StayAtHomeMom

Because breathing is my most severe symptom and the doctors didn't want a list, they kept sending me to a pulmonologist. I had to request the cardiologist. Then again they said my HR and BP were normal too.

The best thing you can do is try the medications your doctor is prescribing. I hate taking my medication (just on principle) but my Beta Blocker is the one I can not live without. If I didn't take it everyday I doubt I would be able to get out of bed. If a medication doesn't work well there are many things that are similar that may make you feel better. Or the dose may need to be adjusted. Being bed bound is only going to make things worse in the long run. I hope your body settles down soon. I know it is rough when it decides it wants to go haywire. Good luck.

I will typically do things similarly but I have learned that not everything is directly connected. And if you can get just a little relief from some things, then the others things are more manageable. When I was first sick I had so many things happening at once that it was overwhelming. Now things are much better, especially if the dizziness stays away

Certain viruses have been linked as triggers. But we have never had any of them. I suspect hEDS because of the flexibility that I have, compared to my husband, that I have seemed to have passed on to my boys. But hEDS is not a perfect fit because I have never had official dislocations or surgeries to correct things. Autoimmune feels like a better fit, but my testing keeps coming back negative. I know I need to see a rheumatologist to rule things out, but I hate seeing a new doctor that is going to look at me like I am crazy. So I have been taking a break for a little while.

It sounds like it could be related. I would check with your doctor though to be sure. In the beginning for me I had gastritis. They gave be the medication for that to try and it did wonders. Since I took the course of that medication I haven't had much trouble with nausea. That has been something like 2 years now. I did have a scope done though and it was mostly normal (had an esophagus stricture, that's it).

I have tried to get doctors to do the plasma catacholmine testing but they always insist on the urine testing. I have had it done twice and it both came back normal. I would have your B12, vitamin D, and iron checked. Low numbers can cause POTS like symptoms. Also thyroid if that hasn't been checked. I had a cortisol test done to check for Addison's. Apparently can cause similar symptoms as well. I would definitely get any test they are will to run as long as it isn't invasive. POTS is supposed to be diagnosed after everything else is ruled out. I am glad you were doing better. Once you get into a routine with dealing with POTS it does make it easier. And of course any kind of stressor causes our bodies to act up, including getting sick. I hope your flu resolves soon. My husband and I suspect our family got it back in January. First time for my husband and me. It was rough. Especially since I had to take care of everybody else.

That is an interesting theory. Like the brain needs some oxygen, so it tells the whole body it needs it. Lowest my O2 has ever been was 96. I have even hit 100 (nurse was a little surprised because most people don't). If I walk any distance, especially quickly, my breathing issue spikes though. I went for a short run when this all started. Not sure how it triggered it. But immediately couldn't breathe right. Spent two weeks fighting with it hoping I would wake up one day and it would be gone. From there it spiraled out of control with all of my other symptoms. That was 4 years ago this coming June. I have suspected I have had POTS since I was younger but I can't prove it. And a lot of things that I figured was normal or because I smoked (started young), I am beginning to think that may have been signs and symptoms of mild POTS. Especially considering my oldest son. My youngest son has some symptoms but no signs yet. He turned 13 today. All I can do is watch and wait for him. And hopefully with my oldest son having a diagnosis we can get to the underlying cause.

Yea, a bad dream is a good description. Unfortunately it is not. My oldest son has been showing signs and symptoms as long as me, finally got him into see my specialist and it looks like he has a good chance of having it too. He has testing next week. It feels kind of surreal. Had never heard of POTS and for the last few years it is always on my mind. Worrying what is going to cause symptoms to get worse so I can avoid it.

Bread, pasta, and heavy foods. I went keto (to lose some weight) and I noticed the bloating has mostly stopped. Not sure 100% it is from the diet change. But since October I haven't had any heartburn, and the bloating has stopped. My bowel movements have dramatically improved. When I am finished losing the weight I intend to stay low carb in the hopes that my GI problems will stay away. BTW I don't have celiac, I was already tested for that.

I noticed in the beginning anything that would make my stomach bloat would make the breathing worse. But honestly even with diet changes it hasn't gone away totally. It just varies in intensity for me. I did notice the Rolaids with gas relief would help if it was really bad. But that only helps enough to avoid the ER.

Over 3 years and counting for me. I have had the same tests and everything came back normal. I have even had my artial cases checked (hurt btw) It was my number one symptom. It has slowly gotten better so it is more tolerable. But I have described it like the bottom third of my lungs aren't working. My specialist is the only one who had an answer and he says it has to do with my POTS. I have been given no reasoning or solutions. I have noticed the higher my HR gets the worse it is. If my breathing becomes bad my HR is usually above 150. Lately I have been just taking an additional dose of my Beta Blocker and it seems to keep it from getting really bad like it was in the beginning. I also avoid the triggers that make it worse. I can usually do only one of the follow; smoke, talk, or walk. If I do more than one I usually get winded and it makes it worse. Laying on my left side usually helps a little too.

It can. My Sister in law was labeled depression and hyperchrondric. Turned out she had MS with low pain tolerance. She had numerous issues over the years when they would finally test they would find something. She had a sore throat (doc said strep) every month for a year. A nurse practitioner felt something one time she went in. Turned out she had nodules on her thyroid.

Some doctors don't know what to do with you after the diagnosis. My cardiologist tried to send me to an EP cardiologist. The EP cardiologist told him to send me to a specialist 3 hours away. It was a good choice. That being said my cardiologist started me on beta blocker to get my HR down. He was willing to learn about it. He had never seen it.

