A little disclaimer, I am not a doctor, I was diagnosed formally with PoTS 4 years ago though I have had symptoms since I was 18, following a Meningitis infection. For some people it will be short-term, post-infection or illness, during pregnancy, etc, or for others like me it will be a chronic long-term condition. Living with PoTS can be really daunting, what did my Cardiologist say – life altering but if managed, not life threatening. There is no magic cure but understanding your triggers and knowing things that help ease symptoms has given me some confidence back. As symptoms can fluctuate from one day to the next, it can make management a challenge. Pacing your energy is the most important step I have learned to manage the extreme fatigue…well, I am still learning. And educating yourself helps too, PoTs takes so much control from your body, so understanding the condition can helps you feel less powerless. This is a bit of a fact heavy post, but I have been asked to share more about my PoTS journey, diagnosis, what life looks like since, how it hit me emotionally…like a sledgehammer. So, bear with me, I am starting easy.
Below are some little puzzle pieces to help manage symptoms. I do it all daily not when symptomatic. *Laughs* Ok I have symptoms daily but what I mean is I don’t just use these when the flares are really bad, I manage myself to avoid those flares as much as I can.
Add Sodium.
If you have high blood pressure or any additional medical conditions like heart or kidney disease where an increase in sodium will negatively affect you, please talk to your GP. With PoTS you can feel lightheaded upon (and AFTER) standing, (or get full on syncope – points at myself) which can be in part, due to insufficient blood volume. Drinking more fluids will help, but the key to keeping the fluids in circulation is sodium. Adults are advised to drink 2-3 litres of fluid daily; I try and increase that, especially on bad symptom days, sipping cold water especially helps with dizziness. If you are feeling nauseous remember you can get liquids from ice lollies which are my go-to when GI symptoms are flaring as nausea and vomiting are common with PoTS. I add extra salt to my dinner and if I am feeling particularly woozy and sprinkle additional salt to a packet of crisps or on watermelon. It is not bucket loads – say 6-12g (a teaspoon a day). Given the high comorbidity of EDS & PoTS (I have both) be mindful that extra sodium can alter GI function, and trigger dyspepsia and reflux. You can simply up your intake of naturally salty foods – salted nuts, gherkins, miso soup, anchovies, gammon etc or…
Take Electrolytes.
Electrolytes can help maintain fluid balance in the body and they also contain minerals like Chloride, Potassium, Calcium, and Magnesium. Having adequate amounts of other trace minerals is essential for improving PoTS symptoms. An oral rehydration solution like Dioralyte (which I ply the kids with post sick bug) is slightly different than an electrolyte. I avoid high-sugar electrolyte drinks, they trigger palpitations. There are so many electrolytes on the market, I tend to prefer effervescent tablets that I can sip slowly in water or lime cordial. I have tried some of the high-end brands like Ancient & Brave, but to be honest you don’t need to pay a fortune, shop around, avoid ones with added colourings etc. If you want a natural option, you can try coconut water, or recommendations from other PoTSies are Liquid IV, Vittasium or Saltstick (I keep fast chews in my purse as you don’t need water to taken them if I feel giddy out and about). I also often wear travel sickness acupressure bands. For me, I try and drink a pint of electrolytes first thing in the morning before getting out of bed as this doesn’t seem to trigger any gastro issues.
Squeeeeeze.
Compression garments are suggested to help reduce PoTS symptoms. They are a relatively cheap item to buy, you can get plain ones on prescription, and it is worth a try to see if wearing will help you. Standing causes blood to move to the lower half of our bodies. Normally, bodies compensate for this change in position by balancing blood vessel constriction and heart rate to maintain adequate circulation, so you don’t pass out. Not in PoTS. I tend to mainly wear compression garments at times when I know I am going to be standing up i.e. if I have medical appointments. There are different styles i.e. compression leggings (Lululemon are comfy for wearing in the day), tights, over the knee socks and thigh high stockings. Research suggests socks and abdominal binders may be more effective when used together. They do seem to help with blood pooling in my feet, but I find wearing them uncomfortable for prolonged periods. Put them on at the start of the day before you get out of bed. Take them off before going to sleep. For PoTS, moderate (15-20 mmHg) to medium (20-30 mmHg) compression is often recommended. Proper sizing is important! I have space themed socks from Not Your Grandma’s…
Positioning.
