I recently completed a three day study at my local hospital. This involved a spirometry, ECG, ENT exam, overnight sleep monitoring and a Multiple Sleep Latency Test (MSLT).
There were multiple reasons for this, the primary one being that I have been having frightening episodes of partial paralysis, accompanied by some other odd symptoms, and my doctor and I are trying to confirm whether or not this is linked to my Migraine auras or whether there is something else at play.
The second reason is that I suffer from profound fatigue and usually fall asleep 3-4 times a day (occasionally involuntarily!). While this is not uncommon for people with a multitude of health conditions, it is important to rule out sleep disorders and other problems which can cause fatigue in order to prevent unnecessary long term suffering.
While my overnight sleep monitoring went well, I found the overall experience extremely anxiety provoking and therefore feel that the other exams were probably not an accurate reflection of my usual heart rate/breathing/blood pressure/brain waves etc.
A big part of my anxiety was not being adequately prepared for what would happen during the study, combined with my pre-existing angst around hospital visits.
Hospitals claim to create “ideal” conditions for sleep during these tests, but looking online I can see that I am not the only one to have found this to be untrue. I believe the doctors and nurses did the best they could for me during my testing, but it is very difficult to be told that you need to maintain your “routine” during your stay (in order to get accurate test results), when this is near impossible in a hospital setting, especially during a global pandemic.
Sleep studies are performed for a number of reasons. I hope that by giving you a snapshot of my experience, I can provide an understanding of what to expect and how to prepare for a sleep study, and/or help spread awareness about the potential limitations of this type of testing.
Episode 1. Attack of the admin
Our saga begins two weeks before I even set foot in a hospital.
As someone who has profound anxiety about hospital stays, I was dismayed to be greeted by the mailman one morning, who had a huge stack of paperwork for me about the required preparations for my visit.
I was even more dismayed when, despite going through all this with a fine tooth comb, I found myself none the wiser about how much of this endeavour my insurance would be covering, what day or time I was going to be discharged, or the exact testing being performed.
The paperwork also revealed the very disturbing fact that no caffeine would be allowed during my stay!
I decided to ease myself into all this by getting to work on the easier preparation tasks; shopping for a robe and shower thongs and downloading movies to watch on Netflix without paying for wifi (priorities!).
Soon though, there was no avoiding calling my insurance to check my level of coverage for planned hospital visits. Two phone calls, and several emails later I was no closer to confirming whether or not I could afford to opt for a private room (which I thought would be better for a sleep study) so I decided to opt for a communal room and hope that COVID would force the hospital to separate us for free.
Due to a mixture of being practical and having good old fashioned trust issues, I also decided I would self-cater during my stay. I was still having frequent Gastroparesis flair ups and this combined with my conga line of allergies made me doubtful I’d be well fed by someone who didn’t know me.
Fortunately, I was confident for only three days I could easily survive on meal replacement powder mixed with water. I managed to get a bulk amount of this together with some bananas and mini UHT soy yoghurts for good measure.
The next thing to do was to update my spreadsheet of all the medications I am on and why. I wrote an article about why this is important here. I also needed to figure out how the hell I was going to get my giant pregnancy pillow to the hospital. Fortunately, the night before admission, my fiancé’s mathematical brain performed some packing magic for me and saved the day!
The final thing to do was to call the hospital to try to get to the bottom of when I was being discharged. Believe it or not that also took not one but two phone calls…and they didn’t even end up telling me the correct time or day! (More on that later)
Despite all of this back and forth, I found myself feeling a lot calmer the night before admission. I think taking the extra time to feel well-prepared helped me and I was starting to look forward to a few days of sitting in bed reading and watching TV.
Packing (usually one of my most hated tasks) was also made a lot easier by my fiancé and our special packing assistant.
Episode 2. Bureaucracy strikes back
Remember when I said I was well-prepared? Ha ha….ha.
Despite a smooth admission’s process, as soon as I made it to my hospital suite I was bombarded by questions and information from an angry nurse who looked like she had more important things to do than deal with my sleep and food deprived brain at 8am.
She handed me a piece of paper that had a list of no less than four consultation appointments on it for the day, something that I had no idea was happening. It turns out this was not going to be the nap-filled mini vacation that I was hoping for.
I had been under the impression that the MSLT (in which you are monitored for a 20 minute snooze every two hours) would be continuing for the duration of my stay. However, the nurse informed me that that would only be happening on the middle day of my stay, and they had other exams planned for me outside of that.
She then handed me no less than 8 questionnaires to complete before 2pm…outside of the four consultations. Did I mention that I suffer from profound fatigue? 🙁
Although there was a porter service for patients with reduced mobility, I decided to walk to my appointments in the hopes that I would burn off some of my anxious energy about the last minute changes. This turned out to be a mistake and I arrived at my first appointment nearly in tears because it was so much further away than I thought.
