(Great video on POTS symptoms and what is is like to live with POTS)
Dealing with one chronic illness is bad enough, but dealing with two can be unbearable at times. I have been dealing with EDS all my life, each year adding on new symptoms and more pain. Along with the symptoms of EDS, I have been dealing with my 'heart problems'...that was the term I used to describe the symptoms of my undiagnosed POTS. They included severe palpitations, dizziness, chronic fatigue, nausea, tightness in my chest, and passing out.
The symptoms started in my early teens, but weren't what I considered severe - some palpitations, some migraines, some fatigue. In my early twenties, the symptoms started to get worse. I had such severe migraines that I was in a migraine study at UCLA, in which they labeled the cause of my migraines 'undetermined' and said they couldn't help me anymore. I had bouts of passing out quite often, sometimes these accompanied the migraines and sometimes they didn't. I passed out at random times in random places: at home, at work (one time, when I was working for an airline and was checking in customers at the gate, I collapsed and caused a bit of commotion from the passengers and my coworkers!), even driving in the car (yes, scary!). The doctors I was seeing at the time had no clue what was wrong with me and some said it was all just in my head. My occasional heart palpitations became more frequent. I was exhausted more and more of the time. The symptoms were getting pretty bad by 2005.
When I went to Johns Hopkins in June of 2005 and was diagnosed with EDS, I mentioned these symptoms, and the doctors said I probably had POTS (I didn't know what that was at the time), but that it didn't seem bad enough to cause concern, and I didn't need to do anything for treatment other than drink lots of water and eat lots of salt. They said they weren't going to do any formal tests at that point in time. For the next two years, I just took their advice, figured I probably had POTS, but there wasn't anything I could do, and that was that.
From 2005-2008, my symptoms got pretty bad. I was having a hard time mustering up energy to do anything on daily basis. I was dizzy and lightheaded 100% of the time. I was nauseous always. My heart raced all the time, and when I would have a really bad 'episode' (what I called my 'racing heart'), I would be worn out all day. Some days, I didn't even know how I was going to work, let alone get up and move around the house. I knew something was really wrong, so I started to investigate that acronym the geneticist had used: POTS. Postural Orthostatic Tachycardia Syndrome.
Finally, in 2008, my symptoms got so bad, I knew I needed to seek treatment and get a formal diagnosis. And, I was hoping that I also would find some help. I contacted my general doctor who sent me to a cardiologist. They had me wear a halter monitor to watch my heart rate for 30 days. It had electrodes that attached on my chest and a monitoring device I attached to my waist on my pants. I had to press a button on the device anytime I felt my heart palpitating, and this would record an EKG. Then, I had to call the monitoring center once a day and transmit my EKG over the phone (a very strange thing!). A few times, the people from the center called to make sure I was okay, as they said my monitor recorded my heart beating at dangerously high levels! When the test was over, it was concluded that I had no arrhythmia's but I did have severe palpitations (so my heart raced really fast a lot of the time, but the beats weren't abnormal). After this, they sent me for a tilt table test. My test was positive for dysautonomia and they said I had POTS. During the test, my heart rate went up to 170! My blood pressure fell to 50/30. I did pass out.
What is POTS? What is it like to live with POTS? Does it go away? Is it curable? What are the symptoms?
POTS seems to be different for different people. For some, POTS is something one gets as a teen and outgrows it by their early twenties. For others, and I am finding this to be the case for those who have EDS and POTS together, it gets really bad around the mid-twenties and just continues to get worse with age. My symptoms are pretty severe now, at almost 28, and they make my life rather difficult on a daily basis. When I move, whether lying to sitting or sitting to standing, bending over to reaching above my head - and sometimes movements so slight as turning my head or moving my arms - my blood pressure drops, my heart rate goes way up and I become dizzy, things get black, and sometimes I pass out (which is inevitable if I don't immediately sit back down). I can't stand for long periods of time, like at a concert or in line at the grocery store, and more and more I am having a hard time standing at all. I am always tired, fatigued, have no energy, and this is caused by my heart doing overtime all of the time. I have likened it to 'running a marathon 24 hours a day, while not actually doing any physical activity.'
There is no cure for POTS. There are some forms of treatment, but nothing that takes away all of the symptoms. I tried the 'lots of water and salt' plan, which did nothing for me (though I continue to consume lots of water and salt just in case). I tried medicines. There are beta-blockers, steroids that make your body retain salts, medicines that keep your heart rate up, medicines that keep your blood pressure up. I went through the rounds. If 10/10 is feeling perfect, the closest I got on medicines was a 4/10. My endocrinologist exhausted all resources she and her team of doctors felt they could, and so I was stuck with a 4 out of 10. That was improvement, so I took it, but when I lost my insurance, I had to stop those medicines (couldn't afford at $1300!). Some people find relief on the meds, some don't. Some find just a little. That was me - just a little bit of help. Now, with no meds and no other choices, I currently am dealing with the full range of symptoms. I do a lot of resting, have a hard time being fully mobile, and am in a wheelchair if I need to go out and do things that require a lot of walking or standing, or on days I have no energy. Mostly, I just don't do a whole lot.
POTS, in itself, can be disabling. EDS can be disabling as well. Put them together and you have me - a young, healthy-looking woman on the outside, who is really ill, battling 2 syndromes that leave me in a lot of pain and thoroughly exhausted. It is very hard to convey this to friends and family. How do you explain your fatigue and pains, how do get across your 'invisible disease' without seeming lazy and like you are just complaining? Most doctors don't even know about the two rare disorders Ehlers-Danlos Syndrome and POTS. I was diagnosed with both, by medical doctors, and yet I still don't get the respect/sympathy I would if I told someone I had Parkinson's, breast cancer, or any other random number of well-known diseases. Not that I discount or discredit anyone's medical condition whatsoever; more so, I find it very hard, very frustrating that all diseases aren't given equal weight. Most people still don't understand. They don't believe me when I tell them I am sick. That is why I have chosen to dedicate time to increasing awareness of EDS, POTS, and bipolar disorder (another post). As the saying goes, 'invisible diseases suck!' - and, yes, they do. So, lets do something about it.
And, to keep a bit of humor here, as Elliot said on the TV show Scrubs, 'If you want sympathy, get a disease people can see!' (Just kidding!)
(Video: Trailer for Changes: Living with POTS documentary)
Symptoms of POTS outlined by Dysautonomia Information Network
- Fatigue (which can be disabling)
- Sleep disorders (can cause unrefreshing sleep and an increased need for sleep)
- Myofascial pain (characterized by regional muscle pain accompanied by trigger points)
- Neuropathic pain
- Exercise intolerance
- 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)
- High blood pressure
- Numbness or tingling sensations
- Reduced pulse pressure upon standing
- Low back pain
- Aching neck and shoulders
- Noise sensitivity
- Light Sensitivity
- 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)
- 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
(Video: A Demonstration of Dysautonomia POTS)
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