What do orthostatic hypotension/intolerance and disaster preparedness have in common?
A lot...
Orthostatic intolerance includes conditions such as postural orthostatic tachycardia syndrome (POTS), which refers to an increase in heart rate when standing up, and orthostatic hypotension (a drop in blood pressure when standing up). Even I myself suffer from pronounced orthostatic hypotension (OHT) due to my CFS, reactive EBV viruses, and MCS. With at least 400 million long COVID and ME/CFS sufferers worldwide, an increase in Parkinson's and diabetes diseases, a rise in the age pyramid, and much more, this topic should hold a very important place in disaster management.
Why
Due to long COVID and ME/CFS, it has become a global problem affecting many people. A study by the Kennedy Krieger Institute (USA) on September 16, 2024, showed that the majority of children and adolescents diagnosed with long COVID are also likely to suffer from orthostatic intolerance (OI). Considering the many other target and age groups, i.e., with increasing age, ME/CFS sufferers, type 1 diabetes, type 2 diabetes, and Parkinson's disease, where burdensome non-motor symptoms such as OHT also occur. Orthostatic hypotension is quite a widespread condition and represents an independent risk factor for falls and mortality. There is a very interesting study "Misconceptions and Facts About Orthostatic Hypotension". In this study, US cardiologists clearly highlighted in a review that OHT is neither rare nor primarily treated pharmacologically. Unfortunately, I have already experienced some falls and injuries due to my pronounced orthostatic hypotension (dizziness, severe cardiovascular problems, even fainting...). Until 2010, I had a wonderful accompanying internist who was also a cardiologist; regular Schellong tests, tilt table tests, ECG, breathing exercises, correct standing up, regular monitoring of my always reactive EBV, control of vitamin and mineral levels, and relevant lab values (blood, urine, stool) were part of our lived program together on an equal footing. He was a doctor who already tried to implement a holistic approach even back then. He found that gluten also had to play a significant role in this, as did chemicals and environmental influences. I began avoiding gluten as early as 2009, although not completely at that time (today I know he already had the right "instinct" back then, as several studies have found an increased prevalence of celiac disease and gluten intolerance in POTS patients). He went into his well-deserved retirement, and I had to develop "survival strategies" without him for all these years.
An incredible number of people are affected by this problematic issue (sudden onset of dizziness and fainting when standing up, sudden onset of extreme fatigue, extreme increase in heart rate when getting up, feeling weak and unable to move, uncontrollable sweating, feeling of nausea or vomiting, collapse due to drop in blood pressure, instability and loss of balance, poor vision, double vision and blurred vision, concentration difficulties, hearing loss, wobbling legs, head or neck pain, slowed thinking, and much more). Long COVID and ME/CFS clearly show us how dramatically the extent of affected individuals has increased. None of us should underestimate this in the context of disaster preparedness and disaster management, and each of us must and should take preventive action ourselves. We need to practice, train, and pay attention to many things; unfortunately, this is how it is, and we must strengthen our resilience (even for disaster situations). We must be aware of the dangers that may "lurk" for us and be as prepared as possible.
We should truly become aware of the dangers, whether in a blackout, natural disasters, or other emergencies, and recognize how important it is to strengthen our resilience and give preventive preparations a much higher priority in the NOW and HERE. We cannot solely rely on the availability of sufficient emergency responders in case of an emergency and that they will also be prepared and equipped to help with issues like orthostatic hypotension (OHT). We need to take some proactive steps ourselves to minimize risks.
It is important to me to make a few situations and factors more visible and tangible that can significantly worsen the situation for people with OHT in a disaster scenario.
- Traffic obstructions can cause affected individuals to remain in a sitting or lying position for longer, leading to a drop in blood pressure
- Accidents can cause additional stress and anxiety, raising blood pressure and worsening OHT symptoms
- Changes or abolition of traffic rules (in the event of a disaster) can lead to confusion and stress, affecting blood pressure. Missing or unclear traffic signals can also cause confusion and affect blood pressure.
