KnickKnack

I'm so sorry you're having a tough time. My journey with POTS started seemingly out of nowhere, in January of 2015. It felt like a switch was flipped overnight and I went from a healthy person to a sick person. I dealt with severe fatigue. So bad that I couldn't move from the couch for days and dreaded having to get up and walk anywhere. I was dizzy, had brain fog, racing heart, all the typical symptoms, and it was miserable. I even lost a good deal of weight because eating made me feel sick. Sometimes, I also felt like my future was really uncertain. It was especially frustrating when I was going to different doctors trying to get answers. (I finally did, but it took me a few years.) I've never been on meds, but tried upping my salt, water, and wearing compression socks, none of which made a difference. Through some trial and error I eventually discovered there was a really close connection between my sleep schedule and how bad my symptoms were. If I don't stay between my scheduled "window" of sleep, I can tumble right back into POTS-mode. When I'm well rested, I have very little symptoms, often none at all. Don't lose hope, even though things are obviously really tough right now for you. If you don't already, I suggest keeping a journal where you can track your symptoms, sleep, diet, etc. It may help you to see if there are any connections between things. And listen to your body. From my own experience and reading posts on here, it seems that it's common for dysautonomia symptoms to fluctuate and cycle. So keep in mind that how you feel isnt necessarily how you'll feel forever. Hope you get some answers and relief soon. Thinking and praying for you.

I've experienced bouts of tachycardia at night before, to the point that I couldn't sleep because I could hear my heart racing in my ears. Eventually I made the connection that, for me, this particular event was mostly due to anxiety. When I don't sleep well, my symptoms get noticeably worse. So I was so concerned with getting a good night's sleep that I made myself nervous and my heart would race (which in turn made it hard to sleep!) Not saying this is the case for you of course, just the way I experienced it. As for the energy changes, I have definitely felt that too! Even before I was diagnosed, I noticed that even if I was extremely symptomatic during the day (dizziness, fatigue, brain fog) I usually felt MUCH better in the evenings. Typically 6 or 7 pm until fairly late at night. It's strange, because I could be so exhausted and dizzy that I couldn't get off the couch most of the day and then evening would hit and I would feel like I could run around the block. Honestly, I dont know the reason for it. Dealing with all these strange symptoms can be so confusing, but it does get easier as you learn what works for you. Once you have an official diagnosis, you'll hopefully have a place to start in feeling better. Feel free to ask any other questions! It helps to have some support and know others' experiences. I'll keep you in my prayers!

@DizzyGirls Just a friendly warning, I wouldn't rely solely on the phone app. I have the same one and started to check my O2 when I was feeling very symptomatic. The readings were consistently low. Some in the low 80's. It threw me into a panic thinking something was very wrong, but I bought a finger pulse ox machine to measure it against. The finger device showed consistent HIGH numbers. 98-99 usually, while the phone app showed low numbers. I actually just checked it now. Finger device is reading 98, while the phone one is reading 91. If you own a finger pulse ox, I would recommend using that to get a more accurate reading! Hope you figure things out and she's feeling better soon.

@DizzyGirls Just a friendly warning, I wouldn't rely solely on the phone app. I have the same one and started to check my O2 when I was feeling very symptomatic. The readings were consistently low. Some in the low 80's. It threw me into a panic thinking something was very wrong, but I bought a finger pulse ox machine to measure it against. The finger device showed consistent HIGH numbers. 98-99 usually, while the phone app showed low numbers. I actually just checked it now. Finger device is reading 98, while the phone one is reading 91. If you own a finger pulse ox, I would recommend using that to get a more accurate reading! Hope you figure things out and she's feeling better soon.

Sorry for my reply going through multiple times. I got an error, so I clicked submit a few times. Is there a way to delete a post?

