Air Travel

Recently, I met others living with epilepsy who said air travel had caused an increase in their seizures. When speaking to their doctors, they had also been told it was most likely stress related. Even with that explanation, most felt there could be something else to trigger the increase. While there is no evidence that the likelihood of seizures increases at higher altitude, I believe it isn’t far-fetched to deduct a change in altitude could lower seizure threshold. Here’s what I learned while researching.

Lower Oxygen Levels

The WHO reports aircraft cabins are pressurized at lower air pressure than sea level. The typical cruising altitude ranges 36,000 – 40,000 feet; air pressure in the cabin is equivalent to the outside air pressure at 1,800 – 2,400 feet. This low air pressure decreases the oxygen level in your blood, a physiological change. Decreased oxygen in blood can lead to hypoxia, the lack of oxygen in your tissue, organs, and brain. Severe hypoxia is a known flight risk and has also been linked to triggering seizures. Low oxygen levels won’t harm the average flyer, but what about those predisposed to seizures? I wonder if it’s possible that the physiological changes that occur with lower air pressure can increase seizure risk. It’s only in the past 10 years that we learned people with cardiovascular problems have increased risks with air travel. Imagine what more will discover 10 years from now!

Epilepsy information is constantly evolving

By way of example, over 20 years ago, I told my neurologist that before menstruation, my number of seizures increased. I had never been told (or read) that my monthly cycle could be a trigger, but my gut feeling said it was. My doctor assured me that menstruation was not a trigger and the increase in my seizures was mostly likely stress related. She stuck to the facts, as doctors do.

20 years later, The Epilepsy Foundation released that 50% of female patients of childbearing age, are likely to have an increase in seizures related to the hormonal changes that occur with menstruation; a physiological change. There is even a name for it: Catamenial Epilepsy. This article is not to discredit my doctor’s knowledge, but to show doctors are limited to what is scientifically proven at that given time. Our knowledge of epilepsy is constantly evolving.

RELATED: Traveling with Epilepsy: A Pharmacy in Croatia

Sharing Air Travel Experiences

Hearing stories of epilepsy patients consistently having seizures after air travel has helped me appreciate how lucky I am. I’m so thankful that overall I am a healthy person and that epilepsy doesn’t hinder my travels. Unfortunately, for many epilepsy patients this does not ring true. This also reminds me how far away we are from truly understanding epilepsy. As mentioned before, our knowledge of epilepsy is constantly evolving. The more we question, the more likely researchers will want to provide an answer.

Your Turn

Has flying impacted your seizures? Share your experience in the poll below.

Matthew’s mother first learned about the Ketogenic Diet when he was about 2 years old, but doctors hesitated to start him on it until he was 7.

Meet Matthew Williams

Matthew Williams was born on the 8^th September 1994 and at the age of nine months old he had his first seizure, this seizure lasted for about twenty minutes and was the start of a very long and traumatic journey for my family.  At one stage Matthew was having prolonged bouts of status epilepticus and many nights I spent in hospital with him in intensive care not knowing whether he was going to live or die.

I watched my son seize for hours in some cases and the future looked extremely bleak.  Matthew was put on a lot of medication and the side effects from these started to become unbearable.  In the beginning, when your child has a seizure you hold them and pray that they are going to be ok, that they are not going to die. But for us it got so bad that when Matthew had yet another prolonged attack, I would hold him and pray that he would die as I just couldn’t bear to see him suffer so much – then of course the guilt takes hold of you for even thinking such a thing.  The more medication Matthew was put on, the worse his seizures and quality of life became. 

Ketogenic Diet

I first found out about the Ketogenic Diet when Matthew was about 2 years old, but when I asked Matthew’s Paediatric Neurologist about it, she said that the diet did not work, that it was unpalatable, the children were sick through it and medication was by far the better option and was made to feel guilty for even suggesting the diet being told “don’t you think your son is suffering enough without putting him through this diet as well”.  I believed her and did what I was told like a good patient. I carried on with the merry-go-round of different medications, but nothing seemed to stop Matthew’s seizures and if anything they were making the situation a whole lot worse.   Matthew was also assessed for brain surgery, but by this time he had so much scarring and damage to his brain because of all the seizures, that there was no way that they could carry out any kind of brain surgery that would be of any benefit to him. 

