Here is my 11 month journey, as short and sweet as it can be. Please feel free to reach out Jessica@unprocessedtruth.com I would love to hear from you!
My husband and I finally took our honeymoon 8 months after our wedding day and 7 months after buying our first home. I was so excited to spend 8 wonderful days in Kauai, and regardless of how it ended, it was one of the most amazing trips we’ve ever been on together.
On our last day in beautiful Kauai, we decided to take a long hike along the na’pali coast in very hot, humid weather. Up until this point I thought I was used to hot, humid weather. I also have been a very active person and runner, so I honestly didn’t think much of being “too hot.” I was fine the majority of the hike, and even ran uphill for part of it. And, after about 4 miles of climbing through red mud, plowing through streams, and strolling by beautiful waterfalls, we finished our magnificent hike.
To reward ourselves on our last day in paradise, we decided to have a nice lunch at a sushi restaurant on the north shore. On my last bite, I felt a crazy sensation come over my entire body. It felt like a dropping sensation from my head through my stomach. I felt dizzy, lightheaded, tightness in my chest, and very shaky. I actually thought I was having an allergic reaction to something in my food. I immediately looked at Tyler and told him I was going to faint and to call 911. He took me inside the restaurant and the hostess and waiters gave me cranberry juice and another glass of water thinking I was just low on sugar or something. I started getting super hot, sweaty and uncontrollably shaky. When the ambulance arrived, they checked my vitals and confirmed that I had heat exhaustion. They informed me many tourists get it because of the heat and extreme humidity. They said I could either come with them to the hospital for an IV or head back to my hotel with a cup of water. They said I would be fine and told me to relax and drink plenty of fluids. I was convinced I would be back to normal within a few days.
Later that day we hung out in the hotel, and I made sure to drink plenty of water and Gatorade. The next day we took a flight out of Kauai and had a layover in San Francisco. We then headed from San Francisco to San Diego, and throughout the flight I felt lightheaded, dizzy, hot and sweaty, and even had the chills; I also had a terrible, terrible migraine. We finally arrived back to SD and I felt an exhaustion that I had never felt before.
The next 2 days I made sure to lay low and worked from home. I thought I felt somewhat better but not back to normal by any means. On the second day home I felt a bit better and decided to take a walk around my neighborhood with a neighbor thinking exercise was what I needed. We walked 4 miles and it was hot, but nothing out of the ordinary.
When I got home from our walk, I had water and ate a few chips with salsa; within seconds of eating, I felt the exact same sensation as I had in Kauai. Tyler was out playing baseball, so I went over to my neighbor’s house. Within minutes, I blacked out, and she was forced to call an ambulance.
I can’t stress enough how I really felt like I was going to die, I even called my mom and told her I loved her and my dad in case something happened to me and I didn’t make it.
After the phone call, I remember my neighbor holding me up in the bathroom because I was so weak I couldn’t even go by myself and kept blacking out. Thank god for her! (She sure knows everything about me, lol). Lucky for me, I had 2 emergency service men and 2 firefighters show up. They got to my neighbors house within about 10 minutes of calling, although at the time, it felt like forever. My neighbor called my husband and he arrived as the ambulance was carrying me away. I was taken to the hospital where they ran all sorts of tests – blood, EKG, you name it… they couldn’t even get a IV in my veins because they kept collapsing from dehydration. After what felt like a million tries, they sent me home (I still can’t believe they let me leave without fluids). Their explanation? I was suffering from extreme anxiety. I didn’t believe it – I have never suffered from anxiety before and have never experienced any sort of health issue in the past.
I couldn’t sleep all night and went to my Internal medicine doctor with Scripps the very next morning. My mom came down that next day to try and help figure everything out and give my husband a break. The morning I called my Internal Medicine Doctor I told them I was in the hospital and needed to been seen. I rushed over to her office. She saw how pale and weak I was, and they ushered me in, in a wheelchair, feeling faint, weak, dizzy, cold, and shaky – I couldn’t even put sentences together. I seriously was convinced I was going to die, and no one was helping me.
