I'm finally posting this explanation I wrote up a while back of one of the thorns in my side: Migraine with Brainstem Aura accompanied by Disorders of Consciousness
https://www.dovepress.com/migraine-with-brainstem-aura-accompanied-by-disorders-of-consciousness-peer-reviewed-fulltext-article-JPR#t0001
https://migrainetrust.org/understand-migraine/types-of-migraine/migraine-with-brainstem-aura/
For so long, I've been experiencing this disordered consciousness and calling it "passing out," even though that doesn't describe my experience at all. I don't remember which of my many neurologists mentioned basilar migraine or brainstem aura as being responsible for these horrendous episodes.
But I feel the need to describe them better, because while it sounds easier to say, "I was passed out for 2 hours," it frustratingly miscategorizes the horrific experience.
So, here's what I tend to experience. Honestly, it used to have a much more perfect shape of typical migraine aura, but with chronic intractable migraine, this state comes and goes without the same form it might otherwise have (and used to have for me before progressing to a chronic waxing and waning state.)
Frequent symptoms:
I might start with a yawning spell or get the chills. This prelude used to happen more but less so now. It was a nice dead giveaway that I was about to be overcome.
I do tend to have tachycardia in the hours before an episode. Around 100 or higher, depending on the heat or severity.
Vertigo
Tinnitus
Tingling in legs/arms/head
Abdominal inflammation/heartburn
Heart pounds as I feel extremely heavy
All sounds become amplified to a cartoonish degree, and they tend to startle me.
Difficulty speaking followed by difficulty understanding
Eyes get very heavy as heart pounds with tingles up and down my body
Full body aches and head feels like imploding
Face feels like a mask that I can't move
Intense sensation of nausea as paralysis sets in
I tend to go in and out of consciousness, being disturbed/startled by any sound or movement. I also get the sensation of falling into unconsciousness repeatedly. Hard to describe.
At this time, the body feels like it is making a massive effort to remain conscious. It is not a restful feeling with all of this chaos happening in the body.
During severe episodes, I can track the time I lost to full unconsciousness, where nothing could rouse me. This lasts up to 3 hours. (I have had Neuro checks while in this state and found to have no reflexes.) But quite often, I actually come in and out repeatedly for hours.
I tend to come to awareness of my surroundings first without being able to move, then gradually recovering. As I gain alertness, I sometimes have a sudden need to evacuate bladder/bowel.
After I am awake, I lack coordination, have vertigo, and the pain of the lasting headache sets in. Location is usually generally pretty global, focused above both temples with continued tingling scalp and tinnitus. Sometimes icepick headaches follow.
This is absolutely not a restful state. It is like a storm going on in my body. In fact, migraine has been described as an electric storm in the brain, which alters blood flow and causes inflammation of the meninges and nerves.
https://www.everydayhealth.com/outside-in/what-happens-body-during-migraine/
Following an episode, I remain in a state of cognitive overwhelm, my brain tiring quickly from any type of stimulus, leading to frequent mental shutdowns. I can fall back into a stupor mid-sentence.
New migraines come in while the previous one is still in progress, leaving me in this state constantly to varying degrees.
The experience is reminiscent of symptoms of a traumatic brain injury. Brain rest is the only relief. Minimal light, sound, movement, talking, and cognitive effort. I have a lot of trouble understanding what is being said, following a conversation, and retaining information.
This is not a fleeting state. And it is not a nap. It is scientifically classified as stupor/coma in the above studies, the coma version confirmed by my failed reflex testing.
An incredibly frustrating part is the cognitive overwhelm triggering more and worse episodes. This leads me to avoid interacting beyond necessary much of the time. Even talking can set it off.
I have reached this point for various reasons, primarily inability to tolerate migraine treatments, although they had already become largely unmanageable when that happened. Either way, untreated chronic migraine can lead to a transformation into a state of constant migraine. Mine just happens to come in various shades, including various types of migraines.
OK. That's my explanation, for the record, of my experiences with frequent loss of consciousness.
Now, I would like to continue sharing my day-by-day journal of symptoms and challenges.
April 8
I had to switch my rings to my right hand, because for the first time, they won't stay on my left. That must be a further show of deterioration. I need to take video of my movement to document what is happening. My legs won't straighten, so I'm hunched. I can usually only take the smallest steps with legs staying at the same angle of somewhat bent. My leg muscles are visibly wasted, and they ache terribly. I think this is where the weight loss came from.
