I decided to go back and write even more specific details in my health timeline. Even though I consider my "onset" as the summer of 2000, there were signs something wasn't quite right as early as age 9.
4th Grade (1994)- I had a lot of anxiety issues. I would get panic attacks for no reason whatsoever. I was so fearful of everything. Most of my days were spent in the guidance counselor's office trying to sort out what was going on in my head. I still to this day have no idea what was going on. All I know is that I was terrified all the time. School was so scary for me, but it never had this much of affect on this until 4th grade.
6th Grade (1996)- I started to have the panic attacks again. I didn't want to go to school anymore. I'd cry every Sunday night and try to get out of going on Monday. There were a few times I just broke down and cried in class. My grandmother died unexpectedly this year, but I think I just used that as an excuse for my feelings. It was an easy out.
11th Grade (Summer 2000)- During marching band camp, I experienced severe heat intolerance for the first time. I nearly fainted, passed out every single day outside. The 'band moms' told me that I looked very pale, blue and I knew I felt better when I could sit down. Since I played trumpet I had to keep my arms way up, which made me feel so much worse. I kept water with me at all times and wore as little amount of clothing as possible. Still this was not enough to keep me from feeling ill. I had a terrible sore throat and just thought that the lightheadedness was from being sick.
Fall 2000- At some point I went to the doctors because I was having extreme fatigue and felt awful. I knew something was wrong when I started sleeping during class. I would sleep at any given time (bus, lunch, during class). Finally my PCP told me I had EBV and to take it easy for a while. I was told to quit marching band and to not partake in physical education at all.
I also became anorexic right around this time. I would overexercise and eat very little foods. The heat intolerance and lightheadedness continued.
Eventually my menstrual cycles stopped. I assume from the tremendous amount of stress my body was under since I was not eating properly. They were gone for about a year's time and only came back after I started to eat better. They have always been very regular since with a few exceptions here and there. Because of my anorexia, all of my other symptoms were blamed on that, even though I told my doctors these symptoms started before. No one listened.
May 2001-Still very much anorexic and thin, I went to my ex boyfriend's prom at another high school. It was soooo hot and I nearly fainted multiple times on the way there. Waiting in line to take pictures was soo difficult. I just pretended everything was okay and once we got into air conditioning, I was feeling much better. At this time, I was having severe digestive issues and had to take digestive enzymes when eating anything. This is when my lactose intolerance hit its peak.
June 2001-My friend and I went to our school picnic at Kennywood, which is a local amusement park. It was a very hot June day. I knew immediately upon getting on the school bus, that I was not feeling well. I had extreme nausea and a feeling like someone was punching me repeatedly in the stomach.
As soon as we got there, we decided to ride our first roller coaster which I've always enjoyed. We were standing in line when I suddenly felt myself become very weak and heavy feeling. As soon as I told my friend that I was feeling ill, I crashed down to the pavement. I could not see anything nor hear anything around me, yet I know that I was conscious, but could not lift myself up. My friend said that I turned blue and ran to get some help. I was taken to the first aid station where my BP was 60/40 and was told that I should rest and that I was probably just dehydrated. I slept for nearly 4 ½ hours and thought that I had only slept for like 20 minutes.
Even after getting fluids in me and resting, I continued to fall down and feel extremely nauseous all day long and my parents picked me up from the amusement park.
This is the first and last time I have ever “fainted”. Looking back though I often wonder if this was my first adrenal crisis. I can't believe I was not taken to the hospital. Really quite shocking to me.
Fall/Winter 2001-This was my senior year of high school. It took all my effort and will power to make it from class to class. I knew when it came time to switch classes I'd have to suck it up and make it up the stairs. Some classes I had to go up
3 floors, which would nearly kill me. Once I got in class, sat down, I'd feel much much better. I had major issues dealing with any type of stress. I'd begin to shake, feel nauseous, extremely cold and terrified. My anxiety issues started to show up again. Despite all of these problems, I did very well in school.
Age 18-20 After high school, I decided to go to community college and work. At first I just had a part-time job and then I started working full-time. I don't know how I even did all of this... Since I worked and lived in air conditioning, my heat intolerance wasn't as noticeable. My job allowed me to sit down most of the day, so that was helpful too. I just knew if I had to stand for a long time or go outside for any length of time, I felt very sick.
Age 20-22 Things began to progress and I continue to get worse. My attempts to keep up were not working anymore and I realized when I stood I'd feel extremely unwell. Previously I never made the connection before! I went to a few doctors complaining of heart palpitations, but they didn't do much nor really care whatsoever. They just told me to stand up slower, keep hydrated and blamed everything on mitral valve prolapse.../sigh
I had quit my sitting job and was working at a retail store where I was required to stand my entire shift. There were no stools like at my other job.... After about a year of that, I just couldn't even go into work anymore and was calling off often. Standing at the counter, waiting on customers was almost impossible on some days. I'd feel soo ill and I would actually lay down on the ground in the jewelry department in between customers. Since we did not have air conditioning in our house, my body was constantly in that heat intolerant state. My heart would be racing as soon as I woke up and I felt very dizzy and lightheaded. I finally was forced to quit my job and haven't worked outside of the house ever since (6+ years now). Standing for long periods of time (like an 8 hour shift) is impossible.
A few months after quitting work, my sister found out she had a
malignant brain tumor and I went into a dark depression for months. I
did not want to eat, talk or even leave the house. Only after she was
given a good prognosis, did I come out of my shell. This had such a
huge affect on me as I thought I was going to lose my sister. My sister
and I had been through A LOT because we shared a room our entire lives
from age 6 until I moved out when I got married at 19.
May 2007 (Age 23)- My health continued to get worse and worse. I was sleeping 10-12 hours a day and could barely even get out of bed. I went to the ER a few times feeling extremely ill but was always dismissed as a druggy or looking to get pain pills. No one took me seriously whatsoever!
