Bounding pulse issue going on for years

[rupeydoo]

I've had an issue with a pounding heart/bounding pulse than has been going for a years which I can't find a solution to. It is 24/7 and there is an endless list of things that make it worse and barely anything that makes it better. As the symptoms are present 24/7 I am unable to get deep sleep. Every night I will sleep 8 hours but wake up and feel awful. I have had pretty much every test you would expect to in medicine and am perfectly healthy on paper. This includes ecg, holter, echocardiogram, cardiac mri, blood tests, barium swallow to check for hiatal hernia. I have spent years trying to find out what is going on with no success. The only things that helps it is to restrict calories. Most supplements and medications make it worse, including beta blockers and SSRIs etc. Has anyone had these symptoms or made any progress in finding out what's causing the issue?

[Angel]

Do you feel a heaviness in your body?

[rupeydoo]

3 minutes ago, Angel said:

Do you feel a heaviness in your body?

Today I have accidentally consumed something that has triggered it badly. It feels like I have lead in my arteries/veins, which is like a heaviness feeling yes.

[Angel]

I have this heavy feeling constantly 

[rupeydoo]

19 minutes ago, Angel said:

I have this heavy feeling constantly 

Do you have a bounding pulse 24/7?

[Angel]

It rests in the 80s/90s sometimes 100s, once standing it jumps to the 130s/140s

[rupeydoo]

A bounding pulse is one that is excessively strong, not talking about heart rate. My heart rate is around 50-55 resting.

[Angel]

Like where you can constantly feel it ?

[rupeydoo]

1 minute ago, Angel said:

Like where you can constantly feel it ?

Pretty much everywhere, but the really in the neck/head is where it's problematic. It is like my brain is getting pumelled. This is me in this video 

 

[MomtoGiuliana]

Welcome to the forum.  

That seems very uncomfortable and I am sorry you don't have answers.  It's reassuring you have had many tests to rule out serious problems.

There have been past discussions about bounding pulse however may not be what you are experiencing:

Bounding Pulse Everywhere? - Dysautonomia Discussion - Dysautonomia Information Network (DINET)

Bounding Pulse - Dysautonomia Discussion - Dysautonomia Information Network (DINET)

 

[RecipeForDisaster]

This is one of my most uncomfortable symptoms, which makes it hard to sleep at night. Beta blockers help, but not enough. IV fluids help the most. Anything being "off" makes it much worse - any kind of infection, lack of sleep, eating too much, etc.

[MTRJ75]

This is usually least concerning of the three types of palpitations I get (skipping and racing the other two). I still often feel it, but I'm not sure if it's either lessened or if over time I'm just paying less attention to it, but at it's worst, it made it very difficult to sleep or relax. 

I'm not sure if there was a specific medication that helped this particular symptom, but I've been doing best with cardiac symptoms with Ivabradine just 2.5mg twice per day (actually, my first dose is still propranolol 10 mg to keep slightly high blood pressure in check). The other med that I believe has helped me most overall is LDN, although I can't say how it would help palpitations. 

[rupeydoo]

10 hours ago, RecipeForDisaster said:

This is one of my most uncomfortable symptoms, which makes it hard to sleep at night. Beta blockers help, but not enough. IV fluids help the most. Anything being "off" makes it much worse - any kind of infection, lack of sleep, eating too much, etc.

If I avoid triggers I feel OK but not great. But most of the time it is triggered in one way or another, whether that be stress ,diet, exercise etc. It feels like I'm in a constant battle with my body and I am definitely losing.

[rupeydoo]

9 hours ago, MTRJ75 said:

This is usually least concerning of the three types of palpitations I get (skipping and racing the other two). I still often feel it, but I'm not sure if it's either lessened or if over time I'm just paying less attention to it, but at it's worst, it made it very difficult to sleep or relax. 

I'm not sure if there was a specific medication that helped this particular symptom, but I've been doing best with cardiac symptoms with Ivabradine just 2.5mg twice per day (actually, my first dose is still propranolol 10 mg to keep slightly high blood pressure in check). The other med that I believe has helped me most overall is LDN, although I can't say how it would help palpitations. 

Overall it feels stable but is incredibly disruptive. Anything that lowers my heart rate seems to make it worse. Unfortunately there don't really seem to be any medications designed to treat specifically. 

