Drowning Doesn't Only Happen in the Water
Photo by Daniel Torobekov from Pexels
Drowning Doesn’t Only Happen in the Water
As I got off the bus and the sun hit my face, I thought I was walking into a perfect day. Growing up in North Central Texas, we don’t have any true lakes, only man made ones that are rather stagnant and gross in my opinion.
I was 16 years old and on the beaches in Galveston for an annual marching band trip. A typical reward for a winning season was some kind of small weekend retreat or fun event to congratulate us for being state champions. The day was incredibly beautiful. After a quick change of clothes to a swimsuit, I was running towards the water. Growing up with a pool, I always felt a bit like a fish out of water when I wasn’t swimming. I was never one for the competition, but I love the weightless feel, the way the salt dries on your skin when you get out, and the feeling of sunburn on your nose and cheeks. I couldn’t imagine a more exciting time than being on the beach with my friends.
As I headed to the water, a friend’s little sister stopped me.
“Are you going in?” she asked, with eyes reflecting both excitement and fear.
“Of course” I replied. “I love the water” I said, and paused … “Would you like to go out there with me?”
She hesitated before admitting, “I don’t know how to swim… and I’m not sure it is safe for me to go… maybe I should just go sit with my brother…” , but her eyes said something different.
I told her, “we can always go out a little bit into the wave, like where your feet can still touch the ground.”, I paused to let her process and continued, “Would you like to do that?”.
She nodded enthusiastically, so I took her hand and continued towards the water. We had walked out until the water was about 4 feet deep when I saw that fear enter her eyes again.
I said, “don’t forget that when the waves come, just jump a little and you’ll stay above the water.”
Suddenly, there was a larger wave coming towards us faster than I could pull her back into shallow water. In her panic, she grabbed my shoulders, pushing me down into the wave to keep her head above the water.
If you’ve ever spent time in the waves, then you know that they have a cycle. You have to carefully time when you come back up or else you could get pulled back down again. A weird mixture of terrified and calm filled me as I counted and followed the energy of the wave to try to get to a safest time to resurface. It felt like minutes down there, in the sensation of both the silence under the waves and the weight of the wave’s energy, even though I am confident it was only seconds. It is a sensation that is so hard to explain that I’m not even sure that someone could understand unless they have also had this experience. Over the years, I’ve experienced that same sensation of fighting emotions a few times, and August of 2020 was one of those times.
It was early in the morning, on August 6th, 2020, when my life was turned upside down. My husband works 12 hour shifts, so spending time alone and having to navigate assistance with rides to appointments or help cooking was not new. I’ve never been “healthy” per say. I was born with a genetic condition called Ehlers Danlos Syndrome(EDS). My comorbidities include hyperadrenergic and low blood volume positional orthostatic tachycardia syndrome(POTS/Hyper POTS), supraventricular tachycardia, atrial flutter, leaking heart valves, gastroparesis, chronic intractable migraine, trigeminal neuralgia, chronic autoimmune urticaria, Von Willebrand's disease, thoracic outlet syndrome, chronic subluxations and dislocations, and more torn or partially torn tendons and ligaments than I can name just to provide you with a bit of context. However, that morning, I experienced head pain on a scale that I had never felt before, and that’s a hard thing for a migraine patient to admit. I couldn’t stand up or even sit up without vomiting. My eyes were so sensitive to light it was almost hard to breath. At the same time, my pupils were so dilated I couldn’t even read my phone. I felt like my brain was sitting in acid and that my eyes and brain were being sucked down into my spine. I pressed the home button until I heard Siri’s voice, “call mom” I begged through the tears.
My heroic parents dropped everything to help me to get to my headache specialist’s infusion clinic. I was just a ball of tension and tears by the time they were able to see me that afternoon. I honestly was not sure that I wasn’t dying, and I didn’t even know if my doctor would be able to treat me when they saw what bad shape I was in.
When I got there, the nurse practitioner came in and said, “have you ever had a headache like this before?”.
“No”, I cried…. “My brain is on fire”.
They ran STAT imaging on their CT and hooked me up to an IV. They explained that they would change up my protocol to help with this new pain. After sleeping most of the day in their infusion center with minimal change, I was sent home with orders to come back the next morning at 8am.
When we arrived the next morning, the greetings were more stern, and the nurse practitioner was obviously overwhelmed by the business of the clinic.
