Rawal, age 31, Germany
When we moved to Germany back in 2002, I watched a film. In it, a man who was a firm believer and was fully devoted in his religious practice ran into a large swarm or group of honeybees. He tries to escape it, avert it, run away from it, even hiding somewhere from what I roughly remember. In much fear, he prays to God for help and reminds Him of him being a devoted servant deserving of divine aid. However, as it happened, the honeybees find him and attack him, stinging him one by one, causing the man immense torture. Following this, he loses faith in God and turns to Atheism. I remember no further details of it, or perhaps I didn´t watch it any further, but it´s one of my childhood´s most strong TV memories. The torture that the man went through, and the fact that he gave up on belief in God altogether over an attack by something as insignificant as honeybees, not even carrying the weight of a human hand (I suppose?), would incite much fear in me and fascinate me to no end, sending an 11-year old kid into deep reflections and thoughts. Years later, starting from 2015: five years, 10 months, and some two-three days, I was in the same boat as that man, except that his torture was brief - although of an enormous nature - and I too wondered as to where lay the divine help that I deserved, for, to me, I was a believer of an acceptable nature: not Moses but not Pharaoh either - as the famous Punjabi Sufi poet Bulleh Shah said.
It was the day of Christmas I think, back in 2015. I suffered from something which I just wasn´t able to describe as to what I was going through. All that my elder sister saw was that I was just not me, it felt as if a heart attack would closely resemble my condition at that time. She immediately called the ambulance and by the time that they arrived, I vomited and felt an immediate relief from my symptoms. The ambulance arrived, they checked my vitals which were in normal range and we were calmed right away. Since it seemed like a case of some digestive issues which had subsided by then, I refused to go to the hospital and was doing well. The New Year's Eve of 2015 was a special occasion for me due to the addition of a special person in my life, and it´s the last day that I remember where I had much fun, spending time with my family, when I was still doing fine. A few days later, I suffered from a heavy attack of intestinal inflammation and was prescribed Ciprofloxacin, an antibiotics. Either hours or a day thereafter, I experienced tremors and muscular tensions in the body, something which I didn´t take seriously. Weeks later, the tremors, coupled with heart palpitations, completely took over my life and sent me into a state of severe panic.
The symptoms kept on adding to the list, and my visits to different medical specialists too kept on getting frequent. Close to a period of six years, and all of it was just plainly dismissed as "All in my head!" However, when I saw three to four different mental health specialists, I got told that they´ve never heard of any such illness and that they suspected that the issue might primarily be neurological, cardiovascular, or gastrointestinal. This meant that I must dig deeper and visit other specialists, and I massively thank all those psychiatrists who re-assured me that I shouldn´t give up just because specialists from other fields refuse to listen to me. One observed me cracking jokes with my younger sister in his waiting-room, when I had actually gone to him yet another time to complain about constant jitters in the body, and he said that his experience would´ve deceived him if it indeed turned out to be a mental health issue. He had once even seen me in a cinema with my nieces and had told me that he had rarely seen anyone carrying such energy and passion that I did, given the mitochondrial illness that I already suffered from since my childhood. The biggest signal of it not being primarily a mental health issue came in the fact that all antidepressants (SSRIs, SNRIs, tricyclics, and atypical ones) and antipsychotics (both typical and atypical) absolutely worsened my symptoms, and an absolute blow was that Benzodiazipines too worsened them - a drug class which can calm down people even during the areal bombardment of their neighborhood! Something was surely wrong, just that no specialist knew as to what it was, and I began to sound like a broken tape recorder all the while. Some doctors were even deeply impressed, though, even if they weren´t able to help. For example, with my medical knowledge that I was forced to compile all these years. Some would discuss medical terminology with me as if I was a colleague of theirs, and one endocrinologist was absolutely stunned when I told him that my heart-rate was 107 in that moment, and when he checked, it was 107! The downside of it, however, was the knowledge that I had compiled made some of these doctors see me even more as a mental case, coupled with the fact that it was seen that I was paying too much attention to my body and what it went through in terms of my heart-rate and my digestion etc. Medicines from different specialties were tried, such as antacids, proton pump inhibitors, intestinal stimulators, antiemetics, prokinetics, antispasmodics, beta-blockers, hypertension medicines, calcium antagonists, Ivabradine, and all of them, without any exception, worsened my symptoms.
