Introduction - Movement (or lack of) of gas/air triggering most of my symptoms?

[Ranga]

Thank you for having me on this forum and apologize in advance for the long post. I have great empathy and appreciation for this community, and my symptoms sound very trivial compared to some of you. 

Firstly, I must say that in the 4 years that I have been researching my symptoms, this is the only place where I found not one but three posts that validated my current experience - 

Blood pressure variations

Dysautonomia causes

ANS and Blood Vessels

A brief history on my health - 

vasovagal syncope - 2-3 incidents in my teens, fainting from heat exhaustion, normal BP is 100/70, 

chronic GI issues - mainly burping, frequent BMs with incomplete evacuation.

No other physical or mental health issues other than high cholesterol (genetic).

In 2017, I had an unexplained episode of GI flares at night that lastes 3 weeks - mainly waking up from sleep with burping, bloating, trying to evacuate bowels.  I lost 20lbs, and I was put on mirtazapine (H1, H2, and H3 antagonist, and alpha-2 adrenoreceptor antagonist), to help with sleep.  The medication helped me sleep, but did not treat my GI issues, and I started having some symptoms of autonomic dysfunction (eg. vasomotor rhinitis with exposure to heat/cold, adrenaline rushes when falling asleep etc.).

After I stopped mirtazapine in 2019, I developed major dysautonomia symptoms -  Primarily sleep deprivation due to GI issues (erratic GI functioning - too fast/too slow clearance of gas, frequent nights of constant gas, BMs or urination), adrenaline rushes, hand and leg paresthesia, muscle pain, blocked sinuses/nose causing shortness of breath, sensory hypersensitivity (light, sound, smell, touch), delayed adaptation to  changes in heat/cold/pressure (both internal/postural and external). This also has caused physiological anxiety, panic attacks, fearful of change, hyperawareness,  PTSD type of reactions due to number, frequency and randomness of mental and physical symptoms. 

I have visited cardiologists, gastroenterologists, autonomic specialists who agree that I am dealing with autonomic issues, but at this point, they have not found anything to treat, other than saying it could be a vagus nerve disorder. 

After years of research, I pretty much arrived at my theory that faulty vasodilation and vasoconstriction is causing most of my symptoms, and it is most obvious when dealing with drastic changes in heat/cold/pressure. 

Primary Symptoms

However, there is a specific pattern  during a flare that I was looking for answers to, and potential ways to cope with these. 

The three main areas that are affected are the gut/pelvis (visceral sensitivity, burping, reflux, gas, BMs, Peeing), head (sinus pressure, blocked sinus/nose, tinnitus), and extremities (legs/hands paresthesia, stiffness), and depending on the severity one or all could be affected. It mostly  when there is a significant change - eg. weather dips by 10 deg, or barometric pressure drops.  If it then stays the same, the body adapts the next day.  This also happens when the difference between daytime/nighttime and indoor/outdoor ambient air temperature varies a lot.

A typical trigger would be exposure to cold or heat or pressure (which is drastically different from current state - both internal and external) - 

1.  Immediate reaction is a fight/flight response combined with gut instability (feeling stuck/visceral pain etc.), which
2.  results in elevated BP (130-150/90-100) and at times elevated HR (in the 90'100s) and increased sensitivity to heat / cold, and the body goes into a confused state of thermoregulation, and I find it very hard to figure out whether to cover up or cool down. The most challenging times are when there is both heat (hot sun) and cold (wind) like in the SF Bay Area. 
3.  I either cover up and walk around trying to burn my anxiety, or I lie down and belly breathe or try some restorative yoga poses. 
4. Most of the time, I am fine moving around with underlying anxiety, blurry vision etc., and around 6PM, I notice that my body's ability to thermoregulate returns and I am fine from 6PM-10PM.  
5. On some days, when I lie down, my body goes through a pretty predictable pattern of overheating/overcooling - it starts with the gut feeling stuck, then when I lie down there maybe a small release on my left side (which is a good sign), and if not, as I am falling asleep, I  get these bursts of air as either burps or going straight through to the nose/sinuses (like a snoring sound), which startles me back awake with a  fight/flight response. 
6. Then the long process of clearing the air/gas from the gut begins through breathing - gut noises on the right side indicate it is ready to move, and that could be followed by a heat surge (this can also wake me up), then either reflux or just burps as it gets to the center, and when it moves to the left, the left sinus may clear up, and then if it makes it to the sigmoid colon, then usually there may release of gas followed by leg paresthesia/heating. Once I get to this stage, I could have multiple cycles of this, each ending with a BM or gas, or in some cases,  just gut noises through the night.  This can dsometimes take the entire night keeping me awake, and if the environment stays the same, I am usually back to normal the next night. Once this process finishes, I am usually ready to sleep with great temperature regulation and symptom free. 

