Demystification

Prednisone

It’s been eons since I’ve written. I had a bad bout of depression and insomnia. Not saying that either is gone, but now I’m on prednisone for another intractable migraine and I just hate how it makes me feel and I wanna vent.

I feel like my legs aren’t part of my body. The past few days they’ve just been moving of their own accord. Maybe like a cross between myoclonic jerks and restless leg syndrome? I’m not sure. I had nine medical appointments last week and I’m depleted.

My heart rate is very low for me (93 BPM resting), but it feels like it’s so fast. I have postural orthostatic tachycardia syndrome, so usually my heart rate is high and my blood pressure is low.

I got a lot of sleep last night and when I woke up, I whispered to my husband, “I feel better. Don’t tell anyone!” He said he could tell that I felt better. But then I took the prednisone and I’m back in the PredniZone.

A graphic that reads “Warning: I’m in the Zone … The PredniZone.”

I want to do things, but my body isn’t cooperating. I managed to wash some dishes and fold some laundry before the myoclonic jerks kicked in again. I want to take a shower, but that’s such a daunting task. Sigh.

The upside: I’ve been fully-vaccinated. I got my first dose of the COVID-19 vaccine in January. My husband is scheduled to get his first dose later this month. I started a new medication that I hope will help with the “spells” I have. (I had another abnormal EEG last week)

For now, I’ll try to calm myself with some music or entice a cat to sit on my lap. The cats really help! I’m so lucky that they are in my life. And that my husband just brought home Eggo waffles. I’m like “Eleven” from Stranger Things and live off of them.

Upbeat

She wears a pink hospital gown and black face mask. — Amy strikes a hospital glam pose in radiology

I am at the end of a week that had six medical. Having a degenerative illness is a full-time job. I’m exhausted, but feeling upbeat.

My thoracic spine has more degeneration. I am in the midst of a gastritis/gastroparesis flare. I’m starting a new medication for postural orthostatic tachycardia syndrome, which is why I’m feeling upbeat. Though maybe I should say downbeat? The medication should help decrease my heart rate and increase my blood pressure.

Now I’m thinking of that movie Backbeat about The Beatles that starred Sheryl Lee.

Anyhow, my neurologist and cardiologist think that my “seizures” might actually be vasovagal syncope episodes that are being triggered by the postural orthostatic tachycardia syndrome. The new medication could help prevent those! This is very exciting news.

Now I’m going to relax by retreating to my island in Animal Crossing.

Cancer-free!

I’ve been cancer-free for six years now. I’m happy to share that my annual screening test results are back and that I am still cancer-free! Woo-hoo!

Sigh

My tendons are shot because of being hypermobile. My ankle gives out all the time and I lose my balance. Sometimes I fall. My right foot feels all crunched up and every step I take is painful.

My foot surgeon (named Dr. Martin 😂) left my hospital so I was supposed to see a different doctor in March. Dr. Martin had performed joint stabilization surgery on my left foot in 2015. The last time I saw her, we had discussed tendon reconstruction surgery on my right foot. I was still working full-time then and couldn’t afford time off.

Of course the appointment with the new surgeon was canceled and rescheduled and then canceled again and then scheduled with a nurse practitioner (NP). I tried to get an appointment scheduled with the doctor, but I was told that they didn’t have any openings.

My knee surgeon said it would be worthwhile to have the NP triage, but he was like, “You need to see the doctor.” So of course, I saw the NP (who is top notch, BTW) and she was like, “You need to see the doctor.”

SIGH. Going to the hospital is nerve-racking enough and now I feel like I wasted my time. The upside is that it was nice to see the NP (I’ve seen her for five years now) and she told me that she had been thinking of me because she had a couple of hypermobile patients. Having seen me today, she’s thinking of reaching out to them to talk to them about Ehlers-Danlos syndrome.

Tomorrow, I have my annual cancer screening (I had cervical cancer) with my new gynecologist, Dr. Johnson. My previous gynecologist, Dr. Dick, has retired. I kid you not. I think my doctors are using aliases. 😂

Sleep Deprivation

I can’t sleep. But that’s good because I’m having a sleep-deprived EEG in a few hours. I could sleep for up to four hours, but that’s not going to happen. I’m far too anxious about my first hospital visit since the pandemic started.

I’ve been anxious all weekend. In addition to being nervous about going somewhere where people have COVID-19, I’m on a course of steroids for an intractable migraine. The steroids make me more emotional and prone to “roid rage.” My partner has been very, very patient with me this past weekend!

Our cat, Candy, has also been wonderful. I swear that she knows when I need her to calm me. She’s the best unofficial emotional support cat! I’m so thankful for the two of them.

But I just want the EEG testing to be over. My new neurologist ordered it months ago. I started seeing him late last year and so far, I’ve been very impressed with him. He’s already treating my headaches and is taking over my seizure care from another neurologist. He wants to get a baseline EEG done.

This will be my third sleep-deprivation EEG. I’ve also had two ambulatory EEGs, multiple sleep study ones, and one multi-day in-patient video EEG. The most recent one was the in-patient testing, which was done in 2018. My EEGs all show that I have abnormal waves in the left temporal region of the brain. They have not captured a seizure on EEG, so the doctors cannot rule out epilepsy.

Since 2018, I’ve been on a high dose of Gabapentin and that has helped a great deal. I haven’t had a seizure-like spell since February, when I was very sick with the type A strain of the flu. I write “seizure-like” because it’s possible that what many have called seizures could actually be vasovagal events that look like a seizures. I do have vasovagal syncope and postural orthostatic tachycardia syndrome (POTS), so the vasovagal idea is intriguing.

I’m hopeful that this new neurologist can get to the bottom of my headaches. This current migraine has been with me since June 18. I’ve gotten some relief with the steroids and rizatriptan, but the high heat and humidity have really been doing me. Pandemic anxiety is not helping. Our president retweeting a video of a supporter shouting “white power” is not helping.

Fingers crossed that I don’t pick up anything while I’m at the hospital. The steroids compromise my immune system and I’m already asthmatic, so I’m one of those high-risk COVID people. It’s terrifying for me. I wish people would take coronavirus seriously. Please: wear a mask and when there’s a COVID-19 vaccine, please get it. I’m selfish and want to live.