Ranga

8 hours ago, Jyoti said:

with a long term low back/leg issue that has recently been identified as stemming from the SI joint

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?

On 11/15/2022 at 3:06 PM, MikeO said:

Well if you do worry about bp's. going from 171/105 to 74/53 is a cause for concern.

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. 

1 hour ago, MikeO said:

Well if i had BP's like this i would be ecstatic. Yes layman's term abdominal pooling can cause issues.

😃. 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?

11 hours ago, MikeO said:

Thank You! @Momof2boys1girlfor resurrecting this thread it is helpful. For me i go hyperglycemic but the dietary changes still remain the same for this as well. 

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.

49 minutes ago, MikeO said:

I just purchased a humidifier. Day one seems to help.

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.

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. 

6 hours ago, MikeO said:

Well my normal morning oral temp is 97.1. I have seen lower thermal skin (covid temp check) go into the 96's to upper 95's on a cold day. temps always go up once i become active. could be just a circulation thing.

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?

1 hour ago, MikeO said:

Not seeing a POTS heart rate. I did look up the gut-brain dysregulation. Seems to be a neuro issue.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7589356/

 

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.

2 hours ago, DysautonmiaMatt said:

What app/device are you using? Would not mind capturing my data like that

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.

5 hours ago, MikeO said:

Well your looks glucose looks good. good job!. Diet may help with symptoms but what i have read you are steady as to what you eat. Saying this might want to try changing up what you do eat.

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.

On 9/30/2022 at 10:21 AM, MikeO said:

Not sure if this helps by any means but could there be a postprandial thing going on? While i my fasting glucose tests have hovered at about 107 (and i have tried to get that down) my A1C's have been good fasting as well. my non fasting have not been good. i just did a non fast test my numbers were 168 after 3 hrs. I also flunked a 3 hr glucose test. I do get some of the symptoms you are describing.

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.. 

34 minutes ago, MikeO said:

Well i am heat intolerant as well as cold intolerant. 80 degree weather i can handle much more not so good. saying this i can also feel the cold extremes (have to take a hot shower to warm up) I am not on board that this is a POTS symptom (sitting hr normal stand up and you go tachycardia) but more a ans or other issue. Keep in mind this can be manifested by other issues. Diabetes is one. 

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?

On 10/16/2010 at 12:46 PM, Heiferly said:

The sensors in your stomach that sense fullness (I believe they are stretch mechanoreceptors but I would have to look it back up in one of my medical textbooks to double-check that as I don't trust my memory 100%) send the message via your vagus nerve to activate your parasympathetic nervous system. Recall that parasympathetic nervous system activity is involved with digestion (and this process is opposed by the sympathetic nervous system, so when for example your body goes into "fight or flight" mode, digestion would be temporarily halted because that bloodflow is needed elsewhere for more urgent purposes like going to your skeletal muscles so you can run away, etc. ... obviously it would be a bit lame if you failed to run away from a predator because you were too busy digesting your sandwich, LOL).

I don't know how much gas would have to build up in your stomach to activate the stretch sensors, or if this is even possible to build up that much pressure (I would think one would end up burping before that much pressure would build up unless there were severe dysfunction somewhere blocking its release, but I'm not sure).

At any rate, the stomach fullness is one of the triggers for your PNS to get your digestive tract on the move (which is why many feel the urge to defecate soon after eating a meal ... contrary to popular misconception, you're not passing the food you *just* ate, it's that the stimulation of your digestive process via the parasympathetic nervous system has resulted in the urge to have a bowel movement, evacuating whatever is already at the "end of the line" ... i.e. in your colon ... the food you just ate is just making its way into the small intestine (unless you have a GI disorder that affects motility).

Aside from mechanoreceptors, another thing for all of us to keep in mind is that some dysautonomia patients test positive for excessive sensitivity to certain hormones that are used to send signals within our autonomic nervous system. This can result in flare-ups of symptoms any time a stimulus triggers the release of one of these hormones to send a message to some remote receptor elsewhere in the body. Personally, I think it's fascinating to read all of the medical literature but when it comes down to my personal day-to-day life it's more useful to just know what my triggers are and either avoid them or (if they're unavoidable) counter them as best as possible, without worrying terribly much about the hows and whys. Most of what I learn in my medical textbook reading isn't going to translate to practical changes in my life, regardless of its applicability to my case. (At least that's been my experience, your mileage may vary.)

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. 

22 hours ago, DysautonmiaMatt said:

You may want to research Dr Derrick Lonsdale and thiamine. He wrote a book on it and dysautonomia. Maybe the SSRI did something to help your GI tract or created the issues you are now dealing with. There are more serotonin receptors in gut than in brain I have read.  I do agree with @MikeOBenzos and SSRIs etc should be used very carefully but seems most docs will script SSRIs without even giving it any thought - like they do no harm.  I read an article where a SSRI was compared to a sink. The SSRI blocks the over flow drain so body makes serotonin endlessly and the sink can overflow/Serotonin syndrome. 

 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.