Ranga

Very interesting. I have chronic SI joint issues, predominantly on my left side, and my chronic neck pain is also on the left side where the ganglion of the vagus nerve originates. The SI joint issues flare up if I sit for long, so as long as I keep moving, and do my yoga, it is under control. But I do think there maybe an issue with my hips or leg length, that cause the SI joint, IT band, psoas, thigh and hamstring to tighten up, which then can cause circulation/breathing/GI issues. Acupuncture helped me get over the worst SI flares when the cortisone shots didn't help beyond temporary relief. This was over 20 years ago. Today I rarely have SI joint or cervical tightness, but I have all the other symptoms for the past 4 years, whereas earlier I only had those two issues along with IBS (burping, frequent BMs). Something changed since I stopped smoking, and had auricular acupuncture for smoking cessation. It then was made worse by mirtazapine, an antidepressant that was prescribed for the nocturnal sleep issues, once I stopped the drug.

https://www.caringmedical.com/prolotherapy-news/vagus-nerve-compression-cervical-spine/ I can't believe how many of these symptoms listed in this article I have - 1. Increased diastolic BP 2. Low HRV 3. High cholesterol 4. Hemifacial spasms/twitching 5. Ear fullness/tinnitus 6. circadian rhythm sleep disorder 7.chronic pain 8. fatigue 9. dizziness, lightheadedness 10. weight loss, 11. poor focusing, 12. exercise intolerance, 13. emotional lability 14. heartburn, bloating 15. brain fog, 16. vision changes 17. flushing 18. Impaired thermoregulation I also have had chronic sacroiliac joint issues and I am now wondering if the pelvic floor and cervical issues are both contributing to my condition. Does anyone else have a similar condition? I have had chiropractic work before, but it provided temporary relief. I read that a stellate ganglion block may also help for long term relief.. Wondering if others have tried this?

I'm fortunate that I don't have to deal with this amount of variation. In my case it's the GI and thermoregulation that are challenging more than actual BP or HR variations.

😃. I guess it's all relative.

I have always suspected that my dysautonomia has something to do with blood flow in my abdomen/pelvic area, as most of my symptoms are triggered when there is a change in blood flow there, and it started when I lost a lot of weight. Typically, these are triggered when going from standing to supine. I am mostly fine standing. Interestingly, on days when I am symptom free on waking, I get triggered following pelvic twists in yoga, but when I wake up in a flare, the same pelvic poses help clear my symptoms. Also my symptoms get better after BMs, or after food. For example, my BP was normal on wakeup, 138/93/70 after yoga, and then 129/80/82 after a BM. It appears that my gut/intestines play a major role in blood flow changes, and I am very sensitive to that for some unknown reason. I came across a few articles that seem to indicate splanchnic blood pooling as a potential trigger for dysautonomia/pots. I have chronic IBS and it appears that this could be also related to the blood pooling. https://grantome.com/grant/NIH/R01-HL122847-01A1 https://www.dovepress.com/postural-tachycardia-syndrome-current-perspectives-peer-reviewed-fulltext-article-VHRM "Symptoms of IBS, food intolerance and allergic sinusitis, are commonly reported in individuals with POTS.7 Although rarely performed, plethysmography may demonstrate splanchnic venous pooling in patients with IBS.8 The baroreflex response to reduced venous return (consequent to histamine or localized small molecule related vasodilation) can result in POTS. Nuclear medicine studies can demonstrate delayed gastric transit times, raising the possibility of an autonomic neuropathy; however, an increased awareness of symptoms (hypervigilance) may also explain some of the concurrence of IBS and POTS." "While the peripheral and splanchnic vessels are most commonly implicated as the sites of venous pooling in POTS, pelvic vein varicosities may also result in significant venous pooling and can potentially be identified using transabdominal or transvaginal pelvic duplex ultrasound." Anyone have any experience with doctors testing for this?

