Receiving a Diagnosis

Why is it so difficult to receive a diagnosis? What should you expect from doctors when inquiring about this condition? 

Receiving a POTS diagnosis is not an easy feat for most. You may be wondering how I’ve managed to turn the topic of simply receiving a diagnosis into an entire blog post. When you go to the doctor with concerns about your body and a set of symptoms, you go in with the notion that the doctor will assess you thoroughly, diagnose you, and provide the best treatment possible for you at that moment in time. If it is a more complex issue that can’t be “seen” by the doctor and the tools they have on hand, you expect them to send you for blood testing or some type of screening as soon as you have available. It is expected the doctor would do their best to offer any temporary relief whether through medications in the office or suggestions for the patient to undertake on their own in the meantime. If that is still not possible, one would expect to at least come out of their appointment with some helpful information regarding what is or may be wrong with them, along with a plan in place for the next steps they can take to get to the root of the issue. One expects these things when they see a professional healthcare provider, and yet, as it turns out with chronic illness, many doctors fall short of adhering to these expectations. 

As a disclaimer, of course, this is not the case with all doctors and it should be noted that some of the areas of care where doctors fall short result from a lack of research and education, which is not their fault. Chronic illness as a whole is an epidemic and is on the rise in younger seemingly healthy populations. According to the CDC, in the United States, almost half (42%) of Americans have multiple chronic conditions (2 or more) and disparities are seen in women and people of color. It is unbelievable that Americans are diagnosed with chronic illness at such a rapid rate and yet the rate of research for these conditions is slim comparatively. Shockingly, many chronic conditions are not even taught in medical schools. A system where there are many patients with detrimental health conditions and doctors with the slightest idea of how to treat them, or even point them in the right direction, is undeniably flawed.

It should be noted, however, that the inability of some doctors to adhere to the indisputable expectations of their patients is entirely their fault. Expectations such as being listened to and being believed by one’s doctor are routinely disregarded. Chronically ill patients see doctors who gaslight them as the doctors are embarrassed by their lack of knowledge and rather than admitting it, they downplay the severity of their patient’s condition and make them believe they are oversensitive, are experiencing health anxiety, or that their symptoms are entirely psychosomatic. This is especially so with neurological conditions that lack visibility. These conditions may worsen with psychological symptoms of anxiety and depression which are likely to occur because of how scary and taxing the symptoms are. Anxiety and depression may also be symptoms of the condition itself. The mix of anxiety and neurological symptoms tends to snowball: one is anxious due to external factors and as a result, their symptoms become worse. When their symptoms are worse, they become anxious about what is happening to them and the cycle continues. The patient may even convince themselves the doctors were right and that it is “just anxiety”.

With this knowledge, you can see why many chronically ill people find it so hard to receive a diagnosis. A chronic condition like POTS is not going to come across through a blood test or any imaging. Imaging and blood tests may help rule out comorbid conditions or issues influencing the POTS but not indicate the POTS itself. It is also dynamic and is a spectrum. The condition can be debilitating at certain times in one’s life or practically dormant and can even vary each day. It’s important to inform your doctor of the nature of POTS. Doctors who are familiar with POTS may have preconceived notions about it based on others they have seen. This is especially so in those who do not specialize in autonomic disorders. They may say you don’t have it because you don’t faint. They may say you don’t have it because your blood pressure is not dropping or it must be something else because increasing salt and water is not helping. These are generalizations seen in some patients but certainly not all.

Suspect you Have POTS? Here are The Potential Signs and Symptoms 

Because POTS is a form of dysautonomia, the symptoms may vary considerably. With POTS you may have many different neurological symptoms as well but to have POTS you must have tachycardia when standing. The current criteria for diagnosis is an increase of 30 bpm or a heart rate of over 120 within the first 10 minutes of standing. A change in blood pressure may also occur with standing; it may spike considerably or drop considerably, however, blood pressure changes are NOT part of the diagnostic criteria. As I have mentioned previously, I typically do not face changes in blood pressure upon standing. Typically people with POTS experience lots of different symptoms overall and may experience many all at once when having episodes. You may experience some symptoms more often than others and the amount, type, and occurrence of symptoms may change over time. With POTS you may have fatigue and postural tachycardia that lasts the entire day and on top of that may also experience quick episodes of intense symptoms and more severe tachycardia that may be accompanied by presyncope or actual passing out. 