Orthostatic intolerance is common in PoTS. Prolonged standing – especially standing still – almost never fails to trigger my symptoms. And to paint an honest picture, by prolonged I mean, for me – 10 minutes. I purchased a stick (Cool Crutches do comfortable options) and there are ones with a little stool too. I have been toying with the idea of getting a walking frame with a seat. Learning about counter maneuvers helped me – i.e. cross your legs whilst standing, rock up and down on your feet, clench your tummy muscles. Step from one foot to another. Basically fidget. I have also got more confident just sitting down even if in the post office queue when I feel those faint signs creeping in. Prolonged sitting can also cause symptoms in some people. Movement and stretching as well as sitting with legs crossed, recliners or leg elevation pillows to enhance blood flow all help. Mornings are challenging in that you have been laid down, so you need to raise yourself sitting slowly, give it 10 minutes (in that time carefully put on your compression socks, sip electrolytes, clench your calf muscles) and then stand slowly. I have an Oximeter that I put on my finger so I can see how big of a jump my bpm takes. Gives a bit of an indication how my days going to go! Something that makes a big difference to me is multiple memory foam pillows, almost sitting up and switching from side to back sleeping. Recommendations suggest raising the bed at the head, this is my alternative. A hard mattress and flat pillow and I get really tacky. Whether standing or sitting a surprising movement that really affects me now, is having my hands over my head. If I stand for 30 seconds raising my arms up and down even sitting my heart rate will easily hit 150 in a minute or two. When first diagnosed this wasn’t in a lot of the common information so I doubted it and tried to ignore symptoms. I guess the message is, recognise what triggers you, my experience has been on the severe side but PoTS is so varied in its symptoms you may not tick all the boxes, but that does not make your symptoms any less real, or the negative effect they have on your life. You may not blackout, you may have a singular symptom like exercise intolerance but not a bpm raise sitting to standing. I would encourage you keep a bit of a diary – what symptoms are you experiencing, when and how often.
Blood tests.
Now this is a personal one part of my self-care if you will. Being bedbound, persistent vomiting, unable to take in proper nutrients, unable to go outside will impact your body. Since getting PoTS my Iron, Ferritin, VitD, B12, etc have all have periods of being very low and I feel the effects of these in my symptoms, especially low Ferratin. You can ask your GP for a blood test say every 6 months to keep an eye on things. I take really high-quality supplements. For me, Ferrous Sulphate (what they give for low iron) made me so sick so instead take daily Spatone with a glass of Vitamin C to aid absorption. Or if you are low long-term ask for an iron infusion. Again, if tablets are hard to swallow, brands like Better You have a spray Vitamin D option. Having a long-term condition changes your approach to your own health. Rather than wait for GP appointments for blood tests there are reputable self-testing companies so for the last year I have used ForthwithLife (all of these mentions are not Ads by the way) to personalise blood tests which I pay for and view on an app which tracks any out of range results, they also offer Doctors comments and I pass them onto my GP.
Somatic Yoga and breathing.
This is not a,‘oooh have you tried Yoga?’ paragraph. I mean if you can, it’s a grand form of exercise, but the change in positioning means blackouts for me. You can stimulate the vagus nerve with stretching, breathing, massage, singing, humming and meditation. Somatic therapy may or may not be for you, but I would give anything a try. You are looking to calm your nervous system, your body’s stress response and improving autonomic function. Regular mindfulness and breathwork like box breathing takes 10 minutes out of your day. I have periods of Quadrigeminy – Premature Ventricular Contractions (my left ventricle beats out of time every 4th beat) and these get worse when stressed.
Think heat.
The autonomic nervous system does not work properly with individuals with PoTS and one of the bodily functions the ANS controls is temperature regulation. I swing between being overly hot and awfully cold. For ease I wear layers that can easily be added or removed. Heat especially flares my PoTs symptoms as it promotes vasodilation of blood vessels, meaning that you’re more susceptible to blood pooling because there’s not enough constriction to drive blood upward against gravity. With baths or showers, keep them lukewarm. Also, if you do have a shower, you can get a stools to sit, grab rails. Don’t lock the door. Give some time to rethink daily activities and how you can keep yourself safe. Summer means a huge rise in symptoms for me. Have bottles of water frozen in the fridge, use a cooling mat at night, carry face mist and a fan in your purse. I invested in single use travel cold packs which you snap and can hold against the back of your neck. Prepare for symptom flares and carry items that will help you manage them.
