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FileTrekker

How do I know what I'm dealing with here?

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Hi,

I'm new, at the end of August of this year I suddenly felt unwell and noticed my heart rate was in the 90-100 BPM range sitting down, and increasing on standing.
I went to A&E who ran tests and said they could find nothing wrong. This happened again a week later, rinse, repeat, etc.

At this time it was when I noticed that upon standing my Heart Rate would go a lot higher than when sitting. There were a few incidents, mostly after overeating where my heart rate was also higher either sitting / lying, or when moving around i.e. rolling over in bed, but still, higher when standing.

Since changing diet and so on the symptoms now occur only when standing, except last week when it happened again, along with flu like symptoms, which the Doctor reckons was  viral condition.

I have been tested by ECG (EKG), Blood Tests and X-Ray, but my doctors refuse to do an ECHO as they say people with a normal ECG don't usually get an ECHO test on the NHS because they can find nothing to indicate a need to do so. The only thing the ECG found was PVCs (premature ventricular contractions) ectopics. I also had a 24hr Blood Pressure Monitor which was mostly normal with a few drops in BP but not many. My blood pressure does not drop significantly on standing, although does slightly, but gets slowly worse the longer I stand.

My voice is also a little weaker than it used to be, but I find this mostly due to being difficult to catch my breath, I run out of breath a little when laughing or talking. My hands are cold quite often, I also get momentary dizziness when sat down. One other thing I have noticed is when I am relaxed / resting, especially in bed, my heart rate will go a lot lower than it used to, often in the low 60's and 50's. at one point high 40s (Bradycardia) despite being 6ft 5in and 220lb, but again, the doctors do not seem concerneed (There aren't really any symptoms when I have brady however)

Cardiologist suspects POTS and made a diagnosis of "Probable POTS", but feels little reason to do any further diagnostic testing as he says there's little benefit and that the cause can not often be found, but he did not do any real testing.

My symptoms do not seem to fit any category of dysautonomia very well.

I listed the symptoms of every common form of Dysautonomia and listed all the known symptoms. I then matched my symptoms to each and did a percentage match to each to see which fit best. 

The results are;

PoTS: 54%

Autonomic Dysreflexia: 28%

Pure Autonomic Failure: 25% 

Autonomic Neuropathy: 20%

Multiple System Atrophy: 18%

Autoimmune AAG: 0%

So my question is how can I know for sure what I am even facing, given PoTS seems to be simply a collection of symptoms and the underlying reason (PAF, MSA, AD etc.) is not known. These conditions vary wildly from the begin to fatal.

Is there a way to make more sense of this? Anything that will give me more certainty in likelyhood of which condition it is?

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Hi and welcome.
It is all so confusing in the beginning. Some of that I'm not sure if it really changes any.

Like you cardiologists were never very concerned with anything they saw with my heart. 
The one thing I did that offered a little clarity was wore my husband's polar watch that showed my heart rate. What it revealed was my heart was blipping up to 170 just out of the blue when I would try to walk up the hall at work.

So my biggest question for you is how is this impacting your life? Are you still able to function? Still able to work?

I have had this condition for 9 years now. I am not on any meds because the ones I tried it did not go well for me and I never got the opportunity to try others.
So I am on none kind of by default.

And I am still living breathing although I have had to modify my life quite a bit.

So my advice will be basic and maybe others can chime in and give more specific advice if you want to pursue it.

But I would keep all medical records all tests and results organized. Maybe even keep a journal with dates and events. Things that you notice not quite normal.
This might be a place to start.
Then I would just look at impact. If you can still function normally you might have the option to just do nothing.
Could be it will improve or stay the same. That is one scenario.
I would personally not start pushing for more tests or info unless your daily living is impacted or things seem to deteriorate or any event happen that really concerns you.

I have been to ER many times had many tests over these years and most come back normal. So even though many of us have these conditions it can be difficult to find abnormalities with a lot of the structure of our bodies the make up of our bodies fall with in the norm. It's just more that our bodies go a bit haywire at times and we notice things that are not normal. 

