New to this topic? This guide focuses on practical strategies to cope with hot weather. If you would like to understand why heat makes Long COVID symptoms worse, including the role of autonomic dysfunction, POTS, blood pooling and impaired thermoregulation, we recommend reading our companion article Why Heat Makes Long COVID So Much Worse: The Science Behind Heat Intolerance first.
Because most heatwave guides assume you can pop out and buy a portable air conditioner, nip to the shops for ice, and simply stay home when it is hot. They were not written for people managing medical appointments with six month waiting lists, journeys that cannot be avoided, or nights when a bedroom full of stored heat is the difference between a manageable day tomorrow and a crash.
This is that guide.
At home
Your house is not your enemy, but it will behave like one if you do not manage it from early morning.
Close curtains on every sun facing room before the heat builds, ideally by 8am. Open windows only on the shaded side where there is a through breeze. The goal is to keep indoor temperature below outdoor temperature during the day. Once the outdoor temperature drops below your indoor temperature in the evening, typically after 9pm in a UK summer, open everything and let it cross ventilate.
A fan circulating hot air is better than nothing. A bowl of ice in front of a fan is meaningfully better, though it lasts about twelve minutes before you need more ice, so plan accordingly. A fan pulling air from a cooler room, such as a north facing hallway, into a warmer room is more effective than one simply moving the same warm air around.
Cool your pulse points rather than trying to cool the whole room. Wrists, neck, inner elbows and backs of knees all have blood vessels close to the surface. A cold damp cloth on these cools blood going to the brain faster than lowering ambient temperature. Ice wrapped in a cloth on the back of the neck is uncomfortable for thirty seconds and then feels genuinely helpful.
Cold foot soaks use very little energy and lower whole body temperature more effectively than most people expect. Cold wet socks are undignified. They also work.
Eat small amounts more frequently. Large meals divert blood to the gut for digestion and raise core temperature slightly. In a system already struggling with blood distribution, this pushes things in exactly the wrong direction. Cold foods that do not require cooking also keep the kitchen cooler.
Medications and Medical Equipment During a Heatwave
Hot weather does not only affect people living with Long COVID. It can also affect the medicines and medical equipment they rely on every day.
Many medications should be stored below 25°C, while some require refrigeration. During prolonged heatwaves, indoor temperatures can easily exceed these recommendations, potentially affecting how certain medicines work. Always check the patient information leaflet or ask your pharmacist if you are unsure how your medication should be stored.
If you use medications for POTS, dysautonomia or Long COVID, such as fludrocortisone, midodrine, beta blockers or ivabradine, it is particularly important to continue taking them as prescribed unless your healthcare professional advises otherwise. Never stop medication simply because the weather is hot.
People using insulin, biological medicines or adrenaline auto-injectors should also be aware that excessive heat may reduce their effectiveness. Insulated medication bags or cool packs designed for medicines can help protect temperature-sensitive treatments when travelling.
If you rely on mobility equipment, wheelchairs, mobility scooters or battery-powered medical devices, remember that batteries may discharge more quickly in extreme heat. Planning ahead can help avoid unnecessary stress on already difficult days.
Caring for Pets During a Heatwave
For many people living with Long COVID, pets provide companionship, routine and emotional support. During a heatwave, however, looking after a pet can become physically demanding.
If possible, walk dogs early in the morning or later in the evening when temperatures are lower. Hot pavements can burn paws within minutes, and both animals and owners are at greater risk of heat exhaustion during the hottest part of the day.
Keep fresh water available at all times, provide cool shaded areas indoors, and avoid unnecessary physical activity during extreme heat. If walking your dog safely is not possible because of your own symptoms, asking a friend, family member or professional dog walker for temporary help is a practical solution rather than a failure.
Living with Long COVID often means adapting to changing circumstances. Looking after yourself during a heatwave is one of the best ways to continue looking after the people and animals who depend on you.
Sleeping
Sleeping in a heatwave when you already have disrupted sleep is its own particular misery. The goal is to reduce the heat stored in your bedroom during the day so there is less to fight at night.
Keep the bedroom curtained and closed all day. A cooling pillowcase, a gel pillow insert, or simply a pillowcase kept in the fridge for an hour before bed makes a real difference. This sounds like a joke. It is not a joke.
A cold hot water bottle is equally not a joke. Fill a regular hot water bottle with cold water, freeze it if you have freezer space. The rubber does not leak. Put it at the foot of the bed or against the backs of your knees.
Replace all bedding with a single breathable cotton sheet. The instinct to have something over you is partly about security rather than warmth and a light sheet satisfies this while adding almost no heat.
