Hello friends! I have a HUGE development and potentially a chance at a major reduction of symptoms and a huge improvement in my quality of life.
I’m sorry for the delayed update. For a while everything was just the same. There wasn’t anything new to report. I was in and out of the hospital a bit and on and off bed rest. I didn’t want to share all of the negatives. But, no big developments…until recently. Now I am totally off bed rest and working on clear goals.
This is going to be a story.
Bear with me, because of my storytelling skills and it gets a little dense…
Back in the summer of 2020, before my diagnosis of Chiari Malformation and then brain surgery, the first thing my primary care suspected was a condition called POTS.
From the Cleveland Clinic:
“Postural orthostatic tachycardia syndrome (POTS) is a condition that causes your heart to beat faster than normal when you transition from sitting or lying down to standing up. It’s a type of orthostatic intolerance.
Each word of “postural orthostatic tachycardia syndrome” has a meaning:
Postural: Related to the position of your body. Orthostatic: Related to standing upright. Tachycardia: A heart rate over 100 beats per minute. Syndrome: A group of symptoms that happen together.”
“When we stand, gravity pulls more blood into the lower half of the body. In a healthy person, to ensure that a sufficient amount of blood reaches the brain, the body activates several nervous system responses. One such response is releasing hormones that help tighten blood vessels and cause a modest increase in heart rate. This leads to better blood flow to the heart and brain. Once the brain is receiving enough blood and oxygen, these nervous system responses settle back to normal.
In people with POTS, for unclear reasons that may differ from person to person, the blood vessels don’t respond efficiently to the signal to tighten. As a result, the longer you are upright, the more blood pools in the lower half of your body. This leads to not enough blood returning to the brain, which can be felt as lightheadedness (faintness), brain fog and fatigue. As the nervous system continues to release epinephrine and norepinephrine to tighten the blood vessels, the heart rate increases further. This may cause shakiness, forceful or skipped heartbeats, and chest pain.”
I had many symptoms at the time, but it only addressed about 40-50% of my full symptom list. That was enough for my doctor to want me to be aware of it. Then I went off to school, got diagnosed with Chiari, moved back home and had surgery. So in my mind POTS was off the table and not something I thought about very often because many of the symptoms overlap with Chiari. I have so many commodities, it’s impossible to pinpoint each symptom to the cause.
Since the second brain surgery in January 2024, I’ve been hit hard with lots of escalating symptoms. For example, when I stand my vision goes completely black and I feel very faint and will have to sit down or lie on the floor. It’ll happen even if I’m lying down and just shift to a sitting position. I’ve not been able to eat much, been very sound and light sensitive, my skin and eyes have been really dry, my bp is low, I am short of breath when I am not doing anything, and lots of brain fog and fatigue.
A few weeks ago I met with a pain doctor (my request, I was so desperate for relief and thought they could help with medical massages or things like that) and it went as bad as it possibly could. He told me it was a psychological problem and that I probably didn’t need the first surgery to begin with. He focused on the notes from the initial neurosurgeon in Seattle who wouldn’t do the surgery and told me not to get a second opinion. He didn’t seem to be very familiar with Chiari, so he talked about anything but Chiari.
When this pain doctor first walked into the room, he made some “jokes” that just didn’t sit right with me. About how thick my file was for someone so young and how confusing it was…hahaha. He said he was confused, so I must be too. Then he said that my problem is because of the syrinx (a fluid collection, like a cyst) in my spine and the patch in the lining around my brain is probably leaking and that I probably need a blood patch. If that’s the cause my symptoms would be different and I would probably need another brain surgery. Now, for those with Chiari and who have had brain/neck surgery you don’t want to mess with your spine like that without good reason and clear evidence. I’ve become very cautious with doctors who just want to poke and prod and throw a diagnosis at the wall to see if it sticks or to save time.
He also did an assessment and said I meet the criteria for EDS (Elhers Danlos Syndrome), but that no insurance would pay for a diagnosis. I’m not sure what “pay for a diagnosis” even means. EDS is something that comes up a lot. There is definitely is a crossover with Chiari Malformation and some of my other comorbidities, but I don’t meet all the criteria. The evaluation the doctor was using was an outdated and incorrect method of testing. I am very hypermobile and fit those boxes, but you can be hypermobile without having EDS. He also saw my referral for genetic testing and told me that there was no way I would qualify for that and that if I wanted to buy a diagnosis then it would need to be out of pocket. I felt completely misunderstood. I am trying to get diagnoses removed and looking for clarity, not to add anything.
I am not going back to him.
That same week I met with a geneticist who he took my history, reviewed my symptoms and decided I qualified for genetic testing. He also initiated an EDS assessment, but didn’t think I met the criteria for EDS. He said there are other types of hyper mobility conditions.