Regarding actually passing out, I am not as familiar because I have never fully lost consciousness, the closest I have been was losing my vision and blacking out while falling to the ground, but I was conscious seconds after I hit the ground. I have, however, researched it and heard the stories of others who do. This symptom can be very debilitating in itself as many are warned they are going to faint only a few seconds before they do. Some patients must always have someone with them if they are out in public or need a service animal to protect them. Some episodes of passing out may be very drawn out with lots of presyncope before actually losing consciousness. Others may be rapid and may occur the second someone with POTS stands up. Some faint many times daily and some faint every few months it just depends on the severity and how bad of a flare-up the person is in. A less common symptom some with POTS experience which happens during a loss of consciousness is convulsing or even non- epileptic seizing. It seems to occur due to the lack of blood flow to the brain.

Common symptoms

• Tachycardia (not just when standing but at seemingly random moments as well)
• Chest pain and or tightness that may spread into the left arm and jaw/neck
• Heart palpitations (feels like your heart is skipping a beat or has an extra beat; can take your breath away for a moment; palpitations may be the feeling of benign PVC’s (post ventricular contractions) or PAC’s (post atrial contractions)) 
• Headaches and or coat hanger pain in the upper back, shoulders, and neck(typically resulting from lack of blood flow in the head)
• Presyncope (feeling that you are going to faint (you may be light-headed, have changes in vision, weakness, numbness, difficulty speaking, etc.) or actual syncope/ losing consciousness
• Brain fog (feeling out of it, forgetfulness, confusion)
• Visible blood pooling in limbs (may cause pressure and limbs may look discolored with veins popping)
• Fatigue 
• Adrenaline rushes (feels like a sudden rush of panic without any mental distress; extreme tachycardia despite position, shaking, nausea, and a feeling of electricity coursing through you-essentially the feeling you get when your fight or flight kicks in when something traumatic or scary is happening) 
• Temperature issues (Difficulty regulating temperature and more sensitivity to extreme temperatures especially heat that worsens other POTS symptoms)
• Shortness of breath 

Less common symptoms

A few other less common symptoms that I have researched or have experienced myself are sudden difficulty swallowing that only lasts a few seconds (not when eating), facial flushing (specifically on one side of the face as well), change in pupil size (I’ve noticed a blown pupil on only one eye), odd nerve sensations or pains (zapping feeling that seems to travel through parts of your body or random pinching pains in all different spots), bradycardia (low heart rate that may alternate with tachycardia as your nervous system attempts to compensate for the low heart rate), and personally I have noticed I get a tingly shivering sensation on one side of my head/face at times. Very odd I know. With POTS being a dysfunction of your autonomic nervous system, many odd neurological symptoms can occur and from what I have seen and experienced can be very scary even leading to some health anxiety as you are hyper-aware of all sensations. It is important, though, to rule out other conditions if you randomly develop a symptom that is very prominent and does not seem to occur alongside other POTS symptoms simultaneously. To go on a bit of a tangent, health anxiety is something I plan to discuss in future posts for sure. Specifically, health anxiety resulting from the time in which a chronically ill person is experiencing emergency-like symptoms and has yet to be diagnosed with anything. One can still experience health anxiety following their diagnosis as the mere feeling of the symptoms induces that initial worry and panic and a chronically ill person may still be worried that they haven’t found everything that could be potentially wrong with them. I know this has been the case with myself. 

How can I Measure and Track my Symptoms? 

With a copious amount of symptoms, it is important to organize what you feel and to track what seems to trigger certain things and even the times they happen. Now, a little PSA when it comes to symptom tracking is that you do not need to be extremely meticulous with things like times, durations, and heart rate and blood pressure readings. I, and many others I have heard from, have gone down rabbit holes of symptom tracking that perpetuate worry and health anxiety which alone can worsen one’s heart rate and blood pressure. It is good to get an idea of your heart rate and blood pressure and to write new symptoms down but do not obsess over every detail regarding your symptoms. Chances are, your symptoms will occur very randomly, aside from when you change postures of course, and sometimes there is no “reason” they are occurring other than the fact that your nervous system is “confused” if you will, and is sending the wrong signals.

