What Did Your Heartrate Do

[Annamaus1977]

Hi at all!

I got a question:

How high or low is your heartrate, when your upright?

My heartrate is just 80 today, but I'm feeling bad like every day...

Best wishes,

Andrea.

[BeforeTheMorning]

For me it varies a lot throughout the day and from day to day. I think generally when I get out of bed in the morning my heart rate goes up to between 130 and 140, and will go higher if I stand still for too long. I'm not sure how high it goes later in the day but it's definitely lower, unless I stand still for too long. Some days it doesn't go so high and I still feel awful. Have you tried checking your blood pressure when you're feeling bad but your heart rate is normal?

[momandmore]

105. It took a while to even be able to feel a pulse so I could take it, but then I could feel it get stronger. I'd be curious to stand for longer and see what happens, but it's a busy morning. At least I get to drink my tea and read about how people are doing here.

[Annamaus1977]

Hi,

Yes of course, my bp is normal... or the same like every vorher day.

But you're right, now my heartrate is 130bpm, it seems like it's very different. The systolic bp is very low when I'm upright 95/78 pulse 128.

Anyone else here with such strange bp?

Best wishes,

Andrea.

[Annamaus1977]

Hi momandmore,

thanks for your reply.

Do you do all at home in the sit?

I feel all days also unwell, when I sit. Have a painful neck, headaches and weak arms, when I sit. :'-(

Best wishes,

Andrea.

[gjensen]

Your standing BP and HR is typical of POTS. The last numbers you recorded is my typical (of late). I can be a little better or worse. My systolic will drop, and often my diastolic will be the same or raise, narrowing my pulse pressure. When I am well hydrated (super hydrated with Gatorade and salt and water), my PP is not as narrow, and I feel a little better.

[Annamaus1977]

Thanks gjensen for your reply.

I have a question, how you give that salt you need to your body? I mean wich salt you take and can I make it into water or something? Oh its difficult for me, to ask with the right words... I hope you understand what I mean.

Best wishes,

Andrea.

[artluvr09]

I've been checking mine everyday this week as well. I have noticed lately which is new that my heartrate when I wake up is in the 100-105. Now this morning it was okay it was 88. My lowest recorded on a halter monitor was when I was sleeping it went down to 41.

[artluvr09]

also for salt you can use salt tablets. Or what I do I try to drink two gatorades every day and add extra salt to your food.

[MomtoGiuliana]

Hi Andrea--my hr would go as high as 140 beats per minute standing (from 80, sitting). It would climb and climb until I had to sit down or lie down. That was when my symptoms were most severe. On more typical days as I started to improve my hr would go to perhaps 100-110 on standing. I actually also started to have episodes where my heart rate would go way down on standing, but would bounce back within several seconds.

The definition of POTS is a change in heart rate from prone to standing of 30 beats per minute, or more, on standing. However, for me anyway, some days I might not meet this strict definition, yet still have other POTS symptoms, dizziness, weakness, etc.

I used to take salt tablets. Otherwise, I would just use a lot of salt on my food (which I didn't always enjoy) or make a salty drink (eg add salt to Gatorade/re-hydration drink).

[Becia]

Laying down:88. Sitting with feet down:122. Standing to transfer to my other wheelchair:156 and quickly going up.

The more triggered I am, by noises, physical exhaustion, or have sat up too long, the higher it likes to go. Like Friday, I had a doctors appointment a couple hours away, and travel is always hard on me because of the feet down for too long issues, so by the time I got back from that appointment, my heart rate was 173 sitting up with feet down, and laying down it was still 130s. It stayed high for the most part Saturday because I was out with friends trying to run errands, ate a large lunch (well, large for me, I was sick as a dog throwing up because I only used one of my stomach medications, instead of all three, but the other two make me a zombie), and I needed to be flat more, instead of upright.

As for salt, I try to add what I can to food, drink Gatorade (or pedialyte), whatever my body can tolerate. I've been having major stomach issues, so I'm not sure except on IV fluid days how much I'm really getting in me. We sadly discovered early on that too much salt in my stomach make the stomach issues worse, so I do what I can.

[Tuesday]

When I'm resting on the couch, my HR goes as low as 38. Sitting working at the computer my HR is in the mid 40's. When I stand up to walk across the room, it goes up as high as 120.

I'm on Florinef now, which has helped my BP but my HR is still kind of wonky.

[gjensen]

I think the buffered salt tablets are easiest on the stomach.

I salt the food in my meals. I try to eat a serving of potato chips mid day. I drink 32-48oz of Gatorade per day and at least as much water. I add a gram of salt to water 3-4 times per day. It is a lot of salt, but it does help. The Mayo Clinic recommends up to 10 grams per day. Some Americans consume half that much anyways. I have read that others recommend adding 3 - 5 grams per day to our diet.

I do not know if it is true, but I seam to get more effect when drinking a large quantity on an empty stomach. I have speculated that we process and digest the fluids differently, perhaps more slowly, when we are digesting food.