@DizzyGirls Just a friendly warning, I wouldn't rely solely on the phone app. I have the same one and started to check my O2 when I was feeling very symptomatic. The readings were consistently low. Some in the low 80's. It threw me into a panic thinking something was very wrong, but I bought a finger pulse ox machine to measure it against. The finger device showed consistent HIGH numbers. 98-99 usually, while the phone app showed low numbers. I actually just checked it now. Finger device is reading 98, while the phone one is reading 91. If you own a finger pulse ox, I would recommend using that to get a more accurate reading! Hope you figure things out and she's feeling better soon.

@StayAtHomeMom I haven't been to a chiro, just to a masseuse for about a year, but I stopped going because while it seemed to help in the moment, it actually seemed to trigger worse neck pain and migraines later on. Right now I'm mostly just trying to monitor when it happens, especially the ones that do cause me pain, that way if I decide to see a doctor, I'll have some notes.

Thanks for your responses @Lily and @WinterSown . Always interesting to hear that other people share some of the same "quirks." @StayAtHomeMom Do you happen to know if you can be considered to have EDS without meeting the Beighton criteria but being hypermobile in other ways? Or I guess it would just be considered a form of general hypermobility then. And yes, my fingers and neck definitely feel stiff if I don't crack them for a while. But most of my joints just do it on their own. Last night, I tried to make mental notes of every time a joint cracked or popped. It was basically any time I moved! I just hope it doesn't lead to problems as I get older, since I can't control it.

I've actually looked into EDS as a possibility (my own research, haven't seen a doctor about it.) I definitely have some degree of hypermobility and have since I was little. One time, at a massage therapy session, the masseuse actually broke the usual silence of the session to tell me how surprised she was at how far back my arm could bend! Haha. She told me my chronic neck pain is probably because my joints move too easily, therefore allowing me to sit and move in positions I shouldn't. I looked up the Beighton scale thing though, and I can't do any of the things listed on there. But I can move in a whole lot of other weird ways people around me can't! Not sure if that scale is the only criteria.

Hi all. Not sure if this is even POTS related but I know many people on here experience other symptoms/conditions. Anyone have constantly popping and cracking joints? I'm young (20's) but my bones sound like an old woman's when I move and have for years. It's not limited to a specific joint, it's my knees, ankles, neck, shoulders, elbows, wrists, etc. Seems like I can't make a move without a joint making a noise. The majority of these pops/cracks typically don't hurt, so I've been paying it no mind. I just thought it was something joints did. But lately I've been feeling worried that it might cause permanent damage down the road. These are the ones that do hurt: Sometimes my hip will feel like it suddenly moves "out of place." It's hard to describe, but it just hurts and I usually have to twist or shake my leg around to fix it. It happens to my wrist too, just a sudden pain like something isn't where it should be and I have to gently move/rotate it to snap it back. I have even felt it in my sternum/collar bone area. I also have jaw stiffness (possible tmj?) that can get bad at times too. Clicking and loud pops there too. Anyone else have this?

I have very frequent headaches and migraines too and have also wondered if they're connected to POTS. I feel the pain all through my shoulders, neck, and head. For me, they seem to be connected to the quality of sleep I'm getting, as well as the weather. I have many more migraine/headache days in the spring and summer and once had a migraine that lasted almost 2 weeks! Painkillers work some times for me and other times do very little. But what I've found does help for me at least a little is doing stretches to loosen up my back and neck muscles. Do you feel tension in your shoulders/neck when you get a migraine? Like maybe the muscles are too tight and triggering it? I know how frustrating dealing with these headaches can be. Hope you find some relief.

Yes! That's the part that frustrates me about the whole thing, wondering if there's something "off" in my body causing the condition that might have an easy fix. Except getting to that fix isn't easy because it could be something that flies under the radar of every doctor. And finding a doctor who knows anything about POTS is tough, at least in my experience. Ughh

I've had severe dry mouth issues for years now, even before my POTS symptoms became prominent. I would feel thirsty WHILE I was drinking water. Got tested twice for diabetes because of it and went through extensive allergy testing as well. But it would get so bad I would be near tears. Using mouthwash and lozenges specifically for dry mouth symptoms seems to help. Coconut water and aloe drinks can offer some relief as well.

