As I’ve mentioned in a previous blog, I have Postural Orthostatic Tachycardia Syndrome (POTS). For over 20 years, I’ve had problems anytime I stood up. I’d get dizzy, sometimes nearly passing out. If I was standing for a longer period of time – but often less than 30 minutes I will get dizzy to the point of thinking I was dealing with chronic vertigo, or that I was having hypoglycemic episodes. I would sit down and drink a sugary drink and feel better. Looking back, it was the sitting down that was helping and not the drink. These problems began happening while I was still thin and active – we were hiking often still at that point and I weighed in the neighborhood of 165-170 pounds which is within my acceptable weight range. Along with the subluxations of my joints and the episodes which I now know were POTS episodes, I became less and less active. So doctors began to just discount my concerns as me being overweight and out of shape. And they just weren’t listening or didn’t believe me when I said that these symptoms began while I was still active and in shape. All the times I got dizzy standing in one place restraining animals while working as a vet tech and had to go sit down and put an ice pack on my neck. Yep POTS. Heck, even this week anytime I move pretty much feeling like I’m on a 2 week bender and wanting to just lie down so the room stops spinning. If you ever see me walking around staggering like I’m drunk, I’m probably having a POTS episode, since I can no longer drink because of the MCAS.
Symptoms of POTS include, but aren’t limited to: increase in heart rate on standing, blood pressure can be low, normal or high, fatigue, headaches and/or migraines, lightheadedness, heart palpitations, exercise intolerance, nausea, brain fog, lack of concentration, shaking, fainting, coldness or pain in the extremities, chest pain and shortness of breath, sleep problems, light sensitivity, gastroparesis, abdominal pain, GI dysmotility, fast gastric emptying and skin hypersensitivity. Some people have blood pooling in their extremities, which results in a reddish purple color to the extremities, but this returns to normal when they sit or lie down and elevate their legs. The level to which a person is affected by POTS can vary immensely as well. People with mild symptoms are able to function relatively normally, but those with moderate to severe symptoms even struggle with normal lide functions such as showering. I have to allot my spoons for showering and house cleaning and other “normal” activities on many days. If you haven’t heard of the Spoon Theory, I suggest reading about it here. POTS experts equate the functional dysfunction in POTS patients to those with COPD or congestive heart failure.
Although it’s not completely known what is the root cause of POTS, there are numerous conditions that are often seen in conjunction with it. I have both EDS and MCAS which are both on the list. Here is a partial list of diseases and disorders from the Dysautonomia International website:
- Autoimmune Diseases such as Autoimmune Autonomic Ganglionopathy, Sjogren’s Syndrome, Lupus, Sarcoidosis, Antiphospholipid Syndrome
- Chiari Malformation
- Delta Storage Pool Deficiency
- Diabetes and pre-diabetes
- Ehlers Danlos Syndrome – a collagen protein disorder than can lead to joint hypermobility and “stretchy” veins
- Genetic Disorders/Abnormalities
- Infections such as Mononucleosis, Epstein Barr Virus, Lyme Disease, extra-pulmonary Mycoplasma pneumonia and Hepatitis C
- Multiple Sclerosis
- Mitochondrial Diseases
- Mast Cell Activation Disorders
- Para-neoplastic Syndrome – rare small tumors of the lung, ovary, breast and pancreas that produce antibodies
- Toxicity from alcoholism, chemotherapy and heavy metal poisoning
- Traumas, pregnancy or surgery
- Vitamin Deficiencies/Anemia
Diagnosis is made from either a tilt table test or a poor man’s tilt table test. In the tilt table test, they strap you to a table so you don’t completely fall off if you pass out and monitor your heart rate as they bring you upright to standing. This is not fun. My heart rate went up nearly 40 beats per minute and towards the end I got very nauseated, flushed and lightheaded. I’ll be completely truthful here. I was crying and begging them to stop the test so I could lie flat again. The nausea was so bad, they gave me IV nausea medication. I hate showing weakness around strangers. Did I mention, they have you come in on an empty stomach because they know that if you have POTS you might get nauseated? The nurse did tell me that I am the first person they’ve seen that got nauseated and had a reaction. So i guess Yay for being a first? The poor man’s tilt table test is taking someone’s pulse laying down after 10 minutes, then have them stand and taking it after 2 minutes and then at 5 minutes and 10 minutes. The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension. In children and adolescents, a revised standard of a 40 bpm or more increase has recently been adopted.
Treatment includes increasing fluid intake and salt intake. And I’m talking massive amounts of salt. Normal recommended salt intake for adults in in the range of 2300 milligrams. Most people with POTS are told to aim for up to 10 grams a day. No that’s not a typo – GRAMS! I drink Gatorade and electrolyte water like I’m in the desert. I use LyteShow Electrolytes in my water. It gives the water just a mild salty tang. I hate drinking plain water. This gives it just enough flavor, I’m drinking water without complaint. My geneticist told me to drink regular Gatorade, not the G2 or other sugar-free ones, because the body needs the sugars in it to function properly. It’s 31 less grams of sugar in a 20 oz serving than the Coke I was drinking all day long before, so I can deal with that. In fact, that brings me to the next recommendation – limiting or eliminating caffeine. I am down to only having 12-20 ounces of cola a day. Anyone who knows me, understands this is a major accomplishment! I was drinking a 2 liter of Mountain Dew 4 years ago, switched to Mello Yello, then to only cola, but was still drinking loads. Limiting caffeine hasn’t lowered my resting heart rate much, and I don’t think I’ve lost any weight yet, but we’ll see in the long run. Other things that are thought to help are to eat smaller meals more often, compression socks/stockings/tights, elevating the head of the bed, drinking water or Gatorade before you get out of bed in the morning, and exercise. I have been doing pool therapy to get my stamina up so I can walk and hike again. Well, I’ve had a couple weeks of flare and injuring my toe/foot, so I’ve missed several appointments. Also, getting a shower chair helps with the dizziness in the shower. A shower chair and a mattress wedge are the two things next on my list. There are a variety of drugs that are options to try ranging from antidepressants (no it’s not in anyone’s head but they work on neurotransmitters which affect the autonomic system), steroids, hormones, beta blockers (if you have an epi pen, please ask about getting a glucagon pen if you’re prescribed these because beta blockers can block the action of epis!), Cholinesterase Inhibitors, Clonidine, Stimulants, and midodrine. It’s a matter of trial and error on which works for an individual.
I’m going to my family reunion this weekend in the middle of nowhere West Virginia. No access to running water and camping in a tent. So I’ll be packing lots of Gatorade, lots of water, and my LyteShow. We also take a canopy so I don’t have to sit out in the sun since that makes all my symptoms worse. I have a pair of PRO Compression socks I’m thinking about trying out this weekend too. Their support staff stated “Our Marathon Socks and Calf Sleeves are a sport-grade compression which performs like traditional support stockings rated 20-30 mmHg.” I’ll update on how they worked for me if I do try them out! I also will be taking my SaltStick Caps too – just in case I need the extra salt. . Hopefully I won’t be lying in a field in remote WV this weekend because I didn’t stay hydrated and kept my electrolytes up!