I, and some others, like to consume a qty. of fluids at once, sipping in between. I do not get as much benefit if I do not drink a lot fast. I drink 24 oz (12oz of Gatorade/12oz water) to start the day before I even get out of bed.

It requires qty. and consistency to do any real good. The worst thing we can do is allow ourselves to get dehydrated. If you are disciplined about this, you may see some improvement. It is a pain to do, but it is worth it.

Everyone finds what works best for them.

[gjensen]

I meant to add that when I first became sick, my standing HR could be 160-200 bpm. Many times just walking across the house would get me to 170.

Try not to get stressed. Stress makes this worse. It is difficult to avoid, particularly when it is new.

[Katybug]

My heart rate is generally between 60-80 laying down and can be anywhere from 90-145 standing (or even sitting sometimes.) I also have blood pressure issues. It can be low (my lowest was 65/42) but normally is closer to 90/60. It can also be 120/80. I have also experienced narrow pulse pressures in the last 6 months (pulse pressure is the difference between the systolic and diastolic numbers) so I won sometimes have a blood pressure like 89/79. 10 points in between these numbers is very low and the doctor said it would result in me getting very little blood and oxygen to my brain which creates symptoms. My POTS doctor has also said that a lot of research shows that symptoms in POTS patients do not necessarily have a direct relationship to their heart rate all the time....meaning there may be times when your heart rate seems normal but you are still experiencing some symptoms.

Regarding salt, one way many POTS patients help their body retain the salt they eat or drink is by taking a prescription drug called fludrocortisone. This is a mineral corticosteroid that helps your body retain salt and therefore fluid.

[momandmore]

Hi again, Andrea. It's not afternoon and I'm really the same around 105. I've had to visit the hospital to see my grandmother and though I did some walking mostly I was sitting. Most of the time, I try to do a lot of sitting and then lie down when I really need it. I am worse if I have to stand up a lot or change position often, like when cleaning, etc. After a while, I will get breathless and feel dizzy.

Please remember that I am much, much better than I have been, so if you're in a flare be careful not to compare yourself to me as I am now. Just believe you will be able to feel better, too, someday.

I have gone months when to feel okay I had to lie down most of the time. I have not had a bad flare in a couple of years, and before that I had flares that seemed to last a long time with shorter acute periods. For many years, beside taking walks in my neighborhood, I didn't do any exercise because I was so afraid of my high heart rate getting any higher. Then, last year, I made a New Year's resolution to try to bring down my heart rate through regular exercise. This was before I was officially diagnosed but when I suspected I might have POTS. I started exercising almost everyday and little by little, I started to feel stronger and less fragile. Of course, I was already somewhat improved; otherwise I couldn't have started to exercise in the first place. Then, halfway through the year, due to low blood pressure and muscle pain, I made a point of drinking lots of fluids and increasing salt and potassium I got even better. And I'm 45 and sometimes POTS can get better with age as well. It has been a looooooooong journey for me. My first cardiology visit for tachycardia was in 2001. And I had irregular rhythms some years before that. My heart rate is still higher than most people's but it's low for me.

I still have to be careful in managing the things I need to do and take it easy, and I still don't feel like I can live as a normal person because I always have to plan when I'm going to be able to eat and lie down. If I don't keep things like eating and sleeping very regular, I can crash very easily. But I try to remember that I have made a lot of progress. It is wonderful to get through the day without the feeling that I might collapse. You will get better, too. So try to do what you can and stay positive.

[momandmore]

Next day. Not first thing in the morning. Exercise, breakfast, warm shower, and feeling a little tachy and bit drained. I am at 135. I think I should like down a for a bit to see if I can re-boot.

[Annamaus1977]

Thank you all so, so much for your helpful replys!!!

Best wishes

Andrea

[smish]

I'm on Bisoprolol now so it's a lot lower (usually around 90-110 standing). Without Bisoprolol, it would probably average 120 standing and I'd start to notice it if it went over 130. Think when you live with POTS for a long time (especially without knowing about it) you do just get used to having a fast heart rate all the time. On my tilt test it went up to 160.

[TCP]

Hi Guys. Do you have tachycardia all of the time? My HR is around 85-100 when resting/sitting and then with standing and moving around it goes to 105-150+bpm.
Anyone else get this as it appears I am definitely NOT alone in this and yet my cardiologist is saying I do not have POTS as I was already tachycardic before I had the TTT.

[Goschi]

I had something similar in my worst flare - 95-100 HR when supine, 135-150 when upright/active. Even my 2 TTTs showed this pattern.

And as a consequence, I got the POTS diagnosis, as I fullfilled all criteria: HR increase of more than 30bpm and/or HR going over 120 when tilted upright.

As I see, you too fullfill all criteria - being already tachycardic when supine doesn't exclude POTS, this would be totally new Info for me...

I hope, you get another expert to look at your test results soon!

Best wishes!