The first appointment was for a Spirometry, an exam that involves completing different breathing patterns into a special machine to check lung function. This was not my first spirometry and so I immediately knew there would be a problem with the fact that I had already taken my asthma reliever that morning. The technician was sympathetic (I think my demeanor was screaming up and coming basket case) and said we could still do the exam and she would just note the conflict in the results.
I then went straight to my second appointment which fortunately was just an ECG, my fourth one for the year I think?
I hobbled back to my room, quickly got some breakfast and pills into me and then set to work on my questionnaires. Some of them were very similar to the questions I’d been asked in my pre-screening interview. For example, questions about my sleep habits, the types of situations I’d fall asleep in, and the ways in which my fatigue affected me.
However, some of these questions rubbed me the wrong way. While I understand the need to asses a person’s mental health as a possible barrier to good sleep, I disliked the way a lot of the questions were worded on the psychological evaluations. For example, asking someone if they feel tired and unmotivated for “no reason” is spectacularly unhelpful. (Well doc, I don’t know if it’s for a reason or not, that’s why I’m here getting tested! Also…if you are fatigued due to poor mental health, that’s a “reason” is it not!?) Similarly, asking someone if they are anxious or experience a racing heart is not that useful if the person is anxious because of ill physical health or if they have episodes of tachycardia (like myself).
I can’t really say that I have a better solution to this problem, but I really think we need to end the total separation of physical and mental health in medicine. The two are inherently linked and can feed each other in either a positive or negative way. I don’t think that treating them like two entirely separate entities is doing any of us much good.
Next, I had a consultation with the sleep doctor who wanted me to present him with my entire life story, tied off into a neat little bundle. He was quickly directed to my spreadsheet instead.
He also informed me that I would in fact be being discharged on Wednesday rather than Thursday. This prompted me to have yet another rush of anxiety, as it made me feel a lot more pressure to sleep well during the two nights of my stay, as it left us with less time to gather data.
While this is of course partially a “me” problem, I really do feel it’s not ideal to keep giving a patient conflicting information in a potentially stress inducing situation, especially when getting a recording of their “typical” brain activity is the primary reason they are there.
My final consultation for the day was with an ENT. Despite falling asleep in the waiting room, I managed to get through this final exam and receive the all clear on my throat and nasal passages before returning to nap in bed.
Episode 3. Revenge of the wires
Upon waking, I had to get myself changed for bed as my paperwork said I needed to be ready to be “wired up” for monitoring at 5pm.
Fortunately, no one actually came until about 7:30, so I was able to have some quiet time and unwind from the stress that all the unexpected doctor’s appointments had caused me.
In the meantime, the dietician also stopped by to ask me why I hadn’t put in my meal requests. Regardless of whether you are at event, on a plane, or evidently, in a hospital, people always seem to freak out if you reject their food! Fortunately, she was very understanding and took the time to go through my extensive restrictions with me. She agreed that in my circumstances it was probably good that I had brought some foods that I knew were 100% “safe” for me, but that she could organise some soups and other liquids for me that were within my limitations.
She had a very calm and reassuring demeanor compared to everyone else on my ward, and even though she had little to do with the main reason I was there, she made me feel a lot better. This really drove home to me how much of a difference treating patients as individuals and with compassion makes to their experience in a medical setting. (Shocking right?)
The two technicians who arrived to turn me into the bionic woman were also lovely. They explained what would be happening in great detail, something I appreciated as it turned out to be a very in depth process! It took nearly an hour to set up all the equipment. Electrodes were glued to my head and legs, a heart rate monitor and pulse oximeter were attached, a nasal airflow sensor went up my nose, and all the resulting wires needed to be plugged into specific spots on an ECG/EKG machine that was strapped to my chest.
The most interesting part of this process for me was the testing phase. I learned that the sleep study technicians were going to be learning a borderline disturbing amount of information about me that night. Not only would they be monitoring my heart rate, blood pressure and brain activity, but they would also be able to see when I blinked or breathed and my other eye and leg movements during the night. To top it all off, the entire night was being monitored in another room from a small camera, and was being recorded for review by the sleep specialist later. No pressure.
Episode 4. The Jess awakens…over and over again.
Fortunately, during the first night I actually only awoke twice. Once for the bathroom (I hope whoever was watching enjoyed me almost face planting on my way there!) and once due to a need for my asthma inhaler.
I awoken at about 7:30am by a nurse as I needed to be re-wired differently for my MSLT. Also…surprise! She dropped the bomb that I wasn’t going to be allowed to shower until I was being discharged; lovely news to get when it’s 30 degrees Celsius outside.
The second round of wiring was quite a bit less cumbersome. I kept the electrodes on my head, but the ones on my legs were removed along with the airflow sensor. I was also given a much smaller monitoring machine and a little bag to carry it around in during the day.
Unfortunately my psyche got the better of me during the first nap break at 10am and I just couldn’t relax. I had started suffering from a gnarly headache the night before due to a combination of exhaustion and the heat, and it still hadn’t lifted. My hip also decided to kick me while I was down by sliding out of its socket during the allocated nap time.