Just 11 days after my last house visit/car ride, when the switch flipped giving me a whole new body, I painstakingly decided to go on another house visit. G was incredibly careful with the route and the driving. Incredibly helpful moving me around. It was very sad to learn that I cannot navigate even a single step anymore. He had to take basically my whole body weight going up a step, and I rode on his back going down the steps. We couldn't have done any better to be as gentle on my body as possible. We did well. But not well enough to avoid consequences. I did not feel nearly as shaken up as last time. But I did go in the house, and it was not unscented to me. Fragrance was evident. As always, it's immediate upon opening the door, I'm aware of the fragrance. I don't know why I even go in. It's instantly evident. I guess a part of me wishes it will be a scent that is highly localized somehow or that it is a scent that somehow won't hurt me. But that is delusional. Right after the house, I developed a new left ear/swallowing type of pain. And upon arriving at home, right after rinsing my sinuses and drinking some baking soda for the horrendous heartburn, I was struck with the brainstem aura with prolonged, repeated loss of consciousness yet again for over two hours. All the horrendous accompanying sensations. All sound amplified and painfully startling. Heart pounding. Burning face. Body feels like it weighs a ton when I am paralyzed. Repeated sensation of falling while passing out over and over again for hours. I don't know how long I was actually unconscious and how long I was in and out. It felt endless. It was hours before I could rouse myself enough to eat a meal.
***And I'm interrupting my diary notes to say that this has happened during the same time of day every day since that day. 7:00-9:30 seems to be my new aura window.***
Upon rousing, I had marked weakness, needed help walking at first, and also needed help to open food containers. I had lost so much strength and could barely lift a container with a few cooked vegetables inside. My knees are also burning more than ever before. My heartburn is insane. Fever at 99.9.
Admittedly, this isn't close to my worst episode. I don't know how tomorrow will be. My fever and cough are not as bad as they have been. Fever peaked on April 6, I believe, at 100.9. I've been sweating through my clothes and into my sheets with this fever every night since March 28th, that fateful day.
Life is about to get much harder with the temperature. I won't have the luxury of passing out in my recliner, and trying to manage to do everything in the bedroom will be even harder. Being confined to only one position with nowhere to be but bed increases pain and weakness so much. It's very hard on my sacrum, tailbone, and spine. Getting in and out of bed is getting close to impossible. And eating whole meals in the bedroom cannot be how it was before, since it was a careful balancing act using the bed tray. I now can't really get my legs under the bed tray since they don't bend far enough. These warmer months will be so hard. Never any peace and quiet, because I'll never be able to be in a room without the purifier on full blast. Relentless scents and wind. Plus, that air purifier heats the room up another 3 degrees. Unfathomable in these upcoming warm months . That's just no rest. And functioning will be even harder. I won't be able to hurry around to avoid the scents, because my body only moves in slow motion now. To a shocking degree.
This is why we keep searching. But another lesson we learned today is that I cannot even manage a tiny stair. So a flat surface will be necessary. This place was almost impossible to get around, even the tiny space. I am going to be getting an upright walker and hoping to be able to use that for some time before full wheelchair. I would get one now, but it's difficult to imagine being able to use it in this space. But it would be downright impossible to get around ground that isn't flat. G had to lift me, again, as an invalid over a few of the steps. Basically a limp body. It is hard to describe how bad this feels, despite being a self-accepting disabled person since my 19th birthday. My first wheelchair was all relief. There was grief, of course, but I don't mind using a wheelchair part time. However, I am fully unequipped to manage life without any mobility. I think many spatial changes would be necessary. But the problem is that it's not just the walking. It's needing assistance with nearly every activity of daily living. Sure, I'm toileting myself now. But that's because my left hand can still manage that most of the time. But it hurts. And the left hand won't hold on forever. The right hand is almost useless. I also have the most trouble walking when I first wake up, for that first bathroom trip. I can barely hobble my way there, despite trying to stretch and straighten my legs before standing. My legs are bent in a deformed way with muscles shriveled away. I am not able to accept this right now. That this is just how it will be until it gets even worse.
Anyway, all we can do is use this info going forward. All that we learned today, we will use. I feel less confident each time the door opens to a scented home that is meant to be unscented. I don't know how to keep hoping. I don't know how to keep using my body as a test dummy. How to keep abusing myself that way. I don't know how I will ever find my place. And what will be left of me when I finally do?
April 9 more prolonged and transient loss of consciousness. Preceded by yawning spell (very painful yawning) Pain in left ear/jaw became a 8-9 with yawning and swallowing.
Digestion got dysregulated by being unconscious so long yesterday and again today and meals running late. Heartburn and bloating are the worst, along with loss of bowel regularity. More scent issues today, but I didn't retreat to the bedroom yet. Days are numbered. Knees are very bubbly, stiff, and hot. I would ice them all the time, but the cool only lasts a few minutes since my knees put out so much heat. G stayed home from Easter to be with me, and then I was mostly unconscious. Cough persists daily, worsening at night. Fever not too high. 99.7 Not sleeping as well/long as I was. Mid back pain, presumably from hunching so much.
