Confused on what i should do

[Madisonjan7]

I’ll start with a little back story. In August 2017 I started noticing that my hr would pound like crazy when I did anything except lay in bed and it started to scare me, I told my mom about it who is a nurse and she blew it off and told me that it was probably nothing. One day in September me and my mom were in target and I started sweating and feeling as if my hr was going up, so I told my mom I thought I was about to pass out and I didn’t feel good and she took my pulse and it was 180 bpm and we went to the hospital where they ran all types of test and told me I needed to see a cardiologist. My cardiologist also ran millions of test and told me that I had low bp and tachycardia and put me on fludrocortisone and midodrine (not on midodrine anymore). My next appointment I mentioned dizziness and chest pains and he suggested that it was all anxiety related and I’d out grow it. I just don’t understand how I went from a perfectly healthy 18 year old to barely being able to get out of bed without my hr being 130 bpm and feeling as if I might pass out. I’m seriously so confused. Everyone thinks it’s in my head and I literally have no life due to it. I stay at home and watch tv. That’s all. So my questions are...

Is it like once you get this you have it forever or will it go away?

What vitamins/medicines help you?

Does anyone else have purple legs sometimes while standing?

Does this sickness come in flares or does it stay?

How can I improve quality of life? I can’t even work out! 

Should I find another doctor who understand Dysautonomia? 

 

Sorry for all the questions, I’m just lost.

[corina]

Hi Madisonjan7,  being on here for many years I've learned that a lot of our members don't have POTS forever. Especially the ones who got POTS after a virus seem to get better after about a few years (there are articles on that which I can't find atm sorry!). I do have the purple legs while standing, I think a lot of us do! For some this comes in flares, for others it stays (it stays for me but with the right for me meds I'm contents with my level of functioning). I feel that it's always best to find a Dysautonomia specialist as they understand (which is comforting) and can help you getting back with the right for you meds or adjustments (like water and salt loading, compression stockings etc all depending on what type of dys you have so always talk to your doctor about that!).

Hope this helps!

[Steven]

Many people are told by doctors that their Dysautonomia and POTS symptoms are anxiety. I have been told that by numerous doctors, even though I have told them clearly and calmly that I haven't felt at all nervous, worried or emotional when feeling the symptoms. Some people get anxious in response to their symptoms, maybe more so in the beginning because they don't know what is happening when their heart rate goes up. A diagnosis of anxiety often means that the doctor doesn't have an explanation for the symptoms.

Sometimes Dysautonomia and POTS are secondary to another condition and can go away if the primary condition is treated. Other times it will be permanent, but could get significantly better with the right sort of treatment or management (which will vary depending on what type and cause a particular person has).

I don't yet have any medications that work for me, but many other people say that medications have been helpful - sometimes very helpful. If someone has high heart rate at rest and with standing or activity, they can take something to slow down their heart rate. If someone has low blood pressure at rest and with standing or activity, they can take something to raise their blood pressure. If someone has consistently high or low levels of a chemical in the body, they can take something to raise or lower that chemical or the effect of that chemical in the body. Of course, see a qualified health professional before taking anything. I am in the process of arranging autonomic testing to learn more about my type of Dysautonomia/POTS, then maybe I will come up with some things that are more helpful for me.

I also get purple legs with standing (sometimes called acrocyanosis, livedo reticularis, blood pooling or veinous pooling) and it can also be in a blotchy or mottled (unevenly discoloured) pattern. This tends to be worst when standing still, so moving around a bit or flexing leg muscles on the spot can help. It can also happen with hanging arms.

It can be a long-term/permanent condition but can also have flares. Things like heat and over-exertion can bring on a flare. Many people have flairs over summer. If you live in a really cold place, maybe winter would be the worse time of year.

You might do better with exercises that you can do seated. Gyms have exercise bikes where you can be seated, as well as rowing machines and other things. Many people like swimming as an exercise. You might also be able to do strength/resistance exercises that don't raise the heart rate as much as cardio exercises. Some people also like yoga or pilates. I walk in the morning or after the sun has gone down.

It would be really helpful to have a doctor who understands Dysautonomia and POTS, so your doctor can educate you instead of you trying to educate your doctor.

It could help to add your country to your profile on here so people can offer suggestions about where to find good doctors, autonomic testing or specialised clinics in your country.

It could also help to take blood pressure and heart rate readings at home from time to time, lying down and standing up, at different temperatures, at full rest and after mild exertion, as many doctors will take a reading while sitting in their air-conditioned office and base decisions on that, but the differences between lying down and standing, at different temperatures, at full rest and after mild exertion, are important because the readings can change quite a lot depending on those factors. They do for me.

I hope that helps.