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  1. Interesting.. I am on an antidepressant withdrawal forum and for most of us this is true, and it's apparently due to high cortisol in the morning, not low...
  2. Same here.. I can't drink water due to gastroparesis like symptoms until the evening.
  3. Even on the worst days, I feel better most evenings after 6pm. Anyone know the reason why? Could it be related to diurnal cortisol cycle?
  4. @Sushi @Sea otter I am on a reddit dysautonomia group that also a thread about many people with a similar pattern.. the reason suggested by the doctor in the link above makes sense. It is related to blood flow. I think in our case, it maybe due to a malfunctioning nervous system rather than actual structural issues causing the compression.
  5. I was on the website of a German doctor called Thomas scholbach and for the first time was able to find information that correlated my physical structure to symptoms, as well as get an answer for why I feel so much better when I move my body and breathe in certain ways.. I have left varicocele, hemarroids, head forward, away back posture, abdominal visceral sensitivity and tightness, leg paresthesia, sinus pressure, poor thermoregulation, and most of the time, I am symptomatic on my left side. Anyone else ? All my tests so far haven't indicated any issues, so either it's not the right tests or something else.. Here are the articles that correlated with my symptoms - https://scholbach.de/wp-content/uploads/2018/03/20180324-vascular-compression-syndromes-own-website.pdf https://scholbach.de/gefaesskompressionsphaenomene-darstellung-fuer-patientinnen-und-patienten/checkliste-gefaesskompressionssyndrome#gsc.tab=0 https://scholbach.de/pain-on-the-left-side-of-the-body#gsc.tab=0 https://scholbach.de/behandlung-von-kompressionssyndromen#gsc.tab=0
  6. I have given up on conventional doctors.. as the article says, acupuncture, PT and yoga have been my support for the last 4 years.
  7. Yes, first thing in the morning. But I can also have orthostatic intolerance during the day or evening. What was nice to read and confirmed my observations is that I have a generalized autonomic dysfunction that isn't severe/consistent enough to fall into a label or drug intervention, but it does affect functioning, and I am doing all the non drug interventions to keep it going. What I also know is that my left side is most affected in a flare and as long as I can keep it moving, I can minimize the duration of the flare.
  8. This is a very good article - https://franklincardiovascular.com/do-i-have-pots/#:~:text=Many physicians do what is,increase over 30 beats per What was really validating was this - Patients with POTS have various other autonomic dysfunction symptoms, such as irritable bowel, abnormalities with sweating, temperature regulation and bowel and bladder function abnormalities.. Therefore, it is not an all or none phenomenon in autonomic dysfunction to diagnose or not diagnose POTS based on heart rate responses. Many of the other symptoms of POTS, which are visceral pain, motility disorders of the GI tract and bladder, chronic pain, headaches, dizziness and fibromyalgia-type symptoms actually reflect abnormal central processing of inflammation relayed by the nucleus and solitary tract (NTS) and the parabrachial nucleus (PBN).
  9. Yes.. I get hypervigilant, more emotional and can get into a fight flight mode very quickly in a flare. Blurry vision is usually indoors when I am walking around after food, but it has improved. Itchiness can happen when there is a drastic change into warm weather, along with leg parasthesia. I think all of this is related to blood circulation. Not that there are issues with blood vessels , but the communication between the nervous system and vascular system seems to be poor.