April 10 Had trouble sleeping last night in the warmer bedroom. (77 degrees) Air purifier adds 3 degrees. Very hard evening. Losing consciousness for a while. That horrific feeling I can never get used to. Intense left ear/face pain. Had to cook a lot of food unaided (with tomorrow being a warmer day, I don't know if I will have access outside the bedroom). Then, I had to shower. Coughed so hard during the shower and after. It feels difficult to breathe. Could barely use hands to wash my hair in the shower. Body ache and pain afterward intense. Widespread 8 with some hot spots. Feeling nauseated and short of breath and hot/cold. Temp 99.8.
April 11 Slept in warm bedroom (77.5). Couldn't sleep enough. Woke up with fever of 100. Some daytime exposures due to warmer temperatures and vape fumes. 6:30-8:30 passing out time again. Fresh air access at night. Asthmatic breathing/coughing constant since last night. Nighttime fever 100.6. Hot and cold. Jaw/Facial pain less today. Joint pain a half a degree less today (maybe?). Plaques are softening/fading. But fever and cough are persisting. Cough is the worst it has been. Very feverish late 100.6, 90/60p90. I cannot sleep well due to the elevated temperature and fever and pounding heart.
April 12 Bedroom confinement all day. 79.5 degrees for sleep and daytime. Neighbor used horrible fragrance today. Stinks up the lobby and our bathroom worst, but detectable throughout the apartment. Also repeated vape exposure inside and outside my open windows, filling the place. Fever same 100.5. Asthmatic cough again. Lung pain.
Unbelievably bad walking after rest time. Not sure how to keep walking to the bathroom when I wake up. Legs no longer straighten under any circumstance. Shrinking leg muscles feel like they're dying painfully. Barely any leg muscle left. Progress has been so fast. Everything deteriorating. My legs don't straighten, but I can also hardly bend them. The bubble popping inside the joint is worst when I try to bend my leg to sit down. More severe in right knee. I haven't figured out how to reliably avoid the excruciating pop. But I have no choice but to try.
Bedtime vitals (6am) 88/60p98. Bedroom temp 80.
April 13 only slept 6:30-12:00. Worried about the effects. More summer weather and bedroom confinement due to smelliness.
Day full of consciousness struggles! No naps. No drifting off. It's the migraine with brainstem aura symptoms more or less the entire day. This is NOT the same as when I used to pass out from low blood pressure or blood volume or whatever. This is a horrendous state. A neurological storm. I did not get to rest all day. My body could not rest with the onslaught of symptoms pushing me in and out of consciousness. I struggled most between 2 and 3, 4:30 and 6, 7 and 9, 10-10:30, and again 1-2am. I missed class, which I never do. Not sure if this would have been avoidable if I had tried to "let" my body continue "passing out" all afternoon. I think the amount of sleep deprivation plus the hot apartment (79.5) were way too much. Plus the overnight fever. I desperately want to figure out how to sleep when I have a fever AND the apartment is hot. I think I need to time my meds differently and plan for biphasic sleep again, but that means two wake ups, and waking up and getting out of bed is a horrible time in my day. I don't want to do it twice! But sleep is too essential to avoid more brainstorm auras. My heart rate has been in the 90s again all day. Fever a bit lower. My body feels so hot, but is only 100.2 tonight.
April 15 Another horrible, hot bedroom day. Sleeping at 80 degrees is sickening. Biphasic schedule necessary to make the meds last longer. So my day started after 3pm. Confinement in 80 degrees bedroom. Heart rate often above 100. Brainstem aura from 7:15-9:30. I came out slowly for the need to eat. Stayed conscious after that, but felt awful. Finally fresh cool air from 1:00-4:30. Bedroom down to 72 to start. Hoping I can sleep better despite fever asthma and heartburn (and joints, of course).
April 16 We had a nice cool down, and after a night exposed to clean cool outdoor air, I slept comfortably. (Although I'm still sweating through my sheets with this fever.) (Bedroom about 73) Waking up, movement was excruciating. Today, much cooler but big pressure drop along with storm and temp drop. Body pain was terrible. Mobility and hand ability were low. Hard to hold things. I needed my walker much of the day, although I still can't put any weight on my right wrist. Left hand is more functional but still painful. Back is getting very sore from hunching so much of the time. Terrible bubble pops causing worse stiffness. Fever consistently 100 today. Asthmatic cough got worse at night. Invasive fragrance improved with temp drop. So I got to relax in my recliner finally after a shower. Just barely maintained consciousness today. Each day is an enormous struggle. Cannot imagine continuing at this severity.