[RecipeForDisaster]

10 hours ago, MTRJ75 said:

This is usually least concerning of the three types of palpitations I get (skipping and racing the other two). I still often feel it, but I'm not sure if it's either lessened or if over time I'm just paying less attention to it, but at it's worst, it made it very difficult to sleep or relax. 

I'm not sure if there was a specific medication that helped this particular symptom, but I've been doing best with cardiac symptoms with Ivabradine just 2.5mg twice per day (actually, my first dose is still propranolol 10 mg to keep slightly high blood pressure in check). The other med that I believe has helped me most overall is LDN, although I can't say how it would help palpitations. 

I didn’t think ivabradine would help with pounding, just fast rate - if you think it helped, I may try it!

[Jason_X]

I was just going to make a similar post tonight when I saw yours.  My heart pounds if the resting rate is elevated the tiniest amount. I feel pounding if the resting rate is around 70 or above. The pounding is worse the higher the resting rate. Any sensation of pounding means I get severely disrupted sleep. I'm a VERY low anxiety person, so it's not anxiety.

I take Ivabradine (Corlanor) 7.5 mg twice daily, and Bystolic 1.25 mg twice a day (1/2 of a 2.5 mg tablet).  This helps quite a bit, but it still disrupts my sleep even my resting rate is even near 70. Tonight, I feel it pounding and it’s only 68. I tried propranolol a long time ago. It did a great job of slowing down my heart, but I felt terrible and it severely disrupted my sleep.  Bystolic seems to be the beta blocker with the least disruptive side effects.

I can drink a LOT of coffee without any significant heart rate elevation, but a single glass of wine (or beer) or a half tablet of Benadryl will shoot it up to 75-80 bpm and I’ll feel terrible and extremely fatigued, but I can’t sleep. Monosodium glutamate or carrageenan will set me off too.

I just checked my blood pressure and it’s slightly elevated (131/77).  I’m not sure, but I’m beginning to suspect that slightly elevated blood pressure may correlate with the sensation of pounding and insomnia. Cardiologists tends to say "it's only mildly elevated. It shouldn't be bothering you." I wonder if I should take some Benadryl  before my next visit.

 

Edit:  I also have stage one gastroparesis and a removed gall bladder.

[RecipeForDisaster]

6 hours ago, Jason_X said:

I was just going to make a similar post tonight when I saw yours.  My heart pounds if the resting rate is elevated the tiniest amount. I feel pounding if the resting rate is around 70 or above. The pounding is worse the higher the resting rate. Any sensation of pounding means I get severely disrupted sleep. I'm a VERY low anxiety person, so it's not anxiety.

I take Ivabradine (Corlanor) 7.5 mg twice daily, and Bystolic 1.25 mg twice a day (1/2 of a 2.5 mg tablet).  This helps quite a bit, but it still disrupts my sleep even my resting rate is even near 70. Tonight, I feel it pounding and it’s only 68. I tried propranolol a long time ago. It did a great job of slowing down my heart, but I felt terrible and it severely disrupted my sleep.  Bystolic seems to be the beta blocker with the least disruptive side effects.

I can drink a LOT of coffee without any significant heart rate elevation, but a single glass of wine (or beer) or a half tablet of Benadryl will shoot it up to 75-80 bpm and I’ll feel terrible and extremely fatigued, but I can’t sleep. Monosodium glutamate or carrageenan will set me off too.

I just checked my blood pressure and it’s slightly elevated (131/77).  I’m not sure, but I’m beginning to suspect that slightly elevated blood pressure may correlate with the sensation of pounding and insomnia. Cardiologists tends to say "it's only mildly elevated. It shouldn't be bothering you." I wonder if I should take some Benadryl  before my next visit.

 

Edit:  I also have stage one gastroparesis and a removed gall bladder.

I can’t drink any wine, even homemade/natural, and I don’t do well with one whole drink of any alcohol. I also feel worse if my HR is over 75-80 while resting. I’ve heard the same - "normal HRs go up to 90”. I ask if they can sleep when laying down with a HR of 90… also very low anxiety here. Interesting about the ivabradine - did it help the pounding directly, or just the rate? 

[Jason_X]

On 12/20/2022 at 5:55 AM, RecipeForDisaster said:

Interesting about the ivabradine - did it help the pounding directly, or just the rate? 

I don't know if it's direct or not. I just know that it the resting rate drops, the pounding and fatigue drops. I have extra Bystolic pills available for whenever I need something beyond the usual daily dose of Ivabradine + Bystolic.  I've tried lost of beta blockers and Bystolic. is the one that has the fewest side effects.