The drug merry-go-round went on for nearly six years and periodically in that time, I kept on asking for the diet and kept being refused.  By this time, the film ‘First Do No Harm’ had been made highlighting the Ketogenic Diet, but when I questioned the doctors, again, I was told it was ‘Hollywood hype’ and the diet really didn’t work that well and that this film did not give the details of all the terrible side effects that there were with the Ketogenic Diet and once again I was told that drugs were the best option.  However, Matthew was having terrible seizures every day, numerous tonic clonic seizures, drop attacks, absences as well as myoclonic jerks so powerful that they would knock him off his feet.  The doctors said that IF he made it to the age of 12 then he would probably need to be in a residential placement as we would not be able to deal with him living at home anymore.  The family fell apart and I was now a single mother of not only a severely disabled little boy but also his younger sister Alice whose life was also a complete misery as everything had to revolve around her brother. 

When Matthew was 7 years old, on a yearly routine appointment with the same neurologist, I insisted that I wanted the diet because basically there was nothing else left to try.  It was a choice of going through the same drugs he had tried before but in different combinations and more of them OR get him onto the ketogenic diet.   There was no choice as far as I was concerned.  I had to tick that box.  The side effects of the medications were awful and his quality of life was so poor already that it really could not have got any worse for any of us.

A ketogenic diet clinical trial

Thankfully, Professor Helen Cross OBE  and Dr Elizabeth Neal RD had just started their Ketogenic Diet Clinical trial at Great Ormond Street Hospital. So, we were referred over to see them, and Matthew was accepted to take part and within 2 weeks of starting the classical Ketogenic Diet. Matthew’s seizures had reduced by 90%, and within eight months of starting the diet he was off ALL medication! 

His quality of life improved dramatically.  No longer were there terrible side effects from the medication. No longer did Matthew scream all day. No longer was Matthew aggressive to anyone around him by biting, hitting and pinching. No longer did Matthew try to knock over furniture in the house and generally disrupt the whole family. He was calmer, happier, more relaxed, sleeping and turned into a very loving little boy.  I had finally got back what was left of my son, and my daughter could finally have some kind of sibling relationship with her older brother.  It was a joy to watch.

The fear that I was made to feel over the side effects of the diet were totally unfounded.  Matthew experienced NO horrendous side affects to the diet whatsoever, Matthew was NOT sick all the time and the food was NOT disgusting and unpalatable.  In fact in some cases, it was more difficult for Matthew’s sister Alice, as there was Matthew eating a nice Keto blueberry muffin and a banana milkshake for breakfast, whereas his sister was only allowed a bowl of cereal or some toast!  Matthew was on one version or another of the diet for nearly six years and did just fine, the only reason he was kept on it for so long was because I was too scared to wean him off! 

Dravet Syndrome

During this time, we also discovered that Matthew had Dravet Syndrome, a catastrophic epilepsy syndrome.  It was with this diagnosis that we understood why some of the drugs had been so horrendous for him, as they were not suitable to be used with Dravet Syndrome, no wonder Matthew was so unhappy and suffered so much with life threatening seizures.   We also know now that Dravet can respond very well to ketogenic therapy and that was the treatment he had needed but had been denied for so long. Instead he had been put on a cocktail of drugs that were not suitable for his condition.

A keto break

He was eventually weaned off the MCT ketogenic diet in August 2007 and the seizure numbers never increased from what they were when he was on the diet.  The only slight problem we had was that they increased in length of time slightly.  With that in mind, I discussed things fully with Professor Cross and we decided to try him back on a very small dose of Epilim, which is a drug recommended for Dravet. 

