Random-Symptom Man

Hi @MissMermaid. Welcome. You are definitely not alone in dealing with GI issues. I'm glad you're going to see a GI specialist. Many of us on this forum have autonomic dysfunction of the upper and/or lower GI. While some people here have issues with certain types of food, others like me have GI issues no matter what type of foods we eat. After extensive testing, and scoping, and prodding and poking they couldn't find anything wrong with my GI other than minimal evidence of acid reflux. I don't have any food allergies that could be found. I kept a food journal for over a year, writing down everything I ate. I tried every kind of diet. Nothing helps me except eating smaller portions, limiting sugars a bit, hydrating like crazy and Zantac. Unfortunately, Zantac was just pulled from the shelves in the US. If your GI specialist rules everything else out, then dysautonomia may be the culprit.

@DizzyPopcorn - I have tried CBD in both tablet and oil form. Note: Before I continue, CBD and THC are illegal in many places. I checked that CBD is legal where I am at the city, county, state and federal levels. There are only 2 manufacturers in the US that make 100% pure CBD (and water). The rest have at least small amounts of THC. THC is currently illegal at the Federal level in the US. Also, when I researched CBD for medical use, it appears that it isn't well regulated, and is often mixed with a variety of things, which may not be good for you. When one of my doctors thought I had MCAS, she said that some patients get relief from CBD tablets. She mentioned a pretty pure brand here in Colorado, that her patients swore by. She was very careful to never suggest I take it, but skirted the line by saying how other patients had gotten some relief from CBD. It was later determined that I don't have MCAS, but I had already tried it. I took dissolvable micro-dose tablets. Those tablets were made by a reputable manufacturer, and were said to be dosed very precisely. I was told that drops were harder to get an exact dose for. Some drops are twice the size as the next. The effect of the CBD was temporary for me. I felt numb and warm for a few hours. It was great for when I ached. It really took the edge off. Sometimes, I also get pain where it feels like my leg or arm is on fire. I think it is nerve pain. I have a CBD and vegetable oil based cream that helps with this. It reduces the pain. These flareups last a few hours, and the numbness is a huge relief. I sometimes have to re-apply because it wears off after an hour to two hours. If I don't wear a glove, my hand will get a little numb too. Both of my hands get achy/shaky/ridged/weak/numb - especially my dominant hand. Sometimes they cramp up too. I've tried the CBD cream on my hands for temporary relief. They feel numb/warm for about an an hour and a half. The achy feeling goes away. It really helps the rigidness of my dominant hand. But then the symptoms return and it still feels numb for a while. So then my hand is practically useless. I pretty much only use the cream if I need to use my hands a lot or the pain/cramping is really bad.

@Anne77 Welcome, and sorry to hear you are having symptoms. Could your nocturnal tachycardia be a side effect of medicine? I struggle with brachy or tachy on different medicines.

That is great @bombsh3ll. And a helpful lesson to the rest of us. Persistence!

@MTRJ75 my doc tells me to always titrate up to a clinical dose on any med. Same when I come off a drug. My nervous system can't handle rapid chemisrty shifts. I have no experience with buboprion. Is there a way to step down? Is it safe or effective at a half dose?

@DizzyPopcorn From https://courses.lumenlearning.com/suny-ap1/chapter/central-control/ ”Bright light hitting the retina leads to the parasympathetic response, through the oculomotor nerve, followed by the postganglionic fiber from the ciliary ganglion, which stimulates the circular fibers of the iris to contract and constrict the pupil. When light hits the retina in one eye, both pupils contract.”

@DizzyPopcorn I used to be a professor of geophysics, cyber infrastructure and data analysis. After that I created tech startups. People brought me in for tricky algorithms. Now I struggle to understand what I used to do. In rare moments I get glimpses. I can remember the pieces, but struggle to understand how they fit together. Chronic brain fog sucks!