Symptom tracking gadgets

• Heart rate tracker (exercise watch or pulse oximeter; the health app on an iPhone allows you to examine the heart rate data you collect with your watch to look for trends)
• Blood pressure machine ( I use the Omron 5 Series Wireless Upper Arm Blood Pressure Monitor)
• Symptom logging app (The Bearable app is recommended across the chronically ill community as it was created by someone with multiple chronic conditions. Personally, I have only used the Symple app. It is good for just the basics. Logging symptom types and frequencies, setting reminders, taking photos of visible symptoms, etc. You can keep it even simpler and just use a note-taking app on your laptop or phone. Just have something preferably digital that you can continue adding to and can share quickly at a doctor’s appointment)

Who can diagnose me and how ? 

Deciphering which doctor to see for a diagnosis

A Cardiologist or neurologist who has a basic understanding of what POTS is and the type of tests used to diagnose it can likely provide a diagnosis. When it comes to which is better, the cardiologist or neurologist, the short answer would be neurologist, because POTS is a neurological disorder. However, because the major symptoms associated with POTS are cardiac-related, the cardiologist may have more familiarity with diagnosing the condition. When it comes to treating POTS following your diagnosis it may be better to find a neurologist who is familiar with the condition or even specializes in autonomic dysfunction. Dysautonomia International provides a list of autonomic specialists in all US states for reference. A specialist in autonomic dysfunction is difficult to come by, however. Despite this, it is possible to be treated sufficiently by a cardiologist or neurologist who is familiar with the medications being used to treat the cardiac symptoms of POTS as well as the neurological symptoms, it is just a matter of trial and error with the treatment as well as even the doctor. If you feel the treatment they have tried with you is not sufficient, while it is unfortunate, you may need to do research and continue to offer different ideas to your doctor. If you feel you aren’t being listened to and or require special testing that they can’t or will not provide then it may be time to look for a new doctor. 

Testing used for diagnosing

To officially be diagnosed, a doctor must record your heart rate while changing positions either by doing bedside orthostatics or a tilt table test. If you are already noticing that significant change in bpm when standing whether it’s by using an exercise watch or pulse oximeter at home, you very likely only need to have your doctor perform bedside orthostatics. They will have you lie down and record your heart rate and do the same when you sit up and then when you stand up. With POTS if you have an increase of 30 bpm upon standing you will very likely have an increase with sitting upright as well. The diagnosis becomes difficult if your POTS isn’t as severe in general or if you are at a point of lesser severity in your journey. Some may just have other symptoms related to dysautonomia and may not yet have significant tachycardia related to position changes. Some may have the tachycardia issues but have not yet developed it with standing and it may be infrequent as their dysautonomia hasn’t manifested as POTS yet.  For instance, I have had what I believe to be symptoms of dysautonomia since middle school. I mainly had pre-syncope that would be very far and few between and then random bouts of symptoms such as shakiness, tingling in hands and feet, weakness, fatigue, vision changes, nausea, and cold sweats. Early on I never dealt with an increase in heart rate with these symptoms, at least nothing significant. However, in high school when I would have these episodes, I started noticing a spike in heart rate, but it was not related to posture and was short-lasting and would not happen again for months. With cases like this, it is hard to even recognize dysautonomia yourself if you only have a select few symptoms that don’t match up with anything specifically. Many of the symptoms I dealt with early on I thought to be blood sugar issues or even the result of stomach issues I had because they seemed to always be triggered when my stomach hurt. I was told by doctors back then that my blood tests were normal and I even saw a cardiologist after the tachycardia started appearing, but of course, everything was normal so my primary told me that there was no need to test anything else and that it was likely related to my anxiety. I always knew it was something separate though even when the symptoms were minimal. You indeed know your own body more than anyone else.

