Random-Symptom Man

@Jwarrior77 - thanks for the tips. I’ll look into those suggestions. to answer your question, the narcolepsy is in between. I do fall asleep easily at night. I also get these instances where I ”hit an energy wall” or “run out of energy” or “crash”. It doesn’t happen every day, but many. I used to think it might be sugar related, but ruled that out. Then I just thought it was a natural part of fatigue. When I got my POTS diagnosis, I thought it confirmed my mistaken belief it was fatigue. I have fatigue too, but apparently this is different. The best way I can describe it is like a 100 pound blanket of tiredness is thrown over my body. It is hard to do anything but sleep. I can fight the urge to sleep, but it takes willpower, pinching myself, flexing muscles and stuff like that. It sets in over minutes, not seconds. its not like the movies. I don’t worry about driving because I can focus and pull over. After struggling for a bit to stay awake, I can do things that will wake me back up. The late afternoon is the most common time for it to set in. But it can happen at any time. I fall asleep in action movies. I fall asleep at dinner time. I try to maintain good sleep hygiene, but it’s difficult. As I said before, I thought it was just fatigue. Apparently, it is both fatigue and narcoleptic sleepiness.

@Miraclemaker11 - welcome, and I’m sorry your family is struggling with this. I don’t have experience with those medications or autism, so I can’t comment on those. Sorry. I can say I’ve had a harder time handling anger since my body started to revolt. For me, it often feels like I’m trapped in an Iron Maiden. I can’t do anything. If I feel well enough to try, my illness either causes a weird symptom, knocks me out, or just plain hurts. The most frustrating part is when my brain and body revolt at the same time. I’ve wanted to smash a doctor’s office recently. Fortunately, I refrained. Sometimes my crappy autonomic nervous system crossed signals and wants to jump towards fight. When this happens, it takes a lot of will to let even little things go. I can imagine that autism would make controlling this impulse much harder. I’ve assumed it was an adrenaline surge, but I really don’t know. I get either shaky/jittery or I “crash” after I get one of these impulses. Does this happen to your sun? It feels a lot like narrowly avoiding an accident. That’s why I assumed it was adrenaline.

So, I’ve just been getting used to a diagnosis. I now have 2 new diagnoses on top of Dysautonomia. 1) Narcolepsy (I can fall asleep quickly and get into REM sleep quickly) . 2) REM Sleep Without Atonia (I move my arms and legs during REM sleep and normal sleep when I shouldn’t). It looks like I’ve had some symptoms of Dysautonomia and Narcolepsy my whole life, but everything has jumped to a new level. It looks like I’ve had low-level neuropathy for decades, but it has increased in recent years. I have no idea if one symptom caused the others or if there is something else waiting to be found. I don’t know what to think about these new diagnoses. I don’t see my specialists for 2 more months. If anyone has experience with best practices for these co-morbidities, I would really appreciate any insight you can provide. thanks

@AllRelative - have you done a sleep study? Specifically a polysomnography and MSLT? The reason I bring this up is your comment of suddenly getting tired. I just found out that some drops in my HR are due to narcolepsy. To my surprise, I just found out that I am narcoleptic. Nobody that knows me would have ever suspected it. I always thought of narcolepsy as something where you just fall asleep suddenly. Apparently there are two different types of narcolepsy and gradations of severity. It is diagnosed by how fast you fall asleep, and how fast you get to REM sleep. Apparently, I have both fatigue and narcolepsy. #RandomSymtopmMan! HR, BP and O2 can drop and rise during sleep for most people. Apparently, it can drop early in me - when I get sleepy. My hr doesn’t drop as severely as what you show, but it’s significant.

@chronic-tea - I’m right there with you. I only had a 30bpm increase for my TTT. In the cool like a hospital, I do better. If I heat up at all, I land in blackout city. The pulmonologist didn’t want to diagnose me with POTS, but did because the data was there. Because I’m a male in my 40s, he thought I couldn’t have POTS. Dysautonomia is infuriatingly consistent about being erratic in the most frustrating ways. You are absolutely right; getting a diagnosis is a big thing. For me it is not just for dealing with the system, but also for “peace of mind” after being told “it’s all in your head.” We all hope it all comes together for you. And I agree that small-fiber neuropathy can be linked with dysautonomia. I have small-fiber neuropathy and dysautonomia (pots, dry mouth, dry eyes, sweat gland dysfunction, eye dilation issues, gut issues, and the list goes on) and fatigue. Tons of people on this forum, including me, suffer from nerve pain, fatigue and dysautonomia. good luck.