Vagal maneuvers.
I was taught these by paramedics (legends) to help slow tachycardia episodes when I couldn’t get my heart rate down. For me I have SVT’s where your heart stays in an overly fast rhythm for a prolonged period. Again, I will talk about speeds, arrhythmias and ectopic beats another time. I will add for safety if your heart is doing something unusual 999 it. I make this comment as someone who has a Loop recorder inserted in my chest so I know my heart issues and can most of the time safely manage them. For those who are unfamiliar a vagal maneuver is an action used to stimulate the parasympathetic nervous system by activating the vagus nerve which is the longest nerve of the autonomic nervous system. They are non-invasive procedures which can help bring down a heartrate. Easiest ones – deep breath, hold, bear down like pooping, hold for ten seconds and then slowly release the breath. For me triggering the Diving Reflex works a charm. It also means my other half gets to slap a freezing cold flannel in my face (go for 15/20 seconds). It helps on the back of my neck to. Or, hold your breath and submerge your face and nose into the water. Ambulance teams have also had me blow in a syringe and swing my legs up. Just in case you ever are asked to do this fun form of gymnastics.
PoTS symptoms and Eating.
Many PoTSies have an array of gastrointestinal symptoms, in my first flare I was sick daily and could eat very little because of gut motility issues. It’s important to try and get nutrition into your body and I found Huel shakes good. A note on meds (again I will do a full post on mine) if you take Omeprazole for heartburn long-term it may affect Magnesium levels. Also, with antiemetics personally, I find Ondansetron the most efficient with minimal side effects. After larger meals I can get taccy and lightheaded. This may be because when we eat blood is diverted to the gut for digestion and this may lead to a small drop in blood pressure. To avoid this try eating small meals and snacks through the day. Some people with PoTS also feel that their symptoms are worse following a high carbohydrate meal, or eating Gluten. Meals with more protein with smaller amounts of wholegrain or low GI carbohydrates such as sweet potato may be a better choice. Some recommend a low FODMAP diet. I really rate probiotics. There is a link with PoTS and MCAS so allergies/intolerances are increased. If you suspect food is causing allergy or intolerance symptoms keep a detailed food and symptom diary. With daily fatigue, pre-chopped frozen veg, pre-grated cheese, frozen meals shopping and meal delivery services all help minimise exertion. There are also so many adaptive products and aids that can help with food preparation. Avoid alcohol and caffeine like the plague. Sugar triggers me which is a shame as I love a biscuit. I have a few cook books on anti-inflammatory diets which seems to have positive results.
Movement.
Hear me out. Movement, NOT Exercise. Except of course, if it’s in your ability range. For me, who has minimal exercise tolerance, walking up and down the stairs and daily living activities are only just about manageable. Are exhausting. But that is movement. Gently stretch if you can manage. April to October, seven or so horrendous months where I was bedbound in my worst PoTS flare the cycle of being sedentary (any standing was causing me to faint multiple times daily) also meant my body was becoming deconditioned and the variations in my heart rate were greater. I started with a walk around the room, make it two, then downstairs, then where I could be outside for 10 minutes. Do what you can. Cardiology said to focus on exercises if possible that strengthen legs so that they have the cardiovascular strength to circulate blood back to the heart more efficiently on standing. A recumbent biking or recumbent stepper are recommended. Build things slowly. You know your body. PoTS UK is a fab website that includes safe exercises.
Tracking you Triggers.
It takes time but start writing down instances when you are symptomatic. This can be done in a notepad or using a symptom-tracking smartphone app. There may be patterns or may not. Then you can avoid identified triggers, such as skipping meals; insufficient sleep; alcoholic beverages; be mindful in phases of your menstrual cycle etc. As an added note, sometimes symptoms will flare unexpectedly, you can be doing all the right things and still have a bad day. One day won’t look like the next. You do the best you can.
Hopefully this helps and if you want to add any and have advice, please leave a comment! Talking with the PoTS community, sharing experiences, I called the British Heart Foundation free advice nurses line when I was first diagnosed for a chat…helps you feel less isolated.
