Improving overall health and wellbeing can have a positive impact on the severity of our symptoms and how we are able to manage them.
The following is a glimpse into a deeper exploration on this topic. Learn more in this comprehensive 3-part series.
So what can we do to help improve our overall health and wellbeing?
I want to start by saying I’m not suggesting it is easy. I acknowledge that everyone is different, including the severity of our symptoms, our response to medication, and the level of support we may receive.
I also acknowledge that lifestyle changes can not only be difficult to initiate, but they are often difficult to maintain. Even the thought of making changes can be overwhelming. I know because I spent many years thinking that way myself.
Through years of research and trial and error, I have identified some things that I know can make symptoms worse or certainly more difficult to manage. By sharing what has proven effective for me and others, I aim to inspire hope. I believe that, although it's not easy, it is possible to optimise the positive potential of living with Idiopathic Hypersomnia (IH). It's important to note that making lifestyle changes has not magically made my IH symptoms disappear. I still have IH with long sleep, sleep inertia, and sleep drunkenness. I am, however, the happiest and healthiest I have ever been. My goal is to show how, by taking a holistic approach to your health, through a combination of healthy habits, emotional resilience, and a strong support system, you can navigate the challenges of your illness and thrive despite them.
Taking a holistic approach to managing IH is vital. Incorporating physical, mental, emotional, social, and spiritual components of health is essential to overall wellbeing. There are many things that can have an impact on the severity of our IH symptoms and our ability to manage them. If your overall health and wellbeing are compromised, so too will your ability to manage your IH symptoms. It is important that you discuss with your healthcare providers and your family the potential consequences of your diagnosis, such as the need to reassess career options, adjust personal aspirations, or how you will manage the effects on existing family responsibilities. So why do people with IH find some days, weeks or even months more difficult than others?
Aside from the people who have other medical and/or psychological conditions which can account for or contribute to their symptoms, the most likely reason IH can appear to have worsened is because the person's ability to manage their symptoms is compromised by other external factors they are not taking into consideration. For example, the impact that chronic stress can have on us, particularly on our cognitive ability. Other factors include: what we eat; our level of physical activity; sleeping patterns; and hydration. Making positive changes can have lasting effects on your personal wellbeing. The foods you eat, the amount of sleep you get, and your exercise habits can all influence your weight, hormonal health, level of pain, inflammation, and impact the severity of your IH symptoms and your ability to manage them.
Stress management and mental health
We know that chronic stress can have a huge impact on cognitive function. We also know that people with chronic illnesses are at a greater risk of developing depression and anxiety, and that this too impacts how well someone with IH manages their symptoms. But just how significant can the stress be for someone with IH?
For many people with IH, every morning is a struggle. Once they’re awake, they’re expected to stay awake all day, despite an overwhelming and insatiable need for sleep. And that’s regardless of how much good quality sleep they’ve had. There is no reprieve from the sleepiness; the challenge is never ending. But, all too often, this constant struggle is compounded by both the expectations of others and the expectations which people with IH place on themselves. Can you imagine what that would be like, day in and day out, for years and years?
Many people with IH go years without even knowing they have a neurological disorder that is responsible for what they experience. They have no “excuse” to offer those who criticise them. Then they get diagnosed, but with a condition which is often misunderstood by even the medical profession. It isn’t recognised appropriately in many parts of the world (I doubt it is recognised appropriately anywhere in the world). This diagnosis quite often ends up creating more questions than answers. The stress this can cause is enormous, and quite often, but not surprisingly, it results in depression and anxiety. This stress is chronic, and its effects are damaging and long lasting.
Stress impacts EVERYTHING
Declutter your life - start with your home.
Organise your morning the night before.
Plan for things as far in advance as possible.
Identify when you’re most productive.
Make lists and set reminders. Feeling prepared reduces anxiety.
Remove toxic people. Be ruthless.
Put yourself first - It’s true, you can't pour from an empty cup.
Self-care is not selfish. So don’t feel guilty, and don’t apologise.
Simplify your life and create more space for what truly matters.
There is nothing wrong with putting yourself first. I know those of you who are mothers may find the concept of that difficult, but it’s true; you can't pour from an empty cup. Self-care is not selfish. Self-care allows us to continue functioning and increases our ability to help care for others. So don’t feel guilty, and don’t apologise. Make your life as simple and uncomplicated as it possibly can be; you will be glad you did!