There are four ways the genetics test can go:
Nothing comes back.
One or more gene mutations.
A gene is flagged as a mutation, but there’s not any information on it and it’s unclear if it’s symptom causing.
Nothing comes back now, but as science keeps progressing and evolving something could be flagged in the future. It’s more for information gathering at this point for the future.
There are still so many unknown genes and information surrounding genetic testing.
Later that week I was sharing with a friend, who has POTS, what happened. She told me about Western States University and their POTS clinic, she shared they had really helped her get her POTS symptoms under control. She suggested we call right then and see about getting an evaluation appointment. This was on a Friday and I got in on the following Tuesday. I was stunned at how quick I was able to schedule an appointment.
We were there for five hours for the assessment. It began with a very thorough medical history, a neurocognitive assessment, a neurological assessment, an EDS assessment, and then a NASA Lean Test. One of the issues I’ve been having is getting a formal POTS diagnosis, because there is no one my primary doctor knew of in our area doing a tilt table test, which is what it sounds like and is the common diagnostic tool. There is a doctor at OHSU, but her waitlist is seven years long. The NASA test is a version of the tilt table test that NASA developed because for some reason all astronauts have come back from space with POTS. The NASA test is over 50 years old.
For the NASA test I wore a heart monitor and laid in a dark room with no talking or noise for 15 mins so that we could get a baseline of my heart rate, 66 beats per minute (bpm). Then I leaned against the wall with just my shoulders touching and my feet about a foot from the wall. Over the next eight minutes, while I stood there quietly and without moving, my heart rate jumped up an additional 76 bpm to 142 bpm and continued climbing. I couldn’t feel my heart rate climb, I just felt a little nausea and some mild dizziness.
I was not feeling very “symptomatic” that day, it was actually my best day in weeks and I was worried the testing would not capture whatever was happening to me. That was not the case. 😂 They cut the test two minutes early and instructed me to lay on the table so my heart rate could come down to normal. Then I was led to a room to talk with Dr. Bill Moreau.
Dr. Moreau did something that no other doctor has done before. He told me he was going to tell my story back to me from what he understood and he wanted me to correct him where he was wrong. He began from when I first started getting symptoms at 15 and went all the way up to now. He had the full picture and understanding that no other doctor I have met with has been able to grasp and understand. I was floored by his insights into the different phenomena I’ve experienced with my body. He explained things to me that I had even stopped bringing up to doctors because they just kind of stare at me and move on.
The reason why he understands so much is because he is a researcher and Sports Medicine doctor who runs a Concussion Clinic. He was part of the NFL International Think Tank on Concussion Research that changed the way concussions are treated. He was also the Vice President of Sports Medicine at the United States Olympic Committee for ten years.
Brain surgery (surprisingly…) counts as a brain injury (mild traumatic brain injury)(mTBI) )along with the actual compression of my brain for who knows how long. It honestly seems like such a simple solution and kind of obvious to be treated as having a brain injury, but for some reason that hasn’t been the case. I have no idea why no one has approached my case through a brain injury lens, but it makes sense and it has opened a whole new world of recovery to me. It is a huge answer to prayer.
Dr. Moreau diagnosed me with Dysautonomia, POTS is a branch of that. Some people develop Dysautonomia after a brain injury. 1 in 5000 people have it. He explained that research on it is moving from the fringe of science towards the middle because so many people have developed it as a result of Long Covid. He told me it is not in my head and that the symptoms they are measuring are things like my heart rate that I have no control over. He said it is impossible for me to make my heart rate jump like that. I know that, but it felt really good to hear it from a doctor. He shared that he isn’t going to be going off of my feelings, he is going to be working with measurable criteria. He used a computer analogy. He said that my processor and memory are working, but the CPU is broken. They will help my brain rebuild the pathways between the two.
Dysautonomia is the missing piece that contains a reason for all of the random symptoms I have been experiencing that my doctors have been struggling to understand. This chart captures most of it, it is just missing sleep.
“Dysautonomia is a nervous system disorder that disrupts autonomic body processes. These are automatic functions like your blood pressure and heart rate. Having dysautonomia means these functions don’t work properly, causing disruptive symptoms. These symptoms are often manageable, but diagnosing and treating dysautonomia is sometimes difficult.”
He also asked me to be part of a POTS study to show the need for active interventions (PT) so your brain can heal. I agreed. The idea is to create new neural pathways and to teach my brain how to not freak out when I move.
So, I’ve started this protocol where I go twice a week. My calves are wrapped with 6″ ace bandages for compression and I wear a heart monitor. I work one on one with a resident who leads me through a series of exercises for 60-90 minutes. The first two weeks are supposed to be the hardest as your body adjusts and your brain is pushed.
