VVS dx, I think it might be POTS...

[JuliettOscar]

First, I just want to say, this is a great forum! I've been reading and learning so much here. 

I was recently diagnosed with VVS based off of my own standing tests & data I brought in when I went to see the cardiologist (he said a TTT wasn't even necessary because of it). I recorded my heart rate while standing for 10 minutes, and took BP every minute. To me, based on what I have read, it seems like it is POTS. Cardio says VVS (I've never fainted or felt like I was going to, just extreme discomfort, needing to sit, out of breath, nausea w/narrow pulse pressure, etc). He also said it doesn't really matter anyway because it's all treated the same. Is that true? Is there any benefit to knowing precisely what the issue is? If there's the slightest benefit, such as having a better idea of what medication to start with, I'm going to insist on actual testing. I'm not too thrilled at the idea of starting any medication and want as much info as possible beforehand.  Are there any tests I should insist on other than the TTT?

I'll save the lengthy description and just attach a couple of examples of my charted HR & BP (lying to standing to lying, BP gaps I believe are due to narrow pulse pressure, machine quits giving readings).  And I'll add one of my HR readings for the full day (no exercise, just my stand test in the AM and chores around the house, this one shows 130s, but I've seen 170s). Hopefully the images aren't too huge! Also wanted to note, these are after upping sodium & water to about 4000mg/3L a day (I haven't noticed much improvement).

For those that tried salt/water/exercise first, was it helpful? How long until you saw improvement? If I could just see improvement in fatigue and migraines, I'd be thrilled.

[Pistol]

Hello - welcome! I am glad you are already finding this forum useful! --- I have both NCS (same as VVS) and POTS. Yes - you do have to at least pre-syncopal for a diagnosis of NCS. In my case my very first TTT was ordered due to frequent fainting with recorded HR and BP elevation. My HR on the TTT went up briefly then suddenly plummeted to 50 and I passed out. At that time the cardiologist recommended compression garment and increasing fluid and salt intake and put me on metoprolol for tachycardia. The POTS diagnosis took longer to find since I had to go to a autonomic specialist. --- From what I see your HR goes up when your BP drops - that is normal. And the HR comes right down after in initial spike - that is also good. POTS means your HR goes up above 30 BPM within 10 minutes of standing WITHOUT a drop in BP and stays elevated. --- In NCS your HR drops and your BP drops and you pass out or have presyncopal symptoms, which you appear to have. --- POTS and NCS are both dysautonomia but they do not necessarily get treated the same. It's just that most doctors THINK they do. In mild cases the treatment can be the same but often POTS does not respond to the same treatment as NCS. If you have not passed out but experience those symptoms you probably should start with the recommendations of your doctor and see how you do. Drink fluids, load salt and wear compression hose - these are the most effective treatments other than medication. Be well!

[JuliettOscar]

3 hours ago, Pistol said:

 --- From what I see your HR goes up when your BP drops - that is normal. And the HR comes right down after in initial spike - that is also good. POTS means your HR goes up above 30 BPM within 10 minutes of standing WITHOUT a drop in BP and stays elevated. --- In NCS your HR drops and your BP drops and you pass out or have presyncopal symptoms, which you appear to have. --- 

2

I just wanted to clarify, in case the images weren't clear, my HR upon standing jumps and continues to climb for the full 10 minutes (to about 135 in the first image and 160 in the second) and goes back to just under my normal resting rate only when I lie down. With the third image, it doesn't remain elevated throughout the day because I'm always sitting down  Start a load of laundry (HR is 120-130), sit down (drops to 60), sweep, sit down, take a shower, sit down, walk upstairs (HR gets up to 170s), definitely sit down, etc. Its exhausting .

So, I've read conflicting info on whether or not BP can drop with POTS. I've seen descriptions of POTS without a mention of BP, and a few places, as you've described (HR increase WITHOUT BP drop). I read in an article by Dr. Rowe that to be NMH, it must drop by 25. Mine has never dropped that much (that I've recorded, I don't think it does). It's all very confusing. 

Living in Las Vegas, I'm dreading having to try compression hose. I'll give it a shot though before medication. The water & salt doesn't seem to have any effect. 

[Pistol]

Hi again - if there is any questioning of POTS vs NCS your doc should probably order a TTT. Compression garments are very helpful in dysautonomia causing a drop in BP caused by pooling in the lower limbs. Are you doing counter-maneuvers or exercises aimed at increasing you tolerance to orthostatic stress? ( For example: standing up leaning against a wall and slowly sliding your back up and down the wall until you develop symptoms and then stop? Or standing while holding onto a sturdy surface and slowly moving from your tiptoes to the heel of you feet repeatedly until you develop symptoms and then stop? ) These are exercises I was taught by a physical therapist  to do to increase my orthostatic endurance.They are very effective in both POTS as well as NCS. If nothing else helps and you do not respond to meds ( or prefer not to try them ) then avoiding prolonged standing as well as getting up slowly from sitting/lying to standing may improve your symptoms. 

[JuliettOscar]

Thanks for the tips on the exercises. My doc gave me a couple of maneuvers, but only to relieve pooling, not for orthostatic endurance. 

I'm still curious about the official POTS criteria and whether or not a mild drop in BP excludes POTS. I'd also like to read up more on the different tests that can go along with a TTT, so if anyone has personal experience to share or resources on the internet, I'd love to read both (or links to past discussions here!). I found Rowe's summary of OI & its treatment very helpful with medications often used.  I'm just trying to be prepared to have an actual discussion with the cardiologist at my appt in a couple weeks, rather than try to remember everything a doc says and research when I get home  

[yogini]

My understanding is that if you have a sustained drop in blood pressure you have orthostatic hypotension (which also has a bunch of other names).  If you have a sustained increase in HR of 30+ you have POTS.  You can have one or both of these.  Syncope or presyncope isn’t needed.  People on this forum disagree but there is a very large overlap on treatment of this family of conditions, so I personally wouldnt dispute that part of your doctors advice. It’s a lot of trial and error to find the right treatment.  

[Pistol]

I think the best thing is to get all of the info you have gathered so far and find out what specific questions you have and write them down, ask your doc and then go from there. --- BTW: syncope or presyncope IS required for the diagnosis of NCS - that is why it is called neuro-cardiogenic SYNCOPE.