I want to really focus on POTS awareness. It is a newly researched disease that not many people, including doctors, know about. Whenever I go to the ER, I often feel that I have to be smarter than the doctors. It is very surprising if one of the ER doctors knows anything about my condition or how to treat it. This is so frustrating, because by the time I get into the ER after passing out, and sometimes even having seizure like convulsions, my vital signs show up normal and they send me home with "dehydration".
Most POTS patients develop POTS when they are in their younger teen years, allowing them to outgrow the disease by the time they hit their early twenties. Unfortunately, I didn't develop the symptoms until I was about 17 and it has only gotten worse. I am 25 and it is the worst it has ever been, and I don't know if I will "outgrow" this awful disease. When I was in high school, I was an all star soccer player. I ran track, lifted weights; you name it, I was involved in it! I started having a lot of stomach issues my senior year and was in and out of doctors offices and hospitals with no answers. My freshman year in college, I collapsed outside of Wal Mart and was rushed to the emergency room. While at the hospital, the doctors performed a laying, sitting, and standing blood pressure test. My blood pressure dropped to 60/40 before passing out in the doctors arms. I was sent home with "dehydration".
In 2005, I had a positive tilt table test. Not only did I fail this test, I failed miserably. I had less than 1 minute of head-up tilt before I had a syncopal episode. My blood pressure was not palpable and they had to stop the test. They initially told me they were going to tilt the table and watch my vitals for 15 minutes. So much for that. They diagnosed me with Neurocardiogenic Syncope and put me on 5mg of Midodrine 3 times a day.
The Midodrine helped manage my symptoms, keeping me off the ground most of the time. However, it gave me horrible goose bumps and chills on my head and legs. I couldn't stand the side effects of the medication, so I only took it on days I felt it was needed.
POTS wasn't highly recognized when I was first diagnosed, so they had misdiagnosed me with Neurocardiogenic Syncope. Luckily, the medication and symptom management is relatively the same for the two conditions. It took years before I was properly diagnosed with POTS.
Before I became pregnant, I was able to manage my symptoms pretty well. I perfected blacking out and was able to stay standing and let it pass (most of the time). I was able to take my medication when needed, and stay out of the hospital. The day I became pregnant, everything quickly took a turn for the worse. I had to stop taking my medication. My first trimester, I couldn't stand up without help. I was always throwing up, which caused dehydration, which caused dizziness, and fainting. It was a viscous cycle. Luckily, in the second trimester, I have shown much more of an improvement. I haven't been stomach sick so I have been able to keep my fluid intake at a high level. Recently, I was prescribed a medication called Florinef. I started taking it 3 days a week and I found that I was only passing out and getting dizzy on the days I was not taking it. So as of yesterday, my cardiologist wants me to try taking it 5 days a week.
I have tried to find research on patients with POTS and pregnancy. It is pretty much non existent. This leaves me questioning everything with this pregnancy. My high risk doctor has never had a POTS patient, and neither has my OBGYN. My cardiologist has 4 other patients my age with POTS, but none of them are pregnant. I feel like I am going to be an experiment.
I have so many questions about being pregnant and having POTS, but no one has the answers for me. I want to know if I will get better or worse after this pregnancy, and if my daughter will have POTS. I want to know if I will be able to pick up my daughter without the worry that I might pass out with her in my arms. Will I be able to have more children? I want to know that I will have a safe delivery, and that my blood pressure drops aren't going to affect my baby. I want to hear her heart beat every day because I am always worried that every time I get dizzy or black out, it is going to affect my growing baby. I don't want to feel guilty every time I stand up too quickly, thinking that I could be hurting my child.
I can only sit back and take things day by day. I have high hope that everything will work out, and everything will go back to normal after she is born. I have an amazing group of doctors who are going to make sure everything goes well. I have an amazing, supportive family and group of friends that are making these 10 months a lot easier. I feel very lucky to have these people in my life and to know that there is always going to be someone here to help.
Here are a couple of informative videos about Postural Orthostatic Tachycardia Syndrome:
- Fatigue (which can be disabling)
- Sleep disorders (can cause unrefreshing sleep and an increased need for sleep)
- Headache/migraine
- Myofascial pain (characterized by regional muscle pain accompanied by trigger points)
- Neuropathic pain
- Dizziness
- Tachycardia
- Exercise intolerance
- Clamminess
- Anxiety
- Flushing
- Postprandial hypotension
- Blood pooling in limbs (can make legs feel heavy and appear mottled and purple in color)
- Intolerance to heat
- Feeling cold all over
- Low blood pressure upon standing
- Cognitive impairment (may include difficulties with concentration, brain fog, memory and/or word recall)
- Narrowing of upright pulse pressure
- Cold hands
- Hypovolemia (low blood volume)
- Chills
- High blood pressure
- Hyperventilation
- Numbness or tingling sensations
- Reduced pulse pressure upon standing
- Low back pain
- Aching neck and shoulders
- Noise sensitivity
- Light Sensitivity
- Disequalibrium
- Arrhythmias (irregular heart beats)
- Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses)
- Easily over-stimulated
- Feeling full quickly
- Feeling "wired"
- Food allergies/sensitivities (some foods seem to make symptoms worse)
- Hyperreflexia
- Irregular menstrual cycles
- Loss of appetite
- Loss of sex drive
- Muscle aches and/or joint pains
- Swollen nodules/lymph nodes
- Polydipsia (excessive thirst)
- Weight loss or gain
- Feeling detached from surroundings
- Restless leg syndrome
