Anyone here diagnosed with POTS/MCAS/Dysautonomia?
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Looking for advice from anyone who has been diagnosed, or even if you're not diagnosed, I know there are some very knowledgeable people here who may be able to give some ideas on what's going on, or ideas of things to try.
I'm 99.9% sure I have POTS. My heart rate from resting laying on a bed goes from 75-80, to 110+ when I stand, and I feel terrible. I've measured it multiple times. 30-40 BPM jump from laying to standing. This all started very suddenly around the June 19th . I had been having pain in my right side that's been transient since February 26th when I was doing chainsaw work, that I thought was just a muscle issue. It came back a few days before the 19th, and then I got severe fatigue and racing heart in the early AM. Thought I had a UTI/kidney stone/kidney infection.
I ended up going to the ER twice, 4 days apart. I had two EKG, ultra sound of my abdomen, chest X-ray, chest CT scan, multiple blood tests, multiple urine tests.
EVERY single thing came back negative. No infections, no kidney stones, no UTI, appendix is fine, liver looked good, heart scan came back good, lungs good.
By all appearances based on the tests and scans, I am healthy as a horse. But my resting and active heart rate is so damn elevated from normal. And I've felt so bad most days the past 8 days. It's really hard to explain. It's like if you worked out really hard with a bad cold. Body aching, fatigue. Just a shitty feeling. There's this overwhelming sense of I guess "impending doom", I guess from the adrenaline/heart rate spikes, like something is wrong. Feels almost like I'm poisoned, or there's something flooding my body that shouldn't be and my body is unable to get rid of it, maybe stress hormones?
The doctor on the second ER visit basically just referred me to a cardiologist for a POTS test, I guess they think that's what it is, and I had already been thinking it from the research I was doing days previous after my first ER visit.
From looking at reddit/facebook threads where people discuss POTS, I found out that a lot of people take Zyrtec (cetirizine hydrochloride) ( which is a histamine 1 blocker) and Pepcid AC (Famotidine), which is a histamine 2 blocker.
Since I started taking those, I had the best 3 days since this started, which is basically a less shitty feeling day. Heart rate more under control and not as much of an overwhelming "bad" feeling. I guess it can take time taking them to get things under control if it's a histamine issue, and diet changes will need to be made, already starting trying that. If it's a histamine problem it makes me wonder if my likely POTS is mostly a MCAS reaction (Mast Cell Activation Syndrome) problem, maybe due to mold which I suspect I have in the walls of my room, and a high histamine diet.
I have also had chronic acid reflux and bowel/gut issues for years. I thought maybe this could be related, seems a lot of the POTS diagnosed people have that as well. To deal with the acid reflux I always used a little baking soda in water, usually several hours after eating so I don't disrupt digestion too much, hopefully the Pepcid AC works even better and rids me of this problem.
Some of the symptoms POTS diagnosed people have that I have also been experiencing.
Extreme fatigue
Coat hanger pain (mostly on my left back, like a constant burning, like an overworked muscle, but different, and transient)
BAD insomnia the first 5-6 days. I could barely sleep from the discomfort. Whenever night came and I laid down to sleep, I didn't feel tired. It was almost like I had constant adrenaline dump. Fight or flight mode all the time. Hyper-vigiliance. I had hypnic jerks every time my body tried to start falling asleep, I guess in my state I noticed these much more easily because I wasn't as drowsly as usual, and every time it happened my heart rate would spike and make me nervous.4 days ago when I stood peeing in the bathroom my heart rate jumped to 140. At the beginning of June I was doing walks + sprints, and I would need to do a good sprint to get my heart rate that high. I've always had good cardio the past 8 years. Now I get to 140 just by standing to pee in the morning. Shit sucks man.
Any advice or thoughts would be much appreciated.
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@Hearthfire said:
It came back a few days before the 19th, and then I got severe fatigue and racing heart in the early AM.What's the weather like where you are hearth?