Don’t compare yourself to others. Don’t compare yourself to other people with IH, and definitely don’t try to compare yourself to people in general.
It is important to keep in mind that due to the range of different symptoms, severity, and additional complexities, including other health issues, as well as the different ways we each respond to medication and the various levels of support we may have, it is not even possible to compare yourself to other people with IH, much less people who do not have IH.
Quiet your inner critic.
Remind yourself that you are doing your best, and that’s all anyone can ever expect of you. Work on accepting where you are and celebrate your successes. Don’t be too hard on yourself. Some days are a complete write-off for me. Instead of letting this get me down, I give myself what I need, which is quite often sleep. But it may also be good food, quality time with my family, or just some quiet time alone away from my phone and other distractions.
It’s okay to say no.
Learn what your individual strengths and limitations are, and then adjust your expectations of yourself accordingly. Once you are aware of your limitations, be brave and clear when communicating them to others. Set boundaries and stick to them. Don’t let others tell you what you can and can’t do. Your time and energy are limited, so you need to be self-regarding.
Don’t be too proud to ask for and accept help. Even if you don’t think you need it, it’s a good idea to take every bit of help you can get. I said this recently to someone with IH who was contemplating motherhood, but it applies to everyone. But if you are a mother or are contemplating motherhood, when we are in warrior mode, as mums generally are, it is particularly difficult for us to identify when we need help - even while we are in the process of driving ourselves into the ground! If you have someone who cares about you and wants to help, let them. Identify when you’re most productive. Pay attention to when you usually get the most done, then plan your most important tasks for that part of the day. Medication may help you feel more alert than you would at other times of the day, but you may also experience a subsequent ‘crash’ as this medication wears off. Try to plan your days and tasks accordingly. Work on accepting where you are and celebrate your successes.
Self care and acceptance
The relief we may experience when diagnosed with Idiopathic Hypersomnia and the confirmation that we have a genuine disorder are often short-lived. If I could say only one thing to someone newly diagnosed with IH, it would be, “You need to prepare yourself for this and learn how to manage your expectations.”.
It is essential to recognise and acknowledge the profound impact a diagnosis of Idiopathic Hypersomnia can have on your life. For many, grieving for their health after a new medical diagnosis can be an unexpected challenge. The type of grief that comes with chronic illness is complex, and the cycle can restart with each new issue that arises. Some people may not even realise they are undergoing a grieving process.
It is okay to grieve the loss of who we were prior to the onset of symptoms. It is ok to mourn who or what we hoped to be, but we need to accept that we may never be that person again. Acceptance allows us to move forward and be grateful when treatments do work. It allows us to start building a life that is suited to our condition. It allows us to create our version of normal and live a life that is free of unrealistic goals and expectations. We can replace self-criticism and struggle with revised goals and more appropriate expectations. It also frees us from the guilt and shame that so many of us feel, and that alone has a huge impact on how much happier and brighter our future will be. If you are struggling to come to terms with this life-changing diagnosis, you may need the assistance of a specialised therapist. Practicing self-care benefits our physical, mental, and emotional health and wellbeing. It helps us foster a better relationship with ourselves and minimise stress and anxiety. It teaches us to be mindful of our own needs and to better support ourselves and others.
Acceptance is something many of us don’t even realise we need to do, but I can assure you that until you accept your situation and live your life accordingly, the people around you will find it difficult to reach the level of acceptance you expect and need from them.
I accept that miracle cures aside, genuine Idiopathic Hypersomnia is lifelong. That doesn't mean that the current treatments on offer won't help, but rather that the underlying problem is not going to disappear. It is ok to mourn the loss of who we were prior to the onset of IH; in fact, it’s necessary. It is ok to grieve for who or what we hoped to be, but we need to accept that we will never be that person again.
Acceptance allows us to move forward and be grateful when treatments do work. It allows us to start building a life that is suited to our condition. It allows us to create our version of normal, and live a life that is free of unrealistic goals and expectations. We can replace self-criticism and struggle with revised goals and more appropriate expectations. It also frees us from the guilt and shame that so many of us feel, and that alone has a huge impact on how much happier and brighter our future will be.
