I HAVEN’T BEEN THIS EXHAUSTED since last giving birth 29 years ago or since enduring a three-month severe bout of whooping cough in 2005. But the past two weeks, I’ve experienced such a sleep deficit that I feel like a mom with a newborn or a woman with an uncontrollable, body-wracking cough unable to sleep. I feel absolutely, utterly sleep-deprived to the point of wondering how I can function.
The culprit? Medication, specifically the anti-inflammatory steroid Prednisone. For 10 days I took 60 mg daily. Then I tapered down over four more days to 10 mg on the final day, Tuesday. Prednisone has horrible side effects, the primary one being insomnia. I managed several hours of sleep most nights. Do the math and I am basically 70 hours short of sleep over a two-week period. That’s a lot. Enough to mess with my mind, my body, my mental and emotional health.
From the get-go, I hesitated to take this drug prescribed by my ENT doctor. I have been on Prednisone twice previously and understood it would wreak havoc with my body. Besides insomnia, the med also causes restlessness and an irregular heart beat in some people. I am “some people.” But I also understood the need to reduce inflammation, specifically an inflamed vestibular nerve in my right ear that controls balance. I’ve been diagnosed with Meniere’s Disease (related to previous sudden sensory hearing loss in my right ear) and vestibular neuronitis (caused by a virus I had in January). For now, Google my diagnoses; I’ll follow up with a second post next week.
POWERING ON & COPING
After the first few awful days on Prednisone, I messaged my doctor about my struggles. She suggested I taper off earlier if I just couldn’t handle the side effects. Reading between the lines of her telling me insomnia was a common side effect (yes, I know that), I decided to continue on with the med as prescribed. I could, I encouraged myself, power on through this. And, I did. But it wasn’t easy.
When I found myself wide awake after only a few hours of sleep, I exited the bedroom for the living room recliner. (No sense keeping Randy awake with my tossing and turning.) I coped by coloring. I coped by working crossword puzzles in the middle of the night and in the wee hours of the morning. I drank tea. I used a heating pad. Reading proved impossible. Sleep proved impossible. On and on the hours went until daylight began to break and light seeped into the room and the pace of traffic picked up along our busy street.
And so this has been my state of being. Mostly exhausted. All the time. Between dealing with med side effects and symptoms of my diagnoses—especially sensory sensitivity, tinnitus and feeling like someone slapped me on the right side of my head—I often feel overwhelmed. My brain is working overtime to deal with everything. But I am determined to power on. So I write when my vision allows me to do so. I need the distraction, the mental escape, the act of creating which sparks joy within. I do my vestibular rehab therapy exercises designed to retrain my brain. I’m seeing some improvements, pushing myself just to the edge, as my therapist advised. I recognize my limits.
CLARIFICATION & GRATITUDE
I’ve asked my husband to stop telling people I have vertigo, even if he says at least they can understand that. I mostly don’t have vertigo anymore (which, for me, was only when arising or turning in a supine position). My symptoms are much more layered and many.
It’s complicated and a lot and not something most people “get.” I’ve learned a lot in recent weeks. For those who attempt to understand and have reached out to me, I feel grateful. Compassion, care and connecting uplift me as I continue on this journey of retraining my brain, managing, coping. And maybe, just maybe, soon getting eight hours of sleep in a single night. Onward.
© Copyright 2023 Audrey Kletscher Helbling
I’m sorry you are dealing with all of this, Audrey. As you described, it sounds multi-layered with everything connected. I know that you have to constantly balance choosing ‘the lesser of the evils’ as you work through this, with no easy choices. Not sleeping is incredibly hard on a person and I’m hoping that you get some relief very soon.
Thank you, Beth. Sleep is really slow in returning, even now days out from getting off Prednisone. That said, I managed 6 hours last night, albeit in two chunks with several hours awake between. It’s a start.
Give yourself the grace of baby steps
My sister-in-law, who’s suffered two concussions, advised me to do the same.
Oh, Audrey. I’m so sorry. I’ve taken prednisone a few times and luckily it hasn’t had any negative effects on me. I have a dear friend that was basically overdosed by her doctors on it. That was a nightmare. Yes, insomnia was one of the symptoms she had. She also acted like she was on speed. I thought she was going to die. It was terrifying. Perhaps the initial amount that the Dr. gave you was too high? I don’t know. But I’m glad that you’re done with it and hopefully your sleep schedule will return to normal soon. Prednisone is powerful and can work miracles, but it’s dangerous too.
I’m so sorry about the Meniere’s Disease diagnosis. Feel better soon, my Dear Friend. ❤ ❤ ❤
Thank you for your kind words, Penny. I’m sorry your friend experienced that horrible reaction to Prednisone. Even my side effects don’t sound as bad as hers were. I’m amazed you had none, thankful you didn’t.
Vestibular neuronitis is my primary diagnosis and the major cause of my layered symptoms. Meniere’s Diseases is simply tossed into the mix.
Continuing to send ((((((healing vibes)))))) your way 🙂 You know your body best and what it needs. Take is easy
Thank you, Renee. Working hard on my vestibular rehab therapy and taking breaks during the day as needed. My therapist was pleased with my progress. Unfortunately, now that I’m off Prednisone 5 days out, symptoms seem to be worsening again. My ENT will be hearing from me.