I totally agree that living by exact numbers is a bad trap. Yet, I am a data person - or at least I was before cronic brain fog set in. I have found some rough numbers that help me keep from getting destroyed by dysautonomia. It's usually not a specific number, but a change in numbers that I look for. Because I often feel like ****, it can be difficult to tell when my body will react even worse and when it wont based just on feeling. I am working on this, but it's slow going. I spent most of my life ignoring things like pain, fainting and gut problems. No surprise that 1) it caught up to me, and 2) I am rubbish at recognizing early warning signs on how my body feels. I know that if my HR is variable, it's best not to try to sit up. If my HR doesn't drop most of the way to my supine resting HR after a workout, I shouldn't stand up. If I don't drink at least 20 oz of fluid to get up in the morning, I'm in trouble that day. In this case, I wasn't as interested in the exact numbers. I was interested that either closing my eyes or sitting in the dark could be used to help bring my heart rate down. Every bit helps when things are bad, or when I can't lie down. Deep beathing can also help me (5-12 bpm). I use that often to feel better. Ice on my wrists sometimes helps (0-20 bpm on a hot day). Now I'm going to add closing my eyes to my coping routine (rather than distracting myself with this light-generating screen in my hands). I'll see if it actually helps...

This morning I made an odd observation about myself; my heart rate increases about 7 beats per minute when my eyes are open and it is light. I tried to search to see if it is normal or not. I didn’t find anything. I’ve noticed that my HR increases during the day, but I’ve always assumed that was just because I sat up more. After I do horizontal yoga, I have to rest before sitting up or standing or else I’ll start to faint. So, this morning, I lay there with my eyes closed. I checked my HR and it was lower (77 down from 113 BPM). I figured, I would wait another 30 seconds and then get up. I checked my HR again, and it was 8 BPM higher. I figured my HR was still variable from coming down from yoga, so I decided to wait longer. I closed my eyes and waited. When I checked again, my HR was lower again. I figured I’d check again in 30 seconds, and it was 7 BPM higher again. Seeing a possible trend, I ran an experiment. Experiment 1: After 30 seconds eyes closed: HR 74 After 30 seconds eyes open: HR 83 After 30 seconds eyes closed: HR 72 After 30 seconds eyes open: HR 80 After 30 seconds eyes closed: HR 75 After 30 seconds eyes open: HR 81 After 30 seconds eyes closed: HR 74 After 30 seconds eyes open: HR 80 I rested in the same position, and tried to count down from a large number by 7s (it’s a trick I learned to focus on the same thing each time to distract me from anything else. I can’t do this and anything else at the same time). Experiment 2: I re-ran the same test, but sitting up, with the same type of results. Experiment 3: I re-ran the experiment in a dark room, and saw no difference between eyes closed and eyes open. Experiment 4: My wife did the same experiment, and saw no real difference. On average, there could be 1 BPM difference the error is about 2 BPM Does anyone else see any difference between light and dark.

I’m sorry your having to wait. I feel the same way. I even have doctor friends who pulled strings, and it felt/feels like ages. Every month is an eternity.

That's horrible. What an ***. I'm sorry that you had to put up with that. I wish I knew a way to communicate with people who just don't get it. Most of the time, I just give up. The only thing that seems to work is to show them what I look like when I crash. But they need to be there for It, and few people ever are. Today I was at the polm lab and the receptionist watched me go from functional to barely coherent in just a few minutes. She nearly called the ER. I hadn't even noticed that I'd gotten bad. When I realized I wasnt doing well, I just laid down on that linoleum floor. I quickly started to feel better. The staff and technicians were super nice after that. I wish I had a video of that. Nobody in their right mind would have lain down on that floor.

Really cool! Nice find!

Thanks @Wufflebear.

