Lina’s story with PoTS started as far back as December 2012, shortly after she celebrated her 50th birthday. At the time of the birthday, life was normal. For Lina, life just began at fifty. She was in her best spirits and had a spur of energy that she had not experienced in a long while. She had a job as a teaching Principal, enjoying her family life and making big plans. In short, life was at its best for her. Lina loved seeing the world. So, as a treat for her, her husband celebrated her birthday for her in a big way in Austria. If anyone had told her then that her life would soon crash, Lina would have vehemently rejected it.
After the Christmas break, both husband and wife returned home. Lina returned to her life afterward. Shortly after, she contracted a virus, probably from work. That was the beginning of the dramatic change that came over her life, usurping everything in its way.
On a fateful Sunday morning in January 2013, Lina woke up unwell from a very restless sleep. Nothing in her body felt alright. Her conclusion was maybe she had picked another bug up in her school. Lina was not a frequent visitor to the hospital, but this time around, she knew she had to go to a doctor. It was not long before she dealt with a virus, and now this again.
Without delay, she went to an out-of-hours clinic where she met a locum GP. It was the doctor who first talked about her heart rate. Lina felt he was overly concerned. The doctor said she had tracheitis, but that was not a problem. It was something he could take care of without any problem. Her heart rate, on the other hand, was a primary concern for him. He told Lina that he would have referred her to see a cardiologist if he was her GP.
Based on the discussion that ensued between the GP and her, Lina decided to take a week off work. She felt that maybe staying off work stress would alleviate her condition. During the stay off work, the virus settled, and with it, her heart rate, or so Lina thought. Nonetheless, she pursued the conclusion the doctor reached with her. She visited her GP, who ordered an ECG for her. The result of the procedure came back normal, but the doctor further asked her to see a cardiologist. Lina did not give too much thought to the suggestion because the waiting lists were always long. It seemed everyone wanted to have a cardiac-related test at once. With that conclusion, she resumed her very busy life.
Lina often heard from her circle of friends that natural changes occur from age 50 upwards. So, she believed that was the case when she began to feel exhausted after simple tasks. Her body often felt run down, and her heart would beat like a slug, then a train. Being fifty must be the crossing line, she thought and pegged her reactions to aging. Lina dismissed all forms of worry and continued her lifestyle.
However, as time went by and the season became warmer from winter to spring, Lina felt worse. It was as if spring came with pain for her. She would slightly pick up on weekends and become exhausted after class on Monday. Each week came with fresh worries about how she would make it through from Monday to Friday. Weekends presented resting opportunities, and that probably gave her body enough room to recuperate. Lina continued to manage the situation for a while until she had to see the doctor again.
Eventually, she got sent to a cardiology clinic, a step she should have taken since the out-of-hours GP spoke to her. At the cardiology clinic, Lina got fitted with a 24-hour monitor that made her feel better. With the equipment, she felt fit and returned it with no symptoms listed in the accompanying diary. Two weeks after the visit, her GP called her whilst she was at work. He explained that she needed to have a Brain Natriuretic Peptide (BNP) blood test. BNP blood test is used to diagnose malfunctions of the heart. BNP is a protein produced by the heart and blood vessels. When its levels are higher than normal in the blood, it indicated heart failure.
On hearing this, Lina knew there must be something wrong. It could only mean that there was a fire on the mountain. At that point, she began to worry, along with her husband. Hearing some statements can put the mind in turmoil, and that was what happened to Lina. Although she had not gone for the test, let alone have the result, many questions crossed her mind. Did a professional actually think she might have heart failure? Fortunately, the test came back normal. Unfortunately, Lina concluded again that all her symptoms were age-related.
Finally, spring ended, giving room to summer. Summer meant one thing to many people, especially the schools and teachers- holidays and rest. Lina was one of those looking forward to a well-deserved rest after a busy spring, and more importantly, the symptoms she had been experiencing. However, the rest did not give her the anticipated results. She noticed that even with rest, she did not feel better. Her heart jumped about, and she was fatigued and light-headed. At this stage, Lina knew that something was definitely amiss, but she could not pinpoint what it was.
Amid all the turmoil, Lina continued with her life as usual. She, her husband, and her son looked forward to attending a Springsteen concert in Belfast that July. On the morning of the concert, she had a heart scan, and the result came back okay. She got told that everything looked normal, and it was up to the cardiologist to decide if he would see her or not. With the test result coming out well and life going on, as usual, Lina once again concluded that all the symptoms were in her head. If the medics could not find anything wrong with her, then she must be paranoid with her thoughts of crossing over 50 years. After convincing herself that she was fine, Lina took her mind off illnesses and went with her family to enjoy a lovely concert.
Summer was ending; schools would soon be reopening, and she would have to go back to work, but Lina was not any better. It became a source of concern for her. How was she going to find the energy for a new school year when she could hardly cope with a term? That was a rhetorical question because no one had answers to it, including Lina. However, she had no idea that a surprise awaited her in some days’ time.
