Lily’s Story

Watch Lily’s video testimonial or read her story below: 


“I came to POTS Care in May 2022, a few months after I had a dual back surgery, a fusion of my L4-L5 along with surgery to drain 3 CSF impacted nerves in my sacrum (Tarlov Cysts). The surgery took 3 surgeons and a robot to complete. I went into surgery sick. My symptoms were odd and unexplainable, like so many others who come to POTS Care for help. This is my story with all the twists and turns that resulted in my perfect storm.

On Feb. 17, 2022, after surgery, I felt fine. I had no symptoms other than back pain. This was most likely due to pain management medication. I have never been one to take meds so, I stopped taking my pain pills two weeks after surgery, with the exception of a caffeine pill used for headaches and Tylenol, both were given to me as preventives, but I rarely used them. Needless to say, both are horrible for IIH. Shortly after surgery, I told my surgeon again about the feeling of fullness in my head. He quickly sent me for an MRI of my spine and brain to rule out a spinal leak. That’s when I first heard about IIH. My surgeon told me to follow up with a neurologist at some point but to stay calm and focus on getting better.  I started walking that day and continued to walk as much as possible for the next few weeks. I could sing, and eat the food that I usually did. I felt ok. I was also sleeping on a pillow. By the end of February, my symptoms exacerbated to dizziness, and nausea came on with the weather changes. It was horrible. It was hard to be in a car. I had several doctor appointments post-surgery and it was absolutely necessary to go to all of them. At this point, I started looking up IIH. Google is not our friend! I panicked. I joined a few Facebook groups, asked questions, and became more scared. My anxiety was increasing, and I was always crying. I have never been an emotional person or an anxious person, not at all. So, this was odd behavior for me but reasonable considering how much I had gone through.

The first doctor’s visit was with an ophthalmologist. She saw little to no swelling of my optic nerves and was hesitant to provide me with Diamox but due to my symptoms, she went ahead and prescribed it. I took less than the lowest dose due to fear and a lack of emotional support. No one around me could believe I was this sick, this fast. It was impossible. I was listening to people tell me to stop diagnosing myself. I read horrible things online and honestly, I let it get the better of me. By the 3rd day, I stopped the med immediately. My symptoms developed with a vengeance. I could no longer breathe, although my oxygen level was 97. I could not take a deep breath in, as if my lungs were not expanding or I was having an allergic reaction. My head was full, both ears ringing, brain fog, and fatigue that was unbearable; my eyes were extremely dry and it was hard to move them. I could no longer walk, or sing, and talking seemed difficult. My heart rate would race with any movement. If I lay in bed, I couldn’t lift my arms up to hold my cell phone, I would drop things all the time and I could no longer sleep. I tried so many things to help me sleep and I couldn’t get more than 4 hours a night. I could not move my body due to surgery and my mind and limbs were no longer functioning. I had also developed a pain in between my shoulder blades that did not stop! It was horribly painful. I was in hell. I slowly got back on Diamox but basically took crumbs. This was a ridiculous approach, but my brain wasn’t working! I couldn’t make cognitive decisions. I was losing everything. My ophthalmologist told me she would provide the prescription for me as long as it worked for my symptoms but I would need to find a neurologist. I needed a plan for my health, and I didn’t know where to start. All my conditions are rare, what can I say, I am a unicorn.   

I started my journey to find answers: I saw a cardiologist who suggested beta blockers- I refused.

Another told me I had anxiety and prescribed Trazadone, which did nothing. I was 113 lbs. and getting worse. I researched online, read medical journals, papers.. anything. All of this while I was in pain. Advocating for myself, against the odds, against opposing views and validation.

I found POTS Care online and read a testimony, like the one I’m writing right now. I thought, could this be me? Could I have POTS? Reading about POTS in various forums sounded like agony. It sounded like my life was over and several times I contemplated that notion, but I fought on. I researched Dr. Driscoll and saw her videos. I was so hopeful to hear that she recovered from POTS and also has IIH. So I contacted Dr. Driscoll’s office. I remember speaking to one of the staff on the phone and I said, “If this is a hoax, I can’t afford to put my belief in this, I feel like I’m dying”. The whole team at POTS Care eased my worries, talked me through it and I made the first phone consultation.

The day Dr. Driscoll called me, I was stepping onto the elevator with my best friend and my aunt. I was crying. I had almost given up. I had just left an appointment with a new neuro-ophthalmologist who said that my optic nerves were fine, and that I didn’t have to take Diamox. He also said I was not overweight and didn’t fit the bill for IIH. Which further caused confusion with my family. I recorded that conversation because I couldn’t remember anything at the time. I just recently listened back to that recording and It was very sad. I told Dr. Driscoll what had just happened and the first thing she said to me was, “Lily you’re not crazy, you’re sick. Let us help you.”

I could not drive, walk well, or build the muscle strength to heal from surgery. I was completely disabled and suffering.

I had so much anxiety that I almost quit my treatment at POTS Care 2 days after starting but Dr. Driscoll pushed me forward. In God’s name, I am so glad that I did push forward!

The first couple of months were hard. My care package came in and I started my supplements. Then we did tests, and I started more treatment. My diet changed and by this time I was 110 lbs. but I kept on. By June, I was able to speak clearly and think. I still had a lot of pain in my upper and lower back, but I could walk again. I was still short of breath, but it didn’t stop me from walking several times a day for short distances. I rarely walked alone. By the 5th month, I was cooking my own meals. I would rest when I needed to. I was also sleeping 9 hours a night.

Gradually I got better and better. I went to physical therapy at 6 months. I had to take it easy, mostly light stretches and massages. I started to do light strength-building 8 months ago. I wanted to cry with happiness but crying caused some head symptoms at the time, so I learned to focus on smiling.

After 1 year, my back pain stopped, allowing me to do so much more. Today I can walk 13,000 steps a day, drive, and work from home. My breathing is better, and now I can meditate. I can swim, run a bit. I rode my bike around the block. I have a neurologist and an ophthalmologist who believe in me, and I have Dr. Driscoll. I have a warrior team of doctors. I am blessed. It was not easy. There is a lot to learn about how to approach doctors when you have a rare illness. Dr. Driscoll is the most understanding doctor I have ever met. She doesn’t just talk the talk, she has walked the walk. I trust her completely. This team will give you everything you need to overcome this dreadful illness. Take a chance!

I just had a birthday party, I’m a happy 49-year-old. I danced for the first time in 2 years. I sang karaoke and I spent time with all my loved ones. I’ve become a pretty good cook! I continue to eat healthy, low-inflammation meals and I am not so triggered by stormy weather.

Idiopathic Intracranial Hypertension – I may never know how I got this illness, my recent CT scan revealed my left-transverse sinus and a partially empty Sella, both are IIH indicators. I am recovering from Tarlov Cyst Disease, a spinal fusion, POTS, and managing my IIH. I don’t fit the IIH medical criteria without a lumbar puncture. I am not overweight, and I do not have papilledema, I don’t have migraines but I did have immense head pressure. Yet, I received treatment and it has worked wonders! Dr. Driscoll has taught me how to manage my IIH and resolve my POTS. It’s not all about the meds and supplements that made this a successful experience for me, it’s the education that I value the most. It’s the compassion that will always be at the core of my healing. 

After a year, I am on top of this illness. I am alive! I made it and so can you! Believe it! Everyone is different. Recovery is different for all of us.

Today, my worst symptom is dry sinuses due to humidity- Texas weather y’all! 😉  This is a residual symptom, and I am a work in progress. I am so much better than where I was. One day at a time. <3

Thank you, Dr. Driscoll.”