I told her, “my head seemed fine until I stood up… and then it was so bad that I was sick and couldn't even get dressed.”
There was a change in her body language after I told her what had happened. She told me, “this clinic is only meant to be utilized for emergencies… seeing a patient day-after-day is a burden on our resources here. If you don’t have abortives that work at home, then you have to see your doctor” she pause, “in fact, my treatment today will be a favor, so you will not be allowed back until after you have seen your provider.”
Tears fell from my eyes. I was not lying or exaggerating. I was in excruciating pain and getting a lecture on how it was my fault that my medications were not working. In fact, some of my medications seemed to be making things worse. In that moment, I felt the same sensation I felt at the bottom of the waves. I was stuck in a cycle I had no control over and praying that I could hold my breath long enough to reach the surface. I was back there, drowning again, unsure which way was up.
The nurse anesthetist came into my room a few minutes later. Tears were still streaming down my face. This CRNA is a provider I’ve seen multiple times, and there was confusion written all over his face when he saw that I was crying.
In between tearful breaths I said, “I haven’t been able to eat or drink, let alone keep food and medicine down… isn’t that an emergency?”
He looked back at me and said, “it’s okay Katie, I believe you”. He paused briefly, “why don’t I get this infusion running for you and I’ll reach out to your doctor? The most important thing is that you need to get help for whatever this is, and I’ll make sure it happens.” Then he administered the “kick off dose” and I fell back into restless, painful sleep.
It was yet another day in bed with minimal relief when I was wheeled out of the infusion center that Friday night. My mom could see that my pain levels were still high. She was very concerned, and we both did not know what the weekend would look like for us. Would the pain get worse? Or was it simply stuck at this current level? Was my brain injured in some way? Did I cause this somehow? What did I do wrong? Would anyone be able to help me?
When we got back to my house, and my mom and husband helped me back into bed, my mom saw a bright colored note in the bag I had brought with me to the infusion center. On the note, it said that my provider would come in early Monday morning to see me first thing, and we would try to get a handle on what was going on, and hopefully get a handle on my pain. Finding that note made us realize that we had been collectively holding our breath, until this moment. We all exhaled for what felt like the first time all day because we realized that there would be an end in sight, or so we thought.
The next two days were rough. The pain was intense, and I was vomiting so often that I slept on the tile floor of our bathroom sometimes. I barely moved. My life was a cycle of: lay down, sleep, keep laying down, eat, lay down flat, drink using a straw, have to pee, go to the bathroom, vomit from being upright, lay back down, and back to sleep. I was rotating through ice packs faster than our freezer could refreeze them. I drank soup, tea, and coffee with straws to stay as flat as possible. I was basically only able to keep down crackers, cheerios and toast. Those two days felt like weeks, but I believed that there was hope just around the corner. Finally, after one last nap, Monday morning was here.
My provider called me early that morning. He let me know that he had the report from the infusion center and that we needed to talk about the new head pain I was experiencing. My brain was not really sure how to find words by this point, but I just told myself to the best that I could and to have faith that if I was not sure about something, that my care partners were present.
While laying down on my couch, thank heavens for virtual visits, I listened to his questions and did my best to answer them.
“What’s going on with this new head pain you have going on Katie? Can you describe it to me?” my provider asked.
“I can try” I responded and then paused. I took a long, deep breath and said, “I feel like my brain is on fire. It is like it is sitting in acid and this immense burning pain is very present all over my brain. Then, to make matters worse, I have this very scary pulling sensation on my eyes and the back of my head/brain when I am sitting up. Finally, on top of all of that, my back hurts like I severely pulled a muscle, it hurts to walk as though my legs are filled with concrete, and I still have my ‘normal’ migraine pain in my right temple that is pulsing.” I took one more long and deep breath and said,“can you help me?”
He responded by confirming that the above description is what he was given by the infusion clinic. He looked down at my chart for a moment before he continued.
“This does not sound like your typical migraine.” he confirmed. “However,” he continued, “without an inciting injury, I’m not sure if that is what is going on. I think that given your connective tissue disease and other medical conditions, that treating this new pain would actually fall to your pain management doctor, since it is not responding to your migraine medications.” He shook his head a bit as tears filled my eyes.