@AllRelative I used to be a professor, so pardon me if I’m pedantic. This is a common issue in all of science, engineering, and medicine. It is often hard to tell the difference between errors from faulty measurements and real data from a accurate outliers. Most automated systems disregard both. One way to tell the difference is to see if the result is repeatable. Can you get the same result again? This can be challenging - especially if it is a rare event. Another way to tell the difference is redundant measurements. If you have multiple devices measure the same outlier, then it is less likely instrumentation error. If only one records anomalous data, it’s likely a faulty measurement. Of course it can still be an effect of a non-related phenomenon if measured multiple times. I have no idea if this helps.

I have both an Apple Watch 4 and Samsung Galaxy 2. Sometimes I wear both (I’m a nerd who likes data). I’ve checked data against a pulse ox too. They all tend to give similar results. The big difference is that Samsung will record every second if you want it to, and is therefore better at figuring out if a particular reading is an outlier. The Apple Watch records every 10 minutes to save battery. The data look similar, but there is less variability on the Apple Watch, as it tries to exclude data unless you’re exercising or resting. My horizontal exercises don’t seem to fit Apples expectations, so it only records when I’m not moving at all. I have noticed all devices (pulse ox included) occasionally not adjusting properly when my HR is really fast. It will sometimes register every other beat. So, 150 bpm becomes 75 bmp. It only ever lasts for a few minutes. Note: the ecg on the Apple Watch 4 says “inconclusive” if my heart rate is over 100 bpm, and will say error if my hr is over 120 bpm. I don’t think it can handle fast heart rates.

@Jwarrior77 As mentioned above, it is easy for the central nerve and ulnar nerve to get compressed. Bruins/Arteries also play a role fore me. The ulnar nerve is more often a problem for me recently, but I have problems with both nerves on both sides. The ulnar nerve is responsible for pinky and ring finger. I get this more when my arms are bent at the elbow, because it gets compressed at the elbow. The central nerve is responsible for the rest of the fingers. My central nerve gets compressed at the wrist when my wrist is bent. My arm goes numb when my arteries/veins get compressed due to lack of oxygen to the extremities. It doesn’t take much pressure these days. I think it has something to due with a slower pulse (bradycardia), a weaker pulse (PP = SP - DP), lower amounts of oxygen (from pulse ox). I get varying combinations of two or all three (both nerves and artery compression). The same thing happens to my feet/legs. My docs thought this was to be expected because I have small fiber neuropathy, variable blood pressure (high and low), and lower oxygen.

@Sweet T & @persephone- I get kidney stones (imaged via CT) and have had multiple episodes of kidney pain where there was no stone imaged or passed. Both hurt the same. In both cases hydrating even more than my POTS-level hydration helps. The pain is very different from muscle pain in the back, which I get sometimes too. I've had 1-2 kidney-stone-like experiences per year for the last 12 years, and possible dysautonomia symptoms dating back 20+ years. My dysautonomia and kidney stones have gotten worse over the past few years (resulting in an actual diagnosis and finding this forum). I have three unsatisfactory hypotheses for my unexplained kidney pains: 1) My bladder dysfunction may cause a backup of fluid. "Hydronephrosis is the swelling of a kidney due to a build-up of urine." [REF] It is said to be similarly painful to kidney pain. While I constantly pump fluids through my body for POTS (and was before I knew about POTS) I think sometimes fluid backs up into the kidney, causing pain. I have bladder dysfunction, so this seems possible. The problem with this explanation is that drinking more fluid seems like it should make hydronephrosis more painful, not less painful. 2) I get nerve pain nearly everywhere else, so why not in my kidney? But usually my nerve pain feels more like a burning/electricity feeling, whereas my kidney pain is more of a dull achy pressure that builds up to a knife in the back sensation. Plus, I don't see how hydration would help with nerve pain. 3) At 42 years, I'm just falling apart. Of course, there could be no causation, just correlation. If anyone else has another hypothesis, I'd love to hear it.

In some cases, nerve damage contributes to muscle spasms. My muscle spasms are often associated with tingling/numb/shaky hands/feet. Other times it's that painful burning or electrical sensation I get from nerve pain. Nerve damage also contributes to various forms of dysautonomia. Localized weakness often also accompanies my muscle spasms. Stress is a big trigger for my muscle spasms, so it isn't just just a nerve damage issue. It's all interconnected.

