POTS

[Patrick]

Hi,

I haven't been formally diagnosed with POTS yet.  I have an appointment set up with my Cardiologist, but I'm not sure he knows anything about it.  I purchased an Apple watch a couple of months ago to keep track of my heart rate.  Recently, I decided to check my rate sitting vs standing.   Of the 6 tests (using my watch) I've done they've all had a large increase within 3 or 4 minutes of standing (for example 48bpm sitting to 118 stand, or 60 sitting to 120 standing).   My blood pressure seems to stay fairly constant (around 120/85).  Upon researching this on the web, I discovered POTs and that's why I'm here.

A little background.  I'm a 61 year old male.  About 5 years ago, I started feeling lightheaded, brain fog, fatigued, slurring words, poor balance, sexual disfunction etc.  I've been searching for an answer since.   Some days I feel fairly good, but most days I'm lightheaded/foggish almost all day to the point where I can't concentrate and it makes it hard to do things like driving etc.  Sometimes, I can barely walk and have zero energy.

My question is does POTs cause these symptoms on a ongoing basis?   Obviously, I feel kind of bad when I first stand up (racing heart, near faint), but that goes away fairly quickly.  But, I continue to feel "out of it" even when sitting doing nothing.  Is it possible that POTS causes all of these symptoms?

Thank you

 

 

 

 

[Sushi]

49 minutes ago, Patrick said:

Hi,

I haven't been formally diagnosed with POTS yet.  I have an appointment set up with my Cardiologist, but I'm not sure he knows anything about it.  I purchased an Apple watch a couple of months ago to keep track of my heart rate.  Recently, I decided to check my rate sitting vs standing.   Of the 6 tests (using my watch) I've done they've all had a large increase within 3 or 4 minutes of standing (for example 48bpm sitting to 118 stand, or 60 sitting to 120 standing).   My blood pressure seems to stay fairly constant (around 120/85).  Upon researching this on the web, I discovered POTs and that's why I'm here....

My question is does POTs cause these symptoms on a ongoing basis?   Obviously, I feel kind of bad when I first stand up (racing heart, near faint), but that goes away fairly quickly.  But, I continue to feel "out of it" even when sitting doing nothing.  Is it possible that POTS causes all of these symptoms?

Hi Patrick, and welcome—I think you found the right place on the web.

A couple of points: yes POTS can cause all those symptoms. There are medications that can help, though the majority of cardiologists won’t be knowledgeable about them. There are autonomic specialists who are though and you will find many of them listed on the main website associated with this forum.

While the Apple Watch is marvelous technology, it records your pulse optically so it is not as accurate as either an arm cuff blood pressure machine or a heart rate monitor with a chest strap. Consider getting an arm cuff (not wrist cuff) BP monitor with a memory so that you can show the readings to your cardiologist. If he/she suggests medications, you might want to check them out here with a search or by adding to this thread. Good luck, we all understand what it is like to live with dysautonomia (POTS is a form of dysautonomia).

[Patrick]

Thank you for the reply.  I do have a good BP monitor and used it at the same time as my Apple watch.   They both showed the same BPM.   Also, I have a oximeter that I use that is within one or two beats of my watch.

I recently did a 48 holter monitor.  I've asked my cardiologist to look at the actual test data and see if he sees short term spikes on that.  I'm not sure he still has the actual test or not.  He was looking for AFib, so he might not have noticed sudden increases.

Thank you for you response!   I'm going to an MS specialist today to try and rule that out.  I've had doctors say anything from visual vertigo to possible MSA (Multiple Systems Atrophy) - I don't want that one!

 

 

[Pistol]

 

16 hours ago, Patrick said:

Obviously, I feel kind of bad when I first stand up (racing heart, near faint), but that goes away fairly quickly.  But, I continue to feel "out of it" even when sitting doing nothing.  Is it possible that POTS causes all of these symptoms?

@Patrick - welcome! I wanted to ask you - does your HR STAY elevated like that when your symptoms improve or does it go back down? In POTS the HR usually stays elevated once upright.  The feeling of nearly fainting could be presyncope and due to the poor attempt of your body to adjust to the upright posture. If your HR goes back down after standing up it possibly could be neurocardiogenic syncope, which also is a form of dysautonomia. I have both POTS and NCS, so I know how they feel like. 

I completely agree with @Sushi that - if your current specialists are not familiar with POTS - you may want to look for an autonomic specialist. Hopefully the MS specialist will be able to give you some answers. Best of luck!

[Patrick]

4 hours ago, Pistol said:

 

@Patrick - welcome! I wanted to ask you - does your HR STAY elevated like that when your symptoms improve or does it go back down? In POTS the HR usually stays elevated once upright.  The feeling of nearly fainting could be presyncope and due to the poor attempt of your body to adjust to the upright posture. If your HR goes back down after standing up it possibly could be neurocardiogenic syncope, which also is a form of dysautonomia. I have both POTS and NCS, so I know how they feel like. 

I completely agree with @Sushi that - if your current specialists are not familiar with POTS - you may want to look for an autonomic specialist. Hopefully the MS specialist will be able to give you some answers. Best of luck!

