Basingstoke Team Parish

Flora: Raising awareness about the connection between PoTS and poor sleep/UARS....My Personal Story of Recovery

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My name is Flora, I am a 32 year old PhD Student and I would like to share my personal story of how I recovered from PoTS/OI, as I believe this might possibly help a great number of people who have been diagnosed with PoTS and are struggling with this debilitating condition. I would like to raise awareness for the connection between PoTS and poor sleep, or rather a special form of sleep apnea known as UARS (Upper Airway Resistance Syndrome).

Beginning of health issues

I had always been a fit and physically active person, but during summer 2016 I began to start suffering from extremely low blood pressure and severe symptoms of orthostatic intolerance (OI) after a prolonged period of bedrest. My doctor had prescribed bedrest due to a viral infection (this was sometime earlier in 2016 and my symptoms included chest pain, a severe cough, and a high fever). I had been struggling with orthostatic intolerance for most of my life – since age 12, actually, when I first recall jumping out of bed in the morning and suddenly losing consciousness for a brief period of time. After this episode, I was told by my doctors that I had orthostatic intolerance, and somehow I managed to keep the symptoms of OI at bay (mostly through lifestyle changes and lots of exercise). But after this period of bedrest in 2016, everything somehow got much worse, up to the point where I could barely function in everyday life any more. Every time I would try to stand up, my heart would start racing, I was having heart palpitations on a daily basis and I experienced several episodes of near fainting throughout the summer. I was trying to ignore my symptoms for some time but somehow they did not seem to get any better. As until then I had always been an active person who loved to swim, ride horses and travel, I did not want to accept that there was something seriously wrong with me until I hit rock-bottom in August 2016.

Hospitalization in London

I had the scariest one of my “episodes” in August 2016, when I experienced a near-fainting episode at Heathrow Airport after a short flight. I was subsequently taken to the emergency room and of course no-one knew of my PoTS/low blood pressure, so people thought I might be having a heart attack or a stroke. I fainted at the ER and I think I will never forget finding myself with an oxygen mask over my nose and mouth after regaining consciousness. The feeling of losing control over my own body like this was one of the most frightening things you could possibly imagine.

24-hour Holter Monitor, Beta-blockers and Midodrine

Before experiencing these frightening “episodes”, I had always been a very active person, working towards my PhD in Linguistics and engaging in outdoor sports like snowboarding, swimming and horse riding during my free time. I also used to do athletics as a teenager and I am a certified life guard. I suppose you can imagine how upset I was to be experiencing these frightening symptoms all of a sudden. I went to see several doctors, who did not seem to know what was wrong with me at first. They did various blood tests on me and I was put on a 24-hour Holter monitor to record my heart rate. Eventually I was prescribed beta-blockers to slow down my heart rate, and I was told to wear compression stockings and a compression belt, and to increase my salt intake. After the fainting-episode in London, I was also prescribed Mitodrine and salt tablets, and I was told to increase my fluid intake to 3-4 litres of water a day. I tried all these measures and I did actually get a bit better, but I was still experiencing chronic fatigue and severe heat intolerance. I was so scared of experiencing another one of these terrible “episodes” due to heat intolerance that I decided to avoid going on public transportation and on stuffy trains in the summer altogether. My fear of suddenly collapsing on some type of mass transportation like on an aeroplane was so great that after having been hospitalized at the airport in London, I was unable to travel by plane, although I had been planning to go to America for some time.

Chronic Fatigue and Diagnosis of Sleep Apnea/UARS

I continued to feel chronically fatigued, and I would sleep for 14-16 hours at a time. Even after all these hours of sleep, I still did not feel rested. I was incredibly lucky to meet a doctor who suggested that I should get a Sleep Study done, after I had told him about the symptoms I was experiencing. At first I was hesitant about getting evaluated for a sleep disorder at a sleep lab, as all the doctors I had been to see until then were convinced that there was nothing wrong with my sleep. In the end I did go ahead and get evaluated for a sleep disorder, and it turns out that I have Sleep Apnea, or rather, a condition called Upper Airway Resistance Syndrome (UARS). When I was first told about sleep apnea, the whole subject was not entirely new to me, as my late grandmother had also been diagnosed with Obstructive Sleep Apnea (OSA) when she was in her eighties. But of course I would never have expected to be suffering from a serious condition like this at my age!