- High traffic density can make movement difficult and lead to longer wait times, worsening OHT symptoms
- Speed limits and road closures can hinder movement and lead to stress
- Hazardous road conditions can cause additional stress and worsen OHT symptoms
- Controls and barriers can hinder movement and cause stress
- Insufficient availability of transportation can make evacuation difficult and cause stress. A lack of coordination between different modes of transport can cause delays and affect blood pressure.
- Destroyed or damaged roads, tunnels, or bridges can complicate movement and cause stress
- Floods and landslides can make roads and bridges impassable and cause stress
- Destroyed power and water lines can impair infrastructure and cause stress, or destroyed buildings can be obstacles, and destroyed fences can make it difficult to access safe areas and also cause stress.
- Destroyed telecommunications infrastructure can make communication difficult and cause stress.
- Destroyed public facilities such as hospitals and schools can make evacuation difficult and cause stress
- Poor weather conditions can make life even harder, i.e., heavy rain can make roads and bridges impassable, strong winds can pose additional dangers, poorly lit streets can impair visibility, cold can cause additional strains, muddy or uneven terrain can hinder movement, fog or dust can impair visibility and cause stress.
This is just a small selection that can put us as those affected by OHT in serious distress.
Possible scenarios and problems that affected individuals could face (just a selection):
1. Sudden movements, such as a sudden need to stand up quickly. Persons who suddenly rise from a sitting or lying position may experience a drop in blood pressure, leading to dizziness, fainting, or even falls. Rapid movements or carrying heavy objects can further destabilize blood pressure and lead to severe symptoms.
2. Stress and anxiety are two other critical factors, as disasters can trigger strong emotional reactions that increase blood pressure and worsen OHT symptoms. Panic reactions can lead to uncontrolled movements and sudden blood pressure changes.
3. Unfamiliar and new environments can cause additional stress and exacerbate OHT symptoms. Likewise, insufficient resources, such as a lack of water, food, or appropriate rest areas, can worsen symptoms.
4. Lack of preparation of emergency medications and medication management, meaning in a disaster, it can be difficult to take regular medications, leading to uncontrolled blood pressure. Medications can be lost or inaccessible, worsening symptoms.
5. Insufficient support, meaning without adequate support and guidance, affected individuals may find it difficult to move slowly and controlled. In a chaotic (crisis) situation, there may be a lack of calm areas where affected individuals can lie down and stabilize.
Conclusion: We cannot simply rely on rescue workers being specialized and trained in dealing with these symptoms, on sufficient awareness and sensitivity in the population to recognize our symptoms and help us manage them (because that is not the case). We cannot assume that there are individual emergency plans with specific measures to manage OHT, that it is always and everywhere ensured that there will be water, light snacks, and rest areas, and that the evacuation routes will fully and comprehensively consider our specific situation. Here too, we would be under an illusion.
So, what can we do ourselves?
A LOT!
Reduction of individual risk factors, preventive measures, and lifestyle changes.
1. Healthy Nutrition: Focus on low-glycemic foods to control blood sugar fluctuations and avoid insulin resistance. Maintain a nutrient-rich, energy-rich, and varied diet. Whenever possible, opt for a gluten-free or low-gluten diet. Avoid industrially processed foods (ready-made products) and flavor enhancers, as these often contain a high amount of glutamate. Also, monitor your food intake; it's better to have regular smaller meals rather than one large meal, which may cause postprandial hypotension (a drop in blood pressure after eating). If possible, create individual and tailored nutrition plans (whether based on genetic analyses, personal health data, intolerances, and allergies), as these can be crucial in the context of insulin intolerance and resistance, as well as other metabolic disorders. Avoid quinine (quinine-containing beverages), as it can enhance the effects of heart medications (digitalis preparations) and muscle relaxants, as well as blood thinners. For quinine, various interactions and contraindications are described, meaning the simultaneous intake of, for instance, antiarrhythmics, (some) antidepressants, antipsychotics/neuroleptics, antibiotics, certain antihistamines, and strong painkillers from the opioid group should be avoided. Likewise, the simultaneous intake of magnesium- or aluminum-containing agents against stomach acidity.