All the while, I developed some coping techniques. Cutting down on sugars and many foods (especially those which are easy to digest because I felt that my digestion was too rapid instead of slow), avoiding too heavy meals, limiting the intake of medicines, increasing fluid intake, avoiding excessive heat, and keeping myself distracted helped, but only somewhat. I suffered, I suffered and suffered for an eternity and found not even an hour free of symptoms and no doctor seemed interested. My prolonged survival and absolutely normal behaviour, even as my body experienced tremors, assured me just a couple of months into the mystery that I was definitely not going through a heart attack, although I kept on believing that something is seriously wrong inside me and nobody might ever find out.
I felt that my life was spent, so I decided upon giving this world something through my insignificant existence, and I wrote a book, named 'Zacrodonia - the Sacred Land', taking a period of 468 days, it being my tribute to my Creator. To my surprise, the book was approved within a jiffy by a publication house in the Netherlands and got published. A professor from America remarked that he found it incredibly hard to believe that the author is someone who has learned English through the TV channels and the Internet because the style employed seemed to him much beyond even native English-speakers. German translation offices have expressed the inability to translate the book for us, regardless of what price we offer, because of the style that it´s written in and the fact that in its writing lies its beauty. However, my mysterious illness and its deterioration never allowed me to promote it much, and it lies unattended, the book, as much as it pains me, although I had made plans of pulling off bold steps, such as that of offering a refund if someone were not to like it.
I had never spent much time in the company of too many people anyway, but the worsening of my symptoms gradually kept pushing me away from people, and the last few months I´ve completely isolated myself in a sense. One reason being the lack of energy and bad health, the other being some of the things that were said to me by some. I would rarely disclose how I´m doing. I was told to "Try to get on with it." Yes, get on with it, and this was said to a man who, prior to this mysterious condition, had already been operated on eight different places on the body, one of which was a life-threatening surgery in 2010 where I got off the medical ventilator on my own, with the support of my family, when the doctors had strongly advised a tracheotomy, and my recovery was seen as a miracle by them. I´ve even fought drug addiction (in the hospital for medical purpose!) and done mimicry of an actor in the operation theatre whilst a doctor operated on my toe! I was the most cheerful person and also the most confident one from the entire family when we had COVID, and I beat it with much ease, although it was feared, due to my underlying illness, that one touch of the virus would wipe away my existence. The first thing that I did when I was told that I might be having a hole in the lung was to tweet a joke! So what was being said to me by people wasn´t helping the cause much either, I therefore realised that giving myself my own space and time was my right.
On the other hand, finding incredible support from my parents, my siblings, and their little children, was a matter of relief, but I needed relief in terms of my issues. A special mention must go to an Indian friend of mine from Canada who showed interest, trusted me that it´s after all not "All in my head", and sought weekly updates on the progress of my struggle into finding a diagnosis. My brother ran to a lot of doctors with me right from the onset of the symptoms, even got me admitted in the neurology of the Frankfurt University Clinic for me close to a week and stayed there with me, although "It´s all in your brother´s head" was all that he got told. My elder sister attended a lot of appointments with me, especially of psychiatrists, and even went through a very uncomfortable situation where a doctor asked her as to what her opinion is about my issues, to kind of seek her opinion as to whether the symptoms really do exist or not. One word different from her, from how I had been describing my condition as, and a diagnosis of schizophrenia was on the way! Her "statement", however, matched with mine word to word and it satisfied the psychiatrist that I really am not merely just imagining things, after all. Then the younger of my two sisters gave the issue a very committed go and kind of took it personally to get me a diagnosis. From June to October, she got me admitted six times in four different hospitals, and stayed with me there, and attended numerous other appointments, and still is. When I lost hope and gave up, it was she who lifted me up and had new ideas, always. There was absolutely no illness left about which we hadn´t discussed.
