The festive season is now behind us and I am sure that I am not the only one glad to have seen 2020 come to an end. The pandemic has had a devastating impact globally, but it has also had some positive outcomes especially where receiving health care is concerned. The introduction of phone appointments with my sleep specialist has been a very welcomed change for me as it meant that I did not have the stress of making it to an appointment on time which is something that anyone who has narcolepsy can relate to.
One of the reported symptoms of Covid-19 has been extreme fatigue, and it is one symptom that some who have recovered from the virus are still battling with, which raises the question as to whether Covid-19 can trigger narcolepsy in those who have the genetic markers for this disorder. An increase in people who are experiencing this level of fatigue is helping to raise awareness of this rare disorder, and an increase in narcolepsy cases (not that I would wish this on anybody) it will hopefully lead to more research and perhaps even lead to new treatment options which are currently extremely limited here in Australia. Here is a link to current information regarding the potential risk factor for chronic neurological disorders Parkinson’s Disease, Multiple Sclerosis and Narcolepsy (type 1) in patients with COVID-19: COVID-19: dealing with a potential risk factor for chronic neurological disorders
Hypnagogic hallucinations which are a common occurrence among those who have narcolepsy, have thankfully been few and far between since starting treatment to help me to have some restorative sleep. Sodium Oxybate is a central nervous system depressant. The precise way in which it works is not known, but it is thought to attach to receptor molecules on the surface of some cells in the brain. Misuse of this medicine can cause breathing problems, seizure, loss of consciousness, or death, consequently I take the warnings regarding avoiding alcohol very seriously.
This was my first New Years Eve since starting this treatment and as I was going to an event that included alcohol, I made the decision to have a few drinks instead of taking my nighttime medication. It is now that I really understand just how much I have improved by taking this, not only the fact that I can wake up in the morning, but the fact that I have had very minimal hypnagogic hallucinations since taking it. I honestly do not recall the last time that I had seen a spider suspended on its web right above my face and thankfully they do not scare me, this one was shooting his web at my face which I could feel on my face, in a very spider man like manner, I kept breaking his every attempt to cover my face with his webs while trying to go to sleep.
Being aware of my condition and having answers for these hallucinations has made it easier for me as I am now able to rationalize the fact that it is not real rather than lay in bed frozen with fear. The other consequence of my choice was not waking up until around lunch time and feeling exhausted when I did due to my REM not being suppressed, my day was a battle of excessive sleepiness and involuntary naps, so I will be thinking long and hard before choosing to celebrate with alcohol any time soon that is for sure!
I hope that this year will see me making more progress towards a new normal and look forward to seeing the world recover from the impact that 2020 had on us all.
That is all from me for now, thanks for reading #waking-up-tired.