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Potsies

Very high heart rate but mild symptoms?

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I was diagnosed with POTS, and I guess I have a mild form of it as I don't get low blood pressure or pass out, but my heart rate gets very high when standing. My average heart rate just from standing up is 150-160, with activity this goes into the 170-180s. Sitting down my heart rate is between 70-90. 

What would be the cause of my heart rate going so high without me having severe symptoms? My only major symptom that I complain about the most is fatigue. I am so exhausted, constantly. I wake up feeling as if I never slept. I do have occasional numbness in my extremities and cold and clammy feet, but the fatigue is what bothers me the most. I can walk almost an hour before feeling faint. I went to the doctor yesterday and she took my heart rate and was shocked that it was 157 just from standing, with normal blood pressure and that I didn't feel like I was gonna pass out. I read about a lot of people fainting and being quite more disabled than me with heart rates of 110-120, so how can I have an average heart rate of 150 but still have only "mild" symptoms? I have been unable to find a single doctor who knows anything about POTS or Dysautonomia in general.

Could it be a B12 deficiency? My B12 level is low-normal at 300

I also have a high ANA of 1:320 homogenous pattern, but tested negative for ENA

How can you tell what kind of POTS you have without laboratory tests, as no doctors are willing to perform sitting to standing catecholamine levels....

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A couple questions: How old are you? If you're young, maybe 157 beats isn't so much to totally stress you. As far as the ANA goes, could be autoimmune, could be medication. What meds are you on? If you go the DINET website, there are at least a dozen different causes for POTS. A good internist that knows your history will be able to figure out what next. 

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1 hour ago, JimL said:

A couple questions: How old are you? If you're young, maybe 157 beats isn't so much to totally stress you. As far as the ANA goes, could be autoimmune, could be medication. What meds are you on? If you go the DINET website, there are at least a dozen different causes for POTS. A good internist that knows your history will be able to figure out what next. 

I'm 23 and currently I'm just on Vyvanse for the brain fog, but I've been on it before the pots even started so I don't think it is the medication. I was prescribed Midodrine, but got constant headaches and blurry vision with a sense of detachment, so I am no longer taking it. 

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1 hour ago, Potsies said:

I'm 23 and currently I'm just on Vyvanse for the brain fog, but I've been on it before the pots even started so I don't think it is the medication. I was prescribed Midodrine, but got constant headaches and blurry vision with a sense of detachment, so I am no longer taking it. 

 

Yeah, at 23, your max HR is 197 I think. Still, 157 is too high for what you are doing. Vyvanse can affect blood pressure and the heart too, but that might not be it. Your B12 is on the lower side of normal, but still in the normal range. 

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@Potsies - you do not have to have a change in BP to have POTS. Actually they say an increase in HR of 30 bpm WITHOUT a drop in BP is indicative of POTS. Also symptoms longer than 6 months. The fatigue is also the symptom I mind most. And only 30% of people with POTS actually faint. So - yes, it sounds like POTS. Have you had a TTT? --  Most likely you are not that symptomatic because you are still so young and your body has been able to compensate. Have you been increasing salt and fluid intake? Compression stockings? If you have mild symptoms this could help. Good that you are able to walk - exercise is important! But do not overdo it - too much can add to the fatigue. Do you sleep well? Have they checked your Vit D levels? Often in the winter this can be low in many people and can cause fatigue. I was severely deficient in both Vit D and B12 and my symptoms improved with supplementation. I get B12 shots every month. Be sure if they want you to supplement Vit D they order a loading dose - 50,000 units weekly for a few weeks then 2000 units daily. If you do not start with the high dose your levels will not come up. 

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14 hours ago, Potsies said:

What would be the cause of my heart rate going so high without me having severe symptoms? My only major symptom that I complain about the most is fatigue. I am so exhausted, constantly. I wake up feeling as if I never slept. I do have occasional numbness in my extremities and cold and clammy feet, but the fatigue is what bothers me the most. I can walk almost an hour before feeling faint. I went to the doctor yesterday and she took my heart rate and was shocked that it was 157 just from standing, with normal blood pressure and that I didn't feel like I was gonna pass out. I read about a lot of people fainting and being quite more disabled than me with heart rates of 110-120, so how can I have an average heart rate of 150 but still have only "mild" symptoms?

You and I are in the same boat: relatively mild symptoms that worse off people might be glad to experience.  As I understand, the heart beats faster because otherwise the blood wouldn't get around well enough.  Here is an example:  perhaps your veins are too stretchy, allowing blood to pool in your feet instead of circulating.  Your body increases release of norepinepherine in an attempt to get the veins to constrict.  The NE also raises your heart rate.  Your end result is an elevated heart rate.  The fatigue comes from all the extra work your heart is doing.  This is just one example.  I am most familiar with this possible mechanism, because I think this is what is happening with me.  There might be other mechanisms and processes that can lead to the same end result.  The severity of symptoms depends on exactly what in your body is malfunctioning.  There are several different malfunctions that can lead to the same end result, so it is all highly individual.