So that is what I would look at. In what ways is this impacting you and at what point do you want to push for more intervention to see if you can improve things.
What are your goals?

I have accepted modifying my life to a disabled status. I no longer work due to my body not tolerating it. So we all have to start somewhere and make decisions about what we have room for what we can accept and goals and  my choice may not work for many and maybe it shouldn't in all honesty.

BTW my echo was normal I guess I've had 2-3 and it came back normal. Well I had some little abnormalities but at the time it was all within normal results for my age.

Edited by lieze
typo

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3 hours ago, FileTrekker said:

Hi,

I'm new, at the end of August of this year I suddenly felt unwell and noticed my heart rate was in the 90-100 BPM range sitting down, and increasing on standing.
I went to A&E who ran tests and said they could find nothing wrong. This happened again a week later, rinse, repeat, etc.

At this time it was when I noticed that upon standing my Heart Rate would go a lot higher than when sitting. There were a few incidents, mostly after overeating where my heart rate was also higher either sitting / lying, or when moving around i.e. rolling over in bed, but still, higher when standing.

Since changing diet and so on the symptoms now occur only when standing, except last week when it happened again, along with flu like symptoms, which the Doctor reckons was  viral condition.

I have been tested by ECG (EKG), Blood Tests and X-Ray, but my doctors refuse to do an ECHO as they say people with a normal ECG don't usually get an ECHO test on the NHS because they can find nothing to indicate a need to do so. The only thing the ECG found was PVCs (premature ventricular contractions) ectopics. I also had a 24hr Blood Pressure Monitor which was mostly normal with a few drops in BP but not many. My blood pressure does not drop significantly on standing, although does slightly, but gets slowly worse the longer I stand.

My voice is also a little weaker than it used to be, but I find this mostly due to being difficult to catch my breath, I run out of breath a little when laughing or talking. My hands are cold quite often, I also get momentary dizziness when sat down. One other thing I have noticed is when I am relaxed / resting, especially in bed, my heart rate will go a lot lower than it used to, often in the low 60's and 50's. at one point high 40s (Bradycardia) despite being 6ft 5in and 220lb, but again, the doctors do not seem concerneed (There aren't really any symptoms when I have brady however)

Cardiologist suspects POTS and made a diagnosis of "Probable POTS", but feels little reason to do any further diagnostic testing as he says there's little benefit and that the cause can not often be found, but he did not do any real testing.

My symptoms do not seem to fit any category of dysautonomia very well.

I listed the symptoms of every common form of Dysautonomia and listed all the known symptoms. I then matched my symptoms to each and did a percentage match to each to see which fit best. 

The results are;

PoTS: 54%

Autonomic Dysreflexia: 28%

Pure Autonomic Failure: 25% 

Autonomic Neuropathy: 20%

Multiple System Atrophy: 18%

Autoimmune AAG: 0%

So my question is how can I know for sure what I am even facing, given PoTS seems to be simply a collection of symptoms and the underlying reason (PAF, MSA, AD etc.) is not known. These conditions vary wildly from the begin to fatal.

Is there a way to make more sense of this? Anything that will give me more certainty in likelyhood of which condition it is?

Your symptoms are so similar to mine. Unfortunately I am in the same boat as you. The cardiologist says that I probably have POTS, but he does not treat for it. According to him, it may get better with time or it may get worse. I am currently on short term disability from work, but I will run out soon and likely will not get long term disability because I do not have an official diagnosis.

My illness started in August as well. I think it was triggered by having a stomach ulcer. I started noticed my racing & pounding heart rate. It races faster when I stand up. I’ve had issues with my blood pressure dropping - even upon standing. 

I can actually ‘see’ my heart beat in my vision and I experience dizziness. I can get dizzy while sitting down too - especially if someone moves toward me. Dizzy spells happen randomly and I feel like I am falling (even though I am not). I do not have syncope. 

I have PVC’s as well - I have had them for years. It looks like I have a hole in my heart and I am waiting for a CT of my heart (they did an ultrasound after ECG’s and holter monitor were essentially normal). 