This section comes from part one of the 'LIFE AFTER DIAGNOSIS - Insights into how to live your best life' series. Explore these topics in more detail here.
Next we take a look at healthy eating, hydration and how making different choices can have a positive impact on our symptoms and our ability to manage them. Additionally, we look at medication management and discuss ways to harness its full potential.
Healthy Eating
It is indisputable that nutrient deficiencies and poor health cause low mood, anxiety, poor concentration, irritability, fatigue/tiredness, and sleep disturbances. But when investigating the cause of your symptoms, how many doctors asked you what you ate? Did they explain how certain foods can affect your symptoms? Did they discuss with you how simple changes to your diet can have a positive impact on your symptoms?
When consumed, carbohydrates are generally quickly absorbed into the bloodstream as glucose, which is sugar. This causes a spike in blood sugar levels and, consequently, a surge in energy. But, just as quickly as carbohydrates are absorbed, your blood sugar will also fall rapidly, which can lead to tiredness, fatigue, weakness, irritability, and brain fog – symptoms IH people can do without!
The afternoon crash you experience is not just due to your hypersomnia hitting you when your medication wears off. It is also likely to be due to the carbohydrates/sugar you consumed earlier in the day.
To regulate blood glucose levels, the hormone insulin is released from the pancreas. However, insulin prompts excess carbohydrates to be stored as fat. It raises the risk of developing health issues such as obesity, insulin resistance, and type 2 diabetes. Therefore, the best way to regulate blood sugar levels is to greatly reduce your carbohydrate intake and replace it with a healthier alternative.*
A diet containing fewer than 100 grams of carbohydrates per day can assist in stabilising blood sugar levels. This mitigates the harm of sudden spikes and the dramatic crash that follows. It is important to remember that all carbohydrates you eat and drink become sugar in the body. That includes glucose, fructose (a.k.a. fruit sugar), sucrose (a.k.a. table sugar), and lactose (a.k.a. dairy sugar).
Once consumed, all carbohydrates end up as sugar in the body.
*Click here for a comprehensive guide to eating healthy. It includes foods to avoid to minimise the risk of inflammation (and why that is important) and also information on the benefits of intermittent fasting.
Hydration & the role Electrolytes
Electrolytes like sodium, magnesium, and potassium are essential minerals that are vital to many key functions in the body. Dehydration and frequent urination can cause electrolyte imbalances. People with IH can be particularly susceptible to dehydration and electrolyte imbalances.
This is due to:
1. Medications. Firstly, stimulate medication can cause you to focus on one specific task at the detriment of others, so you just forget to drink water.
2. Also, all amphetamine-based drugs and modafinil/armodafinil are diuretics, which means they can dehydrate you by making you urinate more. When you urinate more, you lose essential electrolytes.
* Learn more about amphetamine-based medications here: “Why is my dex not working 3. Sleeping for long periods and/or not taking care of our hydration needs because we often neglect our wellbeing due to being too tired to even notice the effects of that.
Electrolyte imbalances can mimic symptoms of IH, making it challenging to distinguish between the two.
Dehydration and electrolyte imbalances cause many of the symptoms people with IH experience. This includes headaches, dizziness and light-headedness, cognitive dysfunction (brain fog), ie: confusion, trouble following a conversation, forgetfulness, etc, and feeling tired or fatigued. It can also cause an irregular or fast heart rate, muscle cramps, muscle spasms or weakness, nausea, and vomiting.
For many years, there have been days where I don’t feel like I shake the ‘sleep drunkenness’ at all. Fortunately, this has improved a bit since switching to a low-carb lifestyle, which includes intermittent fasting. I now make sure to regularly replenish my electrolytes.
I have now added a bottle of sugar-free electrolyte-replenishing water to my morning routine. I’m still horizontal and half-asleep when I take my first dose of medication in the morning. Then, I continue to sleep for another hour or so before attempting to wake up for the final time. I then start drinking the electrolyte water as soon as I can when I wake up. I do this before I am up (i.e., vertical and out of bed).
It is still extremely difficult for me to wake up. But adding the electrolyte water has helped with the morning nausea and headaches. The length of the 'sleep drunkenness’ has reduced slightly too, provided I keep my fluids and electrolytes up throughout the day and keep my carbs down.