Sometimes I get this. It happens more often when I have a sinus infection and when my body decides to bloat up. I can usually measure several pounds of water retention when I get this symptom. My wife says my face gets puffy. I think mine has to do with increased pressure in or around the eye due to bloating.

The doctor explained my symptoms like this: I have dysautonomia. POTS and sweat gland dysfunction are two diagnosable categories. They are symptoms, not diseases. Somehow I have small fiber nerve damage caused at some point. This results in overactive, always-firing nerves. The brain sometimes interprets these random nerve signals as pain. Sometimes it's localized. Other times systemic. Other times its dysfunction like shaky hands or blood pooling, or light sensitivity, or bladder dysfunction, or or or... I do not have MCAS, but I do better on H1 and H2 blockers. I didn't respond to chromalin. The H1 is for allergies. H2 is for GERD. Like you, my AI tests all came back negative (except a slightly elevated anti-smooth muscle antibody). So autoimmune is mostly negative. I sometimes struggle to member that POTS, MCAS, ME/CFS/PEM/SEID are all syndromes that are buckets for doctors. If they can't figure out what's wrong, they toss a patient into one of the buckets. People can have the same syndromes because of different underlying causes, and therefore many different symptoms with the same syndrome. Not everything fits into the bucket (like my allergies). Hopefully this helps...

Do you have a Blood Pressure Monitor? If so, what is the difference between your systolic and diastolic? Is your pulse slow? Or fast? Weak/faint sounds like a low pulse pressure maybe... My BP and HR go every which way right now because I'm ramping up on nortriptyline. When my systolic lowers and my diastolic raises (e.g. 106/87) I get weak arms and legs. It can feel like rolling over is hard work. I guess Pulse Pressure is what drives some of what we feel. @GinnyIckle clued me into this. PP = Sys - Dia. Do you have any accompanying symptoms? I often get numb hands/feet when my PP is low. My Brain fog increases. Sometimes I get random other symptoms too (e.g. headaches, light sensitivity, shaky, pale).

I just saw this post about someone’s CBD/THC experiences. https://www.kristinarisola.com/blog/pots-dysautonomia-and-medical-cannabis

@Pistol Short answer: I am not yet controlled, but trying to get there. Long answer: I've been seeing doctors at John's Hopkins. They got me to a diagnosis pretty quickly after others floundered, so I'm grateful for that. John's Hopkins has people that work on dysautonomia, but they aren't exactly dysautonomia specialists like at Vanderbuilt and Stanford. I started the application process for Vanderbuilt, but that takes a while. I actually saw a specialist here in Colorado shortly after my symptoms forced me to quit my job. Surprisingly she didn't think I had dysautonomia and misdiagnosed me with MCAS (her other focus). She was absolutely positive I had MCAS and not dysautonomia. Yet, multiple tests came back negative for MCAS. I went elsewhere for POTS and sweatgland tests. I knew someone at John's Hopkins, so I went there. I tested positive for POTS and sweat gland dysfunction. Given my other random dysfunctions (ed, gastric, light sensitivity, and more) this diagnosis makes much more sense. I'm reluctant to go back to that local specialist now. Until I get in with a better specialist, I'm going with John's Hopkins advice. I am ramping up on Nortryptoline, which is part the problem. Every time I bump up my dosage, I get a rash of symptoms. This last week it was high HR again. Another time it was light sensitivity and bladder dysfunction (FUN!). Every time, my hands spasm and shake. I've had all sorts of symptoms spike because of it. While the symptoms often seem random, the uptick in symptoms with an increased dosage seems consistent. After I stay at a particular level for a week or two, my symptoms settle down. Next week I'll go to 50mg, and stay there for a while. On a positive note, my brain is working a bit better (when I'm not exhausted). I searched DINET for 'Nortryptoline' and only a few people here have experience with it. Everyone said it was horrible to titrate up on. Most people don't seem to stick with it.

When I have a day with 7+ hours of high heart rate, it is exhausting. Just opening my eyes can be a struggle. I had 14 hr high-heart-rate day last week. I took a shower in the morning, and my HR went to 163 bpm. It didn't consistently come down below 100 bpm until after midnight. For reference, my resting HR is usually 63-79 bpm. I was so tired, but I couldn't sleep because my HR was high. It took a few days for me to feel rested again.

Oh, I forgot to mention, actual sugar in those quantities tends to give me heartburn. I keep a water bottle with salt and splenda in it next to me day and night. This way I have fewer fluctuations in salt intake. I find that quick variations in salt intake gives me headaches.

