Let's talk about Pots!
No, not those kinds of pots, but POTS.
POTS is an acronym for Postural Orthostatic Tachycardia Syndrome. One of the leading clinics on this topic is The Cleveland Clinic in Ohio. It also just happens they are a head of the curve on Autoimmune Arthritis & other conditions I live with. You can also consult John Hop kins and you won't be led astray. In short Postural (position of the body) Orthostatic (standing upright) Tachycardia (a heart rate of over 100 bpm) Syndrome (a group of symptoms) is a syndrome that affects the autonomic nervous system. You can read all about it at the Cleveland Clinic.
I don't want to talk to you today about the in's & out's medically or intellectually. I want to talk to you about living with POTS & how it took me over 14 years (20 years of symptoms complaining) to get a diagnosis when I started to demand answers. There are textbook symptoms most of us have & then there are other symptoms not everyone has. Also, to make matters worse, I have the rarer of the two major groups., Low & High Bp which causes the episodes (Tachy/Brady). Again, I'm speaking to you in layman terms, not in research terms at this point. If you think or know you have it, in the days of the internet, I'm sure you have researched it to death.
When I'm standing in line at a grocery store for instance, and I am perfectly still-ish, my blood pressure will continue to rise to dangerous readings until I sit me arse down, on my butt, anywhere, preferably right where I'm at until the initial symptoms pass. If not, I'll pass out or get symptoms so dramatic you would think, without knowing, I might be having a heart attack or stroke (which i've had the first) or panic attacks (which I now know, I didn't have) or I was a strung-out addict or in a mental health mania state with loquacious speech, sweat, blurred vision, accelerated Heart Rate, dizziness from hell & generally but not always, elevated Blood Pressure. It comes on fast we don't have a lot of time to react (SIT DOWN).
Now, what happens next is interesting. While I am sitting, my body will try to regulate the overage of amps it has sent through my brain & body (my HR goes to 110 to 120 or higher & my bp has notoriously gone 220/ 120-150 or higher in a blink of an eye). What happens next is just as scary. My HR will plumet (30's & 40's) & my BP will follow hopefully, but not always. I have had co-mixing of my symptoms which is why it's been hard to not only diagnose me but also to treat my Hypertension without throwing me into Hypotension. I have Postural Orthostatic HYPERtension and I have HYPOtension once the initial episodes hit me. There is little to no information on POTS-HYPERtension. There are many places to find info on POTS-HYPOtension and I'm glad for it.
I was in the hospital once for having exceedingly high Blood Pressure (223/201). I kept being told "we are trying to prevent you from having a stroke & then we'll worry about the other symptoms". The only symptoms I had were excitability, a headache from hell, fatigue from my heart being overworked & I was absolutely heat intolerant & it was 74 degrees that particular day & I felt like me skin was on fire. The team immediately got meds pushing threw me & it took almost 2 days to get my BP in check at 150/90. That was a good moment. Then, within minutes of my meds I plummeted to 70/30 with a heart rate of 22 & syncope ensued. The good/bad news, my dr. was standing right there, a nurse caught me and sat me right back in bed & my symptoms were caught & witnessed firsthand. That was one episode. It wiped me out for hours.
THIS is what POTS can look like.
and it kept going down. So, it was time to lay down for a spell.
I promptly met a cardiologist who told me he would do one test initially. They put me on a Tilt Table while being monitored the whole time. Sure enough, BP flew up the chart, HR was out of hand & trying to re-regulate me took too long for his liking when I plummeted. I've also had a Sweat Test & a Stress Test & failed both for their intended research. It was good to know I wasn't losing my daggone mind after all these years, but it was going to be lifelong & I had to learn how, to the best any of us can manage, to live with it.
Dr. Emmanuel Favilla
What upset me the most in my hunt & desperation for answers were,
1. The lack of dr's who know anything about this syndrome.
2. Many dr's don't believe your symptoms or think you dramatic.
3. If you happen to have an autoimmune disorder or a person is over weight, then everything goes under that umbrella which is simply dangerous & it needs to stop.
4. Not being believed by..............<------- insert names here.
5. If you're a female & see a male Dr., you clearly are an anxious or depressed person.
6. Jumping through hoops with insurances.
7. Loosing time living while recuperating from a syndrome I didn't understand which was stealing my life.
Good grief. I went through the gamut of emotions trying to find answers to not only the POTS but also other conditions for which I unfortunately live with. After years of trying to be taken seriously by what turned out to be gaslighting Dr's (2 of them), I was desperate, went to an Ambucare & found the most lovely Dr. there who sent me to my Dr. I still have today & a rheumatologist to boot. We then acquired my Cardiologist & added other pertinent medical care to my team. I will most likely, barring a miracle, never be my best physical self again. But it helps to know mentally, I was not crazy, I had real issues & it was a matter of being persistent at ALL costs to get answers.