Although at the time it felt like I was taking a step backwards, understanding his diagnosis made it clear that he did need something to keep things under control to give him the best quality of life possible, be it drug or diet.  We decided that as he had been on diet for 6 years, we would give him a ‘keto break’ for a year and try him on a little Epilim and then review after a year. 

Matthew is still on that keto break today at the age of 26 (and still living happily at home with me I hasten to add!) as he takes 600mg of Epilim twice a day and that was enough to bring the seizures he had left back down in length of time to about 40 seconds.  This we could deal with and it didn’t affect his quality of life.  He has no terrible side effects and for Matthew, this is HIS therapeutic dose of medication.  If ever things changed and went downhill, then I would have no hesitation in putting him back onto ketogenic therapy and weaning off the medication.   Monotherapy is always my goal for Matthew. 

Thank you to Emma Williams, MBE, Founder/Trustee/CEO of Matthew’s Friends Charity Global and Director of Matthew’s Friends Clinics for sharing her family’s story.

Dad has always been concerned about my education.

He made sure I graduated high school and college despite the challenges we faced as a family because of my epilepsy.

Dad always kept me in the best finery. (mom was in charge of the accessories!)

Dad is still always up for a good laugh.

Of course he always kept us buried in presents at Christmas time.

But the best gift Dad has given me is his love and dedication to my own little one.

Thank you Dad. I love you. Happy Father’s Day.

About Dr. Helbig

Ingo Helbig, MD, is an epilepsy genetics researcher, the Director of Clinical Research at ENDD, an attending Pediatric Neurologist in the Division of Neurology and the Director of Genomic Science at Children’s Hospital of Philadelphia (CHOP), and an Assistant Professor of Neurology at the Perelman School of Medicine, University of Pennsylvania. He is member of the Genetics Commission of the International League Against Epilepsy (ILAE). He is blogging about epilepsy and genes on Beyond the Ion Channel.

Why genetics?

Many types of epilepsies have a genetic contribution, and a community of clinicians, researchers, and families is heavily involved in identifying epilepsy-causing genes. Why? Dr. Helbig has tried to condense the five most important points into this article.

Things are changing fast in Genetic Science

Clinicians and researchers in the field of epilepsy are confronted with an ever-changing landscape of gene discovery. Epilepsies that were thought to be unexplained only two years ago now have a name and a gene attached to them. Dr. Helbig shares that he has met many people with epilepsy in the past who felt that genetics could not do anything for them and that their epilepsy was anything but genetic. However, as far as we know, genetic factors probably play a big role in why they have developed seizures and we might even know about specific genes that we could test for. It’s not clear if a genetics test will have answers for you, but  Dr. Helbig encourages us to ask.

The initial X-ray of DNA by Rosalind Franklin, which led to the suggestion that DNA might actually be a double helix (photo taken at King’s College, London in 2012). In contrast to her peers Watson, Crick, and Wilkins, Franklin did not receive a Nobel Prize.

Here is what we know

Today, we believe that most epilepsies without an obvious lesion or cause have a strong genetic component. This is true not only for severe epilepsies of childhood (the focus of my research), but also for many of the common epilepsies, up to the point that the community has renamed an entire group of common epilepsies from “Idiopathic Generalized Epilepsies” to “Genetic Generalized Epilepsies”. In 2015, we know more than 50 genes for human epilepsies and can probably explain 20-30% of severe epilepsies in children through genetic changes – if we test for them.

Why look for genes?

In some cases, finding a genetic cause makes a significant contribution to how we treat the epilepsy. For example, we know that in patients with a genetic change in a protein involved in glucose transport into the brain, the ketogenic diet can be a treatment. In patients with a genetic epilepsy called Dravet Syndrome, we know that we should avoid a common antiepileptic medication (lamotrigine).

