Ranga

This was my first ever drug of any kind that I took for more than a week. I was advised strongly by doctors in the family to take it for "quality of life". While it did help me sleep, it did nothing to address the underlying cause. I was also not advised on tapering, and was told that it was on to stop cold turkey because I was on a low dose. I only discovered how many people are affected similarly with autonomic dysfunction by stopping too soon, after I started researching my symptoms, especially after losing close to 50lbs in a year. I didn't have much to lose, apart from what I gained with the drug. It has taken me almost two years to regain 20lbs, which is still 5-10lbs below my ideal weight. Every time I think that mine was a preexisting condition, I hear one more drug damaged story that is so similar.

I took it for 18 months and I stopped in 2019. All my issues started after that. I was advised to take it for my GI issues that were affecting sleep. No other issues.

BTW, this is what I suspect is happening - https://rxisk.org/complex-withdrawal-model/#:~:text=Drugs and peripheral neuropathies,-This section focuses&text=The fact that SSRIs do,that withdrawal is time-limited.

I am not straining at all.. it happens when the pressure builds up in the lower left abdomen. This is probably the closest I could get to an explanation - https://map.amegroups.com/article/view/4548/5578 "Peripheral nerve dysfunction is a common issue for endocrinologists who often find themselves managing nerve dysfunction due to poorly controlled diabetes. In these patients, suboptimally controlled diabetes leads to peripheral nerve root irritation causing, amongst other symptoms, burning of feet and cramps. Interestingly, these patients also exhibit signs and symptoms of IBS. It is thought these symptoms are due to peripheral nerve dysfunction caused by pituitary and adrenal fatigue. In patients with pituitary and adrenal fatigue, circadian inputs into intestinal mobility are disrupted causing the symptoms of IBS (bloating, cramping, flatulence, diarrhea/constipation)." However, it doesn't explain the thermoregulation issues, the sinus vasodilation/vasoconstriction and the burping/gas as a way to return to homeostasis.

Yes.. My A1C has been good, and I also check my blood sugar from time to time, and haven't noticed any abnormality. What is interesting is the connection between the gut and the legs in addition to the heat/cold exposure. I don't get them at other times. For example, I get it when I need to expel gas or have a BM and then it goes away.

I have been having temperature regulation issues, mainly when exposed to drastic changes in temperature. Today, I sat outside sunning my feet and ankles for 30 min, and even though it hurt initially, it felt comfortable enough until the rest of my legs started heating up. Later in the evening, I was at a restaurant with air-conditioning on, and I had quite a bit of paresthesia for about 20 min, before it subsided. I came home, and noticed sweating between the toes, something I don't see unless I have walked/exercised for a long time. And then when the AC came on and my feet were exposed, I barely felt the AC either on my feet or rest of my body, which on other days would be much more sensitive. A few days back, when I had high BP and feeling cold, I soaked my feet in warm water, and within 5 minutes, I was burping a lot, following which, my temp regulation was normal and I could get to sleep. There appears to be some sort of delayed response to heat and cold at the legs that seems to regulate what happens higher up. I am wondering what's happening here. Is this some sort of delayed C nerve fibre response?

I went through multiple experiments and figured there was no food trigger. I do avoid gluten and dairy, and alcohol. I found caffiene helps me regulate my temperature better and I feel less symptomatic overall. And yes, my vitals are for the most part not something to be concerned about, although my resting HR during sleep is a whole another beast.. As I said, I rarely have issues when I am up and about - mostly at rest/sleep. The HR dip at sleep onset was when I was feeling cold and high BP. It can also flip the other way i.e. high at sleep onset and low when waking up. The other graph is typically my normal. I still wakeup to a sharp spike (even when I am am just lying down) and it's usually when there is abdominal pressure to pee/gas.

BTW I just checked my BP before and after cold exposure, before after exercise and cool down. -115/84/79 after wakeup indoors, - 133/89/72 cold exposure outdoors . -119/83/102 Exercise -111/77/85 post exercise cool down It is weird that HR seems to drop with increasing BP. Have any of you noticed this ? Also, I rarely have a shiver response to cold, and sweating when it's cold is uneven. Wonder what role that is playing.

My issue is that there is no consistency in symptoms, and it doesn't matter whether it's summer or winter. It's all about the relative change in temperature or pressure. I do generally well in warmth, including indoor ambient air, and I can handle extreme heat comfortably, but not a sudden/drastic change. It is a lot harder for me to warm up, and it needs to be a smoother / gradual change. Where I live in the bay area, we have a wide daily range in temperature and can also have pressure drops in the afternoons when it heats up. Some nights, I will have all normal vitals as I lie down to sleep, but I will wake up with a cold or heat surge, which most often means increase in BP, and then it typically takes hours of burping, gas or BMs to stabilize. I rarely have low BP, and it doesn't affect me as much. The symptoms are pretty consistent in the body - - sinus pressure ( blocked sinuses, stuffy nose) - gut/abdominal pressure (burping, reflux, gut noises, gas, BMs) - leg pressure (paresthesia, stiffness, heat/cold) And it happens when I am experiencing both heat (sun) and cold (wind), and when then there is a drastic shift in temperature/pressure between environments, and most likely, when there is a postural change (lying down) and my brain is unable to regulate temperature (eg. in REM sleep). In fact, two days ago, we had the rains at the end of a cold front, and I was feeling perfect when I was outdoors (didn't even need a jacket), but as soon the sun came out and I was in the car, my sinus, gut and legs started acting up). It takes 15-20 min to settle down. At night, I was symptom free, and it was cold, and I covered up and as I was feeling asleep, I had a heat surge with reflux burps - that means high BP, warmer upper body and less blood to my feet. This time, I conducted an experiment since I knew a warm shower regulates my body.. I soaked my feet in warm water for 5 minutes, and I released a whole lot of burps that settled my gut pressure and warmed my feet, and I could fall asleep immediately with one less covering. In fact, anything that changes pressure in the body, like BMs, changes temperature of the body. If I feel warm, after a BM, I feel cold, and vice versa. Burping and gas are other ways that the body regulates temperature. This is the reason why I shy away from medicating, as my body is able to settle down with simple interventions most of the time, but I can't do much to regulate the changes in environment.