After popping my hip back in at the end of my failed nap, I managed to get myself into a bit more of a rhythm, doing my jaw exercises, writing and other activities as normal. My 12pm nap was a little better and I think I drifted off for a few minutes here and there, but the temperature was already climbing high, and as a result so was my heart rate, making it hard to sleep deeply.
My 2pm and 4pm naps were probably the best, I even experienced some wakeful dreaming (the transitional state between consciousness and sleep during which you can experience hallucinations, false awakenings and confusion about what is real and what is a dream) which I was I told was an important part of the data being collected. I did find myself starting to get a little irritated in the afternoon, as 20 minutes seemed just long enough to settle into a good sleep before I was woken up.
I managed to brave some gentle strengthening exercises before the final nap at 6pm. I felt like I had been quite sedentary during the day (even by my current standards!) and I wanted to make sure I could still sleep well later that night. I feel like one of the main limits of the MSLT is that it is primarily looking at whether or not you suffer from excessive day time sleepiness, even though this is evaluated in an environment that is far removed from the normal level of activity required to lead an ordinary life.
In my case, I was able to sleep for a few minutes here and there during the study, but when I have to do more normal activities like showering, going to appointments, walking to the train station etc. I can easily sleep for multiple 1 hour blocks a day. I’m hoping that the activity diary that is filled out as part of the data for the day will help ensure the interpretation of my results is still fair.
The final nap was a flop as there was too much noise coming from both inside and outside the hospital. I was fed up from the heat and my lingering headache. There were also weird breakouts forming on my face and thighs. Something I forgot to mention before is that you can’t use moisturising or conditioning products from the day before your hospital admission, so I was now coming up on two days without a shower and three days without my lotions and potions!
Despite all my complaining, one positive thing that did come from all my downtime on the second day, was having the head space to finally work on my article about PMDD. This was something I had been putting off for a long time as it is a highly emotional topic for me and also a HUGE subject with a lot to cover. Honestly, I didn’t know where to start. Of course, as always, the best way to start is just to start. I’m grateful for the restrictive hospital environment for once for forcing me to stop procrastinating!
I went to bed on the second night around 11pm, much more comfortable with my paired down set of wires. Despite my low effort day, I was exhausted from the heat and fell asleep quickly again. I only woke up twice again this time, which is very favorable compared to many of my nights at home. I have mixed feelings about this, on the one hand, I’m glad that I provided the sleep technicians with lots of data, but on the other hand, I wish they had have captured data from one of my rougher nights with excessive sweating and frequent awakenings.
Episode 5. A new hope?
On the final day, I awoke naturally around 7:30 am due to the sunlight streaming through my curtains. Not long afterwards, the sleep technicians arrived to free me from my prison of wires. The electrodes had to be removed with high concentration acetone, and they left me with the bottle to get the remaining chunks of glue out of my hair, something which took a good 2-3 days!
I finished filling out the last part of my activity diary (about my overnight experiences) and then was finally able to shower. Although its long awaited nature may have clouded my judgement, I have to say it was a top notch shower. I was well impressed by the water pressure, spaciousness of the cubicle and the handrails in every direction. However, points have to come off for the enormous face shields and huge bottles of cleaning agents inside that made me feel like I had been cast in some kind of horror movie.
When I returned to my room for the obligatory chronic illness post-shower rest, I was pleasantly surprised to realise that I was not feeling nearly as trashed as I might have expected after the past few days.
Upon reflecting on this, I realised that there were two key things that had a positive impact on my energy levels. The first thing was that I had been treating rest and sleep as a priority, since that was what I was specifically at the hospital for. As my overall health has improved over the past year, I have gradually fallen into the trap of prioritising rest less and less and treating it simply as a necessary evil that I have to partake in when I can’t carry on anymore. Resting before I absolutely had to seemed to have served me much better during my stay.
The second thing was that I had to have my phone and tablet on flight mode and disconnected from charge while the equipment was recording. This meant that I could not charge my devices overnight and only for short intervals during the day, forcing me to take regular breaks from writing and emails, and really limit how much time I spent looking at messages and social media.
When I returned home after discharge, I felt myself getting overwhelmed very easily when I had a lot of notifications (especially messages) on my phone. Living far away from my family and having limited contact with my friends due to the pandemic has meant that I am spending more time on my phone than ever. Going forward, I want to come up with a plan to optimise how I handle my time on my phone, both socially, and for tasks related to Delicate Little Petal, so that I can avoid unnecessary stress and fatigue.
I really don’t know what my test results will or won’t reveal, and I have serious doubts about the accuracy of some of the data, but I’m extremely grateful to be able to tick sleep study off my to do list. I’m also grateful for the important realisations I have had about how I can better serve my body when it comes to rest and pacing going forward. At the very least, the results of this testing will lead to a neurologist’s referral and eventually a better treatment plan for my migraines, something that I have been waiting a long time for.
I hope this post has provided some insight into the lengths that people living with complex illnesses sometimes have to go to in order to access answers and treatment. If you have an upcoming sleep study, you are welcome to ask me any questions that you may have via the contact page.