I just saw this thread, and it seems to make a lot of sense.. I used to have quite a bit of sugar until my diet change 4 years ago, that coincided with my going off the antidepressant.. Now I am wondering if that has triggers my dysautonomia. There was one post from Becia about levels below 90 causing symptoms, and the one from science girl about sugar being a better puller than salt, and using caffiene, IBS, etc.. it all seems to come together. I do check my sugar, and notice when it drops below 90, I have issues. Of course, low blood sugar may just one of many contributors to our condition.

How does a humidifier help? My indoor humidity is pretty good. It appears to be more due to the temperature of air, although I suspect dry air of any temperature can make the cold feel worse.

Iam in a flare right now and I realized that my problem is when cold air hits my bare skin, it seems to trigger my nervous system, and can take hours to return to normal. When the ambient air temperature drops drastically, due to either colder weather or due to AC, my body struggles with thermoregulation, BP regulation and causes a whole bunch of downstream effects -different parts of the body are hot/cold, sinuses/nostrils dilate and constrict causing breathing issues, gut and bladder are either stuck or overactive, and legs (esp toes/feet) can be cold/hot with paresthesia, cramps, and spasm. I have tried covering up, having warm showers, breathing, exercising, eating, yoga, acupuncture, having caffiene to hasten the recovery from a flare,with mixed results. Caffiene seems to be almost like the miracle drug to quickly reset my nervous system/circulation/thermoregulation. Keeping my lower body warm and upper body cool seems to be the way to go, but my gut comes in the way :).. When it's moving well, circulation is good, but when there's more stuff happening at the gut, my upper body heats up, and my legs get cold. Curiously, the first time the temperature drops, my body seems to be fine, but then have a delayed reaction hours later or the next day, before it adapts to the new temperature, as long it stays stable. Questions / advice - Why does caffiene have such a big impact? I have read that it vasoconstricts the head, and vasodilates everywhere else, which explains the return of circulation to my hands and feet, and opening up my sinuses/nose. I have also read that it increases sympathetic activity and BP, but in my case, it appears to lower my BP, and alleviates my fight/flight/panic state. Interestingly, a cold trigger also increases my BP and fight/flight response, so this just baffles me. How do I minimize the chances of a flare? I have tried covering up and layering up, which helps on most days, but the heat from the sun and hot/cold air from the vents can throw the body into confusion about covering up/removing layers, especially when indoors and supine/at rest. I seem to have less issue with thermoregulation outdoors, and when I am upright. It seems impractical to spend 24x7 standing/walking outdoors :). The delayed response to heat/cold is probably the most challenging because many times I don't get the signal that the body is overheating or cold until its' too late. Also, as the temperature increases in summer or cools down in winter, getting the ideal indoor temperature becomes a challenge. I get colder at higher indoor temperatures in summer/warm ambient air and warmer at lower indoor temperatures/cold ambient air in fall/winter/spring. Having hot air blow from the ceiling makes it worse as it hits my head first which makes it difficult to breathe. Any suggestions on keeping a constant ambient air temperature indoors without making it a costume party or constantly meddling with the thermostat?

Today we had a spike in weather into the 80s after a week of sub 65 degree weather. I didn't feel the heat at all, and I was also covered in a jacket sitting in my car and my ac vent was blowing warm air. It was only after my daughter reacted to the heat did I check the vent and realize it was hot. Only after I splashed my face in cold water and then went on a walk did I start feeling the heat and some sweat. Interestingly when it's colder, i can feel the sun's heat quite sharply at times. I understand that the warm C fibers that detect heat are generally slower to react than the cold C fibers. Is this also a dysautonomia thing? Has anyone experienced this?

Did it in 2021. Seemed normal except for Free T4 at 0.97.

Yes it definitely is a circulation thing, but what seems to happen when I cool down, is my abdomen/pelvis starts acting up - multiple BMs, multiple peeing episodes, etc. It takes a couple of hours to warm up enough, sometimes by warming my feet in warm water, having something dense to eat to warm up the gut, before I am able to lie down, but if I cover up my core, I overheat, so this can be all night process and I am just lying down and resting most of the time, and If I am lucky, I can fall asleep. When REM sleep hits, my thermoregulation is off again, waking me up. The struggle is to retain body heat once it cools down, without overheating. It's a fine balancing act, and seems to get harder in cold weather.

