POTS question

[sgreen54]

Hello everyone,

forgive me if a question similar to this has already been posted.  I tried searching and could not find one similar.  I am a 25 year old female who is 6 feet tall and about 280 pounds so I am overweight and I don't know how that should affect my heart rate.  But I have been having symptoms of POTS or some kind of dysautonomia so I have tried the Poor Mans Tilt Table Test.  My resting heart rate goes down into the 70s (though it does seem to fluctuate quite a bit).  Upon standing it can immediately shoot up into the 120s or even 130s depending on how symptomatic I am (this causes the typical dizziness, lightheadedness, feeling like blacking out, hearing and sight both go a bit.  Never actually passed out).  But after a bit (less than a minute) it will start to lower down, then go up, then down, then up, and finally eventually rest somewhere in the 100s or 110s.  It fluctuates quite a bit.  Is this normal for POTS?  I wasn't sure because a few places I saw said the 30 bpm had to be sustained for a while.   I should also mention that upon standing completely still for a few minutes blood starts to pool in my feet and lower legs and they can turn totally purple.  This only takes a couple minutes to happen but I don't think that's normal.  I DO have a tilt table test scheduled but I want to make sure my cardiologist (who I've never seen in person - argh.  referred by my GP) knows what to look for because I'm reading on here they need to do the tist slightly differently/longer depending on what they are looking for.

I do not yet have a blood pressure cuff so unfortunately I do not know what my blood pressure does while doing this.  I will try to get one and give it a whirl.  I do NOT have a high resting blood pressure. Whenever I go to the doctor it is usually the normal 120/80.

Any thoughts, insights, and suggestions would be most welcome.

Thank you!

Edited April 5, 2017 by sgreen54
Left out the blood pooling part

[angelloz]

I think the best first step will be the tilt table. I have had two tilt table tests and they were a bit different in their approach. You should get some good information!

[sgreen54]

6 minutes ago, angelloz said:

I think the best first step will be the tilt table. I have had two tilt table tests and they were a bit different in their approach. You should get some good information!

Thanks!  I have a couple questions if you don't mind.  Do my symptoms match POTS or is the fact that it fluctuates so much seem like something else?  And any idea how my weight may play a roll in this?  

[Morrolan53]

Mine tends to fluctuate as well (16yo female, average weight). And it varies hugely from day to day, some days I can stand for twenty minutes (moving around a lot) without any real symptoms, but others I feel shaky as soon as I stand and have to spend my day hopping form sitting to sitting. For you, it could be POTS, it could be something else; it varies so much person to person that it's hard to tell. Try to rule out other possibilities and get your doctor to set you up with a tilt table test. Good luck  and keep us posted!

[BuffRockChick]

I don't have POTS dx yet, I'm new to the forum.  I was trying to figure out the source of my fatigue and stumbled across POTS.  It fits ALL my weird seemingly unrelated symptoms.  I have a doctor appointment in a couple weeks to start towards official diagnosis.

My pattern is lying down resting heart rate 55 - 65 (sitting is more like 65 - 80).  When I stand up, my heart rate goes up.  Usually about 30 bpm in the first 2 minutes, slight increase after 5 minutes, and by 10 minutes it's at 120 - 147 (new personal record this morning, LOL). I have to lie down immediately.  The one time I didn't I walked away and blacked out about 6 steps later.  That was a first.  I have lost vision once before that, and collapse/fall often enough.

If I fidget my heart rate doesn't increase as much.  If I stand up to walk it seems to be more stable.  I usually don't have difficulty walking, although adding movement, heat or hills will have my heart rate up.

I thought I was having orthstatic hypotension and but had a normal blood pressure check between sitting and standing at doctor office last year.  It was after standing for only 1 minute though.

I'm curious to see what comes of this!

[yogini]

I think being overweight could affect BP or HR in either direction.  It's also normal for heart rate to constantly be fluctuating. It does not stay a flat number. I would compare your average sitting HR to your average standing HR.  Sit for 10 mins.  If the average sitting rate is about 30 bpm less than the average standing rate after you stand for 10 mins, it indicates POTS.  You are right that your legs turning purple isn't normal. 

[sgreen54]

2 minutes ago, yogini said:

I think being overweight could affect BP or HR in either direction.  It's also normal for heart rate to constantly be fluctuating. It does not stay a flat number. I would compare your average sitting HR to your average standing HR.  Sit for 10 mins.  If the average sitting rate is about 30 bpm less than the average standing rate after you stand for 10 mins, it indicates POTS.  You are right that your legs turning purple isn't normal. 