2. Insufficient fluid intake: Make sure to drink enough water throughout the day, as insufficient hydration, i.e., less than 1.5 liters per day, can reduce blood volume and severely impair your circulatory function.
3. Practice mindful and slow standing up, i.e., regular exercises, such as strengthening the lower body muscles, help with dizziness after standing up. Try activating your thigh muscles by repeatedly lifting your knees before SLOWLY standing up. There are several methods; find the one that is most comfortable for you, but always practice mindful and slow standing up, otherwise, your blood vessels may dilate too quickly, causing a rapid drop in blood pressure—something we as affected individuals know all too well. Light exercises to promote vascular regulation and muscle activity, especially in the lower extremities, are particularly recommended. I usually drink about 250 ml of water within 3 to 5 minutes immediately after waking up (it always acts as a little "miracle cure" for morning dizziness when standing up).
4. Consider your altered cortisol levels. Many of us have a significantly elevated cortisol level in the morning because our body is massively stressed by chronic burdens (hypothalamus-pituitary-adrenal axis), e.g., by reactive viruses like EBV, and this imbalance can then, of course, lead to symptoms of exhaustion and cardiovascular problems.
5. Stress management is particularly important for us, i.e., practice your morning mindfulness (avoid strenuous activities in the morning), plan your lunch break carefully (maybe with a power nap or a relaxation exercise), and prepare important things, e.g., laying out your clothes or documents in a relaxed manner in the evening to avoid stress in the morning. Try to start your day with mindfulness exercises (meditation) or even 10 minutes of deep and relaxed abdominal breathing to lower your cortisol level a bit. I find it worthwhile to set my alarm a little earlier and start the day this way.
6. Regular practice of emergency breathing exercises such as coachman breathing, goalkeeper breathing, or lip brake breathing should not be neglected - you never know when you might urgently need it.
7. Elevating the legs to prevent acute drops in blood pressure as a circulatory support measure is something you should always keep in mind.
8. Physical activity is very important for us, as we need to actively support our neurotransmitters: Regular walks in nature, brisk walking, swimming, walking, yoga, mindfulness exercises, progressive muscle relaxation, and of course, anything involving creativity (whether it be music, painting, or writing), all naturally stimulate our dopamine release. Don't forget that chronic lack of exercise not only weakens cardiovascular fitness but also reduces venous return, which in turn promotes orthostatic hypotension. We need to be proactive to truly prevent it, as untrained individuals can experience a temporary drop in blood pressure due to abrupt physical stress (disaster scenario), and the consequences are clear.
9. Regular, mindful, and slow stair climbing (I personally struggle with this, i.e., with palpitations, breathing problems, and dizziness, but I persist with moderate and small exercises to strengthen my leg muscles, as it also promotes venous return and reduces the risk of my orthostatic hypotension from becoming more severe. I combine this with specific breathing techniques and am mindful of the current weather conditions, as this factor also has a significant impact. On good days, and in high-pressure weather conditions, I always practice diligently. Every small step helps us progress ...
10. Pay attention to your micronutrients/vitamins and ensure that you do not have deficiencies in vitamin D3, vitamin B12, folic acid, iron, and magnesium. Many of us have too low levels of vitamin D, iron, and folic acid, which can be quite problematic, as anemia (blood deficiency) and impaired nerve function can contribute to hypotension. Please have this clarified by your doctor through laboratory tests. Also, be sure to monitor your vitamin D levels, as a deficiency can further promote low blood pressure. BUT always be aware that critical overdoses (intoxication) pose health risks. If you frequently have calf cramps, first check for a magnesium deficiency before supplementing with high doses of magnesium. Low levels can be associated with an increased risk of heart arrhythmias, but excessively high levels can also be critical.
11. Reduce (as much as possible) environmental toxins and stabilize your gut microbiome. Our gut microbiome is the key to so much, including reducing our orthostatic hypotension symptoms. I embarked on this path some time ago, and it has truly paid off; I feel significant improvements in my symptoms.