The other big thing the doctor recommended is getting prism glasses. He could tell by looking at my eyes that they weren’t aligning correctly. He explained that if we were sitting side by side with our eyes closed we are both running at 100 horse power. When we open our eyes, I lose 40 horse power as my brain tries to compensate for the misalignment.
He referred me to Dr. Elizabeth Powers, a neuro ophthalmologist who specializes in helping people with brain injuries. I met with her and she again did a detailed history and a lot of testing. She explained that the Dysautonomia is causing my body to be stuck in fight or flight, so we have to work on calming my body down. I started wearing the prism glasses a few days ago. They are tinted a mango orange and I wear them over my contacts. Glasses with an orange tint block out blue light, which helps our bodies’ circadian rhythms get back on track easier and should help improve my sleep. I am still getting used to them because they are physically retraining my brain to see in a different way. I should notice a difference in 3-4 weeks.
Dr. Powers also recommended blue light therapy for my eyes. She said that it will help to reset the biochemistry of my brain. It helps to reduce daytime drowsiness, brain fog and should help me sleep better. I am scheduled to start that next month.
I’m also still working with an Occupational Therapist, who is helping me with things like time management. We made a binder where I can visually see the days and my activities with places for notes. We’re putting together a tool box too with things like grips for helping me hold my pens and various ear plugs to help with sound sensitivity.
I’m still doing physical therapy for balance and mobility with the physical therapist who I’ve been working with for almost three years now. She is amazing and has been a key part of my team on this journey. There is also speech therapy and strain counter-strain therapy to help with overall pain relief.
There are still many symptoms I’m struggling with and some days are better than others, but I’m learning to manage it. I’ve made a bag I carry with me filled with ice packs, ear plugs, electrolytes, vomit bags, ginger drops, and anything else that might help me when I’m out and about, going to appointments and trying to live my life.
The hope is this clinic will be able to help me. I should know in two to three months if my body is responding or not. If I am a “responder,” then I will continue with the Moreau Protocol for the next 1-2 years. There are no guarantees, but hope that I will eventually be able to drive again and go back to school.
Prayer points:
Endurance I’m feeling exhausted. This protocol is a lot of work and I’m tired. I’m in my second week now and some days my symptoms and head pressure are bad and I lay down with an ice cap on my head. I also go to the other therapies, so next week there are five appointments.
Response Please pray that my body responds to this therapy and that I can enter into the long term treatment phase.
Hope It’s still a lot to process and I feel excited, but also a little bit of some “tempered hope” as it was said to me. I’m trying really hard to keep going and to be hopeful but at the same time there’s a part of me that doesn’t want to hope too much. I don’t want to get my hopes up too high like I did for my first surgery. It’s mentally exhausting.
Trust Going back to looking at the way I ended up at the clinic and how fast I got in with them and then quickly in with the neuro optometrist and I’ve already received the glasses two weeks earlier than expected, it’s clear God has a hand in this.
My mom took me to see one of my favorite bands, Cain and they sang a new song called, “Wings.” I thought it was funny because when you look up POTS and Dysautonomia memes there’s sayings about being “allergic to gravity.” “Wings” is a new song about feeling heavy and having troubled times always trying to bring you down. Then about how we’re gonna fly with wings like eagles because “gravity” has no grip and then to soar to new horizons.
Thank you all so much for your continued prayers and support. This is a long journey and I am glad I am not doing it alone.
God bless,
Shae
This is my song for this next season.
"Wings" by Cain
“Heavy days, heavy heart, got that heavy burden Weighing on my shoulders now Troubled times, troubled mind, got that troubled feeling Always tries to bring me down
The world can wait 'cause I'm gonna wait on You I feel my spirit lifting when I do
I'm gonna fly with wings like eagles Soar high above it all Gonna rise to a new horizon Yeah, watch my worries fall Gravity ain't got no grip on me 'Cause I've got wings Oh, you know I've got wings, yeah Oh woah
I might be down here, feet stuck on the ground here But You keep my head above the clouds All of the problems, way too big to solve 'em Are so much smaller looking down 'Cause only You can change my point of view I feel my spirit lifting when You do Oh-oh I'm gonna fly with wings like eagles Soar high above it all Gonna rise to a new horizon Yeah, watch my worries fall Gravity ain't got no grip on me 'Cause I've got wings
Yeah, I've got wings Oh woah Mmm
Here we go
I feel the roof coming off of this place Coming off of this place I feel your spirit renewing my strength Yes, Lord I can hear heaven is calling my name Yeah, yeah
And I feel the roof coming off of this place, yeah And I'm gonna fly with wings like eagles Soar high above it all Gonna rise to a new horizon Yeah, watch my worries fall Hey Gravity ain't got no grip on me Oh yeah, oh yeah 'Cause I've got wings
Weathering Chiari 