Pistol

@CaveGirl - have you tried to elevate the head of your bed? That is a commonly recommended tip for POTS sufferers. It might prevent your sleep problems?

@TorturedSoul - I am sorry you are feeling so alone. I know what it is like to see the docs scratch their heads over our symptoms but nothing shows up. Unfortunately the symptoms you are describing in this post don't seem related to POTS, so I am not sure if this forum can be of help. Just hang in there, I know you have an upcoming appointment with specialists for your children, so hopefully they can help. Best wishes!

@CaveGirl - blood pooling does not occur in the head, since it goes to the lowest body parts. Pooling means that gravity causes the blood to get stuck in the lower body b/c for various reasons the body is unable to pump it adequately back up to the organs, including the head. The mechanisms for this can be either vasoconstriction or vasodilation as well as a weak heart muscle, the latter NOT being from dysautonomia. Head problems such as headaches, cognitive issues etc are usually caused from not enough blood reaching the head.

Yes, your blood can pool in the abdomen, that is called splanchnic pooling. Happens often with dysautonomia.

@Knellie I have to get EGD's every 2 years b/c I have Barrett's and my father died of esophageal cancer. I normally do not do well with anesthesia but the conscious sedation they use during scopings does not affect me adversely. I do not flare afterwards, either.

It's not really anything new - they used to call it post-viral malaise. Some people get POTS-like symptoms after a major viral illness, like EBV or Lyme etc. It's just that so many people get COVID that of course a lot also get the prolonged POTS-like symptoms that it is being talked about right now.

Hi - the tiredness is normal, I had it with Metoprolol. Bystolic and Carvelidol. It lasts for a few weeks but eventually goes away. The shortness of breath goes away too, but I would decrease the dosage and slowly increase it when I got too short of breath.

@CallieAndToby22 - there are two different types of immune systems: the one that responds to antigenes ( when it is attacking normal cells it is called auto-immunity ) and the one that is always active - the innate immune system. It consists of blood cells etc. When it is overly active it is called auto-inflammation. Here is an article that describes the innate IS: WHAT IS INNATE IMMUNITY? | Center for Innate Immunity and Immune Disease (washington.edu)

Normally for bloating they would do both EGD and colonoscopy, since bloating can be caused by several GI disorders or illnesses. Have you had either one of those?

Do they catch SALMON in FLORIDA????????

@TorturedSoul - a distended abdomen can be from chronic bloating. GI problems are common in dysautonomia - have you ever consulted a GI specialist?

Dear @TorturedSoul - I am sorry you have to go through all of that. Have you had a TTT yourself? Did you ever have a holter monitor to see what your heart is doing when you have these rapid heart rates? Are you seeing a cardiologist or neurologist for yourself or your children? Do you have the ability to see an autonomic specialist if dysautonomia is suspected?

I am so sorry @tor that you are feeling like that. I too became very depressed when I became unable to work. My doc started me on a SSRI ( I take Escitalopram ) years ago, it is not only helpful with depression but commonly is prescribed for POTS as well, b/c it balances neurotransmitters in the brain, specifically serotonin. It helped me get over the hump. Yes, that sounds pretty typical for POTS. It is important that you do not overdo it, but rather listen to your body and stay within your new limits. I ignored my symptoms and therefore made POTS much, much worse, to the point of fainting and having seizures all of the time. The sooner you can adjust to the increased demand for rest and avoidance of stimulation the better you will feel. Just don't compare yourself to the "before POTS" You - it will make you more depressed. Hopefully after the Tilt test you will have a diagnosis and can find a capable physician to help you out.

@MTRJ75 - I am glad you found encouragement from the presentation. I know exactly what a relief it is when you finally find someone who understands all of your strange symptoms. When I finally found a specialist who knew why I got all these strange symptoms I felt like I was finally "real" - all those years the cardiologists and neurologists scratched their heads and came up with all kind of reasons why I could not have the symptoms I suffered from, because they could not explain them. No doubt the docs that treat you should be very interested in the info.

What topics or points of interest are you interested in and would like to see addressed in detail? For example POTS and aging, a general overview of POTS etc? Please share your requests here. Thanks.

@Knellie - I have severe reynauds and broke my toes and metatarsal bones often. I had more than usual coldness and also swelling and bruising but I did not loose feeling. I would have it checked immediately. Sometimes severe swelling - or even a dislocated bone - can press on a vein or nerve. I would go to ER.