If you use cooling clothing or wearable cooling aids, wearing them for twenty minutes before lying down means your core temperature begins its descent before you get into bed rather than trying to drop once you are already there and frustrated.
Medical appointments you cannot cancel
This is where most practical guides stop being useful. You cannot simply reschedule the cardiology appointment you waited nine months for because the forecast is 34 degrees.
Call ahead and ask specifically. Many NHS clinics, hospitals and GP practices have provisions for patients with heat sensitivity or autonomic conditions that are not advertised anywhere publicly. Some can offer early morning slots before the building heats up. Some have cooler waiting areas. Some clinical coordinators will help you identify the coolest route through a building. You will not know any of this unless you ask, and asking is genuinely worth doing.
If you have any choice, time appointments for the morning. Even a 9am versus 2pm difference in appointment time can be the difference between a manageable experience and a crisis.
Bring a cooling kit and do not be embarrassed about it. A small battery fan, a damp cooling cloth in a sealed bag, a cold drink in an insulated bottle, and loose light clothing. You are managing a medical condition. This is equipment, not eccentricity.
For PIP or benefits assessments specifically: if heat is significantly worsening your symptoms on the day of the assessment, say so clearly and ask for it to be recorded in the notes. Heat sensitive symptom fluctuation is clinically recognised and is directly relevant to how variable and fluctuating conditions are assessed. Saying nothing means it is not documented.
Block time the day before and the day after any appointment. Heat plus travel plus clinical environment plus any waiting is a significant physiological load. A crash the next day after a hospital appointment in summer is not unusual and is not a sign you did anything wrong.
Transport
Public transport in a heatwave with dysautonomia is an experience you will remember. The goal is to reduce every controllable variable.
Travel outside peak hours. The difference in crowding between 8am and 10am can be the difference between finding a seat and standing in a packed carriage in 28 degree heat, which for someone with POTS is a medical situation rather than a mild inconvenience.
If you need a seat, get one. Ask clearly and directly. Most people will move for someone who asks. A sunflower lanyard or blue badge gives additional context if you have either, but a simple direct ask works for most people most of the time.
Carry significantly more fluid than you think you need. Electrolyte solutions rather than plain water, particularly if the journey is over thirty minutes. Heat accelerates dehydration faster than most people account for and dehydration worsens orthostatic intolerance rapidly.
For car journeys: ventilate the car fully before getting in if it has been in direct sun. Never sit in a parked car in summer heat.
The permission section
Sometimes the heatwave survival plan is: do nothing. Cancel the non essential thing. Order rather than cook. Lie on the floor because the floor is the coolest surface in the room and dignity is a concept that can wait until October.
Climate change added an average of 26 extra days of extreme heat globally last year. This is not a temporary situation between normal summers. Managing heat as an ongoing feature of life with Long COVID or chronic illness is legitimate and deserves to be taken seriously, including by the people around you who cannot quite understand why you are struggling when everyone else thinks it is lovely.
What Should Be in a Long COVID Heatwave Emergency Kit?
Preparing for a heatwave is not about expecting the worst. It is about reducing the amount of energy your body has to spend coping with heat before symptoms begin to spiral.
A small “heatwave emergency kit” can make a surprising difference, particularly if you are travelling, attending medical appointments or simply spending time away from home.
Consider including:
- Electrolyte sachets or oral rehydration solution to help replace both fluid and sodium lost through sweating.
- An insulated water bottle to keep drinks cool for longer and encourage regular hydration.
- A cooling towel or damp cloth stored in a sealed bag to cool your neck, wrists or face when symptoms begin.
- A small battery-powered fan, together with spare batteries or a rechargeable power bank.
- Instant cold packs or reusable gel ice packs if you expect to be away from home for several hours.
- Compression stockings or abdominal compression garments, if recommended by your healthcare professional, to reduce blood pooling while standing.
- A wide-brimmed hat, sunglasses and lightweight, breathable clothing to minimise direct heat exposure outdoors.
- Your regular medications, together with any medicines that require careful temperature storage if you are travelling.
- A charged mobile phone and portable power bank, particularly if you rely on health apps, emergency contacts or public transport.
- A simple symptom card or medical information, especially if you have POTS, dysautonomia or another condition that may not be immediately obvious to others.
The most important item, however, is not something you can pack.
It is permission to change your plans.
If the temperature is extreme, cancelling a non-essential outing, asking for help, leaving an event early or taking a rest break is not a sign of failure. Heat places additional physiological stress on an already overworked autonomic nervous system. Adjusting your plans is often one of the most effective ways of preventing a significant flare-up or post-exertional crash.