Finding a GP that you like and you feel listens to you can make a huge difference. Don't rule out nurse practitioners. When I find a good one for anyone in our family we usually stick to them as long as we can. I had to switch because the nurse practitioner I was seeing when I first got sick just didn't know what to do. She suggested I find an internist. My internist is wonderful. She explains things to me and is patient with my questions and worries. Sometimes that in itself can help.

I realize there are benefits to having the vaccine and I hope they choose to get it to be safer. But right now I am choosing to wait til they are older. They have a genetic predisposition to POTS, with my older son already showing signs. Whether it causes it or not I would hate to live with the "what-ifs". I think it would be better to wait til they are older, like I did with their other vaccines (didn't start any of them til they were over a year old). They are homeschooled and pretty sheltered so it will give me time to see if my younger son develops POTS as well. My biggest concern is that 1%. My research is showing 1% have a bad reaction. And with their genes and luck I think it is better to wait. If they were girls I may have made a different decision, but being boys I think it will be OK to wait for more data about the safety. The latest vaccine they use has only been in use in the US since 2016. Not enough time to show safety data. And honestly I don't trust our FDA a whole lot. Interestingly enough, I am OK with all the other vaccines. I kind of feel like a hypocrite, but this one scares me. And I have learned to trust my gut over the years. Thanks everyone for their responses. It has been interesting seeing people's opinion.

My 16 year old son is getting his autonomic testing done this coming up week, my specialist believes I am right and he has it already. My 13 year old son isn't showing signs yet but may still. Either way they would be high risk to get it. I worry that even if there was a tiny chance, they would just be unlucky enough for it to happen. If I remember right you can get the vaccine until you are in your late 20s.

We currently have the Hep A and whooping cough going around my city. They suspect my oldest son's friend has it. They get the test results back Monday. I agree it is crazy. The HPV vaccine only protects from 9(i think is the latest) strains of HPV. There are over 80 stains. To protect from so little, is it worth subjecting my boys' immune system to? I know originally it was for girls, and then they added it to include boys later because boys can transit it.

I am not but vaccines have always made me wary. I am fully vaccinated and so are my kids (except HPV and we don't get the flu shot). But I waited until my kids were over a year old before I started their shots. They were never in day care and we're fully vaccinated before they started elementary school. They are homeschooled now. I waited because my brother died 3 days after getting his DTP shot when he was 3 months old of SIDS. I know it probably didn't cause it, but there was enough of a question mark there that I waited til I felt the kids immune system could handle it. I am personally not an anti-vaxxer and I believe everyone should be vaccinated but the HPV vaccine is relatively new with little evidence that it is really safe. During my research last night I found there has been 3 different vaccines used in the US. The latest just started being used in 2016. Most side effects data is about the first 2. I thought it was interesting that there was claims it caused POTS so I figured I would post on here and see if anyone had the vaccine and developed it.

Thank you for that. I have a friend who has pseudotumor cerebri. She seen the early signs with her daughter and brought her in. Turns out she got her diagnosis at 13. Instead of late 20s liker her mom. It is hard watching your children have what you have. I am glad I was right, but also sad that I was right. We will see how bad it is coming up this week.

The HPV vaccine came up in a discussion with friends because I haven't got that vaccine for my sons. During a little bit of research there is some claims that the vaccine has caused POTS among other things. So my question is how many people got POTS after having the vaccine? Personally I never got it. It was too new and I don't trust new vaccines.

My mom likes the culturelle pills. The price is decent for the amount of probiotic you get. Personally I like kefir better. It is by the yogurt or milk. It is like $3 for lifeway brand. 6oz a day. But it tastes like liquid Greek yogurt so my mom hates it. I like it just don't get the plain.

Dryness could be the thyroid. Itchy depends. My son says his legs get itchy when he stands too long. (He seen my specialist Monday who believes I am right and my 16 year old son has POTS as well. ) You mentioned your T4, are they testing your T3 as well (the free for both preferably) and did the do the 3 tests for thyroid autoimmune? Don't remember them offhand but I could look them up if you want. Hashi's is an interesting thyroid autoimmune. It is usually associated with hypothyroidism but you can get hyper symptoms as well. It seems to fluctuate a lot. I love the walmartization comment. It made my evening. I don't like having all the specialists either. It works better if they are all in the same system and use the same portal. I know that isn't an option everywhere though. It is nice that my PCP can just type something on her laptop and see my results from my GI doctor's testing. Makes things easier. Unforgettable my neurologist (that is my POTS specialist) is 3 hours away and my records don't float easily.

I am sorry all of this is happening. I think what you are going through is a big fear for all of us. That being said I may have a sliver lining for you. IF you have cancer AND it is causing all of these other issues, it MAY be causing your POTS as well. I remember reading on my research of underlying causes that cancer can cause POTS. Not sure why or how. It was something I thought was interesting and kind of filed it away. Cancer does not mean death immediately. It is something my hubby has a hard time understanding. My mom had cervical cancer and they estimated she had it for 4 years. Only reason they found it was because her iron was really low. She is now cancer free. My husband's grandfather has leukemia. Has had it since I met him 8 years ago. Doctors told him he will die of old age before his cancer kills him. Have you looked into getting yourself an oncologist? Since a doctor suggested it maybe it won't be such a bad thing to have one that can oversee all this stuff going on. Keep your chin up, and try not to stress. We all know what that does to our bodies.

Do you have hashi's? You may want to look at a different thyroid medication. I have seen were the one that is actually pig thyroid hormone instead of the synthetic thyroid hormone can be better. I don't remember the name of the medication right off hand. Have you been checked for MS? And celiac? You remind me of what my sister in law has and is going through.

Are you noticing any specific foods that are messing with your stomach?