Amphetamine-based Medications
If you take amphetamine-based medications, eg: dexamphetamine/dexedrine (Dex), lisdexamfetamine (Vyvanse) your diet and the timing of both your food and medication intake can have an impact on the effectiveness of these medications. Your body needs both acid-forming and alkaline-forming foods, so eating a balanced diet is important. However, acidic and acid forming foods (including caffeine and vitamin C supplements) decrease the absorption of amphetamine-based medications, reducing their effect. These foods tend to make urine more acidic too. This increases the rate by which amphetamine-based medications are released from the body, which also reduces its effectiveness.
Normally around 30% of all amphetamine-based medications are excreted in the urine. However, highly acidic urine (around pH 4-5) will result in as much as 75% of the amphetamine-based medication being eliminated from the body. In contrast, low acid or alkaline urine (around pH 8) will result in less than 5% of amphetamine-based medication being eliminated via your urine, making it much more effective.
If you are taking your amphetamine medication with your morning coffee (or tea), STOP!
These medications are also more effective when you are hydrated, so drink plenty of water (not soft drinks, fruit juice, or caffeine drinks, as these are all highly acidic, or acidic forming) and do not take them with food.
You should aim to take these medications at least 45 minutes before food and at least 2 hours after food.
Give yourself a break from medication.
To avoid building a tolerance to your wake-promoting medication, schedule days when you take a break from it. I do this at least once a week, usually on the weekend, when I don’t have to drive anywhere or make important decisions. Some take a week-long medication break, such as when they’re on vacation. If you notice that your medication is no longer as effective, these breaks can reset your tolerance.
Always speak to your doctor first about how to maximise the effectiveness of your medication. Remember to tell all of your treating doctors which medications you take (don’t assume they know). Amphetamine medication interacts with various vitamins, minerals, and medications, including some popular antidepressants, so if your doctor doesn’t offer information, please ask.
Delay your morning caffeine fix!
It is important to delay that first cup of coffee (or tea) for at least 90–120 minutes after waking.
People who take amphetamine-based medications should do this anyway, assuming they take a dose of medication upon awakening (refer to information above). The other reason this is advisable is because it allows adenosine levels to rise slightly, making caffeine more effective at blocking receptors and keeping us alert throughout the day.
Also, our body naturally makes cortisol, a hormone that wakes us up. This starts as soon as we open our eyes. By delaying caffeine intake by 90–120 minutes, we allow the body to wake up naturally and produce cortisol without interfering with its natural rhythm.
This section comes from part two of the 'LIFE AFTER DIAGNOSIS: Insights into how to live your best life' series. For a deeper exploration of these topics, you can access the full 19-page document here. It includes detailed information and a list of references for further reading. In the third section we cover sleep, the important role of morning sunlight, Vitamin D deficiency and also physical activity and the benefits of Mindful Movement. Healthy Sleep Practices - Prioritise sleep
It may be tempting to use medication to try to participate in life more. But, it’s important to remember that people with IH generally do not function very well on less sleep (less than they are used to). You may get away with sleeping as much as an average person (eg; 7-9 hours) for a day or so; however, doing this for more than 2-3 days in a row is likely to catch up with you and result in a ‘crash’.
Many people who have learnt how to best manage their IH symptoms generally still sleep excessively, they just sleep a little less excessively. Despite medication, they may still sleep 10-11 hours or more every 24 hours. And, even more on days they allow themselves to go without medication.
Your sleep environment and routine impact your sleep health. Familiarise yourself with healthy sleep practices, then work them into your daily routine. If naps help, schedule them into your day. Understand how light, especially natural sunlight, impacts your circadian rhythm and use it to your advantage. Find a routine that works best for you, then stick to it. Adequate sunlight
Like sleep, diet, and exercise, light, particularly natural sunlight, directly impacts our mood, sleep quality, ability to wake up and focus, hormone levels, immune system, and ability to cope with stress.
Exposure to natural sunlight in the morning helps regulate our circadian rhythm, often referred to as the body's internal clock. Our circadian rhythm is the body’s mechanism for anticipating when to wake up and go to sleep. It also manages other biological processes, like hunger and body temperature.