During that period, she had a trip to Belfast planned with some teacher-friends. They planned to have some well-deserved fun in mid-August 2013, shortly before schools resumed. Those were some of the activities that made her look forward to going on school break. After experiencing what it meant to be sick on some terrible days, Lina could say that she was okay by August 2013.
The circle of friends had a lovely day. They decided to spice up the day by eating out. In no time, they found a nice restaurant and settled down for a meal. Everyone was up for it, including Lina who was in one of her best spirits that day. She could recall sitting down to enjoy a starter and then setting aside her cutlery for a while to chat. That was when it happened: she felt life completely drained out of her. It was like a movie. Her friends later described to her how they thought that she had died. It shocked them to their marrows to watch their friend turn white with blue lips as she went unconscious while remaining rigidly upright.
Lina remembered hearing them call her name as if from a distance. She could neither see nor figure out where she was. It felt as if she was in a suspended space all by herself while people tried to break into her unconsciousness. Eventually, she came around and started seeing herself again. With only a faint recollection of what had, Lina wondered why she had fallen asleep in a restaurant. It was unlike her to embarrass herself so publicly, let alone her friends too!
While she had the fainting episode, her friends had called the emergency line; they were better safe than sorry. Soon, the paramedics arrived and took charge of the situation. They carried Lina by ambulance to Belfast. The remaining part of the night got spent in Accidence and Emergency (A&E). All through the time, Lina was in shock and had nausea. She was also frigging cold with no control over the tremors that racked her body from time to time. Her friends informed her husband, who had to travel 70 miles in a daze, to be right by her side. Her friends, on the other hand, were in a local hotel. They were traumatized by what they saw, but they put their needs aside to help a friend. They understood that hers was high on the list of importance.
For three days, Lina stayed in the cardiology ward. Again, several samples were collected from her for variable tests test results. For Lina, there was nothing new once it had to do with blood tests. Since the time she had been doing the tests, nothing conclusive had come out of them. Again, the results came out normal as she had feared, throwing no light on the situation at hand.
However, the third day marked the beginning of the difference for Lina as she did the tilt table test. She almost passed out, an incident that greatly increased her fears. All thoughts of age-related illness flew out of her mind at that distance. She was sure that no elderly person felt this way because of age. Based on the tilt table test, the cardiologist diagnosed Lina with neurocardiogenic syncope. The doctor told her that to alleviate her condition, she should take extra water and salt. Then, she got discharged.
Lina became confused. With the severity of her symptoms, she thought the doctor would give her a comprehensive list of drugs to buy. However, she got water and salt in return. What was she going to use them for? She needed the assistance that would get her back on her feet and return a sense of normalcy and order to her life.
School started again, but Lina could not go back to work. She felt so alienated and lonely as she tried to get back on her feet. Many things were out the order in her life, making her out of sync. She would sometimes become dizzy, light-headed, and bloated. Simultaneously, Lina would feel herself freezing up, sweating, and filling up quickly only to become bloated. She could not do anything by herself. Going for a walk was out of the question, let alone driving. Any little physical exertion left her weak and uncomfortable. She believed that the high day and holidays were gone for good. The more Lina thought about her predicament, the worse she felt. Her life had taken a totally different turn, and the more painful thing was that she could not do anything about it.
On a particular beautiful September morning, Lina looked out of her window and saw all she was missing. The refreshing breeze of the morning, the fresh scent of grasses and flowers, and the opportunity to socialize with other people. Was that how she was going to lose everything to a strange ailment that she did not know where she contracted it? No, it could not be. Lina made up her mind that she would not let neurocardiogenic syncope take over her life and alienate her from the life she had known. She decided to start walking around her garden for a change. She would begin with 10 times, then increase it to 20 times, and geometrically increase it like that until she could handle more. If she fainted, someone would surely see her after a while. It was a risk she was willing to take. If she did not, then, she could say bye to her life forever. So, Lina did. She would walk and lay down to recover.
Soon, she started to extend the walk to the field around the house. Fortunately, the farmer working the field harvested the barley on the land, which gave Lina access to more walking space. The exercise made her feel better. With the positive result from the workout sessions, Lina persisted in it. By the end of October, she trusted herself to drive again. She felt better for many whole days and parts of days.
With the personal progress she made, Lina started attending cardiology appointments again. Thankfully, the heart tests returned as normal again. This development made Lina very happy as she was eager to return to work again. She sought support from occupational health and made plans to give it a trial. Since she was already achieving much progress by herself, the assistance she got from occupational health boosted her. There was no end to the excitement Linda felt.
In May 2014, Linda started work again. However, as agile and thrilled as she was about crossing an important milestone, she quickly realized that being at home and in the office were two different realities. While at home, she could keep herself well for long periods, the workplace demanded more from her body. In no time, she once again felt weak, exhausted, and her heart was jumping all over the place.