12. Pay attention to your sleep and sleep hygiene, as lack of sleep can lead to blood pressure dysregulation and further exacerbate hypotension symptoms. Sleeping in a slightly elevated position may also help reduce nighttime hypotension. Just give it a try.
13. Avoid prolonged standing, as it can exacerbate orthostatic hypotension (OH) through venous blood pooling and reduced return capacity.
14. Also consider that excessive alcohol consumption can lead to vasodilation, i.e., expansion of blood vessels and a temporary drop in blood pressure.
15. Avoid drugs: Also note that the use of opioids, cannabis, and other sedatives can lead to temporary vasodilation, i.e., expansion of blood vessels and hypotension.
16. Benzodiazepines and barbiturates increase the tendency towards hypotension.
17. Take regular contrast showers, as alternating hot and cold baths promote vascular regulation and increase vascular tone.
18. Wear compression stockings on long car journeys, flights, or when standing for extended periods, as they support venous return and help avoid circulatory problems. They may not be particularly "sexy," but in these moments, we should prioritize utility over "beauty." Everything in its time...
19. Regularly monitor your blood pressure, especially in strenuous and stressful situations. I also recommend carrying a pulse oximeter in your emergency kit; it has often helped me better stay aware of critical moments.
20. I always carry enough water and dextrose in my handbag or backpack. If you ever urgently need to access an electrolyte solution due to diarrhea, you can also make it yourself. You only need 4 ingredients: 4 teaspoons of household sugar, 1 liter of mineral or filtered water, ¾ teaspoon of table salt, and, depending on your tolerance, some orange juice (1 cup) or two bananas that can be eaten with it. Since neither orange juice nor bananas are suitable for me in terms of tolerance, I use some buffered vitamin C and have also had success with it.
21. I love my barometer in the living room, as it has taught me early on to keep a frequent eye on it. Sudden weather changes can be very problematic for us. I indeed plan specific activities based on the prevailing air pressure and weather conditions to avoid unnecessary risks, and it truly works; since then, I haven't experienced any falls or unintended injuries.
22. It may sound "strange," but even a toilet visit can worsen our orthostatic hypotension. Elevating the legs slightly with the help of a toilet stool during a "bigger business" works wonders.
23. Avoid prolonged stays in places with high ambient temperature, such as saunas or hot baths.
24. Awareness and Technology: Be open about this topic, as only then can we sensitize our environment (whether it's family, friends, neighbors, or colleagues) to this issue, and in case of need, we can be adequately and supportively helped if we can't manage on our own. This also includes ensuring that emergency contacts are reachable in the event of a disaster and can support affected individuals. Raising general awareness, i.e., sensitizing the population to the risks of OHT and the necessity of slow movement and rest. Regular training for affected individuals and their families to help them recognize and manage their symptoms in a timely manner; without sufficient support and guidance, affected individuals may have difficulty moving slowly and controlled in the event of a disaster. Specialized training for rescue workers on topics such as long COVID / ME/CFS, orthostatic hypotension, and others, to support affected individuals and help them move slowly and controlled (including identifying the safest evacuation routes, e.g., by placing colored markings on the streets to clearly designate evacuation routes, or by setting up signs along the routes providing instructions and information for evacuation to alleviate additional stress from affected target groups. Along evacuation routes, wheelchairs and stretchers could be distributed to support individuals who cannot move on their own. Development of a portable health bracelet or glasses that continuously monitor blood pressure and heart rate. Equipping specialized rescue vehicles with emergency generators and medical devices for the treatment of OI and hypotension. Utilizing VR technology to train disaster management teams and affected individuals in realistic scenarios, i.e., simulations of blackouts or other disasters to practice the correct measures and improve response times. Training volunteers (Community Emergency Response Teams (CERTs)), who become first responders in disaster situations. CERTs could then be specifically trained to assist individuals with OI and hypotension to provide immediate aid.
25. And of course, very importantly, please visit the "scenario planning" sections because good prevention and resilience are crucial for us to master crisis and emergency situations well and safely.