Today, I woke up feeling nice and warm. Then when I went out for a walk, the cold wind hit me along with the sharp sun, and since then, my body has been struggling to get to balance, and I am either too cold (especially the shoulders) or too warm (in the core). I find that my BP also goes up when this happens. I just happened to check my Fitbit skin temperature, and noticed a drop in skin temperature today. And my body temperature (oral) was 96.1, while it's typically 97. Interestingly over the weekend, I was outdoors most of the day in colder weather, and my skin temperature went up, but apart from overheating a bit when in direct sun, I wasn't affected by the cold. Anyone have experience with tracking their skin/body temperature who can interpret what's going on?

Today, I woke up feeling nice and warm. Then when I went out for a walk, the cold wind hit me along with the sharp sun, and since then, my body has been struggling to get to balance, and I am either too cold (especially the shoulders) or too warm (in the core). I find that my BP also goes up when this happens. I just happened to check my Fitbit skin temperature, and noticed a drop in skin temperature today. And my body temperature (oral) was 96.1, while it's typically 97. Interestingly over the weekend, I was outdoors most of the day in colder weather, and my skin temperature went up, but apart from overheating a bit when in direct sun, I wasn't affected by the cold. Anyone have experience with tracking their skin/body temperature who can interpret what's going on?

Yeah. I have probably exhausted all there is to read on gut brain axis. Until 2017, only my gut was acting up - no gut-brain issue. In 2017, post nicotine cessation, and some auricular acupuncture (which hits the vagus nerve), I started experiencing gut-brain issues especially with gluten including sleep disruption. Post mirtazapine in 2019, is when I developed a whole slew of ANS issues in addition to my pre-existing ones. This includes thermoregulation, paresthesias, POTS like issues, mental issues. I have checked my gut microbiome health, my gut inflammation markers, bacterial overgrowth, food sensitivities and have resolved any issue. So that leaves the specific pathway - temp/pressure triggers -> C fibers/baroreceptors ->ANS (vagus) -> CNS (hypothalamus) -> HPA and gut-brain axis via vagus nerve. The fact that it happens at rest and when I fall asleep/wakeup, means something is wrong when the body activates the parasympathetic nervous system.

I have been using a Fitbit for the past 4 years. RBC and H/H was ok the last time I checked. Most of my numbers are normal. It appears to be some combination of thermoregulation and gut-brain axis dysregulation, and maybe some elements of pots.

This last 10 days, I have had alternating nights of sleep - one night of great sleep, and one night of no sleep due to flares. It appears that my flares most often cause a spike in BP and a drop in HR at rest, and are sometimes accompanied by poor thermoregulation (hot head / cold extremities), slow gut that interrupts my sleep with burping/air rushing up throat/nose as I fall asleep), and brief spO2 dips. Warm showers, movement, breathing are my tools, but they don't help some nights. Interestingly, during the day, when I have a flare, caffiene seems to miraculously reset the body, atleast for a few hours. And to some extent - exercise and showers. It appears to me to be an issue with vasodilation vasoconstriction at different parts of the body that aren't working right in response to triggers. Anyone else going through a similar experience? I would really appreciate some tips to cope, as I am running out of ideas to try.

I do change up what I eat within a range of foods, and as I mentioned there is no correlation to the food. There is almost always a slow gut involved, and the slow gut can get aggravated by a heat/cold/pressure trigger. In general, my body cools down between 2-4PM and starts warming up around 5pm. My gut is usually most active 5-7am, and then 5-7pm. But if there is a temp/pressure trigger in the day, there is no release at 5-7pm, it hits me when I lie down at night around 11, and then can go on through the night. I do not have all the symptoms of gastroparesis, but there is a build up of gas that is unable to move downwards, and can trigger all other symptoms. I have tried breathing, exercise, simethicone etc. which can provide some relief, but some nights, I just have to endure it. All I am focused on at this point, is to see if I can reduce the number and duration of the nightly flares by taking preventative steps earlier in the day - hydration, exercise, keeping the feet warm and head cool, lie down after food and get the gut to move - every little bit helps.. I suspect that norepinephrine (slows down gut) and acetylcholine (increases gut motility) dysregulation is the root cause, and it appears to be in response to heat/cold stress.

