Do you know how often I feel this way? In fact I frequently describe odd or weird symptoms to my husband in which he usually reminds me that probably anything new that I am experiencing is most likely POTS-related. There are times when I think to myself, ‘is that a real sensation I’m feeling or is this in my mind’, which is a scary feeling to have.
It kind of reminds me of how your mind is played with during a polygraph (or lie detector for those unfamiliar). I want to point out quickly that I know this from law enforcement hiring processes, not from any other reason. The way that questions are asked and phrased makes you become confused at times and question the truth. I had moments of panic at times where my mind would race and I would think, ‘DID I kill someone?’, all the while knowing that of course I had not but the tactics are meant to make you feel guilty. The test is designed to make you leave with your head down and thinking that you are a horrible member of society for one time printing off a recipe on paper from the work printer and not paying for the ink and piece of paper. It’s somewhat comical to look back on now, however I’m fine with never taking one again.
Research is so greatly lacking regarding POTS that many symptoms are not listed anywhere as true or common ‘POTS symptoms’ which does lead patients to think they are the ONLY ONE with that symptom or that perhaps that symptom is related to something else although it didn’t start presenting as a symptom until the onset of POTS.
Some of my odd sensations or symptoms since being diagnosed with POTS include:
- Icy blood feeling in my arms or hands- I can’t describe it other than sometimes I feel like the blood has turned freezing cold in some extremities and it feels like I can actually feel the blood moving through my arm. This always makes me think of the J. Geils Band song Centerfold which includes the lyrics ‘My blood runs cold, my memory has just been sold.’
- Sweat- Too much of it. Only in one place. While I’m freezing cold. All of the sweat variations out there I probably have at times.
- Anywhere from lack of appetite to ravenous hunger
- Dry mouth
- Extreme stranded in the desert with no water thirst
- Ridiculous cravings- I’m talking 1 am gotta have banana pancakes and ‘oh no we better have the ingredients for tacos right now’ emergencies.
- Vivid dreams
- Easy bruising
PatientsCount.org conducted a survey of POTS patients asking about several different symptoms. They included a write-in section for ‘other’ symptoms. Out of 330 patients, 61 patients wrote in additional symptoms.
Here are the write-in answers with the number of people who wrote each in:
|Sensation of pressure in body||1|
|Sharp prickly pain all upper body||1|
|Numbness and tingling in extremities||2|
|Pins and needles feeling in back||1|
|Small fiber neuropathy||1|
|Poor sensation in hands||1|
|Always dropping things||2|
|Gastroparesis or delayed gastric emptying||5|
|Extreme stomach bloating||3|
|Dry heaving or vomiting||2|
|Rapid weight gain||1|
|Cold sweaty hands and feet||1|
|Migraine or headache||5|
|Pressure in head||2|
|Clogged feeling in ears||1|
|Swooshing noise in ears||1|
|Allergies or hives or rash||3|
|Eyes rolling back||1|
|Numbness in face and body||2|
|Unable to speak||1|
|Difficulty finding words||3|
|Insomnia or unrefreshed sleep||2|
|Vivid bad dreams||1|
|Sudden mood fluctuations||2|
|Unfounded anxiety feeling||10|
|Inattentiveness or cognitive problems||4|
|Short term memory loss||1|
|Full body itch||2|
|Feeling of something stuck in throat||2|
|Low blood pressure||4|
|Stuck in slow motion||1|
|Body vibrating or shaking or pulsating||3|
|POTS symptoms triggered by pressing on upper stomach area||1|
|Skin color changes||1|
|Low grade fever||1|
|Too many to list||2|
It is such a relief to see that I am not the only one who is having ‘odd’ symptoms. I realize that seeing this doesn’t change anything for my treatment, but just seeing that I’m not the only one can really help to reduce some of my ‘am I crazy’ moments and after all, you can’t put a price on sanity and peace of mind!
You can see their findings here:http://patientscount.org/Findings/write-in-symptoms