Random-Symptom Man

@Pistol - I'm sorry that you're having a flair up. That sucks! Allergies suck too. Together, it's brutal. Before my dysautonomia dx, several doctors thought I had MCAS because I also have significant allergies. I was getting 6-10 sinus infections per year due to allergies - at least half in the fall. Unlike @POTSius, nasalchrom did nothing for me, and they eventually ruled out MCAS. For the last 4 months I've been using olopatadine nasal sprayHope's. I also take Zyrtec daily, which is an H1 antihistamine, and Zantac, which is an H2 blocker. I've been nearly symptom free for the last 4 months. It's awesome so far. I have high hopes, but I'm waiting for the other shoe to drop as Fall hits full swing... I'm about to get my local allergy tests done again. They have these new sublingual drops instead of shots. One drop under the tung every day for 1-2 years. The last time I did it, it helped me. It didnt make me all better, but my sinuses were a little better because of the sublingual drops. The spring symptoms are now way better for me. I ended up being allergic to a bunch of things I had never thought about. My insurance didnt cover the drops last time, but it was worth it to me. The other thing that helps me is having my ducts vacuumed and changing my home's air filters regularly. There is a ton of junk that settles in the duct work of my house. Again, it's not cheap to have someone vaccuum your ducts, but it gives me more upright days. As for allergies and pots, I swell up when I get allergies. I gain a couple pounds in a couple hours. I weigh myself twice a day because it helps me monitor my allergies. I think the bloating and mucous somehow interact with pots/dysautonomia. It correlates with gastric emptying, increased pre-syncope symptoms (BP & HR variability), nausea, fatigue, muscle pain and joint pain. While I'm retaining more water in my mucosal layers, I loose water due to gastric emtying, runny nose, and mucous in my digestive system. I wish you luck moving forward with your allergy symptoms.

I get depressed when I have a flareup. There's the obvious issue of primary symptoms: fatigued, achy, nauseous, cold-or-hot, and more. These symptoms are enough to give anyone depression. Add on the seconday symptoms of lack of excexersise, human interaction, boredom, and ADHD and its even worse. Who knows what other imbalances occur when our ANS goes out of whack? It's probably different for each of us. It's probably different from time to time. I often throw weird levels on different blood tests at different times (which confounds the doctors). So it's hard to tell if the depression and weird thoughts are a result of hormones, a depressing set of circumstances, or a combination. But there are people here with you. Thank you for sharing.

Misseb, Sorry to hear about your symptoms. Have you looked into hypoglycemia? It's one of the many things my wife looked into for me before we got to dysautonomia... Good luck with getting the referral.

This probably sounds silly, but ... Zantac helps me sleep. Back Story: I feel heart burn sometimes. There is no correlation with type of food, but any large quantity is definitely an issue. Just another random symptom! But fortunately, I take copious notes and keep tons of data. I found that on nights where I took Zantac, I slept better. Experimentation: As an experiment, I took Zantac for two weeks straight just before bedtime. I got an average of 92 minutes more sleep per night. I also didn't wake up as much during the night. After two weeks, I stopped taking it. I went back to my normal sleep patterns. I tried Prilosec with the same positive result. I tried Tums. No improvement. Result: Zantac & Prilosec are better than Ambien, Lunesta, or any other sleeping pill for me. Now, I take it nightly. Nothing else has worked as well. When I don't take it - like before medical tests - I don't sleep well. I am better rested now than I have been in years. Unfortunately, I still have fatigue and all the rest my issues. Funny enough, I still get heart burn on occasion. But at least I sleep better. Possible Explanation: Many people have GERD and don't know it. I had mild esophageal irritation when I was scoped. From a study I read that, "Severe autonomic dysfunction was detected in 44.4% of patients [with GERD] and in 7.9% of controls (P < 0.001)." (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4462740/). It's just a theory...

Cool stuff! Thanks for sharing.

@DizzyPopcorn go ahead and be angry if you are angry. I've done plenty of damage to myself by ignoring how I feel. If you bottle it up, it will come out anyways. It's just more likely to hurt yourself and others if you bottle it up. Not having a diagnosis and the proper care sucks. So hang in there. It sounds like a frustrating time. It's okay to be frustrated with the lack of speed medicine seems to take with dysautonomia. Waiting, waiting, waiting. Then bad appointments. Then more waiting. Fear bleeds into all of this. There is so much uncertainty. What if ______? How could it not? It sucks! I sometimes burst out in anger in response to my fears. It's even harder to deal with when I see fear in my family's eyes. My therapist keeps telling me that I can't get to the acceptance part if I don't process all of my emotions. Apparently, there is no short cut. It's not easy for me. I wouldn't expect it to be easy for anyone else, so I have to remind myself to give myself the same leniency I'd give others. I hope I get to a more zen place in time.

I get a burning sensation every now and then. It feels like my leg is on fire, or my hand. There is no redness. I think mine is nerve pain. Mine goes away after a few hours. I usually take advil, but I dont know if it helps. From my limited understanding, nerve damage is common for dysautonomia folks. I hope yours isn't nerve pain, and that it recedes either way. Good luck! I feel for you.

Great suggestions @bombsh3ll. Thx.

41 years.

@KiminOrlando - thanks for the heads up. I'll keep testing.

@KiminOrlando - Great question. It doesn't look autoimmune, but what do I know. My ANA has been negative 3 times. ASMA is the only autoimmune marker that came back positive. All others tests in the autoimmune realm came back negative with multiple rounds of blood tests. Thx.