I checked my post prandial sugar at 2 hrs - it's pretty consistent in 120-130s.

@ramakenteshjust checking if your adrenaline rushes subsided. I have intermittent flares when this happens, and in my case, most often it occurs when there is a drastic shift in temperature (usually a cold dip/trigger). This ends up slowing down my GI tract, and I have trouble with movement of air downwards.. I am fine through the day when I am up and about, but it usually hits me when falling asleep. I feel the root cause is parasympathetic malfunction in response to a sympathetic activation eg. Cold, that is causing this, and it takes a while before the body adapts to the change. There is also possibly some vasodilation/vasoconstriction issue going on. I find caffiene and warm showers to help a lot in reducing the duration of the flare by getting the circulation going. Just curious if you have any other issues like high cholesterol, low metabolism, trouble gaining weight etc..

I agree that it doesnt map to POTS, and could be more of an ANS (vagus) issue. Interestingly, caffiene and warm showers seem to help reset my symptoms pretty quickly, which seems to indicate some sort of systemic vasodilation/vasoconstriction issue. I have to go back to my journal, and I find that most often, a cold trigger like cool/cold ambient air at rest throws this off balance, and it takes a while to warm up and get back to homeostasis. The mystery is how the gut, legs and head are conected in getting the body back to normal. I do not have as much trouble when I am outdoors or when active/upright. When the gut is stuck, my upper body is warm, with less blood flow to the extremities (with cooler ambient air) , when the gut is moving, upper body is cool, and extremities are warm (typically when ambient air is warm). There is also a circadian component that throws this off - body warms up around 4-6AM/6PM, cools down 12-2AM/PM.

In general, I prefer heat to cold. However, I became both heat and cold intolerant 4 years ago. Acupuncture has really helped with heat tolerance, but I find that I still react strongly to cold triggers. The biggest impact is on the GI tract - I get reflux, a lot of gas and bowel movements, almost always at night when falling asleep. It takes me a day or two to adapt as long as the temp/pressure is consistent. Other symptoms that can act up are cold feet and leg paresthesia, as well as sinus pressure changes. I have read that cold exposure stimulates the vagus nerve and parasympathetic activity, but in my case, it appears to trigger it in excess, which then triggers the sympathetic activity with fight/flight response. I am perfectly comfortable in 100 deg weather, but as soon as I get into AC, or there is a cold wind, my thermoregulation is off. Anyone have a similar experience and what has helped reduce the excess parasympathetic response, especially at night?

Hmm... I have searched and posted all over the place, and this is the first time someone seems to have described what is happening to my gut. The mystery is why this happens most often at night between 11-3AM, and causes other downstream (leg paresthesia/cold feet/gut noises) and upstream symptoms (sinus pressure/burping/fear) along with thermoregulation issues. I get into a cycle as I am falling asleep - heat up, reflux/burping, high BP, bowel movement, prolonged burping, feeling cold.. rinse and repeat until I run out of gas, BMs and peeing. I am right now going through a flare with alternate nights of sleep and GI flare, and I am mostly symptom free during the day. Nothing in my diet has changed day to day.

Yes I am aware of all that you have mentioned. I was on 7.5mg as well. @MikeO

I have not taken Lexapro but I was on remeron/mirtazapine for 18 months, and I developed dysautonomia when I stopped it. I would be very careful with ADs for anything other than severe mental illness

@MikeOhave you observed that different parts of the body need to be at different temperatures to be comfortable? In general, I feel better if my head is cool, andy feet are warm. Avoids the sinus pressure/stuffy noses when vasoconstrictor, and warm feet helps with both paresthesia and gut motility.