@RecipeForDisaster - if she does not write orders - could it be that she is not a medical doctor? Maybe more of alternative medicine? Unfortunately that is not ever covered by insurance here in the US, and they cannot write orders but often give out prescriptions from their own stock. For example chiropractors cannot write orders for tests or prescriptions but are called Dr's. ( Not meant to sound downplaying chiropractors - I have a wonderful one that helps me a lot ).

Thanks so much for sharing, @Chuske!

Huh! Figures! I think all of us here have encountered docs that don't know beans about POTS. --- Who diagnosed you last year with POTS - was it your cardiologist? Did he do a TTT? And what has he done for treatment so far? If you do not feel you are getting proper treatment from your doc - have you looked at out physicians list? Unfortunately most of us have to travel out of state for specialist care, but you don/t really need a full-on specialist in autonomic disorders - a doc that understands POTS can do wonders. What 😵I have never heard of such amounts! My autonomic specialist asks for $ 400 if you don't have insurance that covers the visit. If that is how much they ask for a visit I would go out of state.

@Always_anastasia - please don't cancel! If you are symptomatic then most likely it will show something. If the type of POTS can be narrowed down by the testing then that could lead to exploring other meds, which in turn could really improve your symptoms.

Hello @erinlia - this happens b/c in some cases of POTS exercise triggers vasoconstriction. I am quite similar to you in respect of Reynaud's: I too had it since childhood, and in my teens I developed actual gangrenous spots on my toes. They looked like chilblains that turned into black scabs. I have HPOTS and the high adrenaline levels cause vasoconstriction to the point of vascular spams. This causes ( for me ) Reynaud's, seizures from not enough oxygen going to the brain, and angina ( the coronary vessels spasm ). I am on high doses of calcium channel blocker - a vasodilator. --- I have to wear wool socks year round and have to avoid cold, like you: and also get it from stress or activity. Currently I am in a POTS flare, so the toes are constantly ice cold. What helps me the most are IV fluids, I have a port and get them at home. I already was so bad that I could not talk or think from loss of circulation to the brain, shivering and with ice cold feet ( I can submerge them in hot water for minutes and they come out just as ice cold ) - after just a few minutes of IV fluids everything visibly relaxed, my feet became warm, the shivering stopped and my speech and ability to think returned to normal. @UnaOwen - what can help for chilblains from Reynauds are hot and cold foot baths - you alternate submerging submerging your feet between hot and cold foot baths.

Hello @Always_anastasia - I had autonomic testing done many years ago, before I was diagnosed. It was at a mayor autonomic clinic here in the US. They hooked me up to an EKG an other sensors and had me stand until I could not take it anymore. I remember my heart pounding after a while and that my feet turned blue. However - they said the testing was normal. Prior to that testing I had a TTT which showed NCS ( at that time ). Since the autonomic clinic was not able to help me I went to another specialist who diagnosed me on the spot with HPOTS, he checked my adrenaline levels just to confirm and they were high. There are other autonomic tests they can do, I am not sure what your neurologist will test. I would not worry - the testing is not uncomfortable. You can find more info here: Autonomic Testing for Dysautonomia - Dysautonomia, Disorders, Diagnostics & Info - Dysautonomia Information Network (DINET) Good luck with your tests!

@Sarah Tee - there are different types of dysautonomia, and your symptoms are part of many of them. Cardiologists often are the first to see dysautonomia patients b/c of the high HR and associated fainting ( in some cases ). A TTT usually shines a light on it. Although my sister has all of the symptoms of HPOTS except for tachycardia - which normally excludes a diagnosis of POTS. She is still treated for POTS with a diagnosis of autonomic neuropathy. So - as you see, a experienced dysautonomia specialist should know what to do for you!

I was told the same thing. I used to have to go to the ER of my nearest small hospital for POTS every 6-8 weeks and often was refused what helps me most: IV fluids. One of the nurses in that ER once advised me to drive an hour longer and go to the University hospital ER - she said their docs at the small ER have no clue about POTS, and no interest in learning either. Thankfully since I am getting IV fluids at home now I rarely had to go to ER since.

Yes @DizzyGirls - my recent CBC showed low RBC's, low WBC's, high monos ( all signs of inflammation ) and anemia. I am on an iron supplement now and scheduled for more labs next week.