Enter August and I was diagnosed with a lung infarction, after having spat blood up for five weeks or so prior to that. Now, this was a strange "blessing" in disguise because a symptom of such a serious nature forced the doctors to take my case more seriously, it being feared that the whole set of symptoms might´ve been caused by the infarction. Again, due to my underlying illness, it literally shocked doctors that I was still alive and fine despite having gone through something such. Also, it was a rare kind of infarction where there lay no pulmonary embolism in the background - another matter of surprise for them! Yet, on the other hand, my mysterious symptoms kept getting worse but the lack of a pulmonary embolism in the background meant that I was cleared and discharged from hospitals after a few days again and again, despite the fact that my dizziness got to the point where I would experience spells which I initially thought were short naps but were instead short spells of fainting: before crossing a traffic signal, at two weddings, and in an MRI machine - the sounds inside of which closely resemble to that of a battle-field, and you cannot, simply cannot, take a "nap" inside it. In the meanwhile, I had, on my own, at least decoded that it´s an issue of blood circulation because rapidly shaking and jerking my head to right and left would right right alleviate my symptoms by 20 to 30 percent. By mid-October, my symptoms had reached the point where wearing the mask for even half a minute caused the feeling of fainting. I went to my pulmonologist and she was on vacation. Here came the key moment: she was represented during the vacation by Dr. Juliane Friedrich who too suspected pulmonary embolism, since the symptoms matched, and asked me to leave for the Frankfurt Red Cross Hospital right away. I asked her the purpose of it, given how many times that I had been discharged from different hospitals despite so many disabling symptoms. "This time not! We´ll get it cleared", she said, with much confidence, something which impressed me but still gave me very little hope because I had been through all that many times already. "You go there and Dr. Aron Krist will receive you. He has knowledge of rare and complex diseases, including neuromuscular ones."
I usually don´t tend to memorise the names of doctors, but Dr. Aron Krist somehow get stuck on my mind with a single mention, possibly because my going to him was planned by God? How else would anyone explain an issue of blood circulation being diagnosed by a pulmonologist and that my pulmonologist was on vacation and being represented by someone who knew Dr. Krist personally? He was as determined on finding out the cause of my issues, and improving the quality of my life, as my family members were, as otherwise, the CT scan again revealed no pulmonary embolism and neither any other respiratory issue. His job, theoretically, was over. He could´ve discharged me that evening itself - like many other hospitals had already done. However, he dug deeper and made me go through a stress test.