Other observations that I jotted - 

1. My left side seems to be most often affected - left toe/calf/sigmoid colon, neck, sinus). 

2. There is a connection between the gut and the legs, especially on my left leg -

• When the gut moves, and releases gas, I get leg paresthesia/heat, when it is stuck, I can get leg cramps and stiffness, especially between my 3-4th left toes. 
• Excess heat or cold typically can cause the cramps/stiffness and a feeling of wetness in my left calf
• Warming feet usually means warm gut. Leg raises also help warm the gut. Keeping the feet and gut warm usually means I am symptom free.
• Rotating/stretching/massaging my feet/legs can trigger gut movement
• When my ankle joints start clicking, my thermoregulation is great. 

3. There is also a connection between the sinuses/head and gut -

• When the gut is moving well, the sinuses are usually clear without sinus pressure.  
• Pelvis twists / bends / raises affect sinus pressure, and can also induce sleep/relaxation

4. My HR and BP never go off the rails - Resting HR varies from 60-80 BPM, and BP goes up when thermoregulation is off.  Interestingly, my diastolic BP is on the higher side most often, when systolic is normal. 

5. My sleeping HR pattern is all over the place, and I rarely get the typical curve. I typically have high HR at sleep onset and then it dips close to wakeup, and almost always I have a HR spike when I wake up, triggered by gas/peeing urge. If I go back to sleep at this time, I get an an hour to 90 minutes of disturbing thoughts, and my gut runs through the pattern as above.  I rarely get a consistent 6-7 hours of symptom-free uninterrupted sleep. It is mostly around 5 hours of sleep between  delayed sleep onset or/and early awakenings.

6. I have checked O2 saturation and there appears to be no sleep apnea involved. 

7. Warm fluids / caffiene improves my symptoms, so do warm showers.

8. I am mostly symptom free between 6PM-10PM with good thermoregulation, and good circulation in my legs. Afternoon times (2PM-4PM) lower body heat causing cold feet (probably because blood flow goes to the gut after food). Body warms up around 5-6PM

8. Burping / gas release/BMs seems to be triggered by body movement (postural changes) and heat/cold triggers as a way to get to homeostasis, rather than due to any underlying food sensitivities/digestive issues.  

My Hypothesis

There appears to be an issue with the functioning of the unmylinated C fibres, which are causing a delayed adaption to thermal changes through appropriate vasodilation/constriction. The drug withdrawal potentially has caused issues with norepinephrine regulation and autonomic function especially through its impact on the adreno and histamine (H1, H2 and H3 receptors). My pre-existing IBS is also may also be related to autonomic function, that was adversely affected by the drug withdrawal.

References - 

Baroreflex mechanism in IBS

Sensory nerves and Airways

Sympathetic regulation in thermal stress

Nitric Oxide and Sinuses

Nitric Oxide in the gut

Nitric oxide and the ANS

Questions / Advice

1. Does anyone have a similar experience where the gut appears to have such an impact on autonomic function, especially through the movement of air through the body? Especially the night time flares?  Could this be related to Nitric Oxide based on the links above? 

2. What other conditions should I be looking at ruling out, especially with the left sided nature of the symptoms? 

• potential neuropathy/vascular issues on my left leg - no investigation done yet.
• An old abdominal scan showed some aortic calcification
• Absent ankle joint reflex diagnosed by autonomic specialist. I have not opted for TILT and QSART tests based on my observations.

3. Currently, my daily routine of yoga, hikes and breathing keep me going, and I do enjoy the symptom free evenings.  I am really looking for non-drug options to help reduce the night flares. 

[Pistol]

Hello @Ranga! Wow, that was quite the post! Interesting observations! I found some similarities in your symptoms ( I have hyperadrenergic POTS and NCS ). 

The difficulties adjusting to weather and barometric pressure changes also are present in my case. Currently the weather is changing in my state and the cooler temps and barometric pressure drops are causing cold hands and feet, rapidly switching between too cold/ too hot feeling, chest pain. In my case it is proven that I suffer from uncontrolled vasoconstriction vs vasodilation. When triggers set off the SNS dysfunction the body releases too much adrenaline which leas to constricted blood vessels, runny nose, cold hands and feet, tremors and yawning, chest pain from constricted coronary vessels ( I have Prinzmetal angina and Raynauds disease ) . I try to stay warm and adjust the temp in my house to a steady setting, but not much can be done about barometric pressure but rest. 