As soon as I told her what was happening, they put an IV in and after about 6 tries, they gave me a few bags of fluid. I also did an EKG and blood work, and they sent me home with antibiotics for traveler’s flu (I knew this wasn’t the problem but at least she saw I didn’t have anxiety). I followed instructions and took that for 2 days, and then went back because nothing changed. I then had an ultrasound and another EKG because my chest felt tight again; this was when I started to think my heart would just give out on me at any moment. After the EKG, my doctor said everything looked normal. I was relieved to hear that, but at the same time, I kept wondering what was happening to my body.
During that time, I was on Omeprazole for stomach acid and heartburn. I tried to stop the Omeprazonle on my own a few weeks prior, but my doctor encouraged me to continue to start on that again to see how I felt, thinking it could be a stomach acid issue flaring up again.
To not repeat myself over and over, after about 5 or 6 visits with my internal medicine doctor (accompanied with all the symptoms listed above, low blood pressure, heart palpitations, and an increase in heart rate upon standing), I was told I probably had vasovagal syncope or a problem with my vegus nerve. My doctor then referred me out to an ENT with the diagnosis of vertigo.
Between waiting for my next appointment with the ENT and ending up in the ER a few more times, I called my OBGYN to chat with her about every possibility. We of course made sure I wasn’t pregnant and she recommended I stop taking birth control pills right away. I was on them for about 13 years with no breaks; she decided it would be wise to stop just to make sure the pills weren’t causing any of the symptoms I was experiencing.
Finally the day had come to see the ENT specialist. Upon my visit, the ENT took one look at me and said I did not have vertigo and referred me to a cardiologist.
It took about 2 more weeks to get in with cardiologist and by this point I was barely eating and still experiencing terrible symptoms. I finally met a younger professional cardiologist who basically looked at me before any testing and mentioned I may have Dysautonomia or POTs syndrome. He prescribed midodrine (a blood pressure medicine to raise blood pressure) and salt pills to help retain water and get my blood pressure back to normal (my blood pressure is usually low but at this time it was coming in around 80/50). I then did more blood work, a CT scan, 24-hour heart monitor, then a 1 week monitor, and a month monitor which all came back normal. Unfortunately, I had a bad reaction to the salt pills and ended up at urgent care, so I had to stop taking them.
My first cardiologist was the first doctor to diagnose me with Postural orthostatic tachycardia syndrome (POTS) a form of Dysautonomia. I completely ignored him and was in denial about accepting the diagnosis, but continued to do my own research and read online that Pots syndrome may a secondary syndrome and something bigger may be the cause.
So the search continued. I met with an Integrative specialist in Santa Monica who did her own set of blood work and found high levels of mercury in my system. She was very thorough and really wanted to help figure out what may be happening. Surprisingly, I was starting to feel a little better and thought it may simply be the whole mercury issue. About a month later, I had a total crash and my episodes got stronger and came back full force. My Integrative Specialist referred me to Cedars Sinai with an amazing GI specialist named Dr. Leo Treyzon.
I arrived to his office with my mom (yes, adults still need their mom, and at this point I wasn’t driving anymore just in case I had an episode and blacked out while behind the wheel). I had all my medical records and an essay of everything that happened up until that point. This was the first doctor that actually sat down with me and took ALL of my symptoms into consideration. He helped refer me to the proper specialists within 48 hours. We talked for about an hour and he did a normal exam, took my blood pressure, and listened to my heart and so on. I was blown away with his ability to take in everything I was saying and look at all of my symptoms together. He discovered I had a stomach fungus and we treated that with antibiotics; he then recommended an upper endoscopy, especially since I have a long line of GI cancers in my family and was taking stomach acid pills for years. I was so stressed and worried to do the upper endo, I could barely contain myself (I don’t think I slept for a week up until the procedure). It ended up being so easy and worth it. Dr. Treyzon was able to clear 5 polyps from my stomach and now will continue to be proactive to maintain my health. He also was able to wean me off my stomach acid medication. Since our first meeting, we have continued to have e-mail appointments and phone conversations which have been lifesaving for me! A doctor that actually returns phone calls and emails?! How freaking awesome.