The usual cardiovascular stress tests can´t be performed on me, so he and I thought out a way; my brother and younger sister helped me get in a physical position where my body went through extreme physical strain. My heart-rate shot up to 172 within just over a minute. I experienced a total black-out and my blood pressure dropped massively! Dr. Krist stayed in the room for good 20 minutes until my blood pressure stabilized, lest I should faint altogether. On the other hand, despite being completely drained on energy, I was ready to go through another round of the same test if needed because getting to the depth of the issue was all that mattered to me. I had already undergone three gastroscopies and one colonoscopy WITHOUT any sedation, and a swallow test with a thick tube inserted into my stomach through the nose, and many other painful tests, in order to find out what had happened to me. I was least bothered by any such tasking medical tests. "This is a blood circulation issue", he said. The next few days, he put me on medicines which reduce the heart-rate, in the hope that reducing it won´t cause the sudden drop in the blood pressure. However, my symptoms again worsened with such medicines because all such had already been tried the past years. He was baffled that finding the cause didn´t quite solve the puzzle because I was still doing the same as before, or even worse, actually. "My Latin has come to an end", he said, having run out of ideas. It was all doom and gloom for me, for my entire family. Here, I had an honest conversation with him. "Sir, I don´t expect you to put me on some magic pill, I don´t expect you to put me on a medicine that I should be jumping up and down or playing football.... The heart palpitations that I experience, they´re massively misunderstood by doctors. They´re not the heart jitters that you experience during physical activity or whilst watching a penalty shoot-out or a tense cricket match. I was like all of you once, I experienced those heart palpitations too, but those were different, these are different. These are massively disabling and effecting the quality of my life.... This jug of water, I keep drinking water, keep on gulping glass after glass, and it makes me feel better and helps me recover from the flare-ups of heart pounding and dizziness.... " He focused on my last words, took a long look at the jug, and said, "I´m going home now but will think about it at home tonight. I´m sure that I´ll arrive on a new idea." It was a day and night of immense torture, it seemed as if my strong faith was useless and never going be of any help to me. It seemed as if my whole life will be spent this way. I even misbehaved with my parents on the phone, having lost total control of things, as being asked again and again how I´m doing began to irritate me by this point.
The next morning, he got me put on intravenous fluids and asked me to put my body through physical test, such as getting ready in the morning or getting into positions which aggravate my symptoms. I felt better, a lot more under control, and awake. Dr. Krist arrived and, having discovered that I felt better on intravenous fluids, disclosed that the name of the illness is POTS! I took it lightly, initially. I was actually going through an "attack" of my symptoms during the moment after having had my lunch, so my mind didn´t quite process the information. I was very absent. My younger sister Googled the illness, read about the symptoms, and the horrible experiences of people, and broke into tears, whereas I still was quite absent in the moment. A while later, the realisation dawned upon me too. I told my sister that she should herself break the news to the family, as I just won´t be able to control my emotions. However, them merely saying my name on the phone broke me into a sea of emotions. It was proven that I wasn´t just a mental case after all and it wasn´t merely just all in my head. A massive hair-loss and a weight loss of 15 kgs, which I could never recover, wasn´t after all just all in my head. In the hours that followed, I shared the news with all my relatives and friends, making Dr. Krist the most popular man that day. I found his photos and shared with others. An Indian friend of mine even remarked that he had never seen anyone being so happy about having got a diagnosis, and 26th October was indeed a day of celebration, for it wasn´t about being diagnosed with something, it was about finally finding out what I had because we knew throughout that I definitely had something. As a great coincidence, October is the awareness month of dysautonomia, the type that my condition belongs to, and the awareness day for POTS is 25th October, a day before that I was diagnosed!
My sister and I read and gathered information about it, and I came across some shocking revelations. One German woman got diagnosed after a struggle of 36 years, one woman was divorced by her husband because her inability to move out of the bed greatly impacted her family life, and there´re multiple cases of patients trying to die by suicide - most, if not all, of them being cases prior to diagnosis. One man, being frustrated with the lack of diagnosis and treatment, tried to take his life by jumping in front of a train. He was held and overcome by people who then called an ambulance which took him to the emergency room as he then got diagnosed there (another incredible story!). People must be wondering, "How can it be worse than cancer for example when it´s clearly not a life-threatening condition?" However, neither is a man who´s living without two legs, which he lost in an accident, facing any life-threatening illness, but can we undermine his suffering merely because it´s not a life-threatening issue? Besides, according to one study, POTS effects the quality of life as much as heart failure or COPD does. Secondly, a massive part of the frustration of patients lies in the lack of awareness and it being misdiagnosed as anxiety for years and decades. Recognising and treating mental health issues is important, but one problem that I´ve felt in some of the more developed countries is that everything is put down to mental health in cases where the doctors are unable to reach to the depth of the issue, even if the primary symptom is aching toes. Similarly, a person suffering from insomnia since a long time due to anxiety would be exactly as frustrated if he keeps getting referred to cardiologists or pulmonologist. Yet, on the other hand, one big similarity between depression, anxiety, and POTS is that nobody will understand what it is unless he himself has had it.
