Anyone here diagnosed with POTS/MCAS/Dysautonomia?
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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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As I was reading this I could not believe that a someone else is having the same symptoms as me, almost identical. I also have had a lot of mold exposure in my life. My heart rate is highest in the morning and I get the feeling of panicking. It will be 70-80 laying down then shoot to 100-120 when I stand up. I went also went to the ER and they found nothing. And then you mentioned that the antihistamines helped, they help me a lot to. I have tested ketotifien, cyproheptadine, Benadryl, all help. I think this may come down to a mold colonization in our guts and mast cell activation issue. My current approach is to try and shift my gut bacteria to a healthier balance with fibers, PHGG, the Thorne fibremend product, sodium butyrate. One thing that also helped me is PEA supplement taken 3x a day(1500mg). It's a protocol by Guy Daniel's on YouTube The Microbiome Expert. If it's bad for you in the morning I would suggest drinking a bunch of BodyArmour or Gatorade upon waking, it helped me calm the adrenaline along with taking a PEA and maybe one drop of cypro. Something else I plan to try is injecting KPV peptide and then BPC 157 combination because KPV is a mast cell stabilizer and the BPC will help seal the gut. I also have had months of gut issues, bloating, gas, etc. I think the root cause is mold. You can try taking binders like charcoal, Mycobind, Cholestyramine(available from Mexican pharmacy online), bentonite clay. Good luck man
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Yeah, sounds like the exact same thing. Did you also have the terrible body feeling? It's hard to describe. Not really like being sick, just this terrible feeling, like at the worst of it I couldn't shake the feeling I was dying. That's what it felt like. And maybe I was having the "impending doom" sensation. I couldn't ever feel comfortable, weird muscle burning/pain sensation constantly in certain areas like my upper left back.
I think this may come down to a mold colonization in our guts and mast cell activation issue. My current approach is to try and shift my gut bacteria to a healthier balance with fibers, PHGG, the Thorne fibremend product, sodium butyrate.
Yeah I had the same suspicion, mold causing mast cell activation. I started taking a fiber drink supplement to hopefully shift my gut health for the better, made me more regular and I think probably contributed to turning things around for me. I'll check out those products you mentioned.
If it's bad for you in the morning I would suggest drinking a bunch of BodyArmour or Gatorade upon waking, it helped me calm the adrenaline along with taking a PEA and maybe one drop of cypro
I take a Liquid IV packet in 16 oz of water. It's helped a lot.
I also have had months of gut issues, bloating, gas, etc. I think the root cause is mold. You can try taking binders like charcoal, Mycobind, Cholestyramine(available from Mexican pharmacy online), bentonite clay. Good luck man
Yeah it definitely could be the root cause. I will check these out also. I had heard good things a while back about bentonite clay and how it cleared up all sorts of issues for people. I'll try either that or the charcoal. Maybe both.
Thank you so much for all your input, and I'm really sorry you went through this. I wouldn't wish this on anyone. Worst experience in my life.
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I've had self-diagnosed POTS for about a 5-7 year period, but have not had an episode in over a year. I searched it out by the specific symptoms, and was both surprised and semi-relieved to see that it is a thing. When I would go from a low to a standing position I would get tachycardia. It freaked me out at first. The short answer, I feel, is that it's a by-product of a stress-burdened body; often associated with hypothyroidism, poor digestion, adrenal fatigue, chronic fatigue, etc. Much of what Peat talks about. @luch , on this forum, mentions the vagus nerve, which I feel is a dysautonomia connection, which is just another part of the over-arching symptoms of a sub-par, chronically stressed body. All that you've mentioned I've experienced. For acute POTS episodes, nothing works better for me than cayenne pepper. I have NOW brand, supplemental cayenne on hand. I haven't had an episode in well over a year, but when I did, I'd open a capsule and place a decent amount on my tongue and hold it there, letting it take effect. I used to do that mixed with taurine and magnesium, as @CrumblingCookie suggests for cardiac excitation, but being that I'm very sensitive to supplements, the taurine and magnesium would have lasting, negative effects. The cayenne had the least of these, and most importantly, it worked the fastest, for acute POTS. If my symptoms were beyond just racing heart, tachycardia, but hyper-vigilance, restlessness, insomnia, and anxiety, I would take taurine. Nothing has worked better than taurine for me for that. But, you'll have to see what works for you. Magnesium used to work at times as well; and sometimes lysine. But my go-to used to be taurine.
These were my solutions for acute attacks. These helped me on the short term, but ultimately my greatest solutions were for the mind and spirit, to reduce the stress and anxiety.
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Thank you so much for the post Mossy. I'm sorry you went through that. Happy for you that you seem to have got it under control now for the most part. It gives me comfort to know that I'm not alone in this, and more importantly that I could get it under control to be able to live life without suffering.
The short answer, I feel, is that it's a by-product of a stress-burdened body; often associated with hypothyroidism, poor digestion, adrenal fatigue, chronic fatigue, etc.
That sounds like me for most of my life.
That said, as I mentioned in my last post, I have been improving overall. My base resting heart rates while sitting and standing have dropped, which while still high for me compared to where I was at the beginning of June, it's a vast improvement from June 19th and the 5 days that followed. My heartrates while doing work, working out, and walking have improved as well, and I would attribute my walks every day to helping improve the heart rates.
Still having some off days, but nowhere near as bad as when it started. Still having weird back/hip/glute/lower back/side pain that I'm not sure of the cause of. It's like muscle soreness/tightness.
For acute POTS episodes, nothing works better for me than cayenne pepper. I have NOW brand, supplemental cayenne on hand. I haven't had an episode in well over a year, but when I did, I'd open a capsule and place a decent amount on my tongue and hold it there, letting it take effect.
Very interesting. What is it about cayenne specifically that's calming the symptoms in your case? I've heard about cayenne before as a remedy for lots of things. Google search says it helps relax blood vessels, encouraging better blood flow. It also says capsaicin is approved by the FDA for nerve pain. VERY interesting. Don't know about your specific situation, but I suspect a sciatic nerve problem in my right side (from an old injury) might be exacerbating my POTS symptoms if not exactly causing it, and maybe the weird muscle pain
Ok, definitely trying the cayenne.
I was using taurine for sleep when I was having the bad insomnia, and it helped get me through that 2 week period, along with melatonin, magnesium glycinate, and chamomile + lavender tea. I am back to pretty much 100% on the sleep side. I can fall asleep within a few minutes, as was always the norm for me.
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@Hearthfire I did get the impending doom feeling but I did not get the body aches. This may be a fluke but I decided to take a course of Nitazoxanide which is an antiparasitc drug, and after that the heart palpitations seemed to calm down a lot. Not sure why but so far it worked. I also mega dosed magnesium for a few days and it calmed me a lot.
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