WanderWonder

@Pistol Thank you for your experience! Flonase alone didn't do much, so I'm trying a different steroid spray along with an antihistamine spray. That combination seems to be working better. Unfortunately I suspect I have an indoor allergy, so there's no "seasons" for me. Ill be reading about histamine soon.

What kind of dropping sensation - your entire body or just your heart or stomach? These are my symptoms that occur about 1-2 hours after eating the food - usually after something heavy and lasts a few hours. Does it sound familiar: heart rate spike (my heart rate monitor shows me as "stressed". This happens with any meal on days the POTS is bad though), vibration inside chest near heart, chest tightness, overall feeling anxious/panicked, feeling out of it/hazy, brain fog, feeling tired like heart with give out if I exert myself too much, heart pounding, heartbeat going faster as I change positions, acid reflux, feeling bloated. I'm not sure why, but so far I think it could be from one of these: inflammation, hashimotos, food intollerance, GERD/acid reflux, weak heart needing more energy to process the food, poor sleep leading to more stress on body needing to digest food, poor breathing habits, poor chewing/eating too fast, gas pressing on vagus nerve.

@SueMom Thanks for the list of providers. I think I'm at the stage where I'm not 100% sure if I have it, or is able to make the symptoms better through other means (see my other thread). The providers are a few hours drive away from me, so doable. I'm not sure about the costs, and I'd have to look into getting different insurance that allows me to pick providers outside my insurance's hospital if it gets worse. @kisekis Idon't want to hijack your thread though, so that's enough about me! I hope you find a specialist that can provide you relief. It looks like @dancer65 posted some experience - hopefully that is useful to you.

I've noticed that when I sleep well - my O2 meter doesn't dip up and down, and I don't have any sleep disturbances. I wake up feeling refreshed - my heart rate is steady when I stand up. However when I have trouble breathing while sleeping and toss and turn throughout the night, that's when in the day my body feels more stressed, tired, and I get the POTS symptoms - heart rate shoots up when I stand. I've read that people with POTS are more susceptible to poor sleep and stress. For me it's the other way around: I think I've figured out that my poor sleep and stress has to do with nighttime allergies, which then leads to POTS? I'm not sure if I really have POTS then, or something else. Anyone have any experience with that?

I live in the US. In the US, healthcare isn't free. If people use insurance, the insurance companies have special rules to not spend unnecessary costs. By diagnoses, I couldn't get diagnosed with POTS, sleep apnea, acid reflux issues, allergies, etc. For example, instead of giving me allergy tests that are expensive, they prescribed me nasal sprays instead of testing to see if it gets better. So that was why I was surprised that your diagnoses list had that much, and thought that if someone was knowledgeable enough gave you the correct tests to diagnose you, they might be able to help.

Hi, I have no experience in those, but I was wondering how did you get those diagnoses you listed? If it was easy to get those diagnoses, I would guess those medical providers you saw are at least somewhat knowledge and can help you? I'm still having trouble getting any kind of useful diagnosis from my primary care over here.

I've been forcing myself to continue exercising even though I feel tired. Strangely enough, my heart rate goes down and I feel less tired! This morning I was starting at 120bpm just standing still, but when I walked more, it went up, but it eventually leveled out to about 105-111bpm. Anyone else experience that?

I've been having food intollerance-like issues around the same time the POTS symptoms started. I've been experimenting with food, and it seems like certain common-triggering foods trigger it for me. I'm still at the stage where I'm doing a total elimination and then reintroducing things, but I've noticed when I cut out dairy, gluten, and sugar I feel a lot better without brain fog, acid reflux, or palpitations. @liezeGatorade has sugar in it, and also eggs is another common food that causes intollerance. What I did is look at various food lists that are considered low fod-map and Mediterranean diets. The best full meal I've had without symptoms is brown rice or quinoa, a vegetable, and fruit, and a fatty fish like salmon. I also like making salads and soups because they have safer ingredients and are filling. Perhaps reintroducing a new vegetable may work better - both for less likely to cause issues, and to reduce the fear since it's considered more safe. Drinking more water may help with the hungry feeling, but try to get enough healthy calories (not from Gatorade). Let me know if you want more info on how I stay full!