  10. I can get that discomfort too, in fact I get it when lying down. 😄. So the moment I want to rest or sleep I am back up to the restroom. In my case, it does seem to be related to pressure changes (both external and internal) and I suspect that is true for most potsies. I just have to ride it out when it flares . Avoid drastic barometric pressure changes, and maybe humid and hot places too
  11. For the last four years I have been dealing with different symptom patterns that cause sleep issues, and sometimes a sleepless night, and I haven't been able to figure out if it's an adrenaline rush or histamine dump, or just poor thermoregulation. Last night I had a flare after almost 3 months. I usually have no warning of a flare until I get to sleep. But the pattern is always kicked off by some variation of gut symptoms - heartburn, reflux, excess/stuck gas, multiple BMs, or an overactive gut with a lot of gut noises. Sometimes this can be accompanied by sinus issue, thermoregulation issues or leg paresthesia/pain I have consistently seen a correlation between the gut symptoms and thermoregulation - if I am bloated and burping or reflux, I am in a warming cycle, and if I am having gas and BMs then I am in a cooling cycle. Of course in a flare, this could go on all night. Last night, it started off feeling light headed and disoriented, which got better after massaging my shoulders/neck (normal BP 110/80). Then I started feeling both sweaty and cold with shivering, with a lot of good gut noises.. which then progressed to multiple peeing episodes, BMs, and needing to drink a lot of water.. and some calf cramps. It may be just dehydration, as sometimes due to my slow gut, I am unable to drink enough until the evening, and it just stays in the stomach, until I lie down to sleep. The following day, I am more sensitive to both heat and cold and have difficulty with thermoregulation with more leg parasthesia, and have visceral sensitivity. I went through most of winter without a flare, until the last two days where we have had the temperatures hit 68, and yesterday I sat under direct sunlight for about 30 minutes. I was perfectly fine with that and also being in AC through the day, but when I lay down at night, I had itchy skin all over almost like the body wanted to sweat but couldn't. I know that I also have poor/delayed thermoregulation - eg. If I am exposed to heat during the day, I may sweat at night or the following morning when it's cold. Also, I need more exercise and humidity in winter or more heat in summer to sweat, but my body takes a while to adapt to the change of season, and it does worse when the daily lows and highs keep fluctuating by more than 10 deg. Does anyone have a similar pattern? Have you been able to identify a trigger? And has anything helped to reduce the symptoms?
  12. On days when I have a flare, I notice that my resting HR while sleeping dips sharply, and my HRV goes up, which typically signifies a healthy heart. But in my case, it triggers a flare. Higher HR seems to help me sleep better. See the attached graphs on a good and bad night. Maybe it has something to do with thermoregulation? In my case, my gut starts acting up like crazy with either burping/reflux or excessive gas with multiple BMs and peeing, sometimes accompanied by chills and heat surges, cold extremities. My theory based on observing this for the last 4 years, is that a rapid drop in resting HR and a drop in outdoor temperature seems to trigger sympathetic overactivity, and then the body goes into chaos trying to get back to homeostasis.. initially the extremities go cold, then I start burping, which seems to increase HR and then warms up the extremities. When it's warmer weather, it goes the opposite way, with excessive gas, which cools down my core. In general, I have flares only when the HR dips, not when it stays high even though both are very much in the normal range - upper 50s to low 70s. Low 70s appears to be my normal resting HR. Anyone else have this pattern of heating and cooling manifest as burping/flatulence? It mostly occurs when I lie down to sleep or get up from sleep.
  13. When I am in a flare, I have pretty much a consistent symptom pattern - My gut starts slowing down, I do have regular BMs, but gas clearance becomes an issue, my pee starts to dribble. It's almost like someone just shut down my pelvic/abdominal area. When that happens, I have more bloat, my upper body starts warming up, I have more burping, I have sinus pressure, and leg paresthesia... when the gut finally settles down and relaxes, my feet feel really warm with paresthesia, gas starts releasing downwards with good urine flow and I feel cold in the rest of my body. This makes it hard to figure out what part to cover up. And if it's really bad, I go into fight/flight mode, with obsessive thoughts about returning symptoms, until symptoms subside. The flare used to last days, but these days, the worst has been half a day, and breathing is the only thing that helps me deal with it. A saving grace is that I know the pattern, but I am still clueless what triggers it.. and it always starts from the gut. As long as the gut is moving well, I am good.
  14. I will check with my chiropractor. Thanks.
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