Idiopathic intracranial hypertension (IIH) or sometimes referred to by its older name, pseudotumor cerebri (PTC), is a condition where the body produces excess cerebrospinal fluid and pressure in the spaces that surround the brain, spinal cord, and optic nerves. As you can imagine, this can cause a host of symptoms including some or even all of the following: excruciating pressure headaches, dizziness, nausea, temporary or permanent blindness, memory issues, speech problems, confusion, sleep problems, blackouts, and more. Its impact on the daily lives of those who suffer is all-encompassing leaving many unable to work, engage in “normal” types of daily activities, and even make it challenging to simply get out of bed and make it through the day, much less be concerned with fitness.
My Story In a Nutshell
As a personal trainer and nutrition coach, I have a strong passion and love for health, nutrition, and fitness. However, my drive to work with those struggling with IIH/PTC stems from my own intimate experience with the issues surrounding this condition. My wife has had IIH since 2013 (a month after we married) and has since had to medically retire. We’ve experienced countless ER visits, Dr. appointments, ambulance rides, over a dozen concussions from blackouts and falls, sleepless nights, 4 eye surgeries, and the list goes on. And then there are the lost relationships. Those of you with IIH know exactly what I mean. Many people can’t handle the constant canceling of plans, missing special occasions, inability to get together, spending half of the dinner throwing up in the restroom, and the list goes on. I don’t have IIH, but because I spend 22 hours a day with my wife and because of our extremely close relationship, I understand as well as anyone could without having the condition myself.
With so many obstacles, who with IIH
We know that there is at least a strong correlation between excess body weight and IIH. Some people have seen improvements in their condition with weight loss and general health improvements while others have not had the same experience or in some cases seen worsening symptoms.
Regardless of whether overweight and obesity are causative, one thing I think we can say with certainty is that anything we can do to improve our general health, fitness, and ability to navigate our environment can only add to our enjoyment of life. Whether that involves weight loss, strengthening, improved cardiovascular health, better nutrition, or a combination of these things, is going to depend solely on the individual and their own goals and what they value.
Let’s start with nutrition.
I would say 9 times out of 10 (if not more) when someone speaks of improving their health, the discussion starts something like this:
“I need to lose weight. What’s the best diet for this?”
Without fail, the well-meaning replies from friends, family, social media connections will be one of the following:
- “Definitely keto! I lost X amount!”
- “You should go gluten-free! I feel amazing!”
- “Cut out carbs.”
- “Intermittent fasting is the best!”
- And the list goes on …
Often, there is nothing inherently wrong with any of these bits of advice with the exception that there is no one-size-fits-all approach when it comes to nutrition. There are core principles that apply to those seeking specific goals but there are numerous ways to get there.
“There are many ways up the mountain but each of us must choose a practice that feels true to his own heart. It is not necessary for you to evaluate the practices chosen by others.”Jack Kornfield
I love how this statement applies to nutrition and health in general. We all have different goals, values, preferences, and in fact, different genetics that play a strong role in how food impacts us as individuals. There are many ways to pursue health, fuel our bodies, and enjoy food and so it is important that we each find an approach that suits us as a unique individual.
Furthermore, I can be 300 lbs and have made huge strides in health improvements and energy levels as a result of a number of healthy habits that I’m currently developing, or I can be a 140 lb individual with the unhealthiest of habits. Size doesn’t necessarily dictate health. We should each feel confident in our ability to pursue health regardless of our current level of health, body size, status, etc.
Principles (Don’t Overcomplicate It)
There are a number of concepts that are important when it comes to the basic foundations of nutrition. However, as a starting point, let me point out just a few that anyone can apply regardless of their current state of health or any surrounding health conditions:
- Emphasize Protein Intake – Protein is beneficial for immune system support, maintaining muscle during times of inactivity, building new muscle during times of activity, and provides a highly satiating effect especially when moving from too low to adequate levels. Try to get some at each meal! Simple examples are Greek yogurt, cottage cheese, protein shakes, lean meats, legumes, etc.
- Mindful Eating – This is a simple skill yet so hard for many of us to implement. Thinking about the food you eat rather than simply eating “in the moment” can play a huge role in making important changes that will contribute to our overall health. Am I hungry or just bored? Is this food contributing to my current goal? Would I be just as satisfied with 1 cookie rather than 4 and if not, why?