I thought resting heart rate (laying down) vs standing is what you use to measure to see if it's a 30 bpm difference?  I haven't seen anywhere that says resting is sitting.  Am I wrong?

[yogini]

You are right, it should be from lying to standing. 

[haugr]

Welcome to the forum sgreen54.    There are a ton of different underlying causes that present themselves with similar pathologies, so my opinion is that the 30 bpm number is more of a guideline than a hard rule.  Both myself and my sister's hr fluctuates like that too upon standing.

[Morrolan53]

I've spoken with one of the doctors (Dr. Schondorf) involved in setting the 30bpm for determining if someone has POTS. He said it was a general guideline, that it was the usual difference he saw in people with POTS, but there are people with POTS who have much greater and much smaller variations. The important thing is that there is a noticeable and abnormal change in heart rate on standing.

[sgreen54]

1 minute ago, Morrolan53 said:

I've spoken with one of the doctors (Dr. Schondorf) involved in setting the 30bpm for determining if someone has POTS. He said it was a general guideline, that it was the usual difference he saw in people with POTS, but there are people with POTS who have much greater and much smaller variations. The important thing is that there is a noticeable and abnormal change in heart rate on standing.

Oh, thanks!  What is a normal person's heart rate rise when going from resting/laying down to standing?

[BuffRockChick]

I read today normal is <15 bpm change.  I don't recall the source, but it was an article in a medical journal.

[sgreen54]

3 minutes ago, BuffRockChick said:

I read today normal is <15 bpm change.  I don't recall the source, but it was an article in a medical journal.

Thank you!

[kalamazoo]

Look up erythromlelgia if you're getting red/purple feet. I too have this, i also have hyper pots and insulin resistance and pcos. All affect blood pressure and heart rate because of hormonal imbalances and the struggle on the endocrine system. Everyone on this site has such a wide array of symptoms but yours sound familiar. The thing with pots symptoms is they can mimic a ton of other issues so make sure you get a thorough work up. With my hyper pots i have 120/85 resting bp. And very high bp doing things along with heart rate and pooling in ny extremeties as well.

[angelloz]

sgreen54,  I am not sure how weight might be a factor. In my case I am underweight and constantly struggling to gain.  You would think this was a good thing..lol.  Also the sitiing standing , length of time is variable for me and can fluctuate day to day.  Some doctors have rechecking my standing heart rate after 5 minutes or ten minutes, it is odd how different doctors seem to have different ideas about this. The tilt table should give them and you some great insight. For one thing, the tilt table is done as is stated , at a tilt, not totally upright. There is a reason for this I am told. All the best to you on your journey to getting some answers.

[sgreen54]

6 hours ago, kalamazoo said:

Look up erythromlelgia if you're getting red/purple feet. I too have this, i also have hyper pots and insulin resistance and pcos. All affect blood pressure and heart rate because of hormonal imbalances and the struggle on the endocrine system. Everyone on this site has such a wide array of symptoms but yours sound familiar. The thing with pots symptoms is they can mimic a ton of other issues so make sure you get a thorough work up. With my hyper pots i have 120/85 resting bp. And very high bp doing things along with heart rate and pooling in ny extremeties as well.

Hmm...  I also have PCOS.  I am not diabetic. it being overweight tells me I am probably insulin resistant as well.  I don't believe I have erythromelgia because I dont have the pain that goes with that.  And i only have the blood pooling after standing for a couple minutes.  I'll mention ot to the Dr. though just in case.  Thanks for your comment!  

[sgreen54]

Well, I had the test today and it's weird - I wasn't symptomatic in any way and even with the adrenaline shot not much happened.  the problem was I was anxious so my lying down heart rate was around 100.  usually it's 70 so I was very nervous.  standing it was around 115.  my blood pressure didn't change much.  But based on my symptoms that I told him about my cardiologist thinks it's orthostatic hypotension.  But the strange thing is when I'm at home and my heart rate is high (the other day standing it was 160!) my blood pressure is STILL normal.  so I'm having a hard time feeling like the diagnosis was accurate given that I wasn't symptomatic and he didn't see anything.  It was a guess diagnosis really.  I'm feeling frustrated.