I decided to start going down the "natural" doctor path. Mainstream docs were not helping me one bit. They didn't even want to talk to me.
November 2007- I began to develop numbness/burning in my left leg from my hip down to the top of my knee cap. I also started to lose my hair after taking potassium iodide. A dermatologist diagnosed it as alopecia areata. I had several “spots”. One was very large covering the entire left frontal area. The second spot was on the back of my head. These spots lasted for about a year and then cleared up after removing my amalgam fillings and begin chelating.
Around this time, I was also diagnosed with partial diabetes insipidus. I took dDAVP which helped alleviate the frequent urination, but did not help me with any of my other symptoms. A pituitary MRI with contrast was done and it was normal except for some issues with my sinuses.
Labwork showed low normal B12 levels. B12 injections helped with the numbness in my extremities.
December 2008 (Age 24)- While chelating, I started to develop hives and itchiness. I felt absolutely terrible. I was losing a lot of weight really fast. General blood work revealed a
non-detectable TSH level, normal T4 levels, slightly elevated liver enzymes and high eosinophils. I was told to see an endo to have my hormones further evaluated. I believe this was all from DMSA, but at the time I did not know this!
March 2009 (Age 24) I was finally diagnosed with adrenal insufficiency after a mildly elevated ACTH level. I began taking hydrocortisone and florinef, which immediately resolved a lot of the symptoms I had been suffering with for almost 7 years. Unfortunately the tachycardia upon standing was not resolved. I was told by my natural doctor that he wanted nothing to do with my heart issues and that I needed to see a cardiologist. Meanwhile, POTS was the entire reason why I saw him... Ugh!
Approx. June 2009- Allergy testing showed sensitivities to gluten, wheat, dairy, eggs, tomatoes, strawberries and yeast. For about a year I followed a strict diet that restricted all of these foods. I never noticed a difference at all. I watch my dairy intake since I am lactose intolerant. I stopped eating gluten free in 2013.
August 2009- (Age 25)- I saw a local EP who had some knowledge of POTS. I wore a holter monitor for 24 hours, had an echocardiogram and EKG which all showed a normal heart rhythm, but with periods of tachycardia (when I was standing). A tilt-test was ordered, but in the meanwhile I was placed on midodrine. It made me feel worse and I discontinued it within 3 days. The side effects were unbearable. It made me feel very jittery, anxious, manic and I would have likely killed myself if I had stayed on the drug. It was that bad.
The results of my tilt-test were very conclusive and I certainly had POTS.
It's important to note that for this TTT, I was taking Hydrocortisone, florinef, DDAVP and I was also hooked up to a Saline IV.
Since the midodrine failed, my doc had me try a low dose beta blocker (metoprolol ER) and that made a big difference. He was shocked to hear I had such positive effects with the beta blocker and inferred I likely had a problem with catecholamine levels. Yet he refused to test my catecholamine levels because "they cannot be accurately interpreted". I would later find out this is just flat out wrong and my POTS doctor was really quite crappy.
February 2010- Complications from the beta blocker started to creep up slowly. I started to feel a lot more fatigued throughout the day and I developed chilblains on my toes.
Unfortunately once the warmer weather came around, the beta blocker's positive effects were quickly fading away. The beta blocker did absolutely nothing to help with the heat intolerance problems and I was right back where I started. My standing heart rates were still way too high when I did any activity that requires standing, lifting or bending down.
June 2010- Another tilt-table test was performed at Cleveland Clinic with catecholamines. This test confirmed the POTS diagnosis, but also showed I have elevated norepinephrine levels upon standing.
After a poor experience dealing with Cleveland Clinic, I pretty much gave up on pursuing anything further with my health. I took a long break with my health and did not see a single doc for over a year.
December 2011-I became quite sick with what I would find out in the coming weeks was actually strep throat. Since I didn't realize I had strep, I did not go to the doctors and it was untreated. I developed erythema nodosum and arthritis from strep throat. It was a horrific few months of my life and do not know yet if there will be any long term effects from the strep.
June 2012- I'm still the same as I was in 2009-2010. Despite all of my research and trying different things nothing has really changed much over the years since going on hydrocortisone. Chelation helped briefly, but since I get severe side effects from it, I haven't gone back to doing it. I have nearly abandoned the whole idea which is why all the chelation stuff has been removed from my blog.
I no longer think there's anything I can do to fix myself. It's taken
quite a few years and a lot of reflection to finally come to this
conclusion.
October 2012- I was supernaturally healed of adrenal insufficiency and for the first time in many years was able to cold turkey come off of hydrocortisone. I went to a prayer meeting and was prayed for. I felt a warmth in my core. I didn't think anything of it and had forgotten to take my pills. Weeks went by and I still didn't need it. There is no other explanation except that God healed them that day when I got prayer!
March 2015- For the past 2.5 years I have 100% been following God and seeking Jesus for healing. I am no longer researching, doing treatment protocols or anything at all. If I am healed it will 100% be by the power of God. My weapon is now prayer and faith in Jesus name. Doctors and men failed me. Science and amateur research failed me. Now I look to the Creator, my Lord and Savior for life. I no longer live for myself, but for God. Everything I used to do, I no longer care about at all. This is the power of the Cross and a testimony to what the Holy Spirit can do in one's life.
So far from what I've seen, God has a better track record than any of the lead researchers and doctors at Vanderbilt, Cleveland Clinic or Mayo Clinic. That's something to think about. I know of at least 3 women who have been healed of POTS.
Don't allow the faults of man to smear the name of and/or ruin your relationship with God...Don't allow what someone else did to you, keep you from being saved and reconciled back to God. Doing so gives these people waaay to much power.