It sucks that they will not give you an ultrasound - the ultrasound will tell them how well your heart function is (how well it is pumping), as well as looking for structural issues. 

We unfortunately can not diagnose on this forum. The only way to know what you have is for a specialist to diagnosis and do testing - though many with POTS and other dysautonomias may not find their underlying cause. 

Can you get a referral to another cardiologist? Is there someone the specializes in POTS testing near you? I believe there are websites that show specialist doctors in the US and the UK. I am in Canada and I don’t believe we have any specialists here for POTS. 

I’m sorry to hear you are going through this. This is a great community of folks that understand what it is like and I am sure others on here will have helpful suggestions. 

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Thanks for your reply!

luckily so far, other than generally feeling a bit yucky at times, I can still stay stood and move around, get to work and so on. It’s not been quite as easy as it used to be as I get tired easily, but so far I can cope.

The biggest issue has been when I’ve had anxiety or stress to deal with. When I do I find myself feeling a lot worse.

Despite this I’d quite like to get my situation defined properly. My biggest fear is a possible deterioration down the road.

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Every symptom I have you have. My first and most persistent symptoms is the inability to take a full satisfying breath. I also get winded very easy (just talking can make me lightheaded) One addition to your symptoms is I have GI symptoms as well. Diarrhea, constipation, nausea, heartburn, feeling full easily. Had a scope done and it was normal. 

A TTT should be done to confirm POTS, as well as a urine catacholmine test. Underlying cause may be difficult to find and may take years but a probable diagnosis of something that is a diagnosis of exclusion seems backwards to me. 

For POTS not everyone has every symptom at all times. Symptoms can change and cycle. And the list of symptoms are things that you can have not will have. People faint with POTS. I have never fainted. I have been diagnosised for 2 years now and may have had it much longer. Other people on here have fainted everytime they stand for years. 

See if you can find a doctor that you trust and see if they are willing to run the tests you bring to them. Some doctors will, some won't. And then do your research and become your own advocate. That is the best advice I can give you. Doctors work for you not the other way around. But remember they are only human and can make mistakes. 

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7 minutes ago, KristaKupcake said:

Your symptoms are so similar to mine. Unfortunately I am in the same boat as you. The cardiologist says that I probably have POTS, but he does not treat for it. According to him, it may get better with time or it may get worse. I am currently on short term disability from work, but I will run out soon and likely will not get long term disability because I do not have an official diagnosis.

My illness started in August as well. I think it was triggered by having a stomach ulcer. I started noticed my racing & pounding heart rate. It races faster when I stand up. I’ve had issues with my blood pressure dropping - even upon standing. 

I can actually ‘see’ my heart beat in my vision and I experience dizziness. I can get dizzy while sitting down too - especially if someone moves toward me. Dizzy spells happen randomly and I feel like I am falling (even though I am not). I do not have syncope. 

I have PVC’s as well - I have had them for years. It looks like I have a hole in my heart and I am waiting for a CT of my heart (they did an ultrasound after ECG’s and holter monitor were essentially normal). 

It sucks that they will not give you an ultrasound - the ultrasound will tell them how well your heart function is (how well it is pumping), as well as looking for structural issues. 

We unfortunately can not diagnose on this forum. The only way to know what you have is for a specialist to diagnosis and do testing - though many with POTS and other dysautonomias may not find their underlying cause. 

Can you get a referral to another cardiologist? Is there someone the specializes in POTS testing near you? I believe there are websites that show specialist doctors in the US and the UK. I am in Canada and I don’t believe we have any specialists here for POTS. 

I’m sorry to hear you are going through this. This is a great community of folks that understand what it is like and I am sure others on here will have helpful suggestions. 

Thank you.

I can imagine I can’t get a diagnosis but I’m just looking at possibilities. Sorry you’re in the same situation, it does sound very similar.

I have a follow up with cardiology in January so I can push for it again then and if he still refuses, I can ask.