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1 hour ago, Lily said:

You and I are in the same boat: relatively mild symptoms that worse off people might be glad to experience.  As I understand, the heart beats faster because otherwise the blood wouldn't get around well enough.  Here is an example:  perhaps your veins are too stretchy, allowing blood to pool in your feet instead of circulating.  Your body increases release of norepinepherine in an attempt to get the veins to constrict.  The NE also raises your heart rate.  Your end result is an elevated heart rate.  The fatigue comes from all the extra work your heart is doing.  This is just one example.  I am most familiar with this possible mechanism, because I think this is what is happening with me.  There might be other mechanisms and processes that can lead to the same end result.  The severity of symptoms depends on exactly what in your body is malfunctioning.  There are several different malfunctions that can lead to the same end result, so it is all highly individual.

I've read that in some cases the nervous system doesn't make the veins contract to raise BP and the heart beats faster to compensate. Maybe that's an oversimplification. I know my feet have been colder and sometimes my hands as well. 

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@JimL - cold hands and feet usually point to constricted blood vessels rather than dilated blood vessels. Blood pooling on the other hand is caused by excessive dilation of the blood vessels. Both mechanisms can cause symptoms of orthostatic intolerance or POTS. This can often be the determining factor in suspecting hyperadrenergic POTS vs other types of POTS. 

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8 hours ago, Pistol said:

@Potsies - you do not have to have a change in BP to have POTS. Actually they say an increase in HR of 30 bpm WITHOUT a drop in BP is indicative of POTS. Also symptoms longer than 6 months. The fatigue is also the symptom I mind most. And only 30% of people with POTS actually faint. So - yes, it sounds like POTS. Have you had a TTT? --  Most likely you are not that symptomatic because you are still so young and your body has been able to compensate. Have you been increasing salt and fluid intake? Compression stockings? If you have mild symptoms this could help. Good that you are able to walk - exercise is important! But do not overdo it - too much can add to the fatigue. Do you sleep well? Have they checked your Vit D levels? Often in the winter this can be low in many people and can cause fatigue. I was severely deficient in both Vit D and B12 and my symptoms improved with supplementation. I get B12 shots every month. Be sure if they want you to supplement Vit D they order a loading dose - 50,000 units weekly for a few weeks then 2000 units daily. If you do not start with the high dose your levels will not come up. 

I haven't had a TTT done yet, but am on the waiting list for one (the waiting list is very long as there's only one in my province, I'm from Canada). I have tried increasing salt and water and it only helps a tiny bit, but I have chronic gastritis which salt irritates. I do have medical grade 30-40 hmmg thigh high stockings and I don't really notice any difference with them. My vitamin D level is perfect, on the high-normal side and I take sublingual methyl B12 supplements. 

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5 hours ago, Lily said:

You and I are in the same boat: relatively mild symptoms that worse off people might be glad to experience.  As I understand, the heart beats faster because otherwise the blood wouldn't get around well enough.  Here is an example:  perhaps your veins are too stretchy, allowing blood to pool in your feet instead of circulating.  Your body increases release of norepinepherine in an attempt to get the veins to constrict.  The NE also raises your heart rate.  Your end result is an elevated heart rate.  The fatigue comes from all the extra work your heart is doing.  This is just one example.  I am most familiar with this possible mechanism, because I think this is what is happening with me.  There might be other mechanisms and processes that can lead to the same end result.  The severity of symptoms depends on exactly what in your body is malfunctioning.  There are several different malfunctions that can lead to the same end result, so it is all highly individual.

I was thinking maybe stretchy veins, as I do have hypermobile joints and soft stretchy skin, as seen in EDS, but I don't have any of the joint pains or dislocations associated with it, and my POTS symptoms came about quite suddenly just last year. Are you on any medications? What do you fins helps you most with your symptoms?

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5 hours ago, Pistol said:

@JimL - cold hands and feet usually point to constricted blood vessels rather than dilated blood vessels. Blood pooling on the other hand is caused by excessive dilation of the blood vessels. Both mechanisms can cause symptoms of orthostatic intolerance or POTS. This can often be the determining factor in suspecting hyperadrenergic POTS vs other types of POTS. 

Ok. My PCP sent me to a vascular guy who is doing the whole workup. I had a duplex ultrasound of my abdominal aorta and carotids this week and next week I have bilateral venous LE and IVC filter check. The week after temporal arteries. He noticed my feet were cold and that I didn't have a strong pulse in my feet. I don't know if that's normal for POTS. Unfortunately, my appointment with the POTS neurologist isn't for a couple months. Just trying to learn how to cope with this. 

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On 3/15/2019 at 2:25 PM, Potsies said:

I was thinking maybe stretchy veins, as I do have hypermobile joints and soft stretchy skin, as seen in EDS, but I don't have any of the joint pains or dislocations associated with it, and my POTS symptoms came about quite suddenly just last year. Are you on any medications? What do you fins helps you most with your symptoms?

My POTS doctor is uncertain if I have EDS or not.  I have many signs of it, but not badly enough to make a diagnosis obvious.  I suppose I should see someone about that.  My NE was 1962 ng/dL (or whatever the units were), so I am on Clonidine to keep a lid on the sympathetic nervous system.  Also Florinef (+ salt and water) because my symptoms are also indicative of low blood volume, according to my doctor.  He likes to diagnose based on symptoms instead of running all the tests (other than the TTT).  I also have compression hose, but I hate to wear them.  I feel fine as long as I am walking quickly.  Also sitting with my feet up.  Those help the most.  Medications do not help as much as I would like them to, and I have ADHD problems with maintaining a steady exercise program.  I suppose that would probably help a great deal, too.

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