Treatments Alongside Medication

Heart/blood pressure medications can be very helpful especially at the beginning of your POTS journey as you may be significantly disabled by the extreme tachycardia accompanying your every move. Treating your POTS via exercise and increased water/ salt intake may be to no avail if you aren’t medicated. Many can’t even fathom exercise when in the brunt of their symptoms and it may make things worse to simply jump into any kind of exercise with severe symptoms. However, once you are medicated, you will likely need to pursue lifestyle changes that will help to heal your nervous system. Medication is but a small piece of the puzzle, at least it is for me, and this is typical with many other chronic illnesses.

Seating

When you are first diagnosed with POTS you will need to accommodate yourself and may need others to accommodate you. You will need to have a place to sit and lie down even in public. You may feel the need to sit down or lie down constantly at first and you will need to allow yourself to do so even if it feels awkward to do so in public. If you push yourself too much, especially in the beginning when you are just getting to understand your limits, you may pass out or trigger an episode which may have lasting effects for the rest of your day. It is difficult to understand your limits when things first begin, especially if your POTS develops very suddenly and severely. You may have to spend most of your time in bed during the worst of it, however, it is important to keep a positive outlook for the future as this will only be temporary, and you do not want to sit with spiraling thoughts attempting to write your future when it is impossible to do so. If you are essentially bed-bound, it is important to find someone who can assist you to make sure that you are receiving the care you need so you do not make yourself even sicker.

Nutrition

You will want to make sure that you are eating as normally as possible, however, this may look a bit different if someone else is cooking for you. When trying new medications and being hit with many new symptoms, some of them affecting your stomach, your appetite may be diminished. You may also notice that eating causes your heart rate to spike and that you feel very fatigued during and after eating. This is typical when your POTS symptoms are at their worst so you may need to temporarily change the amount and type of food you are eating. From what I have gathered from others and through research, eating smaller meals more frequently can be helpful, and eating higher amounts of protein and less carbs may help reduce the fatigue and high heart rate associated with eating. There is, of course, science to back this up. When you eat, blood rushes to your stomach and away from your heart and brain as you begin to digest the food, those with POTS, already have issues returning blood back to their hearts and brains and thus the blood may start to pool in excess in the stomach making one symptomatic. On a personal level, I think that it’s hard to make this change when things are at their worst initially so you may just need to worry about eating enough, which may look different depending on what you have an appetite for and what doesn’t make you nauseous. In my opinion, starting a new diet that is distinctly different from what you are used to may not be a good idea if you are freshly in the process of changing your lifestyle and experiencing rapid changes within your body. It’s best to do what feels right for your body and down the road making diet changes may very well be helpful, but it isn’t a necessity or even very helpful for everyone in different stages of their journey. I’d like to write more about the importance of nutrition and a balanced diet with POTS in future posts, so be on the lookout if you are interested. With any chronic illness, getting the right nutrients and maintaining a healthy gut are very important as your gut is largely connected to all the systems in your body.

Accommodations in the workplace/school

If you can continue working or going to school, you may need accommodations. I am not familiar with the logistics of receiving accommodations in the workplace as I stopped working since I was diagnosed with POTS. This may involve getting approved for disability and may be necessary for some. Having access to a seat or even a spot to lie down often throughout the day may be necessary and you can discuss the importance of it with teachers, coworkers/management and they will hopefully accommodate you. You will need to make it clear to them that even though your illness is essentially invisible, it can become debilitating if you aren’t provided with the right accommodations. If you are in college like me, you can work with your disability coordinator at your school and receive a 504 plan which can include all kinds of accommodations. Accommodating seating, however, should not require applying for disability or a 504 plan. If you work in an office or attend classes, this can be easily done. It may feel awkward and embarrassing to ask for these things, and having to sit or lie down can put an awkward pause on things you are engaging in. You must allow yourself to embrace these breaks because they are vital for your body. It is important to discuss any other accommodations you may need related to your job or schooling. The ability to take breaks, eat and drink, take tests or complete projects with extra time, excused absences, etc. Other people may judge you and think you are lazy or are abusing the system somehow because they do not understand invisible illnesses and many are not aware of how quickly a seemingly healthy person can become disabled.