I was put on Fludrocortisone to retain salts in the body in order to keep the blood pressure raised and was discharged the next day. As relieved and delighted as we were at having finally knowing the cause of my symptoms, after being discharged began horror part two of my struggle, and it is still going on in terms of having my symptoms under control and finding the right medicine, or even a combination of them, which would click for me. During the writing of this article itself, I´ve been to the same hospital to Dr. Krist once more already for three nights in order to get started on another medicine (Midodrine) - and this time it was my brother who stayed there with me. As it is, my new general practitioner, as nice as he is, has little idea about the condition and neither does my neurologist. One doctor even asked me as to what the exact mechanism of this condition is. In the entire province of Germany that I live in, there´s not a single doctor specialised at treating it (only those who´ve a tilt table are specialised at it, and there´re very few of those in general in the country). Dr. Krist´s vast knowledge and expertise, coupled with his will to help his patients, came to my rescue. Otherwise, I might´ve spent the entire life without a diagnosis! I´ve above added a list of doctors who deserve credit for at least trying to help me out, and Dr. Krist already finds multiple mentions in this write-up, with Dr. Friedrich being another special mention, but I must also make a special mention of AOK, my statutory health insurance company. They never complained even if all the costly tests were done on me every second week of the month. My whole survival depends on God and them, and I´m hugely grateful to them.
We now come to the conclusion of the write-up and the most important part of it: what exactly is this thing called POTS? I wouldn´t add here a list of symptoms, as all of you´re smart enough to know how to put Google to good use, and neither does the mere list of symptoms give you a feel of someone´s suffering. POTS stands for postural orthostatic tachycardia syndrome, sometimes just called postural tachycardia. Let´s begin with tachycardia: in my case at least, it was a constant state of increased awareness of the heart-rate, to the extent of feeling it in my forehead and in my eyes. Yes, in my eyes means feeling the rhythm of the heart in the eyes, causing the objects to vibrate in an earthquake-style which I was looking at, at the rhythm of my heart-rate - sometimes it being 130 or 135 a minute, or even higher. The heart palpitations would cause inner shakiness and tremors, and all of that would cause constant akathisia, a movement disorder, because my heart, my inner being, was always in a state of war, even when I was sitting still and doing nothing. You must search for what a punishment akathisia is, and it´s otherwise, almost always, caused by side-effects of medication to treat mental illnesses and is, by itself, rarely a disorder that exists. Coupled with this was a strange kind of chest pain where I would feel as if someone has seized my soul in his hand from within my chest and isn´t letting it go or letting me relax.