April 17 Apartment is nice and cool, although quite chilly when I had to ventilate with no heat. But worth it, as usual, to get fresh, clean air, whatever the temperature. With a cool bedroom, I was able to sleep all in one go again. A hot bedroom is TERRIBLE for insomnia (especially with a fever). And we were at 80 degrees in the bedroom. I still had my overnight fever sweats. But I woke up easier. Fever has been 99.7-100.3 today. Feels terrible. I actually functioned a little more independently today. I ordered a new upright walker to try to help with my mobility limitations, inability to put weight on wrists, and increasing back pain from hunching too much. In my mid-morning time (about 4-5pm), I was tachycardic and weak. Heart rate 103. And my body seems to have found a new circadian schedule for when the brainstem aura tends to come. It seems to be happening more often between 7:30-9:30 at night. I'd normally eat my third meal around 8, so this really interferes with my eating schedule. My knees have been bubbly and warm as ever. There's the extreme stiffness when I first stand up, and then the longer I stand, the more bubbles I seem to accumulate, making the next knee bend so painful. Hands and wrists are the same. Asthmatic cough is worse tonight. And it really aches in my ribcage when I cough, probably pleurisy again, but it could be muscular, I guess. I almost published this update to my blog, but then got distracted reading my blog, which happens so often. I guess I find myself endlessly entertaining! Not really. It's actually really hard to read that my life is on a revolving and ever-worsening loop of suffering. I've yet again noted that there's no point in expressing emotions, because I've already expressed them all, for years. I also noted that I was totally wrong about no fever flares since 2020. I absolutely haven't gone a year without it.
I had a tough decision to make today. Whether or not to venture out again already, in the midst of this bodily thunderstorm, to visit a house. There's been a shift in the housing market this week that is not in my favor. A house I was interested in over the weekend had 40 house visits in the first two days on the market. There is no possible way to clear out the scent of that many visitors. And there's no time to ask screening questions. And there's no time for someone else to visit first and pre-sniff the house for me. So there was a cute little house in a cute little neighborhood, vacated, that I could have gone to visit tomorrow. But without screening questions, I had to rely on photos. And a can of air freshener (f-er) was visible in a main floor bathroom. Based on everything I've seen so far, there is no way that house won't stink at first entryway whiff. Not to mention a more practical matter that I cannot walk stairs! And there are stairs to get into the houses. Gustavo can't come with on a weekday, so there's no one to lift me up and down the stairs. It's not that stairs hurt. It's that I'm now literally incapable. So I believe house shopping will have to go on a hold, preferably at least until my fever and asthma stop. Even more ideally, I would come a bit more out of this flare and get a slight pain reduction and increased functioning. I know I've had fever flares before. And they end. So I just need to wait it out, I think. But with the tumultuous barometer and plenty more hot nights ahead, my body will be under plenty of stress. So I'm not sure when it will calm. I can't imagine going on if it doesn't calm. I am trapped in this torture chamber body. I need a break. A respite. At least I'm in the recliner again today, and I can expect a possibly decent sleep again in this chilly apartment.
April 18 I am very at peace with having made the right decision to not visit the house today. My fever started at 100, never lower. Up to 100.7 tonight. My heart rate hasn't been below 100 all day. All signs that my body is in high distress, and this flare is not slowing down. Also, I finally attended part of a Spanish group chat, but I wasn't able to talk due to the breathing issue and coughing. My triggers for asthmatic breathing and coughing seem to be: eating, allergens in the outdoor air, and evenings. Although today, it was nearly throughout the day. I am so tired of coughing and not getting a good breath. This is nothing like the throat closing spells of my teens. This, I feel in my lungs. I bet an inhaler would feel good if they weren't full of triggers. Although I don't need that crazy, manic energy.
I had yet another brainstem aura episode from 7:30-9:15, although I felt it coming a lot longer. I was also getting skunked by the neighbor vaper, yet again. I am so relieved the temperature has been lower, so I can sleep better. I know it won't last, but I'm so grateful.
My knees are as horrible as they've ever been. My muscle wasting looks crazy. I'm not sure if I should share photos, because they just look so ugly and deformed.
Oh well. I might as well, for the record. I honestly just want there to be a record of what happened to me. I lost another mast cell friend recently. Another truly tragic loss. It's hard to bear. When they tell you people don't really die from mast cell disease or autoimmune disease, they're lying. Yes, the cause of death tends to be more complicated. But these complications can and do happen, and they are incredibly difficult to manage (especially for those of us that don't tolerate medicine, like my friend).
I'm sorry for the repetitiveness of this post. It was written at many different times. Thanks for reading and caring.
Thanks for checking in. I expect to write again soon, as it seems that journaling has become a helpful tool again. I'm not proofreading, however, if you couldn't tell.