@Amyschi - I started taking Zantac once in a while when I'd feel heart burn. I later noticed that I slept better on nights after I took Zantac. I ran some experiments, and it turned out that I sleep better after I've taken Zantac. So now I take it every night. On nights where I've forgotten, I don't sleep as well. This is common for "Silent" GERD. From https://rehydrate.org/solutions/homemade.htm: ```Give the child a drink made with 6 level teaspoons of sugar and 1/2 level teaspoon of salt dissolved in 1 litre of clean water. Be very careful to mix the correct amounts. Too much sugar can make the diarrhoea worse. Too much salt can be extremely harmful to the child. Making the mixture a little too diluted (with more than 1 litre of clean water) is not harmful.``` I use one packet of Splenda rather than 6 level teaspoons of sugar. I am trying to manage my weight. I've used Aspartame a few times, but prefer Splenda for some reason. I've bumped the salt up to 1 teaspoon before. I like this better than the salt tablet because it goes in slower and it goes in along with H2O, so I don't need to worry about balancing my hydration as much.

@Amyschi - I treat my GERD with Zantac (though the US recently pulled it from shelves - I have some stalked up) and TUMS. I also avoid things that make it worse, like eating sugary or spicy foods, eating large portions, consuming alcohol and not sleeping enough. Also, keeping a tight lid on my allergies with H1 and H2 blockers, and nasal sprays helps a lot. I also stopped taking salt tablets because I noticed they caused GERD. I replaced salt tablets with a salty water drink recommended for hydration by the WHO and one of my doctors. I replace the real sugar with fake sugar. Nevertheless, I can get a spike in GERD if I let myself get stressed, if I stand up too quickly once, or if any number of other things happen. I know how to make it less bad. I don't know how to keep it from happening...

My psychiatrist releases info to my PCP regarding any medication changes. They have discussed meds between them. I like this, as my PCP is really good with drug interactions. My Cognitive Behavioral Therapist can not share anything unless it is life threatening.

I prefer advil. It tends to help me with swelling too. Plus, while Asperin lowers my blood pressure, advil/ibuprofen raises my blood pressure, which is what helps me. But I read that continual use of advil/ibuprofen is bad for the heart and kidneys, so I try to limit its use. Do you know what type of headache you get? Where do they hurt? Everywhere? Temples? Base of spine? Behind the nose? There are a ton of possible causes of headaches. Are they continual, or do they happen at certain times of the day?

+1 to the concept that it's all related. For me, dysautonomia seems like random set of interconnected symptoms, including my GI. Here are just a some of the ways they seem interconnected for me: 1) I can see a bright light and then have immediate gastric emptying. 2) My GERD at night often increases my sleeping heart rate and then makes my POTS way worse for the rest of the day. 4) High HR often leads to tinnitus, nerve pain and brain fog. 5) Eating a medium to large meal makes my POTS and presyncope way worse. 6) Stress makes my hands shake and spasm and often leads to gastric emptying.

I'm doing okay today, but the last few days kinda sucked. My light sensitivity hit a new high. I spent most of my time in the dark. I couldn't look at a screen without two pairs of glasses on - which then makes it hard to see. My hands hurt and shook. My brain fog was horrible. My ears rang like crazy. Oh yeah, and I still have pots. Oh, and my bladder ached. It was all really bad two days ago, and yesterday was a bit better. I'm nearly back to normal-ish now. What do you do when you can't do much? When you can't look at much? When you can't manipulate your hands? When your brain doesn't work? When that annoying ringing in your ear just won't stop? I listened to audibles, but got bored and annoyed. I listened to a few movies I'd already seen, but got bored and annoyed. I napped a bit. I tried a shape-based puzzle, but got frustrated with my hands. I've become so reliant on my computer and phone as portals to the outside world, that when I can't see, it drives me bonkers. I'm sure this will happen again, so I'd really like advice on what to do next time my light sensitivity strikes.

@Clueingforlooks - Good luck on your gastric emptying study. My study showed nothing. For some reason my body refused to do it's usual shenanigans. I didn't have any bowel issues for four days straight. It was the longest I've gone without issues in a year. Now that I think about it, I should sign up for a Gastric Emptying test every day if that's all it takes for my GI to behave.

That sucks! I've had to cancel in the middle of a doctors' visit. I spent about a half hour in the bathroom. When the autonomic nervous system says you gotta go... It is so frustrating! Can you put it on your credit card? If you have to cancel, get the credit card company to dispute it for you. It would probably be a hassle. You'd probably have to send the CC company your docs showing that you have a disability. Why is it always so hard?