@PistolI probably could. Right now a lot of my co-workers are away on vacation, so I'm having to work extra shifts until they get back. Things should settle after that and I'll speak to my boss about the situation. Thanks for the suggestion!

@StayAtHomeMom Thanks for the input. I was surprised when I first made the connection between my hours sleeping and my symptoms. I've been thinking lately about how frustrating it is to not have an underlying cause. But I've heard it's difficult to narrow it all down and have a solid answer. My experience with POTS has been strange. Symptoms seemed to first appear several years ago when I came down with a mysterious illness that left me in bed for a week, then I felt fine for a few years and one day it all hit me again. @blizzard2014 Thank you for your response too. I guess for some people, sleep just really is the key to managing symptoms. Glad you found your "number." I'm going to have to just try really hard to stick to a schedule, which is difficult at the moment working evening shifts, but I'll manage.

Hi! New here to the forum. I looked briefly and didn’t see this particular question posted on this message board. If it is and I missed it, I apologize. And sorry if this is kind of long, I jsut want to make sure I explain my situation. My question is: has anyone else with POTS found that sticking to a scheduled bedtime/wake up time can essentially eliminate all symptoms? A bit of backstory: In May of 2017, after almost 2 years of debilitating symptoms that included extreme fatigue, dizziness, brain fog, and digestive issues, I was finally diagnosed with POTS. This was a relief at the time, as I had spent a long while bouncing back and forth between doctors who didn’t know what to make of me (because I appeared healthy and all my bloodwork was fine) and suggested everything from chronic fatigue, to vertigo, to my symptoms being a result of anxiety. Leading up to my diagnoses and for some time after, I was feeling absolutely miserable. Spent most of my time on the couch, as walking or doing anything at all was just too much effort. I can’t even describe the fatigue, and it was made worse by near-constant stomach upset and nausea, dizziness, brain fog, and migraines. My life felt like it was on hold, and I even considered the possibility that I may not be able to work. However, at some point, I established a sleep schedule. Typically, bed by 9:30 or 10pm, and up by 7 or 7:30am. Shortly after falling into this routine, my symptoms basically vanished. The fatigue went away and I ended the day with energy to spare! I had virtually no dizzy spells or stomach issues anymore and felt so great that I wondered if maybe I had been cured. It was night and day to what I had been experiencing previously, and this lasted for about a year. But recently, my part-time job has required me to work several evening shifts a week, and I usually don’t get home until past 11. So, to compensate for the much later bedtime, I’ve been shifting my wake up time to reflect that. And BAM, my symptoms returned full force within a few days of the new shifts. I was incredibly fatigued again, dizzy, and dealing with digestive upset from the moment I woke up. So when I had a few days off, I went back to my normal bedtime. My symptoms cut in half with just one night of my regular sleeping habits. I haven’t been able to get on the schedule for more than just a couple of days, but if the past is any indication, my symptoms would likely stop again. I found that even during my year of being pretty much symptom-free, anytime I would slip up on my rigid sleep schedule, I would be thrown into POTS all over again until I got back on track. I’m just confused. I’m sleeping the same amount of hours either way but this one particular bed/wake up time seems to be the key to basically being free from the effects of POTS. Obviously, sleep is important in any chronic condition, but is it common in some people for it to be all you need to manage POTS? Can all symptoms possibly be connected to and “fixed” by finding the correct hours to sleep? I don’t increase water or salt and haven’t found my symptoms to be cyclical. It is just getting to sleep at the right time that seems to impact me. I would gladly welcome any input of other people with POTS. I’m still getting used to navigating this condition, but I know that many people can increase water, salt, and get plenty of rest but still suffer from intense symptoms. So I wonder if it is common for my symptoms, as severe as they can be, to be remedied by something so simple. There is always that inkling that maybe the doctor missed something and I was misdiagnosed. Or, it may turn out this is common, and I just don't know enough about the condition still. Thank you for taking the time to read this! I welcome stories of other peoples’ experiences, as well as questions about my own.