Scout

I don't have bradycardia all the time, but I do regularly have times when my HR is lower than 60. Ironically, it's usually when my BP is surging. 

One of my biggest symptoms, other than the labile BP, is erratic heart rate. So, I do get tachycardia, and I have that most days, but it's often a very irregular heart rate. Fast. Very fast. Then slow. Then fast. Etc. Bouncing around like that. 

I wonder if your sister is, as mentioned above, experiencing another kind of Dysautonomia as well, or something relating to her baroreflexes? 

My BP is going very high at times. 

Do you get shaky when it happens? Or feel fairly similar to "normal"? 

And, I agree with @Pistol and @MomtoGiuliana.

Fluids, salt, rest, and a medication to lower your sympathetic response. Different meds work for different people. It seems to be a balancing act. 

Sorry about that folks. 

The images were working on desktop when I posted it, but now, don't seem to be. Odd.

I don't have the energy to fix it today I'm afraid. Feeling quite unwell, so I'll just type the readings:

169/78 

117/103

79/55

These were all taken minutes apart. 

These are some BP readings from a day ago, minutes apart. It bounces around like this all the time. 

Does anyone else's readings look like this?

I can't wait to see my specialist soon. 

@Sushi I am so pleased to hear you're doing well! That is such good news!

Sending lots of well wishes for your healing! 

Keep us posted 😊

Then I'd make sure you mention the side effects you are experiencing to your neurologist.

Take care. 

Like I said, I would be pretty careful with it and run it by a doctor. 

You need to monitor that sort of thing. It's not really something to mess with. 

Around 205 or 210bpm, when in SVT.

I felt very dizzy, then realised my HR was that high when I checked my pulse. Immediately sat down. Things were fading to black, but I managed to stay conscious. Called the ambulance. It remained that high for a while, then dropped to 180bpm, then to 160bpm. 

My chest hurt like crazy. My heart felt like it was humming, not beating. 

To be honest, doctors weren't that concerned. I was 21 at the time. They seemed to shrug it off and say "don't worry about it, you're young".

Since then, I've had it go close to 200bpm, and have had doctors act concerned, and be far more helpful. 

I'll be sure to update this thread after I see both my cardiologist and autonomic specialist, hopefully with some answers that may help others, too, in similar situations.

😊

I get the low pulse pressure a lot. 

Just earlier, my pulse pressure was one of the lowest I have ever seen it — 105/95. Just two minutes later, my diastolic dropped low. 

It sure is a mystery, but as others have said, it is most likely caused by low blood volume, setting off our dysautonomia. 

As @Pistol has suggested, IV fluids could really help here. 

I am going to be asking my specialist about IV fluids as soon as I see her next. Have an upcoming appointment.

Really sorry you're also going through this. Hopefully we can both find answers. 

I'd be careful.

A lot of supplements aren't regulated at all, so safety is really questionable. 

From the research I have read, and stories, adverse reactions are common.

Erratic pulse unfortunately comes with the territory of dysautonomia. Mine can be fine, then suddenly 140bpm, then back down to 60bpm, or sometimes, too, bradycardia. 

I'm really sorry you're experiencing this. 

Do you have a good cardiologist you can consult?

Thanks for your reply, @p8d.

My specialist is an autonomic specialist, indeed. She's head of the neuro department at a big hospital here, which has a special autonomic clinic, and has people travel to see her from all over the country. 

I don't respond well to beta-blockers,  so far, sadly. Metoprolol seemed to make me worse, and also gave me horrible insomnia and nightmares. 

My cardiologist said we'd discuss Ivabradine next appointment. I see him in three weeks. That was the earliest I could get in to see him. 

If I don't take the Ivabradine, I'll be trying Calcium Channel Blockers, which I am told will help with the BP spikes too. Fingers crossed, at least! I tend to get a lot of side effects from meds which is irritating. Very sensitive to them. The BP surges are a big concern for me. 

Interestingly, fluids drop my BP. I tend to get less "surges" when I am drinking a lot of fluid, though still get some. I make myself drink a litre in the morning, to start off the day.

I'm interested in your experience with clonidine. Did you immediately get high BP when taking it, or only get the rebound hypertension when withdrawing? 

Does anyone know much about baroreflex failure? 

It's come onto my radar a few times, especially most recently, when I saw a photocopy of the notes my autonomic specialist wrote in my file. 

She wrote that it appears I have either "autonomic dysreflexia", or, baroreflex failure. 

I wish she'd said that to me at our appointment. All she said was I have an "unusual type of POTS" and highly unstable BP/HR. 

As far as I was aware, autonomic dysreflexia more commonly occurs in people with spinal injuries?

I know baroreflex failure on the other hand can occur for many different reasons, often due to damage of the vagal nerve, or carotid arteries. Sometimes with an unknown cause. 

Just wondering if anyone had any experience with this? 

Cheers! 

I have the opposite. My platelets sometimes come back low. 

It's a mystery to me why this happens. They said the same to me — if it keeps coming back low they'll send me to a specialist. For now, we just keep an eye on it. It sometimes comes back normal, then low, then normal, etc.

