Sea otter

@Amyschi similar happened to me. I noticed when I was in flare. I also have acid reflux lately and started to take therapy for reflux. Also when I have bad flare even slightest movement is making my heart to pound more.

@Amyschi yes. I am the same when I am in flare. It's similar like when you have the flu and don't have appetite. Like some people have said, I also have more appetite in the evening when I feel better. And after saline I am hungry like a bear.

@MomtoGiuliana yes, it seems the best solution when in flare.

@MikeO you don't have to feel bad at all.

@Sarah Tee I am little better now, thanks. @Pistol I feel you, I have experienced similar things that you mentioned, my PCP also sent me to the ER from her office and didn't want to give me saline at first because I was able to drink. Definitely I will have to be more prepared for the next time. I know I am not alone but battling with this illness and so many other things related to that is just so frustrating and exhausting.

@Sarah Tee and @Jyoti I have letter from my neurologist that saline helps but ER doctor didn't want to cooperate. Doctor was exhausted, working all alone in ER, there were a lot of patients and she didn't have time to devote little more so I can explain her some things. Usually when I am in bad flare I ask saline from my doctor but it was weekend so I decided to try ER.

As I lately have awful flares I decided to go to ER. This was first time after I got diagnosed that I went to ER. But unfortunately it felt almost the same before I got diagnosed. Then they didn't know what's wrong and now they didn't heard about my diagnosis. They did bloodwork which was fine and they were monitoring my HR for few hours. I tried to explain that it is problem when I stand up. I didn't even get saline infusions (infusions make me feel little better). One of the reasons that I went is some of my doctors suggested few times when it is really bad to go to ER. Now I have prove how it went. It seems like it doesn't matter how bad it is, you just have to suffer and hope it will get better. Is it worth going? What is your experience with ER?

True. We all have similar symptoms. At least we have diagnosis, but term for it and a lot of other things are unfortunately very confusing and misleading.

https://youtu.be/ucgaUP6Ip4E?feature=shared

Anyone thinks POTS has misleading name? Doctors, from my own experience, think we should be having symptoms only when standing. Why noone isn't mentioning patients can have bunch of symptoms also when they are sitting or laying down? It's a syndrome which means group of symptoms. Anyone have link for some good article or study about that? Thank you.

Yes, symptoms are changing daily, practically from minute to minute. You never know what you will get. This is "normal".

@Sarah Tee good advice with redirecting efforts. Yes, it is exhausting, I feel your frustration with doctors.

Thank you. I know it's not my fault. Sometimes some family members are putting pressure that I should do something, try basically everything that exist and similar stuff. Like it all depends on me. I understand it's hard for them watching me suffer but they are just adding additional burden on me with that kind of statements. But I know they are also frustrated they can't help.

Thank you so much for response.

I am just so tired. Of educating myself about POTS, educating others, even doctors, searching for ways how to help myself, trying various treatments that don't work and only giving me side effects, trying to raise awareness usually without much success. When I think I have some "control" over my body or that is getting better, flare happens. Plus triggers are always somewhere around the corner. I am doing everything I can but I feel quilty, like it's my fault that I am not getting better. I don't want my whole life to revolve around illness so I try sometimes to ignore it. But soon reality hits, as it is affecting every aspect of my life. Why am I writing this? Because I know you will understand. 😌

I am really sorry to hear that. Chronic illness is not easy at all, especially with all this additional burdens. I admire your courage for using your mobility scooter. The problem is that a lot of people are not aware of many (invisible) illnesses, this definitely needs to be changed.

@albertspa I found article on diet and fluids for POTS. Here is the link: https://www.potsuk.org/managingpots/diet-and-fluids-2/ High protein, high calorie foods, full fat, sauces... Plus a lot of water and salt. I am aware we are supposed to eat like that because our body is "running marathons", but sometimes I am worried about possible consequences, like high cholesterol or kindey stones.

@Sarah Tee Thank you for your support and links. There is so many assumptions with POTS, it's just crazy. Hopefully we will know something more about it in the near future and some things will change for better for all dysautonomia patients.

@Neomorph EDS and MCAS are very common with POTS, but I don't think I have doctors that can diagnose this. I have few symptoms of EDS and a lot of MCAS symptoms - but they are very similar to POTS symptoms. I have found information that a lot of people will never know exact cause of POTS. I had very bad infection before POTS, so maybe this is the cause, but who knows. These are possible causes from Dysautonomia International page... What Causes POTS? POTS is a heterogeneous (meaning it has many causes) group of disorders with similar clinical manifestations. POTS itself is not a disease; it is simply a cluster of symptoms that are frequently seen together. This is why the 'S' in POTS stands for "Syndrome." Since POTS is not a disease, it is fair to say that POTS is caused by something else. However, figuring out what is causing the symptoms of POTS in each patient can be very difficult, and in many cases, patients and their doctors will not be able to determine the precise underlying cause. When doctors cannot pinpoint the underlying cause of a patient's POTS, it may be called Primary or Idiopathic POTS. Idiopathic simply means "of an unknown origin." While researchers are still working to identify the root causes and pathology of POTS, there are several underlying diseases and conditions that are known to cause or be associated with POTS or POTS like symptoms in some patients. This is a partial list: -Amyloidosis; -Autoimmune Diseases such as Autoimmune Autonomic Ganglionopathy, Sjogren's Syndrome, Lupus, Sarcoidosis, Antiphospholipid Syndrome; -Chiari Malformation -Deconditioning; -Delta Storage Pool Deficiency -Diabetes and pre-diabetes -Ehlers Danlos Syndrome - a collagen protein disorder than can lead to joint hypermobility and "stretchy" veins; -Genetic Disorders/Abnormalities; -Infections such as Mononucleosis, Epstein Barr Virus, Lyme Disease, extra-pulmonary Mycoplasma pneumonia and Hepatitis -Multiple Sclerosis; -Mitochondrial Diseases; -Mast Cell Activation Disorders; -Paraneoplastic Syndrome - rare small tumors of the lung, ovary, breast and pancreas that produce antibodies -Toxicity from alcoholism, chemotherapy and heavy metal poisoning. -Traumas, pregnancy or surgery; -Vaccinations; -Vitamin Deficiencies/Anemia;

Thank you for your response. I already done some stool tests, but don't know exactly what tests. I am from Europe, we are unfortunately limited with doctors who are thinking "outside the box".

Has someone found their root cause for POTS? I've done a lot of tests during my search for diagnosis. After POTS diagnosis I tried to find the cause because I feel there is something else going on. As a lot of things were excluded and they didn't find anything after some time I kinda gave up and accepted I will probably never know. I don't have supportive doctor who is willing to "dig" with me for possible causes. There is always some test I didn't do (can't do) - we don't have a lot of tests in my country. From time to time there is question mark above my head with "what if", asking myself I gave up to easily.

@Sarah Tee this is so true what you wrote... Great idea for starting campaign. Go, Sarah! 😊

@Sarah Tee I found one of the articles on 'POTS is the most common condition you've never heard of'. Here is link: https://www.ehlers-danlos.com/cnnpotsfoles/ The biggest problem of all is that doctors are not educated about it so they can't recognize it. Now that patients in US have ICD code for POTS maybe they can found out easier how many people were diagnosed there. A lot of researches are 'old' and definitely need some updating, that's my opinion.

I guess doctors are also confused because informations are constantly changing.