Exercise

If you are medicated and not currently bed-bound you may give exercise a try. Now, you may need to completely scrap what exercise looked like for you prior to your diagnosis. If you were running, lifting weights, or doing HIIT workouts, this is not something you will be able to jump back into without triggering your POTS. Like everything, it also depends on how severe your POTS is currently, but also on how much deconditioning your body has experienced. If you have been bed-bound for any amount of time, the body can quickly lose muscle and your cardiac output can diminish just from the lack of activity itself. On top of the diminished cardiac output resulting from POTS, exercise can seem impossible for some, but with the right plan in place, it can absolutely happen. The only exercise program that exists among doctors for POTS is the CHOP/Levine protocol which was developed by a doctor and has mixed success rates. As of now, many complain that it is outdated and that there are other programs designed by people who actually have POTS with higher success rates. The program is not very well rounded and is helpful for only some people at certain severities. Personally, I have found programs or even just exercise videos posted to social media by those who have POTS and have been exercising with POTS for an extended period of time to be helpful. If you want to start very basic and do not feel like following any sort of program here is what you should keep in mind: 

• Starting on the floor doing recumbent-based exercises is the best way to start.
• You can eventually work your way up to standing exercises and even exercises that require significant postural changes; this may be a very long process or it may be shorter than expected. 
• Working out POTS will feel very difficult at first, even simple exercises can flare your symptoms. This is normal
• Your heart rate is going to be high and you will likely be very surprised at how high it gets doing just the basics. REMEMBER that your body has difficulty standing and walking so you are of course going to experience lots of tachycardia with any exercise.
• You need to know when to stop and rest. If you are feeling presyncope or experience actual syncope you may need to stop exercising altogether for that day. A heart rate higher than the 160s/170s that is not decreasing much when you take breaks may indicate that you are overdoing it.
• You MUST stay hydrated WITH ELECTROLYTES; sodium AND potassium are crucial along with your water.
• Rest and recovery are a must with exercising. Even if you already spend most of your day sedentary, you will still need to rest more prior to and after exercising.
• Working on strengthening your muscles is very beneficial. It helps to reverse some of the deconditioning and stronger muscles can push blood back to the heart and brain at a faster rate. Especially your lower leg muscles, glute, and abdominal muscles. 
• If you are to try any cardio, walking may be all you can do. This may be so for a while. I have not tried much cardio other than walking since walking long distances still proves to be difficult, especially in the heat. If you do want to try it, recumbent biking in the AC is a good place to start.

Maintaining mental health/relaxation techniques

Finally, keeping your mental health in check and doing things to relax your body and lower cortisol levels is crucial. I’d say this is one of the most difficult parts of having a chronic illness. You are going to feel hopeless and even a bit depressed sometimes. POTS changes your life and can put many of your endeavors on pause for some time. It’s important to surround yourself with people who make you feel better and supported and to not bother yourself with people who make living with your condition even harder. You can’t force someone to understand or even feel compassion for you and it is not your fault if your illness becomes “too much” for someone. Some people are not mature enough to maintain a relationship that changes because of your chronic illness. You really have to focus on yourself and do what is best for your body and that may mean you and others making sacrifices. However, your peers do not have to understand everything to provide support and sympathy. Meditating, stretching/doing basic yoga, listening to calming music or even singing/ humming, getting messages, and doing vagal maneuvers can be very helpful tools to regulate your nervous system. I’ll touch on these more in the future.

Positive/ Helpful Note for Today’s Post: Use the meditation app Headspace for some great meditations ranging from relieving stress to coping with pain to dealing with sadness and anger. You can use a free trial over and over or purchase a subscription. The subscription is pricey, however. If you aren’t interested in having to cancel a subscription over and over or pay for one, Headspace overs meditations on YouTube and Netflix. Meditations can be really useful for dealing with panic during episodes and the sadness, anger, and worry that accompany chronic illness. It takes time to get comfortable with it and it is better to practice short meditations more often than vice versa. You may find it difficult to do it while you are symptomatic so I recommend the breathing exercises or watching videos if you don’t want to focus on bodily sensations at all.