Yes, it tends to go back down.   For example, this morning my HR went from 50 to 118 upon standing (over about 5 minutes).  A few minutes later it was back down in the 70's.  I had presyncope for sure.  One thing I've noticed is if I stand still upon standing, the feeling of presyncope is much worse than if I'd just started walking around.  Standing in one place makes it worse.  

The MS specialist was great!  She spent over an hour with me.  My other doctors (PCP, Cardiologist, Neurologists) usually were kicking me out of the office in mid-sentence after 15 minutes, Ha!  Anyway, she doesn't think I have MS but is willing to explore some more things, so I'm going to do some MRI's and other tests.  She was familiar with POTS and said she'd do some vitals lying and standing next time.  I asked her if there were any autonomic specialist nearby and she said she didn't know of any in my state (Oklahoma).  The list on this website confirms that.  Looks like a road trip to Dallas is in my future.

My main question is:  since the actual presyncope feeling only lasts a few minutes, why do I have lightheadedness/brain fog the rest of the time?  Is this normal for people with POTS?

[Pistol]

@Patrick - yes, POTS does cause brain fog.  You might want to look under our information resources section - there are articles about POTS, what it is, how it is diagnosed etc. Commonly it is diagnosed with a Tilt table study. You can find more information here:

 

[Patrick]

Thanks Pistol for the information.   Based on what you informed me about the HR increased having to be sustained, I guess I don't have POTS.  It always goes back down.  My BP doesn't change much at all upon standing.

So, I guess I might have NCS.   I also tend to have an abnormally low heart rate (45-55 range) which my cardiologist says isn't heart related (after several tests).  I also have blockage of carotid arteries (50%-70%) and coronary artery disease which probably doesn't help things.   My uneducated guess is my brain doesn't get enough oxygen - which might account for some of my symptoms (mainly lightheadedness, concentration problems, brain fog).

I continue on my never-ending quest to figure out what in the heck is wrong with me.  Ugh.

[Sushi]

2 hours ago, Patrick said:

My BP doesn't change much at all upon standing.

So, I guess I might have NCS.

I have something similar but I have never actually fainted--though I think I would if I didn't get the pre-syncope warning and sit down fast--often in what others might consider a very inappropriate place! You say that your BP doesn't change much on standing, but the question would be whether it drops with prolonged standing. Mine doesn't start dropping right on standing but after 10 minutes--whew! The tilt table test I had included two phases of standing. The first was about 20 minutes, then other autonomic tests were done while I was lying, then a longer test. After about 30 minutes my BP and HR went totally bananas and I stopped the test when my BP was 88 over 80. The autonomic nervous system can do surprising things when stressed. 

[Patrick]

1 hour ago, Sushi said:

I have something similar but I have never actually fainted--though I think I would if I didn't get the pre-syncope warning and sit down fast--often in what others might consider a very inappropriate place! You say that your BP doesn't change much on standing, but the question would be whether it drops with prolonged standing. Mine doesn't start dropping right on standing but after 10 minutes--whew! The tilt table test I had included two phases of standing. The first was about 20 minutes, then other autonomic tests were done while I was lying, then a longer test. After about 30 minutes my BP and HR went totally bananas and I stopped the test when my BP was 88 over 80. The autonomic nervous system can do surprising things when stressed. 

Thanks for the response.  I haven't tried doing my BP after standing up long.  I'll do that see what it does.

[Pistol]

@Patrick - you say you have carotid blockage? That can give you brain fog and also dizziness upon standing due to the poor circulation to the brain. 

[Patrick]

26 minutes ago, Pistol said:

@Patrick - you say you have carotid blockage? That can give you brain fog and also dizziness upon standing due to the poor circulation to the brain. 

You would think so, right?  But, none of my doctors think so.  They say it's not severe enough to cause symptoms.  Personally, I think it's part of the problem, but not all of it.  I've got a number of other symptoms, poor balance, gait problems, sexual dysfunction, speech problems, fatigue, etc.  Hopefully, my new neurologist can help me figure this out.  Thanks for responding.

[Patrick]

Thought I'd give an update after my cardiologist appointment.  As luck would have it, at the doctors office my heart rate went from 58 sitting to 59 standing.  Kind of like taking your car into the shop and the problem doesn't repeat.  Ugh!   Of course, I was only sitting for a few minutes and they took my pulse immediately upon standing (one time).  Oh well, he didn't act like he knew anything about POTS or other autonomic problems anyway.  He said to drink more water and sent me on my way.  Of course when I got home pulse went from 55 to 123 very first time.  My wife says I can cure my problem by not looking at my pulse rate.  LOL!

[Pistol]

@Patrick - apparently whoever did the vital signs at the cardiologist office does not know how to properly take orthostatic vitals.  Here is a video from " The dysautonomia project " website that shows you exactly how to do it. Personally I would do this test several times on different days and take these results either to your PCP or your cardiologist and request a referral to an autonomic specialist ( since you say they are not familiar with dysautonomia ).

Look under our physician tab on the home page of this site - there are many physicians educated in dysautonomia listed.  Depending on where you live it may require you to travel out of state.  I hope very much you will find an educated physician soon!