Straight from Dr. Treyzon’s office, I went over to meet a very nice Neurologist. I again told her my whole life story and all my symptoms. She decided it would be best to have an MRI done the same day to rule out any sign of MS, Tumors or anything else that may be obviously seen by doing an MRI. My mom then carted me over to the radiology center to do an MRI with injected dye. If you have had this done before you will know that this is not a very pleasant procedure. My nurse at the radiology center was awesome though – such a great, fun guy! They got me set up, put my IV in, and had everything in place to do the first round of MRI photos without ink. After the first round, they pull you out of this huge donut machine and inject dye into the IV. Unfortunately, my vein burst and the dye leaked into my arm…It was so so so painful I was crying! Luckily we got enough dye in the vein to have it spread to my brain and they were able to continue to the next part of the MRI. When we finished the second part, he pulled me out and checked my arm. It was so swollen and fat, I couldn’t believe it! I felt so bad for the guy that was working there, I kept telling him it wasn’t his fault, and that my veins were just super small. We had to massage it and keep an eye on it for an hour or so until I was released. The next day, the Neurologist called to let me know everything looked great but she wanted us to come in for a follow up appointment. During the follow up appointment a week later she informed me I may just be getting migraines and sent me on my way with migraine medication if I felt I needed it (which I never ended up using).
My next appointment was with the Rheumatologist, Dr. Karayev. I can honestly say that he is one of the best in the biz! He was also very accommodating, listened to everything I had to say and tested me for almost every autoimmune disorder or possible underlying condition that may be associated with Dysautonomia. I think it was the most blood I had ever given at once…the nurse told me 24 vales! I had 2 juice boxes and nuts during the blood draw! All my initial blood work came back perfect. Around this time, I started getting terrible leg cramps – they were so painful I believed I might have been experiencing a blood clot. I woke up every hour and had to walk around to make sure it would go away. Dr. Karayev sent me for a leg ultrasound to make sure it wasn’t anything more to worry about. The ultrasound came back clear and he started me on a combination of co-q 10 and magnesium. Within 2 weeks, my leg cramping was almost gone. Since then I have had about 4-5 appointments, 3 major blood draws and countless e-mail and phone correspondences with Dr. Karayev. He’s confirmed that I do in fact have Dysautonomia with no underlying conditions. He has also been there to answer all of my questions and continues to refer me to specialists that deal with Dysautonomia.
Oh, and here’s a note on how important it is to seek an extra opinion in all medical conditions: After my first meeting with Dr. Karayev, he referred me to an Endocrinologist. I had a quick appointment with him, in which he didn’t really seem to know what was wrong with me or really think there was any point in me seeing him or testing my hormones. I did more blood work with him along with a 48-hour urine test. He called me about 3 weeks later just to let me know everything was normal and wished me luck.
With the help of Dr. Karayev, I met my cardiologist Dr. Cannom. (Our first meeting was only about 2 months ago). He put me through a tilt table test under the super vision of his female resident doctor. Surprisingly, the tilt was negative, but my heartbeat was still beating erratically.
Since my diet and exercise change in mid January I have not had an episode, and Dr. Cannom and I have another appointment to discuss how we will move forward. Even with the negative tilt, he is sure I am experiencing onsets of Dysautonomia but is sure I am recovering in the top tier of his patients, telling me that I might just be past the worst of it.
With the diagnosis of Dysautonomia and no underlying conditions, I am continuing to work with a Cardiac Electrophysiologist at Cedars Sinai and an Integrative Specialist in Santa Monica. I am currently on month 11 and starting to see major changes. I still get episodes of heart tachycardia, dizziness, nauseous, headaches, brain-fog and occasional UTI infections around my cycle. However, I am learning new things that are helping and working on improving my overall wellbeing. Lucky for me, I found some amazing support groups and met some inspiring women going through the exact same thing.
Today, I am happy to report that with some setbacks, my daily life is 95% back to normal. My biggest challenge is learning to not be concerned that another episode is right around the corner and that I can live normally.
*Please keep in mind that these appointments took place over an 8-9 month period, with countless ER and other doctor appointments. I chose to only write about the major experiences and not dwell on all the negative appointments and unworthy doctors I have seen. If you are looking for answers within your situation, be persistent and push to see doctors that will help you figure it out. Everything I write about on my blog is my personal experience. I am not a medical professional, nutritionist or personal trainer but these things have helped me. Please understand that my opinion will not cure or treat anyone’s condition. This is just stuff that happened to work for me.