Now, these issues caused me a state of lack of emotions and feelings, as if I was not a human, neither even an animal, but a vegetable or something. I couldn´t quite experience or process happiness, delight, or joy and, on the other hand, sorrow, grief, or sadness. I felt nothing. I felt no emotional rush, no goosebumps, and neither emotional pain or tears. I was just totally absent in the moment, always, because I was kept massively busy and occupied by the inner "earthquake", if you could call it. My memory was so badly hit that, often whilst reading something, I would forget what the previous pages stated. As an example, if page 79 said, "Rose went to the garden early next day", I would pause and ask myself who Rose is and which garden she´s going to, even if Rose was the main character of the book! My concentration would be so down that, whilst watching TV or having conversations with people, I had to switch off my mind for minutes to give myself a break before restarting. Long conversation, having long phrases thrown at me, someone talking uninterrupted, were absolute no-go areas for me. My mind would take long whiles to process the information as received by the eyes and the ears. I would struggle to fully understand the scorecards of cricket or football matches and also the strategies employed by the teams involved. If during the break my father asked me what the score is, I would embarrassingly stay quiet and wait for the break to be over so that I could read again on the screen to inform him because, in the meantime during the break, I had often forgotten the score. During a POTS flare-up itself, the brain fog would be so severe that I would feel as if someone had struck my head with a rod - no pain but just that effect on the brain of having just received a blow on the head. Also in general, there was this constant blurred vision, visual lack of clarity, and severe sensitivity to lights - white light would appear light yellow to me, yellow would appear light red to me. I would always complain that no glasses quite fit my eyesight in terms of making me see properly, but the improvement in this particular symptom, at least during phases of the day, made me realise that glasses weren´t the problem to begin with. Since it was an issue of blood circulation and lack of blood flow to the brain and the heart, I experienced some such strange symptoms which I never ever discussed with anyone. For example, shifting my body weight from one elbow to another would completely change my perception of things. For example, if I thought that the team supported by me is losing and that there´s all doom and gloom, shifting my weight to the other elbow would suddenly send a wave and surge of hope into the mind that all is not lost yet and that there´s still hope! I would often feel better outside, especially in winters, and this effect of the "Fresh air" on my mental health in particular would have anyone conclude that it´s just anxiety which finds an improvement in the symptoms when I´m outside.
I have discovered through an article by a German doctor that, in an environment of minus 80°C (!), all the symptoms of POTS would disappear and that heat is poison, plain poison, for POTS because it opens up the vessels and causes the blood to drop into the legs! As for the connection with digestion, the act of eating not only produces heat in the body but also collects all the blood in the digestive tract, and for POTS-suffers that means that the heart and the brain is deprived of it. Now, foods that digest fast, such as carbohydrates, cause severe activation of the digest tract and make things even worse, and the same goes for large meals. For me too, eating continues to be an absolute nightmare and something that I just can´t skip either. If you really want to know what POTS exactly is, then you must be having a beloved one who takes medication for hypertension or even diabetes. Now, ask them how they might´ve felt on days where their medicine might´ve "over-acted" on the body and caused them an attack of hypotension or hypoglycemia. I´m sure that you´ll get told stories of horror, and that is POTS, except that POTS can be a constant state, or multiple flare-ups through the day, instead of just a one-off flare-up.
I´ve been through much in my life which includes a life-threatening surgery back in 2010, and there´s always the presence of my mitochondrial disease in the background, but I firmly testify that POTS is the worst thing that I´ve ever suffered from in life. It´s not merely a medical condition, it has been an absolute punishment. If this still doesn´t underline my horror for you, I may add that, if no treatment works for me, and if it had been a medical procedure allowed and workable for POTS and not carried with it its risks, I would´ve gladly taken an amputation of my legs in exchange for it (since the blood drops into the legs). I´ve used the past tense to describe my symptoms because I still hope that some or the other way or method of treatment will work for me one day, otherwise the issues continue to persist heavily. There have been only two or three days, ever since my diagnosis, that I´ve felt close to 75%, very less number of days where I´ve felt around 30%, and many where I´ve felt below 15%. When someone asks how I´m doing, I beat around the bush. If I´m not well, and when I actually feel a relief in my symptoms, I say, "Right now, in this moment or hour, I´m feeling good." I turned 31 recently, but I refuse to accept that my life moved even a second beyond the age of 25 and a couple of weeks. It stopped there and came to a standstill. Somewhere, it all got lost, I got lost, I got robbed, life got stolen, life never moved forward..... This is a very long read, I know, but if reading this exhausts you, then remember that I went through the horror for five years and 10 months. I couldn´t have made it any shorter, and many POTS-suffers have similar or far worse stories to lengthen your night.
*Note: I´m not a doctor and neither an expert on POTS. Whatever that I´ve stated above is based on whatever limited knowledge and understanding that I´ve gained of the condition over a very brief period of time. It´s entirely possible that I might be mis-informed on some aspects of it.*
Written by Rawal, requiring a period of 17 days.