Your emergency kit is there to support your body—not to help you push beyond its limits.
When to seek urgent help
Heat exhaustion in chronic illness can arrive faster and with less warning than in healthy people.
Call 999 or go to A&E immediately for confusion or sudden disorientation, skin that is hot and dry rather than sweaty when you feel severely overheated, fainting or loss of consciousness, or vomiting alongside very rapid heart rate. These are signs of heat stroke rather than heat exhaustion and are a medical emergency.
Call 111 for symptoms that concern you but do not meet the above threshold: inability to cool down after resting in a cool space, significant worsening of usual symptoms, palpitations that will not settle after lying down.
Key Takeaways
- Plan ahead before temperatures rise by keeping your home cool early in the day.
- Stay hydrated with fluids and electrolytes rather than plain water alone if advised by your healthcare professional.
- Cool your body strategically using pulse points, cool foot soaks and breathable clothing.
- Avoid unnecessary physical exertion during the hottest hours of the day.
- Medical appointments and travel may require additional planning during a heatwave.
- Seek urgent medical help if symptoms suggest heat stroke rather than heat exhaustion.
Frequently asked questions
What is the single most effective thing to do in a heatwave with Long COVID? Start managing your home temperature from early morning rather than waiting until you feel overheated. Close curtains on sun facing rooms before 8am, cool your pulse points with damp cold cloths, and drink electrolyte fluid consistently through the morning before you feel thirsty.
Is it safe to exercise during a heatwave with POTS or dysautonomia? Heat and exercise combine their circulatory demands, which is a significant risk for people with orthostatic intolerance. Most POTS and dysautonomia guidance recommends avoiding upright exercise in heat entirely and, if movement is needed, keeping it recumbent, brief, and followed by horizontal rest.
Why does cooling the feet help so much? Feet have a large surface area of blood vessels close to the skin. Cooling them lowers blood temperature returning from the periphery to the core, reducing whole body temperature faster than cooling the ambient air around you.
How much water should I drink during a heatwave? More than you think, but not plain water alone. Electrolyte solutions or water with added sodium are significantly more effective for people with POTS and orthostatic intolerance because they support circulating blood volume rather than just replacing fluid. The kidneys excrete excess plain water quickly. Electrolyte fluid is retained longer and helps circulation more directly.
Can I ask my GP for anything that might help with heat intolerance? Yes. If you have confirmed POTS or dysautonomia, medications used to support blood volume and autonomic regulation, including fludrocortisone, midodrine, beta blockers or ivabradine depending on your subtype, may improve your overall heat tolerance by giving the autonomic system more to work with. This is a conversation worth having before the next heatwave rather than during it.
Should I tell people I live with how to recognise heat stroke? Yes, and this is genuinely important. Heat stroke progresses quickly and the person experiencing it is often the last to notice the confusion that marks its onset. Anyone who lives with or regularly sees you should know: confusion, hot dry skin, and very rapid heart rate that is not settling mean calling 999, not waiting to see if it improves.
This article is for general information and education. It does not replace personalised medical advice. If heat is consistently and significantly affecting your health, please discuss this with your GP or a clinician familiar with Long COVID or dysautonomia.
Sources Climate change, Long COVID and POTS, The Sick Times: https://thesicktimes.org/2024/08/12/climate-change-is-worsening-symptoms-of-long-covid-and-pots-heres-how-people-are-navigating-it/ ME Association heatwave guidance: https://meassociation.org.uk/medical-matters/items/how-to-cope-with-a-heatwave-if-you-have-me-cfs/ ME/CFS hot weather advice, Dr Alan Stewart: https://measussex.org.uk/advice-for-me-cfs-sufferers-in-hot-weather-dr-alan-stewart-2/
About Long Covid Journey
Long Covid Journey is an independent educational resource dedicated to helping people better understand Long COVID through evidence-informed articles, peer-reviewed research and lived experience. Our aim is to explain complex medical topics in clear, balanced language while recognising that Long COVID is a rapidly evolving field of research.
This article has been researched using current scientific literature alongside guidance from recognised clinical and patient organisations. Because knowledge continues to evolve, our content is regularly reviewed and updated as new evidence becomes available.
This guide focuses on practical strategies that may help people living with Long COVID, POTS, dysautonomia and related conditions manage heatwaves more safely. While these approaches are based on current evidence and clinical understanding, they should complement—not replace—individual advice from your healthcare professional.