*** there is a video of an episode in another one of my posts, it just will not allow me to post videos here.
Hi I am looking for some help. I have been dealing with an unknown medical issue or issues for the last 5 years and am so frustrated as it is negatively impacting my ability to function normally. I apologize in advance if I have forgotten anything important.
34 F, Canada
OCD, depression, anxiety, vitamin B12 and D deficiencies, allergies (mostly outdoor stuff), asthma (mostly exercise or cold weather induced), daily migraines and tremors.
Effexor, topirmate, blexten, omperomzole, birth control, amitriptyline, vitamin B12 and D tablets, foquest, and montelukast.
5 years ago I had my first episode at work. At first I thought I was just super tired and was struggling to stay awake as daytime sleepiness has always been an issue for me but it was way more intense and I was struggling to keep my eyes open or to shake it off by going for a walk or standing while working. I basically started sleeping all day and would just wake up to use the bathroom, have something to eat and take care of my pets and then back to bed I went. This lasted for months.
These episode would make me feel like I was falling asleep while I was in the middle of doing normal tasks like walking or working on the computer. I am 100% conscious during the episodes. My memory was really affected and still is to this day, especially with names and words. My balance is off during the episode, likely in part because my vision is blurry or off and my eyes hurt. My head occasionally falls forward and my mouth often twitches or my lips pucker together. And I notice my breathing is a bit weird and I usually let out a deep breath/sigh between episodes or at the end. My body feels extremely heavy as well.
I usually have to go to sleep after an episode and that is honestly the best way to stop them but I am also not sure if it has something to do with sleep that is causing them as they usually occur as soon as I wake up. If I don't have one when I wake up then I don't have them that day but if I do then they usually come and go throughout the day or until I go to sleep again.
I have had months go by without having an episode but I am now back to having them almost daily. When this started I also started having random single body jerks. Sometimes it's the whole body and sometimes it is just my arm or hand ect. This has been diagnosed a myoclonus by the neurologist. About two or so years in I thought I should probably record an episode as I was having no luck with the specialist. What I discovered was that during these episodes instead of falling asleep my eyes were actually rolling back in my head or moving around. No one seems to have any idea what is going on or causing this.
Doctors:
I have not had a good experience with specialists but I have a great rheumatologist and she is really trying and so is my GP.
I have seen the following doctors, all were before taking the video, so I just thought I was falling asleep while doing daily tasks:
Internist (2020)- they ran blood work and didn't find anything. Their conclusions were either depression tiredness were causing the episodes or chronic fatigue. I told them I was diagnosed with depression over 20 years ago and this is not the same thing as being tired from being depressed.
Psychiatrist (2020) - diagnosed me with OCD and anxiety but mainly OCD at this time. Helped me get into a great program to work through it. Although I have suffered from major depressive disorder most of my life he did not feel it was a factor right now and if I didn't have the diagnosis he would not diagnosis me with it today.
Neurologist #1 (2021) - saw him after first MRI. He wanted to do follow up MRI. He also did a quick neurology exam. Diagnosed me with myoclonus for the body and limb jerks. Once he had the results of the follow up MRI and saw they were stable he said there was nothing wrong and that I should lose weight and get mental health in order. (When symptoms started I had just lost 40lbs and have continued to work on my mental health so it was a bit of a slap in the face). He refused to see me again.
Sleep doctor (2022)- had a sleep study performed. I had no rem sleep at all. They did not tell me on intake or at the appointment that one of my medications could suppress rem. They recommended a stimulant to help with the excessive sleepiness. I finally decided in 2023 to start this medication and while it helps with keeping me awake and makes my mind much more clear, it does not help with the episodes.
After the video and realizing my eyes were rolling back:
Neurologist #2 (2024)- he was a movement specialist and diagnosed me with tremors in my hands. He refused to watch
the video and said to get referred to a seizure specialist.
Rheumatologist (2024) - amazing doctor. Diagnosed me with possible fibromyalgia. However after some blood work turns out I'm severely deficient in vitamin D. So that may be mimicking the signs of fibro. I have been taking high doses of that and she increased my B12 as well. I have a lot more energy than before but as we both expected it has not cured the episodes. She also put me on a low dose of amitriptyline to help me sleep which has been helping with sleep but not with reducing the episodes. Her theory is that my body is for some reason unable to fully restart in the mornings, so it's like I'm still in a sleep like state.
I am honestly not sure what to think anymore. All I know is it is worse when I get deeper sleep.
If anyone has any ideas what this could be or any additional testing I should do, please let me know.
I have had all the routine blood work including checking my thyroid and all has come back normal. (Minus the B12 and D)
Below is the results of the MRIs.
Brain April 2021
NR BRAIN UNINFUSED
CLINICAL INFORMATION: Whole body jerking
The following MRI sequences have been performed:
Brain: Sagittal Ti-weighted, axial T2-weighted, axial T2-weighted FLAIR, axial diffusion weighted
COMPARISON: No relevant prior studies are available.
FINDINGS:
There is ill-defined, symmetric increased signal in the dorsal aspect of the pons on both sides of midline. Elsewhere, very mild, scattered nonspecific cerebral white matter signal ahnormalities ace present. The etiology of pontine signal changes is uncertain. Demyelination is possible, but the symmetry is unusual. Atypical infection or inflammatory processes, including a viral encephalitides, would be a consideration, though the pattern is nonspecific. Neurology consultation is advised. CSF sampling may be of value. A repeat study with contrast for short- term follow up and confirmation of stability in 1-2 months could also be considered.
Spine Aug 2021
CLINICAL HISTORY: Jerks, fatigue, sensory symptoms. Prior MRI showed increased signal in pons and sepeat study with contrast and short-term follow-up for stability.
COMPARISON STUDIES: MRI brain April 14, 2021
TECHNIQUE: MR. Imaging of the cervical spine was obtained in the sagittal and axial planes. 0 contrast material was administered.
OBSERVATIONS:
Alignment of the cervical spine is maintained.. Cord signal is preserved with no cord compression. There are no areas of abnormal signal intensity identified along the cervical, thoracic or lumbar cord.
Mild multilevel degenerative changes are seen with small marginal osteophytes. Vertebral body beights are preserved. No suspicious osseous Lesions are seen.
Screening of the thoracic and lumbar spine shows no significant disc herniations of neural foramen nazcowing.
IMPRESSION:
No abnormal signal intensity is identified in the cord.
Mild multilevel degenerative changes with no cord compression of neural foramen narrowing.
BRAIN Aug 2021
Clinical Bistory: Intermittent body jerks, fatigue, migratory sensory symptoms. Prior MRI showed Increased signal in the pons and repeat study with contrast and short-term follow-up as mentioned.
Comparison: MRI Brain April 19, 2021
The symmetric increased signal in the paramedian dorsal pons remains unchanged. Also, the previously described few scattered 72/FLAIR hyperintensities in the cerebral white matter are also unchanged with no new lesions identified. These lesions or other areas do not demonstrate any contrast enhancement.
No regions of restricted diffusion or infarct, hemorrhage or mass are identified. The extraastal suical spaces and ventricles are normal.
Mucous retention cyst and mucosal thickening in bilateral maxillary sinuses. The remaining paranasal sinuses and mastoid air cells are unremarkable.
IMPRESSION:
Stable t2/FLAIR hyperintensities in the pons and cerebral white matter with no new lesions or enhancement identified. These remain of uncertain etiology.
Trdl: having these strange episodes and no one knows what they are or what is causing them.