I believe a good cardiologist in the UK is Dr. Sanjay Gupta in York who I am sure many here are familiar with from YouTube so I am strongly considering paying to see him privately.

hope you get some answers too :)

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1 hour ago, FileTrekker said:

Thanks for your reply!

luckily so far, other than generally feeling a bit yucky at times, I can still stay stood and move around, get to work and so on. It’s not been quite as easy as it used to be as I get tired easily, but so far I can cope.

The biggest issue has been when I’ve had anxiety or stress to deal with. When I do I find myself feeling a lot worse.

Despite this I’d quite like to get my situation defined properly. My biggest fear is a possible deterioration down the road.

I certainly do not blame you for wanting more answers. It is your body and your life and future we are talking about.

What I would recommend is keep doing everything you can do. Don't baby yourself too much. It's important to stay conditioned and the thing I keep hearing over and over the last person I heard it from  was a specialist from the dysautonomia department at Cleveland Clinic. He said exercise has shown to improve things for people with POTS. So try if you can to stay active.

Try very hard to get a good nights sleep every night and drink plenty of water.  Also good nutrition is important. Try to get all the vitamins and minerals that you need if you can through foods. Look at natural sources of magnesium which might help calm your nervous system and also make sure you are getting enough potassium. I eat a banana every single day and drink a whole quart of Gatorade. I once had horrible chest pain went to the hospital and was found that my potassium for some reason was low. So I really think a healthy diet is a must.

Regarding the anxiety I think it's totally normal that our anxiety gets triggered when we have these wide fluctuations with heart rate, bp and also the issues with breathing got me big time. That has improved somewhat for me. In the beginning I had difficulty laughing or talking much I would get so short of breath. But if you can practice some taking slow deep breaths when you notice these abnormal things it can really help. You can learn to calm yourself and work to get heart rates down if your heart takes off on you.  At least it often works for me.

I see a neuropsychologist and the first thing she recommended to me was slow deep breathing a couple times a day for maybe 15-20 minutes each. It takes a bit of work to really relax and do this but the whole idea is that it activates the parasympathetic nervous system. It did help me. Also if you can try some meditation. The anxiety can really make everything worse and it becomes a real vicious cycle to determine what is anxiety what is POTS. There are so many symptoms that overlap between the two and they seem to make one another worse. 

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If you are under Great Britain's health system, you might have to make do for a while with what you can do without a prescription.  That health system seems to be unconscionably slow. 

Anyway, if you have POTS the first line treatment is increasing intake of salt and water (8-10 grams of salt per day and at least 4 liters of water).  You don't need a doctor to tell you to try it.  Some people benefit more if some of that salt and water is in the form of Pedialyte (or a homemade facsimile thereof). 

Tensing your leg muscles when you are standing or sitting and feeling symptoms come on can help. 

Doing some kind of cardio against resistance (like cycling, swimming, or elliptical trainer) helps to improve leg muscle tone, which helps to keep blood from pooling in your legs.  Do what you can each day even if it's just 1 minute of air cycling in bed.  Then do a little more than that tomorrow.  

If you feel symptoms after eating (blood rushes to your stomach to help with digestion), then eat smaller meals more often.  Some people feel better after eliminating certain foods, like carb-rich foods or foods that contain histamine.  Keeping a food and symptom diary might be worth the bother.  

Can you manage to not stand very much at work?  Something as simple as putting your feet up on a footrest can help prevent blood from pooling in your feet.  

That is all I can think of for now.  Try some non-prescription treatments and see if they help, but also keep pursuing the "probably POTS" diagnosis and see if you can get it clarified.

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Hi 

I see you are in the uk . I have attended Dr Gupta seminars, he is really a very caring compassionate Dr and is very forward thinking .

Before I knew of Dr Gupta I considered seeing an autonomic cardiologist privately in London, however I was informed if I did I would have to pay for medications prescribed . I knew I couldnt afford that as I was not working so my Dr agreed to refer me as an NH'S paitent. I saw the cardiologist in three months which actually suprised me as it took 18 months to get my TTT in our local hospital. 

Just wanted to share so if money is a consideration you could check you could get meds on NHS if you went privately .

I hope you feel better soon 

 

 

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