I ended up going to the ER twice, 4 days apart. I had two EKG, ultra sound of my abdomen, chest X-ray, chest CT scan, multiple blood tests, multiple urine tests.
Did they take your blood pressure a few times?
By all appearances
How do you look to yourself in a mirror? Anything at all of note to yourself?
I have also had chronic acid reflux and bowel/gut issues for years.
Are you regular the other way?
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Bowel/gut issues, POTS, dysautonomia brings Thiamine to mind. I would skim over Dr Derrick Lonsdale's work:
https://hormonesmatter.com/thiamine-connection-pots-wernickes-everything-in-between/
https://orthomolecular.org/resources/omns/v21n16.shtmlElliot Overton has a collection of Thiamine info as well.
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What's the weather like where you are hearth?
Its been warming up a bit, I'm in the Pacific Northwest, been getting into upper 70's and 80's. Heat was exacerbating the heart rate levels and overall symptoms of feeling bad. In my research I noted that people with POTS also by and large have problems with heat making their symptoms worse.
Did they take your blood pressure a few times?
Yeah, blood pressure taken each time I went. It was 147/105 at one point during my second ER visit, but it came down. They said I was not hypertensive though? Isn't 147/105 pretty bad? ChatGPT says it's high blood pressure stage 2. But it did come down by the time they discharged me, it was like 130/something, and they didn't seem concerned about the blood pressure. Still seems high. It might have been even worse at home, wouldn't you know it every time I finally got seen each visit, my symptoms subsided massively.
Maybe I need to get a blood pressure monitor and start testing it.
How do you look to yourself in a mirror? Anything at all of note to yourself?
Yeah so I was trying to see if anything looked different over the past week. Eyes, tongue, etc. Couldn't really detect anything off.
Are you regular the other way?
My gut health overall and movements have been pretty terrible the past few years, should be way more regular. Its been worse the past 7 days. I started taking a probiotic fiber drink powder (psyllium husk) and it seems to be working.
Bowel/gut issues, POTS, dysautonomia brings Thiamine to mind. I would skim over Dr Derrick Lonsdale's work:
https://hormonesmatter.com/thiamine-connection-pots-wernickes-everything-in-between/
https://orthomolecular.org/resources/omns/v21n16.shtmlElliot Overton has a collection of Thiamine info as well.
Thank you very much for the info, I'll check these links out tomorrow.
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@Hearthfire
Do the VCS test online on a proper desktop screen for the mold suspicion.
Get a H. pylori breath testing at a gastroenterologist's office or serological IgG + IgM blotting at a lab for the reflux thing.
Get a serum B12 and homocysteine reading at a lab for both the reflux (if neurological sphincter dysfunction) and dysautonomia.
Get a hydrogen breath testing upon 75g oral glucose at a gastroenterologist's office for the gut issues to rule out SIBO. Get a stool culture for fungi too. If ever going for a gastroduodoscopy insists on a duodenal aspirate sample with histology for giardia and fungal culture.started very suddenly around the June 19th
That's just over a week. Dysautonomia as a distinct self-sustaining entity per se is a thing that develops over weeks and months as a result of other functions being screwed up. For you it's a reactive, secondary symptom to an acutely underlying primary issue.
As for the resting heart rate and tachycardia when standing maybe you are simply lacking fluids or electrolytes like sodium, potassium, magnesium or calcium because of the heat or traveling or your gut issues.147/105
What the tachycardia in POTS does is keep the BP at about normal because the peripheral vasoconstriction doesn't match up but with this BP reading it's just not typical for POTS but more likely a cardiac or cardiac nerve thing instead of an overaching, system-wide-nervous system issue.
Causes of cytokines and LPS, lack of electrolytes and fluids seems most likely.
You may even find some decade-old pharmacy products comprising b12, b6, potassium, magnesium and some taurine which can acutely ease such symptoms at the level of cardiac excitation.
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