[Patrick]

Thanks Pistol for that video.   My cardiologist didn't do anything close to that, but then again he only has 15 minute appointment allotments, so it would be hard to do.  I have a neurologist appointment today and she told me last time that she was going to do a workup of my vitals that sounded a lot like what was done on this video.  We'll see.

There are no autonomic specialists in my state, so I'll have to go out of state.  I plan on asking my neurologist if she knows of anybody and if she could refer me.

Yesterday, I had a "spell" where my heart rate went from 60 - 125.  That one was a doozy.  I can always tell when it's happening because I get an instant headache, start breathing heavy, my throat feels like it's closing up, and I feel faint (but have never fainted).  But, what's weird is it doesn't happen every time I stand up.  Yesterday, for example, it only happened 2 or 3 times.  I wish I could figure out what triggers this.

Thanks again for responding.

 

[Patrick]

I guess I need to take a copy of the video to all of my doctors.  At my neurologists visit today, they did it the same way my cardiologist did it - lay down for 15 seconds, take pulse, sit up for 10 seconds, take pulse, stand up for 10 seconds take pulse.  I told the nurse that it always takes at least a minute or two for my heart rate to go up.  Also, I need to be sitting down for longer than a few seconds.  She didn't seem to care.   The doctor told me she didn't know anybody that does a TTT in my town, but if my vitals test showed something, she would look into it.  I guess that won't be happening.

Oh well, I did find out that I have a totally unrelated problem I didn't know I even had.  The spine MRI showed bulging disc in my neck.  The neurologist wants me to see a surgeon to see if they think I need to do anything about it.  That's all I need - another problem.  LOL!

[Ags]

Oh, no, Patrick,

The POTS specialist I see makes sure I'm sitting for at least 3 minutes, then standing for that long before taking the measurements. I hope you will consider taking that road trip to Dallas to the POTS/dysautonomia specialist. It's worth the trip. It took me 15 years to get diagnosed, due to doctors dismissing me not feeling well (I had never heard of POTS when I was diagnosed, but had many symptoms since a severe bout with flu 15 years prior). Please keep investigating this, so you can find a diagnosis and the help you need.

[Patrick]

Thank you Ags!   I've started looking into what it will take to see one of the Dallas specialists.  It's obvious that my Neurologist and Cardiologist aren't familiar with autonomic dysfunction.  I've had 3 episodes today where heart rate went from high 50's to 120 upon standing.  Mine always comes back down quickly (within 10 minutes), so I guess I don't have actual POTS, but something similar.   Pistol above suggested I might have neurocardiogenic syncope.  That's what I hope to find out.  All I know is I have brain fog almost every day (among other symptoms) and it makes my life not much fun.  I have to think these large spikes in heart rate are contributing to my symptoms.

[Ags]

Patrick, I just joined today, and wanted to assure you that all of the symptoms you mention in your original post can be POTS-related. POTS has given me "brain fog" severe enough to make me slur my words (POTS meds have helped - they can only treat the symptoms of POTS, but they help, nonetheless). I had severe balance/gait issues before my POTS meds (I was fighting faintness/dizziness with every step). I gave up getting answers two years after POTS symptoms first started (16 years ago), due to dismissive doctors, but 4 years ago, the symptoms got far worse, and I just couldn't bear the brain fog that limited so much (I'm still battling some of that, but it's improving). If it wasn't for a caring rheumatologist who suspected POTS (I did not have any issue she could treat), I would still be struggling - she sent me to a POTS/dysautonomia specialist (took 9 1/2 months to get in, 2 1/2 more months to get tested). I said this in another post, but please consider traveling to Dallas to get tested and get answers and treatment. I travel much less far (an hour to an hour and a half each way) to get to the POTS clinic, but POTS/dysautonomia specialists are few and far between, even in the bustling Chicagoland area. P.S. I hope you'll have your wife read replies - nobody can easily see POTS symptoms, so it's easy for others to dismiss them. I felt horrible all day every day by the time I got diagnosed.

[Patrick]

Ags, thanks again for the reply.  It sounds like you found someone that can really help.  I'm hopeful I can too.  If I could just get rid of the daily brain fog, I would feel so much better.

I've had an initial contact with one of the Dallas offices.  Looks like their first appointments available are in May - which isn't too bad.  I need to see if they will at least do a TTT on the first visit and not just want to do a 20 minute "get to know you" interview.   I'll be spending the night every time I have a visit, so I want to get as much done as possible.

In the meantime, I've got a sleep study scheduled for April.  I've got a cognitive test scheduled today with my neurologist.  She want's to see if she can pinpoint which part of my brain might be having problems.  I might try another round of ENT tests to once again rule out inner ear problems.  If most/all of my problems are autonomic, then these tests probably won't show anything, but I'm trying to more or less rule out things.  The neurologist has already ruled out MS, MSA, Parkinsons, and  Alzheimers.  My brain MRI came back fairly clean.  As I mentioned above, I found a new ailment with my neck MRI and I'm going to a specialist to figure out what to do (if anything).  It's possible my bulging disks in my neck might be causing my gait and balance issues, but who knows.

Thanks.