I suspect that I may have something going on similar. Varicocele, hemarroids, diverticulosis,etc .

I also have symptoms predominantly on the left - starting from my feet and toes, calf, hip, sigmoid colon, neck and sinus. My guess is there could be some nerve or circulation issue on that side.

You are so right.. Fortunately, I haven't had too many low BP episodes. My issue appears to be mainly when my BP spikes up in trying to regulate temperature and pressure. It almost always happens when I am falling asleep or waking up and triggers fight/flight, which as you pointed out, has a circadian rhythm component. I also have trouble with international travel. The more variation between heat/cold/pressure on the day, the more likely that I will have an issue. Higher BP translates to the body struggling to get to homeostasis - regulating temperature and pressure in the head, abdomen and legs. For me, it causes reflux/burping and heating up, leg paresthesia, stuffy/blocked sinuses, followed by chills, gas, and BMs. It most often hits during the early afternoon or when falling asleep (basically at rest). As long as I keep moving, things are manageable. We had a week long heat wave in 110s, followed by a cold front ending in rains yesterday. In fact, yesterday I was feeling great outdoors even with a cold front and then it hit me when I lay down to sleep. I could sense that my feet weren't warm enough, so I quickly put them inwarm water, and all my burps released, I warmed up and was able to fall asleep. I suspect there are temperature sensors in the abdomen as well that aren't firing well - it appears that the more you cover up, the harder it is for the body to regulate itself. Also, there may also be a CNS (hypothalamus) component to this, as I have issues when falling asleep or in REM sleep, which is when body temperature regulation is poor. The thing is I can handle the same or worse temperature when I am outdoors without issues, so it is quite frustrating not to be able to deal with it when resting indoors, and it appears that medication doesn't help too much other than trying to dampen your nerves enough to sleep.

So if we assume to that the condition is due to a faulty functioning of the nervous system in regulating blood pressure/vasoconstriction/vasodilation, isn't it challenging to find a treatment that precisely knows when to vasodilate when to vasoconstrict? In my personal experience, I find that drastic weather changes makes it very hard to manage this condition For example, I know that cold air/weather constricts my blood vessels and reduces blood flow to the legs and increases my BP However, when the ambient air is predominantly warm, symptoms are more manageable. Bay area weather has cold mornings and evenings with a 20-40 deg variation, and climate change has introduced heat waves followed by cold fronts to the mix. This means that indoors and outdoor environments vary greatly, although I find outdoors a lot more comfortable (unless it's a cold windy summer day). Add to that, our bodies have a circadian rhythm of cooling and heating. My circulation is at its best in the evenings. How does everyone manage without putting ourselves in a bubble ?

I have that as well.. especially when it's cold. Warming it up with exercise or heat can help, but takes time. Caffiene seems to work instantly for me.

Any This morning I had a flare with hot and cold patches all over my body, cold feet, and leg paresthesia.. cold AC was making it worse.. and even the sun didn't help much. Came home and had a cup of coffee, and miraculously all my symptoms subsided and I could feel my blood flow return to my legs. So as I understand, blood pooling could be due to vasodilation and not enough vasoconstriction. I don't really notice any obvious signs of blood pooling and I rarely have had any issues with blood flow to the extremities when it's warm, not have I had hypotension. My only trigger has been cold air/cold weather, which spikes up my BP and takes a while to stabilize. So what in caffiene is helping ? Also, with regard to nicotine, soon after I stopped nicotine in 2017 is when my nightly GI flares started, and I was put on mirtazapine to help with sleep. I have seen many people say that nicotine helps them with pots. I did experiment with nicotine for a week, but it was combined with alcohol and change of weather, so not the best test, but I didn't notice any improvement. I do have a cigarette once a week, but I don't have the same effect as I do with caffiene. Any thoughts?

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.

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) - Immediate reaction is a fight/flight response combined with gut instability (feeling stuck/visceral pain etc.), which 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. 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. 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. 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. 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.

I haven't done my QSART, but my ankle jerk reflex is non-existent, and I have issues mainly on my left side - from the toes, feet, abdomen, pelvis, neck and sinus. Symptoms include cramping, spasms, stiffness, paresthesia in the legs, slow gut motility, stuck gas causing excess burping, or excess gas, visceral sensitivity, bloat, and then the left sinus stuffiness, pressure, head pressure, left carotid pulsing etc.. In my experience when my left gut is moving well, I rarely have symptoms. Have no idea what specifically is malfunctioning but I suspect baroreceptors aren't functioning well. Weather changes seem to aggravate them, and lying down is worse than moving around. I was diagnosed with vagus nerve disorder, and I have had to postpone my QSART and TILT testing twice due to COVID.