I also experience GI issues during flares, in my case mostly GERD but also frequent movements and bloating - this is directly related to the ANS imbalance ( as per both GI and autonomic specialists ). In addition to medication I control these symptoms with diet and avoiding of large meals. 

I thankfully no longer suffer from insomnia, since meds and lifestyle adjustments have shown to be effective in my case but I used to have similar adrenaline rushes at night. 

7 hours ago, Ranga said:

Currently, my daily routine of yoga, hikes and breathing keep me going, and I do enjoy the symptom free evenings.  I am really looking for non-drug options to help reduce the night flares. 

Unfortunately I cannot function without meds and - most importantly - twice weekly infusions. Although IV fluids for POTS are generally frowned upon as a "dramatic" treatment for POTS most of my improvement is directly related to these infusions. Prior to having a port and regular infusions I would get them as needed during flares and was in hospital every 6 to 8 weeks. Since getting them regularly my symptoms and quality of life have drastically improved. In my case they helped for ALL of my symptoms, even when given as needed rather than weekly. 

I hope you can find a way to control your symptoms! 

[Ranga]

4 hours ago, Pistol said:

The difficulties adjusting to weather and barometric pressure changes also are present in my case. Currently the weather is changing in my state and the cooler temps and barometric pressure drops are causing cold hands and feet, rapidly switching between too cold/ too hot feeling, chest pain. In my case it is proven that I suffer from uncontrolled vasoconstriction vs vasodilation. When triggers set off the SNS dysfunction the body releases too much adrenaline which leas to constricted blood vessels, runny nose, cold hands and feet, tremors and yawning, chest pain from constricted coronary vessels ( I have Prinzmetal angina and Raynauds disease ) . I try to stay warm and adjust the temp in my house to a steady setting, but not much can be done about barometric pressure but rest. 

 

So as I understand, even with medications, you experience these issues with weather changes?

Are your GI issues also connected to weather changes?

This is where I have landed now. It takes the body a day or two to adjust, and in my case, it causes changes in sinus pressure, abdominal pressure and legs.  

I must say that while I still experience these symptoms, the body appears to adjust/recover faster, and both heat and cold tolerance have improved. 

I went through quite a bit of experimentation with diet, and I found very little correlation between food and GI  symptoms as long as I stay away from alcohol, gluten and dairy. Gluten is probably the biggest trigger.

 

 

[Zaina]

Does anyone have a similar experience where the gut appears to have such an impact on autonomic function, especially through the movement of air through the body? Especially the night time flares?  Could this be related to Nitric Oxide based on the links above? 
 

Hi! I don’t know the answer to your question, but these are my exact symptoms. My episodes are tied to my gut. If I eat something spicy or too acidic it can trigger discomfort in my chest which will progress to full blown panic/adrenaline dump unless I burp to clear it. It feels terrifying even after 2.5 years and sometimes I need to grab an ice pack to keep calm and slow it down. If it hits me in my sleep, I wake up thinking I’m dying. I have to get an ice pack, burp, and  maybe I will have an urge to pee or have a bowel movement. If it’s a long one, I can get some chest pain, arm pain, and tremors/shivers. The nighttime episodes are the worst. I was doing relatively well but I’m stressed right now due to an injury and unrelated surgery coming up 11/23. I had one of my worst episodes a few nights ago. My legs felt like they were going to collapse and as I was running to get the ice pack, my eyes were closing and I felt like I couldn’t control them. 
 

I reversed all symptoms for about 9 months with super clean eating, anti inflammatory food and herbs, and more rest than usual. Then I got sloppy with my diet and healthy habits and it came back. I’ve been having symptoms for a year since it came back.

i hope you find answers and relief soon! 

[Ranga]

On 11/19/2022 at 5:48 PM, Zaina said:

reversed all symptoms for about 9 months with super clean eating, anti inflammatory food and herbs, and more rest than usual. Then I got sloppy with my diet and healthy habits and it came back. I’ve been having symptoms for a year since it came back.

I have done all of that. However, in my case it appears to be a sudden block or activation of the sympathetic or parasympathetic nervous system that seems to cause the cascade of symptoms. The trigger mostly is weather/temperature/pressure related.