Also, we have learned that severe skin reactions to the antiepileptic drug carbamazepine is tightly linked to a few specific genetic markers. However, we always point out that treatment changes based on genetic findings are still very rare. It is currently a major focus in the field to be able to use a patient’s genetic information to tailor treatment, a field called precision medicine. We hope that future research will help us explain why some people have epilepsy, to predict the course of the disease and the response to treatment, and to understand the underlying mechanisms to help develop new strategies for treatment.

Don’t fear your genes

It is our experience that many people have a biased view towards genetics and that mentioning genetic causes of one’s disease is often fear-provoking. Throughout history, people with epilepsy have been stigmatized and accordingly, people were scared that these diseases may run in the family. This fear is still true today. Many people with epilepsy view a genetic contribution to their disease negatively and make decisions based on this. We have found in some of our research that people with epilepsy decide against having children because they fear that their disease may be inherited. We see genetics as a tool to empower people with epilepsy and their families. Knowing the cause of your epilepsy offers closure and helps connect families who are in a similar situation. Some examples include the Dravet Syndrome Foundation, the International Foundation for CDKL5 Research, and the SCN2A Family Foundation. Gene findings can really lead to empowerment.

You may be asking one day

The question about genetics, inheritance, and risk tends to come up at some point. This often happens unexpectedly when starting a family, when relatives have children, or when people with epilepsy hear about new findings in the media. Dr. Helbig’s advice: if you are in such a situation, please ask. There are highly qualified professionals out there who are able to counsel you and tell you about risk and if genetic testing may make sense for you.

For more on epilepsy and genes

You can find more information about epilepsy and genes on the following websites

Epilepsy Foundation

Rare Epilepsy Network

Citizens United for Research in Epilepsy (CURE)

You can also follow Dr. Helbig’s blog, Beyond the Ion Channel. His blog is primarily targeted at clinicians and researchers, but they have found that many people with epilepsy and their families read our posts to stay informed about what is happening in epilepsy genetics.

I am 53, and I have lived with epilepsy for 37 years. Some days, I feel as though I am starting to get the hang of this epilepsy thing, but when I had my first seizure at 16, I did not expect to “live well with epilepsy.” For most of the next 37 years, I had hoped to live well in denial. Then I became a father and lost my dad.

I needed to change, but the lifelong habit of living in denial has been difficult to overcome.

On being Dad

My two children are both teenagers. I have a 15-year-old son and a 17-year-old daughter. I was about their age when I had my first seizure. They have always known that I have epilepsy, and now we also share a global pandemic. This might not seem relevant, but I think my epilepsy experience has helped my family live through this unusual period. During the last 35 years, I have developed coping skills and perspective. My children have learned some too.

It wasn’t always this way.

On the value of people with disabilities

In the months before my first child was born, I started to notice how our culture devalued people with disabilities. I would hear people say, “I don’t care if it is a boy or a girl, as long as…” I had internalized the messages too, and if I wanted to become a great father, I would need to change my view of myself, and others like me.

I did not grow up with role models for living well with epilepsy, nor did I always have great role models for being a good father. Six months after my first child was born, my father committed suicide. I wish there were a good way to say this, but I do not know if I would have learned how to live openly with epilepsy if my dad hadn’t died this way.

I knew that his death was going to be a shock, because I had been managing stress my whole life. Stress could cause seizures. Lack of sleep could cause seizures. I needed to face everything fast, so I did. Some people thought that I was brave or kind or compassionate, but truthfully, I did everything to save my life, because epilepsy was worse with all the stress.

And then, epilepsy got better.

On being an Educator, Advocate, Artist and Father

Living with epilepsy can still be difficult because I demand more from others. I reject the idea that we are merely patients, and the researchers are the experts. As an educator, I notice when people with disabilities are excluded from conversations about us. As a photographer, I want to change how imagery reflects how we are viewed. As a father, I just want to be a good dad. I am not less angry; just more focused.

And, most days, that is living well.

About the Author

Bryan Farley is a photographer in the San Francisco Bay Area. He has lived with epilepsy for years and continues to share his experience in support of the epilepsy community.