I’m dragging out this older post because Tonight I just had this feeling of droopy numbness in my face. It’s still there, but more mild after a few hours. I’ve never had any nerve issues in my face before (plenty in my arms and legs). It was only on my left side, around my cheek. That part of my face drooped. I actually felt it drop down. I asked my wife if there was anything different about my face. She Said it looked like my left cheek was drooping a little. It still responded when I tried to smile. It felt a little numb and without looking in the mirror I wasn’t sure if it was responding right. After reading the above comments I realize that it felt like light lidocaine at the dentist office. random symptom man strikes again! @Wufflebear @Faye and others. Did this symptom continue or go away?

@MTRJ75 my gastric was the one who actually clued me onto Dysautonomia in the first place. When you have unexplained gastro problems, and they’ve tried everything else, one of the things that is left is Dysautonomia. Sometimes when my hr goes up I have heartburn, or gastric emptying. It’s all haywire nervous system interactions. I Can see a bright light and have to dash (as best I can) to the bathroom. I can stand up, and it will feel like my bottom falls out. I Can have a stressful conversation trigger my gut. My heartburn is correlated with my hr. Those of us with one type of Dysautonomia sometimes have multiple forms. It’s not all just pots. It would be much easier if it were.

I'm sorry it hit you all at once. That sucks! My doctors also say that I'm unique, though I get many of the symptoms that you a d others here do. I hate that! I want to be boring and easy to figure out when it comes to medicine. I didn't do well on trazedone. I got more severe bradycardia than normal. I would wake up with my heart leaping out of my chest. I didnt have a watch that measured my hr back then, but I'm guessing less than 25bpm. It made my chest hurt for days. My hands and feet would feel funky for days. Combine naturally low O2 (91-93) with bradycardia, and it ain't good for the body. I would wake up with the sweats. I would be freaked out. I couldnt sleep until the next night. It was horrible. The really bad bradycardia stopped when I stopped taking Trazodone. I get the gastric emptying too. It's horrible. Especially when you dont make it to the toilet in time. It's just humiliating. You may be unique in your exact symptoms, but you are not alone.

Are you on any meds? Certain meds can cause kidney damage.

I sleep with a headphone headband. It's awesome. Super comfy. White noise. Meditation. Instrumentals. It helps me sleep - especially when I travel to doctors. It can even be a sleeping mask when the room is bright.

I'm sorry to hear that things have gotten worse lately. I only get mild acid reflux compared to what you're describing. So, I can only imagine what you're going through. The Zantac works for me. It's an H2 blocker because mine is allergy related. Do you have congestion? Or Allergies? When I get an allergic reaction, my mucous production goes off the charts, which messes with my stomach acid. I take Zyrtec as an H1 blocker, which helps with mucous and Zantac as an H2 blocker, which helps with my stomach. Have you noticed any change in bowel movements? I know it's hard to tell when you can't eat much. But my bowel movements were one of the clues for my GI doc and allergists. I wish I had more insight for you. I hope you find something that works.

@KaciCrochets I hope moving the plant helps. Great observations. We are amazing creatures, aren't we? Smells are awful for my ANS. I get gastric emptying when I smell air fresheners, scented cleaners and candles. It only takes seconds from the first smell to when I need to rush (as best as I can) to a bathroom. My heart races like crazy. I sweat. Sometimes my vision starts to go black and I get really lightheaded like I'm going to feint. I've removed nearly everything scented from my house. I can't imagine living with those feelings continuously in your own home. I'm so sorry. I really hope you identified the cause.

Have any of you done a sleep study, with eeg? I don't know if what you experience is at all like what happens to me. Either way, yours seems much more frequent and frustrating. I'm sorry. I hope you can get some insight here ir elsewhere. My doctors and I are trying to schedule a 24 hour sleep/wake observation. We are concerned with central sleep apnea- another form of dysautonomia that I dont really understand. From my understanding, the docs think I just stop breathing during the night (and also during the day sometimes). I often wake up with the sweats, heart pounding. My pulse ox is often low than my usual low of 90-92. Other times I wake with my limbs asleep. When I look at my HR data on nights that I wake up like this, my HR often jumps up massively before. Many times I'm amped for hours when I wake up like this. Then its hopeless to try to go back to sleep. The doctors say they need the eeg to really see central sleep apnea. From my extremely crude understanding, lots of meds can cause central sleep apnea. Good luck.