- Food Volume – Focusing on foods that are rich in nutrient content, high in volume (filling), but less calorie-dense is a simple strategy to control overall food intake regardless of whether your goal is maintaining your weight or trimming down a bit. In short, eat your veggies! Other excellent sources of food volume that provide a good dose of nutrition without too many calories would include legumes, lean meat, berries, etc.
- Minimize Highly Processed Foods – What are “highly processed foods?” These tend to be those tasty snack foods, sweets, many prepackaged foods, etc. They are much easier to overconsume because they often don’t have the same impact on our hunger signals. Not only does this impact the consumption of those foods, but it may also impact how much we eat for the remainder of the day.
There are many other strategies and tools to use to improve our nutrition but my point in the few that I shared is that we don’t need to overcomplicate it. Regardless of the amount of brainpower you have remaining at the end of the day, even just these 3 that I’ve shared are quite doable and simply require a little thoughtful intention. The great thing is that even if you were to implement these 3 points and nothing else, you could potentially see a remarkable impact on your health!
It is a shame for a man to grow old without seeing the beauty and strength of which his body is capable.Socrates
When it comes to exercise, this can be especially challenging with a condition such as IIH. I see the struggle daily in my wife when her balance is off, intense nausea, incredible fatigue, and the excruciating pressure in her head that is aggravated by the slightest exertion of effort. Exercise? You have to be kidding, right? However, is exercise the ONLY way you can become more active?
You don’t have to “exercise” or “workout” to improve your health and reap the benefits of a more active lifestyle! Can’t do formal exercise on a regular basis due to your condition? Look for ways to increase your non-exercise activity. Something many people are unaware of is that even in those with no health issues who exercise every day, more of their daily energy expenditure comes from this
Walking has a powerful impact on the body. A short article from the Harvard Medical School points out 5 key benefits of simply walking:
- Counteracts the effect of weight-promoting genes
- Helps tame the sweet tooth
- May reduce the risk of breast cancer
- Eases joint pain
- Boosts immune function
Those are some decent benefits for simply walking more! There are of course many other ways to increase general physical activity such as taking the stairs instead of the elevator, playing with the kids, spending less time in front of the TV, etc.
One of the benefits of consciously improving non-exercise activity for those with a chronic condition that impacts energy levels is its energy-sparing effect. Exercise can be quite draining. However, strategic planning of non-exercise activity can get you moving more while at the same time conserving that valuable energy needed for simply making it through the day. Spread out over the course of the day you may find you are able to move more without becoming overly tired.
One tip for helping monitor your progress in this area is to use an activity tracker such as
Build the behavior first. Worry about the results later.James Clear
Prioritizing the establishment of healthy habits and working to change or remove unhealthy habits will go a long way to helping you achieve a healthier lifestyle! The quote above summarizes this idea in a powerful way. If we focus on building behaviors and habits that support our goal and lay a foundation for progress, the results will follow. We often focus all our attention on the end result and then become discouraged when we don’t get there or when it is taking longer than we anticipated.
What are some effective strategies for helping build new habits? Well, first, you should identify those key habits that will set you up for success in reaching your ultimate goal. From there it is a matter of getting those habits in place, ideally dealing with one at a time. Here are a few very quick tips to help with that:
- Start so small you don’t need much motivation to perform the action.
- Break habits into smaller, manageable chunks. Don’t try to do it all at once.
- Make small, incremental changes. James Clear says, “1% better every day.”
- Stack your habit with another that you already have in place. Trying to drink more water? Drink a glass immediately after you walk in the front door, regardless of the day or time.
- Show yourself grace and pick yourself up when you stumble. Don’t expect to fail but plan for how you might deal with it and get back on track so one day off doesn’t turn into two.
My primary goal for those reading this post is that you understand the following:
- Your condition doesn’t define you and doesn’t prevent you from engaging in health-promoting behaviors regardless of where you find yourself right now.
- You have options for improving your nutrition and becoming more active and are deserving of the attention necessary to help you discover the best fit for you as a unique individual.
- You are valuable beyond measure and deserve to be heard, understood, and served in the area of health and fitness. The loud, obnoxious, inaccurate, unhelpful, insensitive and often offensive voices of the culture and media do not speak for all of us in the fitness industry.
There is so much more that could be said about these different areas. If you need more help in getting started on a path to a healthier lifestyle, you might benefit from 1-on-1 coaching tailored to your specific lifestyle, goals, limitations, and circumstances … and it can be done completely online! Find out more here or please reach out to me on social media (links are at the bottom of this page in the footer). I’m always willing and in fact, excited to help in any way I can!