Morning sunlight exposure helps regulate the production of melatonin, a hormone responsible for sleepiness. Natural light exposure in the morning suppresses melatonin production, signalling to your body that it's time to wake up and be alert. Viewing sunlight within the first hours of waking (the sooner the better) also increases the release of cortisol. A morning spike in cortisol will positively influence your immune system, metabolism, and ability to focus during the day and prepares the body for sleep later that night. It also boosts serotonin, which contributes to feelings of wellbeing, so it’s a good idea to get out in the sunlight again in the early afternoon or lunchtime (this can help with the afternoon crash).
As soon as possible after you wake up in the morning, go outside for at least 5–10 minutes. If you have time to do more, that’s even better. It can be a great opportunity to do some light exercise. I generally take a walk around my backyard, but some people do some yoga or stretching. If it’s an overcast day, there is still enough sunlight to trigger positive effects. You’ll just need to increase the time outside to at least 15-20 minutes. If it’s dark when you wake up or if the weather prevents you from going outside, turn on as many bright indoor artificial lights as possible, then get outside as soon as the sun is out.
As the evening approaches, follow the natural rhythm of the sun by dimming your environment. Turn off harsh overhead lights and opt for softer lighting that lamps can provide. And don't forget to dim your computer and phone screens as well. Apple and Android phones have night mode features you can turn on. Vitamin D
Sunlight is not only important for regulating our circadian rhythm. Approx. 42% of adults in the United States have a vitamin D deficiency. Most cases of vitamin D deficiency are due to lack of outdoor sun exposure.
Vitamin D deficiency is linked to fatigue, cognitive impairment and other symptoms including headache, musculoskeletal pain and weakness, and depression. All of these symptoms can exacerbate IH symptoms or make them more difficult to manage.
Vitamin D is easy to absorb through incidental exposure to sunlight but if you sleep excessively and it takes an extended period to wake up and be functional every day, chances are, you don’t get as much exposure to sunlight as a regular person does.
If you aim to get some direct sunlight within a few hours of waking up (the sooner the better) and again in the early afternoon or lunchtime, you will avoid the negative effects of vitamin D deficiency.
Mindfulness
Mindfulness is a powerful human ability that allows us to be fully present in each moment. When you are mindful, you are aware of your thoughts, feelings, and bodily sensations without being reactive or overwhelmed by what’s going on around you.
Think of it like this: our minds are often on autopilot, getting caught up in worries or lost in daydreams. Mindfulness is like a gentle nudge back to the present moment, allowing you to experience life more fully.
Some benefits of practicing mindfulness include:
Reduced stress and anxiety
Improved focus and concentration
Greater self-awareness and emotional regulation
Enhanced creativity and problem-solving skills
Increased feelings of well-being and happiness
Mindfulness can be practiced formally through meditation, but it can also be integrated into everyday activities.
Physical activity and mindful movement
Being physically active doesn’t have to mean going to the gym. It doesn’t even have to involve any kind of traditional ‘exercise’. Being physically active simply means incorporating movement into your daily routine. Key points when being physically active:
Focus on Enjoyment. Choose activities you find fun and engaging. Movement shouldn't feel like a chore.
Listen to your Body. Start slow and gradually increase intensity or duration as your fitness improves. Pay attention to your body's signals and take breaks when needed.
Make it a Habit. Aim to incorporate some form of physical activity into most days of the week.
Variety is Key. Try different activities to keep things interesting and target different muscle groups.
Remember, even small bursts of movement throughout the day can make a difference! By incorporating mindful movement into your daily routine, you can reap the benefits of being physically active without feeling confined to a gym or structured workout. This section comes from part three of the 'LIFE AFTER DIAGNOSIS: Insights into how to live your best life' series. Find more detailed information here on sleep, the important role of morning sunlight, including the impact of melatonin and cortisol. It also covers the consequences of vitamin D deficiency, physical activity, and the benefits of mindfulness and mindful movement. Includes references.
“By taking a holistic approach to your health, through a combination of healthy habits, emotional resilience, and a strong support system, you can navigate the challenges of your illness and thrive despite them. Remember, taking care of yourself is not a luxury, but rather the foundation for living well with a chronic condition. I encourage you to implement even one small change to your routine to make a start. You are not defined by your illness, but by your strength, resilience, and unwavering spirit." Michelle Chadwick, Founder/Executive Director; Hypersomnolence Australia and Creator and Organiser; Worldwide Idiopathic Hypersomnia Awareness Week.