I had a ton of tests (like everyone here). One of my docs thought I had MCAS. So I had more tests. She said I had a solid diagnosis based on symptoms and some positive tests. So she prescribed CROMOLYN SODIUM. I took it and it had no effect. Then I got a diagnosis for several types of dysautonomia, including POTS. None of the docs think I have MCAS. First, I didn't respond to the cromolyn. This is perhaps a better diagnosis tool than the various tests. Second, several of my symptoms are now explained by dysautonomia, which removes those those symptoms from MCAS as a cause camp. I just have a weak immune system, allergies and lots of dysautonomia. 2 lessons I've learned: 1 - Most doctor I've seen only look at medicine through a narrow lense of medicine. The MCAS doctor thought I had MCAS. The AI doctor thought it was all autoimmune. The sleep doctor diagnosed me with obstructive sleep apnea before the data came back. The GI doc thought that my gut caused all my problems, and that I just hadn't tried the right diet. I've tried them all. You get the point. 2 - Many docs don't really understand the other parts of medicine. If you get a positive diagnosis for one thing, they don't often take that into account if it isnt their specialty.

Yes, and not yet. Psych says that my symptoms are consistent with ADHD. My version of brain fog set in at least 6 months before my other symptoms got worse. I quit my job in December last year because of brain fog, depression, fatigue etc... I say "my version" of brain fog because I've always had a slow processing speed. My brain used to work great, but slow. Now it works okay, but even slower, and only for short bursts. Then craps out on me. I can't learn new things well. I struggle to recall names and words. I am constantly frustrated with thoughts that either don't come, get lost in the mix, or come too late to be useful. My wife can diagnose how how I'm doing by how bad my communication gets. I just started ramping up very slowly on nortriptyline. I am hopeful that it could heko, but cautiously so. My psych told me that it may make things worse at first - particularly the POTS. I'm crossing my fingers.

You are not alone. Stress is not my friend. Of any kind. Stress can take me out for days. If I try to power through the stress, the aftereffects get worse and last longer. Most people only see me in the moment. They don't see the repercussions. The way my psychiatrist described this to me went something like this: Him: Do you know anything about the autonomic nervous symptom. Me: Uh, I think so. Him: Then you know that the sympathetic nervous system is the fight or flight response, right? He's talking slowly, so I can understand. Me: Nodding my head, trying to understand through a particularly bad brain fog. Him: So stress triggers the sympathetic nervous system. Me: OK. Him: In you, the sympathetic and parasympathetic nervous system don't balance out into homeostasis. Me: confused face. Him: Homeostasis means balance. So stress effects others, but really messes with you because things don't go back to a balance. Things spin out of control. Me: I get this last sentence. I'm glad my wife records my visits to doctors. I wouldn't remember stuff like this otherwise. I filled in my best guess as to my mostly silent responses. I really don't remember the conversation. I do remember listening to it later. You are not alone.

@Pistol - I have nasacort in my arsenal, but it's less effective for me than the olopatadine spray. If I really need to get rid of something quick, I use Afrin - allergy. But I never use Afrin for more than a day because I get a bad rebound once I stop after a few days of using it. Also, regarding increased GERD - I take Zantac for acid reflux/GERD. The added benefit is that I sleep better when I take Zantac. I only hypothesize that the GERD interferes with my sleep. Of course, sleep is a large component for me regulating my BP/HR. So, allergies, which mess with my GERD, result in worse POTS (I think - I have correlation, but that doesn't mean causation). Plus, zantac is an H2 blocker, which shoukd help with my allergies. I notice that on daily zantac I also have fewer gastric emptying spells. Do you take anything for GERD?