Let’s talk about sleep studies: have you ever had one? I did a sleep study about 20 years ago, and it showed that I had very limited amounts of restorative sleep, which they attributed at the time to my having “fibromyalgia” and trying to put me on a number of low dose antidepressants to get better quality sleep, which all had way worse side effects than not sleeping, and never worked for me. Of course, it was determined years later that I don’t have fibromyalgia, but rather a syndrome known as hypermobile Ehlers-Danlos Syndrome (hEDS). I have only successfully improved my sleep quality in recent years using pain medicine at night (Gabapentin, Topamax, muscle relaxants, medical mj), because if it was pain that was waking me up all night long, ergo, I needed to stop the pain, right?
#TheDurableDaughter has followed in my path of insomnia and poor quality sleep. After years of trying everything to increase her sleep quantity, and not succeeding in making her feel more rested, I requested that her neurologist order her a sleep study, so that we could see what kind of sleep quality she is getting.
(I highlighted those two words just to remind you that there are two factors at play when we are talking about sleep problems. Sometimes people who “sleep” don’t understand why they feel fatigued – not realizing they may have dysfunctional sleep quality due to apnea or pain.)
If you are wondering what the sleep study is like, we arrived at a hospital at around 7:30 at night. I had to accompany her for the duration of the study, because she is a minor. They began putting electrodes on her scalp and chest and face at 8:30, which took about a half an hour, and then it was lights out. The beds were not comfortable, but I remember the bed that I slept on in my 20s being rather okay, so I’m sure this is facility dependent and not some ploy to mess with the chronically sleep deprived. (True story: the hospital we were at put the Sleep Lab UNDER THE MEDIVAC HELIPAD, but luckily, there were no emergencies to make the helicopter come and go the night we were there…EYEROLL.) Terrible bed though, and I am two weeks out from shoulder surgery: they are very lucky that I medicate myself so heavily at night, because I didn’t want to screw up my daughter’s results by tossing and turning all night. In case you’re wondering, the wires are attached to a portable pack for relatively easy mobility, but the technician has to escort the patient from the bed to the bathroom at night. There is a camera observing the patient at all times, so if they wake up, the technician will come in.
The study ended at 5 AM (ugh!) The electrodes were removed, we packed up our stuff and were home by 6:30 AM. (I have yet to hear any results from the study, as the technician did not discuss any results with us.) I will definitely let you know what we find out!
This has all been my DIY attempt to follow Dr. Alan Pocinki’s guide to care for EDS/dysautonomia: decrease pain, improve sleep quality, lower adrenaline. In case you are following along at home, we have so far:
- Increased her nightly Gabapentin (love that drug!) and committed to nightly Melatonin (5 mg, but no more…her Neurologist said higher doses have been known to decrease quality of sleep.)
- Put her on PRN (as needed) Flexeril, which her pediatrician said is fine for teens. When she has a bad cervical headache or pain from a muscle injury, she takes one at night, and sleeps like a baby.
- Started a small dose of Atenolol at night. This was the most difficult thing for me to accomplish over the last six months, but with a lot of persistence, I finally did it! It is rather hard to convince doctors to put a very skinny girl with a low blood pressure on a beta blocker. However, Dr. Pocinki believes that interrupting the adrenaline spikes is a very important step in breaking the dysautonomia cycle. He teaches that low-doses of beta blockers will not drop the blood pressure (BP) of Postural Orthostatic Tachycardia Syndrome (POTS) or orthostatic intolerance (OI) patients, because it is the dysfunctional spiking that causes the plummet of BP in the first place. I have been on Metoprolol for months now, and it hasn’t affected mine. The short-term feedback from #TheDurableDaughter on Atenolol is that she “loooooves it,” and that it makes her feel less “anxious” and have less racing thoughts at night when she is trying to sleep. Two hypermobile thumbs up!
The sleep study was the final stage in my project (“Project-Get-This-Girl-Some-Sleep-Before-She-Starts-Highschool-Fer-Chrissake!”) I wish that I had been able to get the sleep study completed earlier in the summer, so that if any problems were identified, we had the time to address them before school starts in two weeks. Alas, “plans are what you make, and life is what happens.” Dealing with the medical system is a frustrating endeavor most of the time. I do feel rather blessed that I made any of this happen at all before school started. (Any other disability parents out there use summer time as their “get all of the therapy in” time? Wow, we sure know how to party, huh?)
If you or your child exhibit any symptoms of daytime drowsiness, or have been diagnosed with dysautonomia or POTS, I STRONGLY recommend that you watch Dr. Pocinki’s YouTube lecture about the psychological misdiagnosis of EDS patients. (In a nutshell, chronic pain and fatigue makes people seem anxious, panicked, and inattentive (poorly focused) so they get diagnosed with anxiety, panic attacks, ADD/ADHD, but the problem is, the drug treatment for those disorders makes us WORSE!)
Have a sleep study story or question? Share it in the comments below!