Interestingly someone says they think got PoTs from this. My PoTs symptoms happened about the same time, and it's worse on days I don't get good sleep. https://patient.info/forums/discuss/devastatingly-swollen-turbinates-641087

Thank you all for the quick reply! I have a call with my primary care doctor, so this really helps! My doctor had looked into my nose already and said it does look like there is some obstruction, but it's enough for me to breathe normally...which is true in the daytime. @KiminOrlandoTrbinateslooksrbinateslooks weird glitch sorry, Turbinates looks like the right term for it!! The CT nasal scan was requested from the ENT department before I can see them, but it came back with "miminimally thick" whatever that means. Do those show up on scans? @lieze they only swell at night after about 15 minutes of laying down. Nasal strips didn't do anything - I've tried a few sizes. @Pistol I suspect I have an indoor dust allergy something, so there's no allergy season for me unfortunately. I've tried two kind of steroid spray, but that didn't work. I'll try the vasaline, but it's about 70-80% in my room. Edit: I got referred to an ENT along with some other nasal sprays to try. Thanks again everyone for your responses!

Hi, I don't know if this is related to dysautonomia, but I've been having a lot of sleepless nights and is hoping to hear if this sounds familiar: I have two balloon looking sacs about an inch up my nostrils that I can see when I use a flashlight. I can breathe in the day fine since they are only covering about 75%, but at night they swell up, and one of them completely blocks my nose like a wall. I wake up heart pounding like I can't breathe, and feel fatigued the rest of the day. As soon as I sit up, they shrink in minutes. I've reclined my bed 8in, got a hepa air purifier, wash sheets every week, tried netipot, used nasal steroids, got bedmites sheets... I'm not sure what else to do. My sinus scan came back negative, so my doctor won't refer me to an ENT as they likely won't have any suggestions. I've tried sleeping sitting up, but I couldn't go to sleep that way. Any thoughts? Thank you!

I usually do a casual/brisk walk on the treadmill everyday for a mile. Some days I feel fatigued. My heart rate standing is usually 80bpm, but it is about 105bpm those days. When I start slowly walking, it goes up to 115-130bpm. If I keep walking it goes up to about 140bpm. At that point I stop because I feel too tired and my heart is beating too hard. I'm worried I'm straining it, it feels like it will give out even though I know that isn't likely. Does anyone exercise regardless of a high heart rate? What has your doctor said about this? Has anyone been told this is dangerous by a doctor?

@Pistol Thank you for taking the time to read and reply. It definitely eases my concerns about it being heart disease or my heart giving out, since I've been also having chest pressure, fatigue, too tired to exercise because my heart rate goes up too high too fast when I start, and is worse on nights I have trouble sleeping. My doctor did do a poor man's tilt and did verify it happens, but they just told me to drink more water and take nuun tablets. They say I am healthy and is hesitant to refer me to a specialist - is there anything I can say to them? EKG came back normal, so they aren't concerned. Also if I am referred to a specialist, often times they say I'm fine and honestly don't seem to want to do any tests or look into it further. What's the odds a cardiologist will know what it is? Also symptoms don't occur every day.

I have a oxygen pulse monitor. On days I get POTS symptoms (heart rate goes up 40+bpm within a few seconds of standing), when I'm wearing it and sitting doing nothing, my heart rate changes every second from about 72, 73, 74...all the way to about 97, then goes back down. Then it keeps cycling like that. This happens in a matter of about 30 seconds. Sometimes the numbers jump a few. My doctor said it's normal for these monitors to show readings like that, but it doesn't always happen on days I'm feeling well, and I've tested on friends. Their numbers remains steady with no changes. Has anyone else encountered this?

Hello, I can't find a doctor who recognises POTS, so I haven't been officially diagnosed with it. Sometimes when I stand up or sit down - even slowly - my heart pounds, and it feels like my heart is squeezing and is straining to pop out of my chest like it's trying to pump but there is pressure. I also briefly have a pounding/pressure in my head kind of like a head rush. Also I feel panicky. That pounding sensation lasts a few minutes. If I take deep, calming breaths it gets better quicker. Does anyone else have that? I also get that feeling after I eat heavy food. Some days it happens and other days it’s mysteriously better. On days I don’t have it, my heart rate behaves normally, staying around 80bpm when I stand up and eat heavy foods. When I casually exercise on those days, my bpm is still under 100bpm. On days I do have it, my heart rate immediately raises to 115-125bpm when I stand and walk around doing normal things. Sitting it is about 95bpm. I'm 28F, normal BMI, and low blood pressure that remains constant. Is this normal for POTS, should I be worried? Thanks!