Linda was a focused and dogged person. Once she set her eyes on a goal, she tried to achieve it, and it was not different this time too. She managed herself and tried to cross all hurdles thrown at her without letting up. Nonetheless, she looked forward to the promise of the summer break. At least, she would rest from work-related exertion. Eventually, summer came, and as customary to her, Linda planned another getaway with her family. This time around, it was in Wales. As she did not trust herself to fly, they took the ferry. She had a splendid time in Wales, even with all she was going through; there was no holding her back in maximizing her life.
Again, duties called in September 2014, necessitating her return to work in the school. Unfortunately, the symptoms showed up, and this time, they returned with a vengeance. Lina’s life did not extend beyond working and sleeping, and in between, regular fainting episodes. She had to go from one break to another because of the number of fainting. By Christmas, Lina was not only physically exhausted, but she was also having regular fainting episodes.
With this new development, Lina had to look for a way out. She phoned a Dysautonomia facility to seek assistance. The lady she spoke to was convinced that Lina had a lot more going on than the neurocardiogenic syncope and told her as much. The lady also advised her to try seeing a specialist in Cleveland. Lina was too tired to spend time contemplating what the lady told her. The entire situation overwhelmed her. However, the deed was done, and the seeds were sown already. By Christmas, she understood that her life was never going to be the same again. The changes were all over the place, and the sooner she accepted them, the better it was for her. Until that time, she had not made concerted efforts to find out what the underlying problem was. Now, if she had to give up her so much loved career, Lina thought that she at least owed it to herself why her life was going through an overhaul.
Lina went to the first place everyone went to search for answers:
the internet. After going through the tons of results of professionals the internet yielded, she discovered that there seemed to be a way out. Among the lists, the name of Professor Christopher Mathias kept recurring. Lina made up her mind to pursue the lifeline as it may lead her to imminent freedom.
Success in her endeavor, Lina organized an appointment to see him in London in March. Then, she called the lady she spoke to on the phone who reaffirmed that Professor Mathias was the right person for her. She also mentioned that she knew another lady with similar symptoms from Northern Ireland who had also seen Professor Mathias. Jennifer, the lady on the phone, eventually agreed to give her the second woman’s number for them to communicate. Lina felt it would be amazing to finally meet someone who would have total empathy for the things her body was going through.
Putting all these things behind her, Lina returned to work. However, by the third week of January, she could hardly function. As the weekends were not providing enough respite, she decided to be leaving work on time. She believed that with that, she would last longer, but there was no change in things. Left with no other option, Lina had to opt for her leave until her appointment in March.
With support from her husband every step of the way, Lina took the short flight to London. Not focusing their minds on what was ahead, they used it as an opportunity to have a mini-vacation. When she met Professor Mathias, he created an impression on her. For the first time since January 2021, someone that completely understood every word coming from her was listening to her. He knew about every symptom she mentioned and those that she did not even talk about. The experience was beyond valuable. Professor Mathias explained the range of conditions he believed she had. He explained that she would need to complete a range of tests.
The tests were scheduled for two days in May in London. Four days after completing the tests, Professor Mathias spoke to Lina by phone while she was at home; her results were out already. According to Professor Mathias, she had autonomic dysfunction, vascular pooling, constitutional low blood pressure, Postural Orthostatic Tachycardia, Joint Hypermobility Syndrome, and neurocardiogenic syncope.
Ordinarily, the diagnosis was too much for Lina. How could only one person have all of these together at once? However, she looked at the positive side of the diagnosis. The diagnosis, whilst not providing a cure, empowered her in her approach to doctors. For one, she was no more thinking that she was going nuts. She was certain that she was not too old. She could look at her fears in the face and know the steps to take in tackling them.
Although her GP was lovely, she admitted not knowing about any of these disorders. It was a source of strength for Lina. She did not like the conditions, but she understood them. So, she could make demands when needed. She no longer felt that she had to keep fighting with herself to maintain her old life. That life was no more. Now, she needed to fight to live as best as she could in her new life and also get the necessary support.
Lina’s life was a perfect example of “High days and holidays.” Despite the debilitating life conditions, she knew there was a beautiful world out there. Amid the turmoil that characterized her life, many positive things had happened to her. She met Jennifer’s lady, and they enjoyed each other’s company and texts. She also chatted with Professor Mathias, and it was an exhilarating experience for everyone.
Lina knew that getting support from her loved ones kept her fighting spirit. Her family and friends were there for her 100% and all through the way. She was not yet over PoTS and the numerous conditions that came with it, but she had progressed a long way. She kept herself fit and active on the good days, expending her energy on the things she enjoyed. When her body demanded rest, she gave it its due by taking enough rest. Hopefully, the good days will keep coming. Lina is grateful for what she had; there are no regrets.