Here’s hoping you find some relief. Prednisone and cortisone shots have the same effect on me. The sleeplessness is bad enough but the palpitations are downright scary. As one who struggles with insomnia, it doesn’t take much to keep me awake and wandering the house in frustration.
I’m sorry, Laura. I have always been hyper-sensitive to meds also and try to avoid them unless absolutely necessary (ie, I will push through pain before I’ll take a pain reliever). You’re right on the heart palpitations being downright scary. I am sorry you struggle with insomnia. That has to be difficult long-term.
I do hope your ability to sleep for 8 hours comes back, and you’ll feel better soon.
Thank you, Valerie. Me, too.
I’m so sorry you are struggling with the Meniere’s and the subsequent treatment. As a sufferer of an autoimmune disorder, I can definitely sympathize with the need for prednisone and other medications and living with the side effects. I can offer no practical advice, as you seem to have exhausted all possibilities for relief. I do offer a ton of empathy and understanding, though, and sincere prayers for a quick recovery.
I welcome your empathy, understanding and prayers. Thank you!
I asked my physical therapist if he could somehow enlighten people on vestibular neuronititis. Like your autoimmune disorder, people don’t necessarily “see” it, thus the caring and compassion are not always there. My therapist said, “You could wear a shoulder sling.” I replied, “I have one in the closet (from when I broke my shoulder).” We laughed. The point is that people generally understand something they can see or that is familiar, otherwise not. I would also apply this to mental illness/brain disorders. Individuals with these disorders are treated differently because you can’t see what’s going on inside the brain. We all have so much to learn, so much more compassion we can give.
Hi, I wonder if the tea that you are drinking is an herbal type (or a decaffeinated tea). If not, it may help to try one. I hope you get some restful sleep soon.
I am drinking herbal decaffeinated tea. Stopped drinking coffee.
Thank you for your restful sleep wishes. Hopefully soon. I managed 6 hours last night, which is huge. It was, albeit, split into two parts with several hours in between. but, hey, I’ll take that many hours because I haven’t slept that many hours in one night in two-plus weeks.
Oh, wonderful, I’m so happy to hear that…every little bit helps!!
7.5 hours of uninterrupted sleep last night! Well, except for the usual trips to the bathroom.
Audrey – Super extra prayers going out for you and family to get through this latest life challenge! For a lifelong singer, anything wrong with the hearing sense is life changing. Through the years, I’ve known several, for some reason, usually male. Meniere’s is another one of those age things no specific cause is known, I am so sick of hearing that. My osteoarthritis also suggested meds with side effects I’ve been hesitant about. After a year experimenting a little with nothing positive, just live with the pain, try to stay mobile. There are exercises, but I don’t see there are for Meniere’s, vertigo is a symptom. Keep sharing!
Thank you for the extra prayers, Sandra. I’m sorry you are dealing with osteoarthritis pain. I have the same. That was one nice thing about the Prednisone. It took away that arthritis-related pain. But I would not recommend it for treating arthritic pain.
sleep deprivation; I know the feeling well, Never had a baby – and that will keep you up! I got sleep deprivation in military. That training is what keeps me going these days. I did not get the wife tucked in till about 2 AM, After listening to her breathing rhythm, confident she was resting, I fell asleep at about 3. She then tried to wake me probably at about 5 AM. She finally got me up at 0700. I did get her taken care of and she is now back in bed after giving her some medication and hydration. I even started prepping her “breakfast” but she is now sound asleep and after some nicotine and lots of caffeine I am wide awake at 10 AM. I will most certainly “crash” at some point. My wife can not move on her own so I have already had my share of physical exercise to get that coffee going. I PAY caregivers to come every night so I can actually get some real time rest. Unfortunately, one “forgot” they were on shift and didn’t show up and could not be reached, then arrived late the next night and the following next one had to leave early and last night, due to the storm and vacations, I had no help,
Gunny, what a devoted, loving and caring husband you are to your dear wife. I am so sorry for her health issues and how those also affect you as her loved one and caregiver. Caregiving is a selfless act of love. Yet, it is exhausting and I am thankful you have some help. I am sorry that help is unreliable. You must feel frustrated. I hope the situation improves soon because you need rest and a break, too.
Sorry to hear about your complex health problems. I cannot imagine not being able to sleep properly for two weeks. But lack of sleep hasn’t diminished your ability to write. Your power of positivity comes through. Glad you were able to find joy and maybe distraction in writing. Hope better days and nights are ahead.
Thank you, Bernadette. I’m not feeling all that positive many times as symptoms linger and now seem to be increasing. Sleep would help. A full night of good sleep. I slept six hours last night, which is more than I’ve had in two-plus weeks in a single night. However, it was split with several hours awake between as I dealt with ear pain and a headache.
Prayers continue for this to come to an end. Sleep deprivation is no joking matter and it affects every single aspect of life, doesn’t it? I take feeling good for granted, I know, and this reminds me to be ever thankful.Feel better soon.
Now that I’ve been off Prednisone for a week, I’m beginning to sleep better and longer. Randy told me yesterday that I look better and he hasn’t said that in a month. I am, overall, feeling better with less intense symptoms. Yes, I think good health is something most of us take for granted until we don’t feel well. Thanks for your prayers.