Hope you find an answer!

Have you had your renin / aldosterone levels checked?

Low potassium can be caused by excess aldosterone, I believe. 

6 hours ago, WinterSown said:

This sounds very familiar, I went through something like this last year. My EP slowly took me off of most of my heart medicines. I was getting stronger because of exercise and walking and so I didn't need such heavy doses. This may be a sign that you are getting better--talk to your cardiologist and see if you can cut some meds. 

I'm not on any meds at present. 

I'd like to say that I'm getting stronger, but I don't think that's it sadly. My BP is rising to not normal levels during the slightly exercise. 

15 hours ago, Pistol said:

Hello @Scout - this is odd, do you normally have bradycardia? An increase in BP is expected with exercise but I am not so sure about the bradycardia. Here is a link I found about this:

www.emergencymedicalparamedic.com/why-does-bradycardia-cause-hypertension/

It explains that hypertension CAN cause bradycardia and vice-versa. Also - I am wondering if you take any medications that could lower your HR? I used to get episodic bradycardia on Metoprolol which improved when I switched to another BB. Make sure you record all these findings and your symptoms - it will be very important for the cardiologist next month. Best of luck - keep us posted!!!!

Thanks so much for the link Pistol. 

I am not on metoprolol anymore (it made me worse). Keeping a close record of my symptoms though for sure. I just had a bad episode of bradycardia, very high BP, and irregular heartbeat. Taking notes to ensure I bring this all up with the cardiologist. 

12 hours ago, yogini said:

It is normal for blood pressure to increase during exercise.   It seems your BP is increasing within the normal range for exercise.

https://www.healthline.com/health/blood-pressure-after-exercise

 If your blood pressure increases, it enables the heart to slow down.  That is why so many POTS patients benefit from treatments to increase blood pressure (or blood volume).   

It is always good to get it checked out by your dr when you are having new symptoms but these symptoms you are having may not be dangerous.

Indeed, it's normal to a degree. But it's not normal for it to shoot up dramatically like mine does.

Systolic BP rises quite a bit during exercise, and that's fine. But diastolic BP is meant to remain largely unchanged, or even drop slightly, during exercise. Mine skyrockets into sometimes hypertensive crisis levels.

Today, for example, after a lukewarm bath, I blacked out with severely high BP and slow, irregular heart rate. This isn't good or normal. 

I find that eating lots of veggies, proteins like lean meat, eggs, yoghurt etc, and complex carbs, works well for me. With that said, I eat a fairly varied diet and it doesn't feel monotonous at all. 

Lots of fluid and salt. 

No caffeine (this triggers me quite badly) and minimal refined sugar. 

I was vegetarian for several years, but that made me worse actually. 

I am so sorry you are going through this. I just want you to know that I 110% believe what you are going through and I am so sorry that doctors are so dismissive. You deserve better!

What you're experiencing is not easy, and I relate a lot to the POTS flares / crashes, and feeling at a loss. 

I definitely advise you to see someone who has a lot of expertise in dysautonomia.  I hear many good things about the Mayo clinic.  In order to improve, you definitely need a specialist who knows a lot about the autonomic nervous system, and relevant conditions. 

I really hope you're able to see a specialist who can help you improve! Sending love and well wishes. 

I've been having episodes of slow heart rate. Especially when exercising (I only do very mild exercise). 

About half an hour ago, I tried to use my bike pedals — the ones you use sitting down (can't think of the proper name) — and was going a very, very slow pace. Immediately, I started to feel dizzy. My BP when checked was 160/95, heart rate 43. 

As soon as I stopped and lay down, it returned to normal, BP 100/65 or so. Pulse normal. 

Does anyone have any idea what could be causing this only to happen during exercise, even very mild exercise. It's scaring me, to be honest, and I am worried there's something wrong with my arteries (seeing cardiologist in one month). 

The slightest bit of exercise makes this happen.  The low heart rate paired with the BP spikes is getting odder and odder. 

I have HyperPOTS but have found salt doesn't make my BP go up anymore than it would normally go up due to the autonomic dysfunction, if that makes sense? 

Mostly, salt helps keep my BP a bit more stable and less erratic. 

My specialist did say to obviously keep an eye on BP readings, but did stress that salt and fluids were very important.  My BP is usually on the low side of normal, or a bit low, but still I have spikes. At the end of the day, the spikes seem to have nothing to do with salt intake. I can have a high salt intake and my BP is still often low. 

I get headaches when my BP is low, and also when it spikes.

At the moment my BP is low (90/55) and my head is throbbing. Not much helps me, other than water and salt / trying to increase blood volume.

I'm sorry I can't be more help, but you have my support and well wishes! 

Indeed, thank you for sharing this info.

Personally I find my smart phone to have far more positives than negatives, (such as social outlets, keeping me in contact with friends around the globe), but I definitely find minimising use of it near bedtime to be beneficial. Helps sleep! 

I also find that not reading the news helps. There's also apps which can filter out the sad news stories, so you just see the positive ones. That has helped my mental health. 

People need to prioritise their health and do what's right for them, so I am glad this has helped you.