My Experience With Dysautonomia, POTS and Insomnia

In a previous article related to insomnia, I briefly wrote that my post-orthostatic syndrome (POTS) affects my sleep, and lack thereof. My diagnosis of dysautonomia and POTS symptoms became very serious, resulting in significant injuries, including head trauma. Each time I would fall, it would require me to be assisted by my partner to get up and sit down in a safe space. This is my experience having other illnesses with insomnia.^1,2

Having other illnesses with insomnia

I know these times were scary for him. Since it exhausted me so much emotionally and physically, he was somewhat relieved when I would fall asleep even faster due to the simple level of exhaustion I’d experience immediately after every fall. (I just want to clarify that my increase in POTS episodes had nothing to do with coming off my stimulant, Rather, other medical complications and situations were an issue. While these episodes absolutely affected my sleep, fatigue, and pain level, it was in no way connected to having to hold off on my prescription.)

No sense of time

I talk about having no sense of time in a previous article re: my ADHD and diagnosis of POTS. Having other illnesses with insomnia can really affect my sleep. I never had a sense of time. This sometimes led me to force myself to stay in bed and see if I could get some sleep in different parts of the day to make up for a prior night’s sleep.

I know this probably confused my body, but I also recognized I was going through serious medical circumstances and had to stay in bed. Part of this was being unsupervised during certain events and not knowing how I got there if I lost consciousness. It happened several times.

Cognition and mental health

My sleep was affecting my cognition, it was affecting my mental status and I had to be sure of every footstep, day or night, with or without a walker or a cane. This really scared me in the middle of the night. At that point, I was sleeping in a chair next to the bedroom. This was so I could call my partner in the bedroom for help up because my body could afford no falls.

Increased falls

My body wasn’t even sleeping enough to recover from 1 fall. Having multiple falls many times a day would render my tired factor terribly. I would fall asleep quickly, as it began to get harder and harder to recover. Different sleep schedules and trying naps were difficult. But during this time, I rarely had the chance to nap because I was beginning to get sicker with another diagnosis I have, which steals your sleep.

Affects on overall health

I quickly went from being semi-healthy with POTS and being able to nap when major falls happen to hardly ever sleeping. Medically, I was in a failure-to-thrive state for almost a year. And, I’ve spent many, many nights in the hospital.

Since writing about how stopping stimulants affected/didn’t affect me, things have changed but much remains the same. I have insomnia. Medications and therapy haven’t been the best forms of therapy, so I’m entrusting my care team to help with so many things, just so I can get a little bit of sleep at night.

I’m still having episodes while in a medically fragile state. So, as I said, we’re all just trying to adjust what we can and try to get me some healing, restorative sleep. This has involved now multiple doctors. Currently, I’ve transitioned to palliative care for temporary all-over services.

Do you also experience other illnesses with insomnia? Tell us about your experience too.