@Pistol - Thanks for the response and encouragement. My next appointment is with a neurologist and then an autonomic specialist. It's several weeks off. To answer your questions: EMG is neg/norm - negative for peripheral neuropathy TTT is pos for POTS Sweat gland - positive for hypohidrosis B12 is norm D is norm Lyme is neg (though no CSF tests) Thyroid is fine No parasites (endoscopy up and down) I'm not sure what else to have them test at this point, or if further testing is suggested.

Diagnoses: (August, 2019) pots, anhidrosis, "just general dysautonomia", (2017) low testosterone, (2012) chronic sinusitus Symptoms: fatigue😴, brain-fog🧠, pre-syncope😵, bradycardia♥️, tachycardia♥️, exercise intolerance🏃‍♂️, nausea🤮, gastric emptying🚽, photophobia , tinnitus👂, muscle pain💪, joint pain😥, paresthesia✋👣, dry eyes👀, heat intolerance♨️, cold intolerance❄️, burning sensation on legs🔥, sinusitus👃, canker soars🤐, kidney stones😖, allergies🤧, morning insomnia🛏️. Rx: zantac, zyrtec, nasacort, olopatadine nasal spray, salt tablets, Things that help: more frequent smaller meals, resting, horizontal exercises.

Hi all. I'm new here. I searched for "hand cramps" and "hand spasms", but didn't find anything useful yet. So hopefully this isn't a repeat post by the newbie... Last night my hand spasmed/cramped again. To make a long question short, do any of you get hand cramps? If so, what do you do when they happen? And is it serious? More info: The first time my hand cramped was back in April. They've been happening more and more frequently over the past few months. I've had three hand spasms in the last seven days. Most of the spasms are on my dominant hand - but not all. Last night I tried to open a small bottle of vinegar, but couldn't - the first time in my adult life that I couldn't open a bottle. I felt weak and uncoordinated. An hour later I got a hand cramp/spasm. My pinky and ring fingers on my dominant hand locked tight in a not-quite closed fist. I massaged it and stretched it, and it got better. This morning my hand is still achy and it is hard to type. I'm mostly using my pointer and middle finger on that hand. Other times, my whole hand makes a claw. One time, I even went double jointed on two fingers - another first - I had to switch my fork over to my non-dominant hand to finish dinner. My wife is freaking out about it. She read that Michael J. Fox's first Parkinson's symptom was hand cramps/spasms. My PCP said it is probably happening because I am ramping up my salt to help with POTS (I'm only at 2 tablets per day plus salty snacks). In my web searches, I only saw low sodium associated with hand cramps/spasms, not high sodium. My potassium, calcium and magnesium are normal. I am not diabetic. My glucose varies a bit, but is in the normal range. I don't have abnornal variations in insulin. I have low testosterone (I about to restart supplements). I have a bunch of dysautonomia symptoms (see below). I've taken very few meds up until now, and I've been mostly med-free for the past 4 months while they've been testing me for everything under the sun. I only got my dysautonomia diagnosis about a month ago, so I'm new to this. My MRI (a month ago) was clear. I've been tested over and over for a bunch of autoimmune markers. I only have anti-smooth muscle antibody. I have allergies. My hands and feet often go numb or have pins and needles. Sometimes numbness happens to my whole hand/foot. Other times it's just my pinky and ring finger/toe. Some days my hand writing is worse - another possible Parkinson's symptom. My hands aren't as steady as they used to be, but that is common with a lot of people. With constant fatigue, it just seems normal to not be perfectly steady. It's always an adventure learning about new superpowers as Random Symptom Man! Look what my body can do... If you have thoughts, please chime in.

@Pistol - No secret. Just lucky. They're 9-year-old twins (boy girl). I think it's just a developmental phase they're in. My guess is that a year ago they wouldn't have been any help. In another year, they'll start showing pre-teen angst and start revolting. But I'll take the good mojo it while I can.

My numbers vary significantly from day to day. On the day of my TTT, I was feeling pretty good, so they only measured a 30 bpm increase in HR in 10 minutes. The doctor didn't want to give me a diagnosis of POTS, because it was at the cutoff. I wear a smart watch that measures HR continuously. I often wear a finger pulse ox to make sure the watch is calibrated correctly (and because my O2 trends low). Sometimes I see only 25 bpm increases upon standing. Other times I see a 50-60 bpm increase. Heat makes mine worse. An active day usually results in worse POTS the next day. Eating too much for dinner will also make mine worse the next day. A bad night sleep, makes me more potsy. I'm new to this diagnosis, so I probably don't know all the things that make it worse. Knowing your numbers before you go in, and having them written down (ideally a bunch of times on different days), may help. It did for me.

I'm right there with you! I've had to stop bending over. When I stand back up from a bent forward position, I pretty much always get faint, dizzy, nauseous and stay tachy for a while. If I do it twice in short time, I'll be useless for the rest of the day. Sometimes I get tinnitus or light sensitivity afterwards. I don't wear shows with laces any more, so I don't have to bend over and tie them. It's slip on's all the time. I usually don't wear shoes at home so I can pick things up with my toes. I'm getting better at it. I've contemplated buying a grabber, but I know I'd forget the thing on the other side of the house - always. But thankfully, the kids have recently stepped up their game.

Hi, I’m new to this board and to a dysautonomia diagnosis (pots and sweat, and more tests pending). I live in Colorado at 5280 ft. My spO2% is typically 90-93 at home. When I travel down near sea level, to my specialists, my spO2 is 94-95. At higher altitude (10000 ft), it drops to 88-89. My family and friends don’t usually show this much change. My syncope tends to be worse up in the mountains. I’ve also gotten what I call fire legs (not sure what that’s called) at altitude several times. It feels like the skin on my legs are burning. i hope your trip goes well.