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. -
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.Well, the pain in the side which may or may not be related has been transient for months. It really could just be a seperate muscle issue, because I do have pain in that side when I twist my torso either direction. Maybe it's connected only in that I have a possible potassium deficiency which made a pulled/tight muscle feel worse, or maybe I have low ferritin/iron levels, and that caused some muscle spasms/pain, and then when I got to low enough levels the high heart rate/terrible whole body feeling manifested. I also recall feeling less and less strong in workouts etc. so maybe this really was slowly building up over months and I just didn't notice. I don't usually wear a HR monitor unless I'm walking.
Been taking that Liquid I.V. stuff to boost electrolytes/potassium ( I feel better every time I take it) and trying to eat potassium rich foods, and since I started taking the Zyrtec and Pepcid AC, the past 4 days have been the best so far. I'm taking 10-15 mg melatonin, magnesium glicinate 500 mg, and chamomile + lavender tea to help me sleep, for the past 4 days I've gone from getting barely 2 hours a night to about 4-6. I seem to be recovering.
Yesterday after I posted the thread, all day I had a standing heart rate under 100. Down to as low as 80. Standing heart rate was usually around 85. And I didn't feel as bad. Felt almost back to normal. Today it was also trending under 100 for part of the day.
All good signs.
I'm going to add taurine to my sleep stack. So it'll be:
10-15 mg Melatonin
500 mg Magnesium Glycinate
Chamomile+Lavender tea
1000 mg taurineAnyone have any other supplements that you've experienced help with sleep? Taurine has definitely help me sleep deeper and longer before.
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Bump
Forum member @wester130 posted an interesting article about 7-keto-dhea potentially being useful for POTS and dysautonomia:
https://www.rthm.com/resources/blogs/7-keto-dhea-supplement-guide
Hope this helps.
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i think your body is processing something out. maybe there is some tissue that your body is restoring and sculpting differently and in the process it is releasing stored catchelomines. something like this can take like 3 weeks to get over. i reccomend cyproheptadine, and adding electrolytes to water. if your urine was cloudy i think it’s stuff getting processed out.
if you want relief from the muscle pain in your right quadrant and it feels too tender to massage that muscle directly, rolling a baseball or lacrosse ball or whatever on some other area of your body can help. like on your shoulders or bottom foot or anywhere else. i got relief from that by using a roller on my calves when i experienced something similar to what you’re describing.
but really try cyproheptadine , it can get rid of that doomy adrenaline dissasociation feeling pretty quick
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@Hearthfire said:
Thought I had a UTI/kidney stone/kidney infection.Feels almost like I'm poisoned
To deal with the acid reflux I always used a little baking soda in water
@Hearthfire said:
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.What about plain water. Roughly how much and when? And are you eating routinely or because you're hungry? Thirst and hunger can be strange.
@Hearthfire said:
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.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?
Maybe they're just used to seeing worse. It's not a particularly useful metric on its own. A time series and some tai chi can illustrate. Also check out the tennis staging of hypovolemia when well or able. Your sense that you're compensating and something's wrong can begin before that.
Maybe I need to get a blood pressure monitor and start testing it.
Get one anyway hearth, now or when you're well. They're cheap after all. Get all the cheap instruments and put them in a cartoon medical bag. Then you can humour someone else with them too.
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Thank you for that link. Very interesting. That description of POTS sounds exactly like what I was feeling that first week. Like adrenaline was constantly being dumped. Trying to sleep at night, wanting to sleep and knowing I needed it, but never feeling tired. Like constant fight or flight state. I will give the 7-keto-dhea a try, worth a shot.
Here's that excerpt from the article:
Dysautonomia and the Adrenal Burden
The situation is further complicated by dysautonomia, a dysfunction of the autonomic nervous system that affects up to 70% of Long COVID patients. Conditions like Postural Orthostatic Tachycardia Syndrome (POTS) leave the nervous system stuck in a perpetual "fight-or-flight" sympathetic state. Because the autonomic nervous system is misfiring, it places an immense, continuous burden on the adrenal glands to pump out adrenaline and noradrenaline just to maintain basic functions like standing up or digesting food. This constant adrenaline surge further depletes the adrenal reserves, exacerbating the HPA-axis dysfunction and the depletion of vital precursor hormones like DHEA. The body is effectively flooring the gas pedal while the gas tank is completely empty, resulting in severe autonomic crashes and a deepening of the metabolic crisis.--
i think your body is processing something out. maybe there is some tissue that your body is restoring and sculpting differently and in the process it is releasing stored catchelomines. something like this can take like 3 weeks to get over. i reccomend cyproheptadine, and adding electrolytes to water. if your urine was cloudy i think it’s stuff getting processed out.
if you want relief from the muscle pain in your right quadrant and it feels too tender to massage that muscle directly, rolling a baseball or lacrosse ball or whatever on some other area of your body can help. like on your shoulders or bottom foot or anywhere else. i got relief from that by using a roller on my calves when i experienced something similar to what you’re describing.
but really try cyproheptadine , it can get rid of that doomy adrenaline dissasociation feeling pretty quick
I did have this thought as well. As for cypro, I don't know if I need it but I will keep it in mind. I started taking Zyrtec and Pepcid AC (both antihistamine meds), a lot of people with POTS reported success with those and I started feeling a lot better the day I started them.
What about plain water. Roughly how much and when? And are you eating routinely or because you're hungry? Thirst and hunger can be strange.
I'm not exactly sure on my exact plain water intake before this, I just know I was definitely not drinking enough. I drink a lot of iced tea (black tea) with meals, like 2-3 16 oz glasses a day.. That's one reason I was concerned about a kidney stone, because I know tea has oxalates that can cause kidney stones. Ultrasound cleared me of kidney stone issue though. I still cut way back on the tea and coffee and am drinking a lot more plain water during the day, and I got a big bag of those Liquid IV packets from Costco. Been adding that to my water. Really good electrolyte mix, I always feel really good after drinking it. Gets my potassium levels up, which I was concerned about because of the muscle pains, fatigue and heartrate.
I am happy to report that overall I am improving a lot and some days I have been well enough that all symptoms seem to be gone or massively reduced.
One of the biggest things is my sleep has returned to normal. I can lay down and zonk out within a few minutes. No more hypnic jerks, no more insomnia.
Other big thing, is I don't have that fatigue and overall terrible feeling like I'm dying. It's like whatever hormone/adrenaline/cortisol whatever it was that was flooding my body is gone. I can relax. I am not having feelings of doom. I can sleep. Feels good man.
Making new PRs every week with sitting and standing resting heart rates. I had a 59 sitting resting heart rate 2 days ago, which was impossible when this started. I would be at 85 just while sitting before!
Last few weeks I have seen standing heart rates as low as 80, whereas at the start of this it would be 110-115 every day just from standing (it would jump by about 30-35 bpm)
I've been able to do more strenuous activities/work. Been walking every day. I tested doing some sprints during my walk the other day, and heart rate only went to 130-140, whereas when this started I was going to 130 just while peeing in the morning.
The only thing is I still do have some pain in my right flank, but it's less of a internal organ feeling and it's feeling more like some kind of muscle/tissue thing again. The right flank feels sore when I twist to the right. I might have something screwed up in my right muscle chain, psoas/QL/glutes, maybe it's aggravating my sciatic nerve. Not sure if that could have caused all the symptoms I experienced though. I will be doing stretches and exercises to try to address those muscle issues.
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