He looked up and said, “I’m so sorry, Katie, I want to help you, but I’m not sure I can on this one.”
In that moment, the flood gates opened and tears streamed down my face as my doctor hung up the phone. I was awash in the sensation of the bottom of the wave again, only this time, I didn’t know if I could hold my breath long enough to make it up safely before I would drown.
We picked up the phone and called my pain management doctor. I told the receptionist about what was happening, and that I hadn’t been able to really eat or drink for almost five days. The clinic asked if I would mind coming in the next morning and waiting to see when my providers could squeeze me in. We accepted the offer and we packed up my darkest sunglasses, emesis bags, ice packs, snacks, water, and the medications I did have into a bag and set off to his office first thing the next day.
When my doctor’s PA was available to see me, we had the same conversation again. I was describing the pain, telling her what the last few days had been like, crying most of the way through it. I told her what my neurologist thought. I told her that he said that this new pain fell under pain management. We discussed my myriad of odd neurological symptoms that had been progressing for almost three years. These symptoms included: absent seizures, fainting episodes, chronic intractable head pain, weakness in my right side, neuropathy in my trunk, vision changes, tremors, and more. We went over all the conditions that had already been ruled out by imaging, blood work, and other medical tests. Finally, we talked about what I thought could be happening. I brought up a few conditions that friends and family members had brought up over the years: chiari malformation, a cerebral spinal fluid leak, traumatic brain injury from my series of falls associated with my POTS, lyme disease, MS and a few others. Our conversation was more than an hour. Afterwards, she reassured me that she believed me and that she would talk with my doctor about ordering an upright MRI and specialized blood work, that they would be sending out referrals to neurosurgery and rheumatology, and prescribing a pain medications to help me to get some sleep, eat, and get through testing.
The following weeks were a blur of bedrest, medical imaging, bloodwork, and phone calls. It felt like I told my story to a hundred people during that time. Some of the people I met on my journey were kind and understanding, others felt that I was being “dramatic” or “exaggerating”. I guess that is the way that it goes when you are pursuing a rare diagnosis. Although, my experience in obtaining my EDS diagnosis did not include much disbelief because my presentation was very “textbook”, whereas this new diagnosis was not at all “textbook”. It was a cloudy mess of symptoms and fatigue.
About three weeks after the onset of the orthostatic headache, I was meeting a neurosurgeon. I had never seen a neurosurgeon before, and I was apprehensive about whether the visit would be productive or not. I feared that I would be dismissed or told that “everything was normal” despite a growing list of symptoms.
My family was away. It was stressful to think about going to this appointment by myself. Thankfully, our family friend stepped up. She drove me out to my appointment and helped me to navigate my way through a new, large medical campus in my wheelchair that I was now dependent on because of how weak my right leg had become.
When we arrived, I was able to let the receptionist know that I was on bedrest due to the orthostatic headache, and was taken right back to a room where I could lay down to wait for my doctor. The nurses were all so helpful and understanding. They turned down the lights, made sure the bed was flat, and made sure the room was as free of triggers as possible.
When the doctor arrived, he was polite and soft spoken. He asked thorough questions, assessed my symptoms, and had reviewed my imaging and bloodwork. It was a relief to meet with a doctor who clearly believed me and wanted to help me.
I remember looking up and saying, “I know this sounds crazy, but something is wrong and it is getting worse” as I concluded my summary of what had been happening over the last three years. “The radiologist told my pain management doctor that I have a chiari malformation and that you can help.”
He told me, “I want you to know that we found out what is happening to you. I found your answer. In fact, I’m surprised you made it this long without ending up in my office. You have swollen dura around your brain and your brain is sinking into your spinal column. This imaging tells me that you have a CSF leak, and you no longer have spinal fluid around your brain. Essentially, the airbag around your brain is gone.”
The relief was overwhelming. “So this is real?” I asked.
“You can’t fake an MRI” he replied.
Tears rolled down my face as he began to talk through the treatment protocols. Finally, an answer. Finally, a plan. Finally, I would begin to heal instead of continuing to progress. Finally, I would be able to get my head above water. I will not drown.
This journey has not been a straight line. Infact, I’ve failed most of the standard forms of treatment. However, the diagnosis gives me strength to continue the fight, not just for me, but for others who are also fighting CSF leaks. I hope to share a story of successful healing with you all very soon.
