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POTS or...something else?


pun_Krawk

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Hi all,
 
I was hoping for some clarification about POTS and its symptoms. I feel like I meet the medical qualifications, but I've never had lightheadedness or fainting symptoms. The reason I'm coming to all of you for help is that I saw my primary care doctor on Saturday, and she hadn't heard of POTS. She halfheartedly put me through the standing test, but dismissed me, because I don't feel lightheaded when standing.
 
I have been dealing with a wide array of health problems since I was about 12 years old. I have always believed that many of my symptoms are related to the digestive system and IBS. That said, I was diagnosed with MCAS two years ago. I was doing some research and found an article saying those with mast cell issues might also be dealing with POTS. Many of the symptoms of POTS fit, but then many do not. I've tested myself a number of times going from lying down to standing. Always, my pulse rate jumps to 30+ and remains at that level longer than 10 minutes. Usually, the supine pulse is 50-60 bpm, and my standing pulse is 90-115 bpm. An example might be the following:
 
Lying down
115/71 - 59 bpm
 
Standing
2 mins - 106/78 - 109
5 mins - 107/78 - 102
10 mins - 132/77 - 94
 
I know that my pulse rate and blood pressure used to be much higher. I've been on a restricted diet for 5 years, and that has helped bring my resting pulse rate much lower. In fact, a very restricted diet is the only thing that has allowed me to function close to "normal". I do have difficulty standing for longer periods of time. Eventually, I start feeling very uncomfortable and my body temperature rises. I also have to shift weight between legs, as I cannot stand comfortably with both legs locked, distributing the weight.
 
Could this all still be POTS, or something else entirely? There's much more to talk about and many more symptoms, but I don't want to overwhelm you with a huge post. Two things that have helped immensely is consuming smaller meals and drinking a ton of water during a day.
 
Thank you! I appreciate any input.
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Hey pun, other members can chime in here, but I believe that individuals with MCAS can also be suffering from POTS. Have you had a tilt table test done? It might be worth you asking your doctor about it; it is the one way that POTS is definitively diagnosed and from the heart rate changes you took it looks as if you would qualify.

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5 hours ago, statesof said:

Hey pun, other members can chime in here, but I believe that individuals with MCAS can also be suffering from POTS. Have you had a tilt table test done? It might be worth you asking your doctor about it; it is the one way that POTS is definitively diagnosed and from the heart rate changes you took it looks as if you would qualify.

Thanks for the reply. I wanted to get the tilt table test done, but my insurance is not the best. There's a university neurology lab here that can do the test, but I need a referral first. My PCP wouldn't even give me a simple referral. :\ 

I'm going to try and find a practitioner that can perform it directly, but it's not the easiest with my insurance.

Edit: So I just called, and I have to get a referral to see a specialist. My only alternative is to find another PCP who can refer me. I guess that's why I'm reaching out to this forum. I'd like to hear if it is possible that I have this syndrome given my symptoms

Edited by pun_Krawk
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POTS is defined by excessive heart rate upon upright posture--specifically an increase of 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing.  The heart rate changes you measured appear to be consistent with this.  That is frustrating that your current PCP won't consider this.  You might consider bringing them the data you collected on your heart rate changes and literature from a valid source of information about POTS, however I know not all physicians are open to being educated by their patients.  You may have to try to see another PCP first if you need a referral.

 

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2 hours ago, MomtoGiuliana said:

POTS is defined by excessive heart rate upon upright posture--specifically an increase of 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing.  The heart rate changes you measured appear to be consistent with this.  That is frustrating that your current PCP won't consider this.  You might consider bringing them the data you collected on your heart rate changes and literature from a valid source of information about POTS, however I know not all physicians are open to being educated by their patients.  You may have to try to see another PCP first if you need a referral.

 

What do you think about not having symptoms of being lightheaded or fainting? I see it listed over and over again by people with POTS or in medical articles. Are there people with POTS that never have these problems?

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A doctor can really figure out best whether your particular numbers meet the definition of POTS. Even though your number is a 30 point increase, the HR of 94 is within the range of normal (60-100bpm).   I think most of us that get diagnosed wind up with  high HRs or low BPs which are outside the normal range.

You have been testing from lying to standing.  Does your HR still go up 30 points sitting to standing?

I am not sure that everyone with MCAS has dysautonomia.  Most people with dysautonomia don't faint - but I do think lightheadedness and dizziness are very common symptoms.  What other symptoms of POTS do you have?

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Thanks all for your responses!

First, @MomtoGiuliana, I completely understand you can't diagnose me. I just wanted to know if I'm within the range of symptoms that a person with POTS might have.

@yogini Usually, I use an oximeter to measure heart rate, so I guess I can't assume it's accurate. From lying down to standing, my heart rate always jumps 30+ for 10 minutes or more. I've tested probably 10 times over the past week. That said, usually the heart rate never usually doesn't get above 105 on the oximeter. Only about half the time do I go above 100.

I just tested sitting to standing, and I got the following results with a blood pressure machine:

Sitting:
BP: 104/66 - HR: 76

Standing
2 min - BP:122/81 - HR: 106
5 min - BP: 114/81 - HR: 109
10 min - BP: 117/74 - HR: 114

I decided to lie down right after this. After resting some minutes, my HR returned to normal:

Lying Down:
BP: 107/61 - HR : 53


Lastly, from the symptoms listed on the Dysautonomia International site, I suffer from the following:

  • fatigue
  • headaches (and migraines)
  • heart palpitations 
  • diminished concentration
  • coldness in the extremities
  • Patients can develop a reddish purple color in the legs upon standing, believed to be caused by blood pooling or poor circulation. (The occurs after about 10 minutes of standing)

Additionally:

  • terrible bloating
  • constipation
  • slow stomach emptying (lab tested to confirm this)
  • slow gastric motility (lab tested to confirm this)
  • general weakness
  • dark circles under eyes
  • foggy headedness
  • chronic nasal congestion (I have to use a steroid decongestant spray to breath clearly)
  • night sweats (fairly rarely, but it happens)
  • fight or flight response always on
  • pain/discomfort in lower right back (almost always present)

 

 

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FWIW, I think that there are so many different presentations of dysautonomia (a term that covers several different syndromes), that seeing a doctor that specializes in dysautonomia (I might look for a specialized neurologist) seems like it might help you sort out what this is.  There are people that I've seen receive a diagnosis of generalized dysautonomia because they displayed autonomic dysfunction that didn't fit neatly into one of the specific syndromes. I believe it would take a specialist to sort that out. For as many symptoms as we can relate to with each other, none of us has exactly the same presentation because the dysfunction of the autonomic system can affect most major organ systems to one degree or another.

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8 hours ago, Katybug said:

FWIW, I think that there are so many different presentations of dysautonomia (a term that covers several different syndromes), that seeing a doctor that specializes in dysautonomia (I might look for a specialized neurologist) seems like it might help you sort out what this is.  There are people that I've seen receive a diagnosis of generalized dysautonomia because they displayed autonomic dysfunction that didn't fit neatly into one of the specific syndromes. I believe it would take a specialist to sort that out. For as many symptoms as we can relate to with each other, none of us has exactly the same presentation because the dysfunction of the autonomic system can affect most major organ systems to one degree or another.

Thanks, I appreciate the advice, and I understand. I've been trying to solve my health problems for years now. One thing I've learned is that almost all conditions affect people in different ways, so not all symptoms match up. Unfortunately, seeing a specialist is not easily done with my insurance. I would have to change my PCP, convince this new doctor to do the stand up test for POTS, who would then write a referral in order to do a tilt table lab test, so that I can finally see a specialist. Kind of a circus.

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