wrote that sleep disorders affect over half of mild traumatic brain injury patients

In your study, you compare I think biomarkers of neurodegeneration and cognitive function with sleep quality in soldiers with post-concussion syndrome, so long term mild traumatic brain injury.

The neurobiology of sleep

[13:03 Dr. Ramon Diaz-Arrastia] Sleep medicine is a very hot area right now. And it has been for the last few years. We’re learning a lot about just the basic neurobiology of sleep: how is normal sleep controlled and what is the function of sleep? 

And it’s very exciting science. There have been really revolutionary discoveries of that in the last several years. 

So the bottom line is that inducing sleep and maintaining sleep involves a complex neurobiological circuitry. The brain nuclei, the brain regions that are involved in this, are generally at the base of the brain, in the part of the brain called the hypothalamus.  This is the part of the brain that is very commonly injured in traumatic brain injury. 

Traumatic brain injury often causes sleep problems

Obviously, we know that patients with traumatic brain injury… One of the most common complaints that they have is problems with sleep. They have problems with getting to sleep. They say, “I go to bed, but I toss and turn for two, three hours before I fall to sleep.” 

They have problems maintaining sleep, saying, “I go to bed and eventually fall asleep and then I wake up at three in the morning and cannot go back to sleep.” They have problems feeling sleepy during the day because they’re not getting sleep at the regular time. 

Circadian rhythms: problem #1

The other thing that we know about sleep is that it’s critical to entrain the circadian rhythms in the body. Much of normal physiology is circadian, right? It happens at certain times of the day: sometimes it happens in the day, sometimes it happens in the night. Maintaining that normal circadian regularity is really critical. 

You may be asleep for 8-10 hours a day, but if you’re not sleeping in the right cycles, you’re not really getting the benefits from sleep. Many of the hormones and neurotransmitters and other physiological processes that work to maintain healthy brain functioning and certainly work to sustain recovery from an injury are made during sleep. 

Growth hormone deficiency: problem #2

We know about growth hormone and the somatotropic axis: it turns out growth hormone is released, generally, in the early hours of the morning and it’s also released usually between 3am to 5am somewhere in there. It’s associated with periods of REM sleep. People who are not getting good enough sleep are not getting enough growth hormone and other benefits of the somatotropic axis. So sleep is hugely important. 

Accumulation of toxic proteins: problem #3

The other area that is a very active area of research is that sleep turns out to be really important in clearing… It’s basically the brain’s refuge. So aggregated proteins or other things that the brain needs to get rid of, are mostly eliminated during sleep. 

There’s a recent discovery of the lymphatic system in the brain, right? In fact, there are pathways by the brain, just like there are in every other organ, to get rid of dysfunctional proteins or other things of the sort and that’s most active during sleep. People who are not sleeping well tend to have problems accumulating these toxic brain proteins. That appears to be a big problem in dementia and Alzheimer’s disease and probably a big problem in traumatic brain injury as well. 

TBI sleep research and intervention

Our practice in my clinic is: we always pay a great deal of attention to how our patients with TBI are sleeping. Frankly, the majority of them are not sleeping well and intervening to help them get better sleep is often a very effective intervention. 

We were very liberal about doing sleep studies where we can actually use EEG and other physiologic assessments to measure their sleep and their stages of sleep. If they have sleep apnea that can be treated. If they have other kinds of sleep disorders those can be treated as well – not always, but if they can be treated, they can have that as well.

Post-concussion syndrome and vivid dreams

Post-concussion syndrome and vivid dreams

[17:54 Melanie] This is something that I completely recognize from my own experience as well. So when I was recovering, right from the onset of my symptoms – it was about one and a half weeks after my injury – I started experiencing very vivid dreams and nightmares during the day and in the night. 

My circadian sleep rhythm was gone

My circadian rhythm was completely gone. Every time I woke up, I felt like I had already gone through a complete day of horror and my dreams were so vivid, so I could remember every second, almost. I don’t know if I remember every second, but it felt like it. 

And then I first had to get rid of all of those memories and get rid of all the emotions that came over me and then start the day. And it was a downward spiral. Everything is getting out of control because of that. 

Sleep therapy

Once I started sleep therapy, it was so much easier to get a grip on my symptoms and to have energy again also to move forward. So I strongly recommend for everyone to also start with this, because it’s one of the primal recovery processes of our brains.

[19:20 Dr. Ramon Diaz-Arrastia] Right. There’s good data on the use of melatonin… So melatonin is the body’s natural hormone that this hypothalamic brain circuitry uses to induce sleep. It is available as a nutritional supplement in most countries. And there’s good data that the use of melatonin can help improve people’s sleep after TBI, not in every situation but enough of them to be certainly a worthwhile thing to try. And it’s very simple.

[19:56 Melanie] Yes, it is. In my experience… I don’t know what you think, but I didn’t want to take it for too long, because I didn’t want my body to produce less and less of it, because I was already giving it. So then I replaced it with valerian root and that helped me sleep as well. It’s natural… It’s a plant. But it doesn’t help for everyone.

Thanking Dr. Diaz-Arrastia

I want to thank you for your time and especially for your dedication, your insights, everything that you just shared with us. I feel that this is going to be so valuable for a lot of listeners and it’s even been a bit healing for me as well. Because after the fact, it’s so good to hear the stories, these people who are really advancing the field and helping us get a better home in the medical area. So thank you for your work.

[20:51 Dr. Ramon Diaz-Arrastia] Congratulations for putting this together. I know that you’ve talked with Dr. Maas and you’ve talked to Lindsay Wilson. And I think you have already been able to collect really many of the thought leaders and intellectual leaders of the brain injury fields. So that’s terrific. Congratulations for this project that you’ve launched yourself.

[21:10 Melanie] Thank you very much. Well, it’s not for me, it’s for all of our listeners. So I hope it helps them.

What do you take away from this episode?

[21:28 Melanie] Now I would love to hear from you. What do you take away from this episode? Is there something that you can apply to your life right away? Head on over to lifeyana.com and leave your comment now. 

And if you want to hear and read more Concussion Stories, actionable steps and inspiration, be sure to subscribe to the Lifeyana email list while you’re there, so that you never miss out on new materials we constantly make for you. If you want to support this podcast, head on over to patreon.com/concussionstories

Thank you for listening to this Concussion Stories episode by Lifeyana. May you be well and may you be happy.

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