The sleep study at the sleep lab confirmed the suspected diagnosis of UARS/OSA (before going to the sleep lab, I did a test at home with a device you can put on your finger at night, which measures respiratory disturbances during sleep and so-called “arousals” of the autonomic nervous system). My test with the device scored “severe” which means that my breathing stopped more than 30 times per hour every night. The sleep study also showed that my blood oxygen saturation levels dropped below 80% several times at night. In my case, doctors agreed that I seem to have a combination of UARS/OSA. It turns out that this is related to the fact that I had an orthodontic procedure at age 12, where I had 4 teeth removed and I then had to wear a headgear and braces in order to close the gaps between the teeth (later on, I also had my wisdom teeth removed, which makes a total of 8 tooth extractions). What I did not know until then, is that making the jaw smaller can cause Sleep Apnea – which is obviously what happened to me! 

Connection between UARS and hypotension/low blood pressure

There seems to be a connection between Upper Airway Resistance Syndrome and hypotension, although unfortunately this is not widely known among the scientific community. Upper Airway Resistance Syndrome was first described by Dr. Guilleminault at Stanford University, and it is a condition which mostly affects younger, slim/average weight women and some men of normal weight – as opposed to the well-known condition called Obstructive Sleep Apnea, which mostly occurs in overweight, middle-aged men. Some actually call UARS the “young, thin, beautiful women’s sleep disorder”! As “straightforward” sleep apnea is mostly seen in overweight patients, many doctors will not suspect young, slim women to be suffering from a sleep disorder like UARS (in my case it seems to have been caused by the orthodontic procedure I had as a teenager, but there are also people who have this condition due to the fact that they were born with a small/recessed jaw).

Treatment and Recovery

Since my diagnosis in October 2016, I have been treated with a device called CPAP (continuous positive airway pressure), which is considered the “gold standard” for treating sleep apnea. It is now May 2017 and my PoTS-symptoms are completely gone. (By the way, there are several other options for treating sleep apnea, such as a so-called “oral appliance” which pushes the lower jaw forward, and various types of surgery, but it seems that CPAP is the most effective so-far). Since I am being treated for OSA/UARS, I am able to exercise upright again and I am not constantly feeling fatigued any more. In fact, it only took a few weeks of treatment with CPAP until I already began to feel a huge difference. I am incredibly happy and grateful to have met the right doctor at the right time. Being diagnosed with UARS and receiving the right treatment has probably saved my life – or it has at least saved me from ending up in a wheelchair and on disability.

Raising Awareness about the Connection between PoTS and poor quality of sleep/UARS

I am now dedicated to getting the word out about the connection between PoTS and sleep disorders, as I believe millions of people like myself, who either had orthodontia when they were young, or happened to be born with a small/recessed jaw, might benefit hugely from this information. Screening for UARS/sleep apnea is relatively easy to do at home with an “at home”-sleep study, using a device you simply put on your finger overnight. I am hoping to raise awareness about the connection between PoTS and UARS among the community of people who have been diagnosed with PoTS by sharing my story on this site.
I would strongly encourage anyone who is battling PoTS to get their sleep evaluated, as this could be the key to a speedy recovery from this terribly debilitating condition.

PS: As a side note, if you feel that you are experiencing poor quality of sleep and decide to go in for a sleep study, you should only opt for a sleep lab where they have knowledge of the condition known as UARS (as described by Dr. Guilleminault), considering that the diagnosis of this condition is trickier than of OSA. Some “traditional” tests which are mainly used for picking up straightforward OSA are not reliable for diagnosing Upper Airway Resistance Syndrome (which is what was obviously causing the low blood pressure and fainting in my case).


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