For the love of all things good, get off the internet and see a real-life doctor & take your list of symptoms to their office. If you try to self-diagnose on the internet you will fall into dark deep bottomless hole. Let them tell you what their best medical guess or know is, then do research. Good doctors will encourage you to do so and even guide you to the best sites for your particular issues. If you don't like your doctor's answers for valid reasons, find a new doctor. Don't waste time.
My symptoms which admittedly can be confused with many other diseases or conditions which can make POTS difficult to diagnose & further, difficult to treat.
Irregular Heart Rate
Irregular, dangerously so, Blood Pressure (I've run from HR22 to 140, BP of 70/30 to 223/201)
Skin discoloration (I tend to run very pale or get bright red flares on my cheeks & neck)
Nausea (almost constantly)
Absolute Heat Intolerance (including taking showers which wipe me out)
Exercise Intolerance (though I still do to a degree)
Shaking (almost like a Hypoglycemia-low blood sugar attack)
Vision issues (blurred or constant wet eyes)
Insomnia or bad sleep from heart rate interruptions.
Syncope (rare in my case as I've learned to identify onset of symptoms)
Brain Fog (yes, it's real folks & it's a humdinger when it happens)
Lightheadedness (almost constantly)
Headaches (pretty severe but discernable from say a migraine {which I also get} or stress headache. It's a blood pressure headache.
Chronic Fatigue (arguably could be also caused by autoimmune disorder)
Dizziness (often but adaptable)
Appetite, either lack of or heavy craving for salt (which I'm not a fan)
Jaw tightness (generally from the elevated BP of POTS)
If I go HYPOtensive, I must nap for 3 to 4 hours after an episode.
Dehydration. Even if you drink a LOT of water as do I, you can still be dehydrated.
Malaise. (this is near constant & probably the hardest part of POTS for me personally. I don't like feeling sickly.
A cold is never just a cold. Those who have POTS- IYKYK
Dry skin, oye.
Raynaud's Syndrome
Peripheral Neuropathy
There are probably more symptoms I get but they are either not the nuisance or of great import as these listed above. The worst side effect has been the emotional infliction of knowing or unknowing, unkind or even brutally hurtful statements made from others.
For years I looked for answers, wanted to be believed & drove myself to near madness. I was in therapy thinking 'maybe I'm a hypochondriac' (not that anyone every suggested it outside the lame doctor I had & a few strays). I felt like life was passing me by. Time with my kids, my husband, for myself or for life in general. When it started, I was in good shape. I was not overweight by any stretch. I was fairly active even when inactive. My kids used to joke I could never sit through a whole movie without having to get up and do something. I would have a burst of energy and then simply crash without warning or reason. I would get the sudden onset headaches that were so bad I'd have to go the ER for a 'cocktail' (heart meds, muscle relaxer & pain medication) to calm them. I was a mess, still am medically to degree, but it's a sorted mess now. At least we know the ghosts I'm fighting, finally.
To say this took a toll on me (and my family to a degree) was beyond imagination. To have someone, family, say to me "I'll sleep when I'm dead" was utterly offensive. If I didn't nap after an episode, it could kill me if I swung back up to high BP.
Others would say "you just have to will (ahem, my motto in life is.... Get er done) yourself to do it". Sure & when I pass out from syncope or have a stroke, will you be there to pick me up or call 911?
One Dr. asked me (ahem-implied) "don't you think this is stress? I mean your raising a spectrum child". Like somehow my Aspie's Child had anything to do with a medical dysregulation issue.
Others have offered their unsolicited armchair psychology diagnosis (still to this day) & would imply I had depression or mania when in fact my autonomic system was cranking up or crashing. Now, I may have said depression or moments of, but no the reasons they were implying. I've had one doctor tell me "You've had a lot of traumas in your life. Perhaps you should work on your mental state & see how that helps you" (aka-gaslighting).
And it's not just strangers, it can be those closest to you who either grow bored, don't believe or give up on you & that is just gutting because what ultimately follows is unbelievable gaslighting. Then, more therapy follows to release or manage it all. A family member told me "Well Tammy, you need to pray more" (same person told me that is why my son had autism). Someone I thought to be a friend told me "You're broken Tammy. You need to get right with God". Well, God gave me this body so, CHECKMATE!
The emotional toll has been far worse than the physical & that is saying a lot. Living with POTS is a constant chess game even when you're doing everything right. You did not cause this. You cannot cure this. You can learn about it. Research the heck out of it. Listen to your body and know, this is not your fault. Don't get comfortable having a breakdown (have one as it's exhausting, but get back up to fight another day), don't hold any anger toward others for that which they know nothing about & don't stop until you get answers if you feel you may have POTS. Studies are showing that POTS often runs alongside autoimmune disorders. If you have any other medical problems, rule in rule out. Also, if you have had COVID, get checked. Dr's have found an increase of POTS cases amongst Covid folks.
Be curious if not demanding when it comes to your medical care. I am blessed to have a solid medical team as well as a good therapist & pretty decent insurance. Though I still have "tough days" (these are my breakdown feel sorry for myself for a bit then get back up, days), I now look at it through a 24hr window. Get through 24hrs and you can survive almost anything. Hang in there, you've got this.