I've seen several cardiologists over the about 30 years who were clueless about this issue. Some of these were highly recommended cardiologist. When I finally found a cardiologist that knew what I was talking about, he said "Those cardiologists were plumbers. I'm an electrician." I think that the key to finding an effective cardiologist is to find one that is an electrophysiologist.

[RecipeForDisaster]

3 hours ago, Jason_X said:

I don't know if it's direct or not. I just know that it the resting rate drops, the pounding and fatigue drops. I have extra Bystolic pills available for whenever I need something beyond the usual daily dose of Ivabradine + Bystolic.  I've tried lost of beta blockers and Bystolic. is the one that has the fewest side effects.

I've seen several cardiologists over the about 30 years who were clueless about this issue. Some of these were highly recommended cardiologist. When I finally found a cardiologist that knew what I was talking about, he said "Those cardiologists were plumbers. I'm an electrician." I think that the key to finding an effective cardiologist is to find one that is an electrophysiologist.

I have 2 EPs, a couple of plumbers, and 6 total cardiologists. None have been too helpful on this… but one did recommend ivabradine. When it turned out to be too expensive, he put me on acebutolol during the day instead, and it helps somewhat. I still take metoprolol at night. The acebutolol has helped my PVCs a lot.

[MikeO]

22 hours ago, RecipeForDisaster said:

I have 2 EPs, a couple of plumbers, and 6 total cardiologists. None have been too helpful on this…

As of late i am using the term turn key cardiologists. I just recently fired my faint team for being inept IMO. These folks were not even close to what is going on with me.

[RecipeForDisaster]

8 minutes ago, MikeO said:

As of late i am using the term turn key cardiologists. I just recently fired my faint team for being inept IMO. These folks were not even close to what is going on with me.

They are all at least a little bit useful, or they’d be out. A lot of them write 1-2 Rxs or I like their hospital system or something. A few are really trying. I’m just a complicated mess, I know that.

[Jason_X]

On 12/22/2022 at 3:39 PM, RecipeForDisaster said:

... one did recommend ivabradine. When it turned out to be too expensive, he put me on acebutolol during the day instead, and it helps somewhat. I still take metoprolol at night. The acebutolol has helped my PVCs a lot.

I live in the US, but I get my Ivabradine and Bystolic (Nebivolol) from a pharmacy in Canada. It's about one-tenth the cost of what they charge in the US. My cardiologist will FAX the prescription to them.  My insurance refuses to pay for both Ivabradine and Bystolic unless I have actual heart failure.  Acebutolol made me incredibly tired and severely disrupted my sleep.

[RecipeForDisaster]

On 1/6/2023 at 10:15 PM, Jason_X said:

I live in the US, but I get my Ivabradine and Bystolic (Nebivolol) from a pharmacy in Canada. It's about one-tenth the cost of what they charge in the US. My cardiologist will FAX the prescription to them.  My insurance refuses to pay for both Ivabradine and Bystolic unless I have actual heart failure.  Acebutolol made me incredibly tired and severely disrupted my sleep.

I only take acebutolol in the morning, because it disrupted my sleep, too. I take metoprolol at night. I am still thinking about trying ivabradine, maybe through a Canadian pharmacy - though I think my doctor would have offered that if he deemed it an option. He knows I didn’t try it sheerly due to cost. I can’t use bystolic because of asthma.

[Jason_X]

On 1/8/2023 at 5:17 AM, RecipeForDisaster said:

I only take acebutolol in the morning, because it disrupted my sleep, too. I take metoprolol at night. I am still thinking about trying ivabradine, maybe through a Canadian pharmacy - though I think my doctor would have offered that if he deemed it an option. He knows I didn’t try it sheerly due to cost. I can’t use bystolic because of asthma.

Your doctor may be unfamiliar with using Canadian pharmacies.  It's completely legal and the doctor simply FAXes the prescription to them. I just happened to come across a doctor who does this so that his patients are able to afford Ivabradine. I later transferred to another doctor (for logistical reasons) and the new doctor was fine with the Canadian pharmacy.

Bystolic is supposed to be cardio selective at doses less than 10 mg/day and presumably would not be a significant risk to asthma. Both acebutolol  and metoprolol exhibit less selectivity at higher doses as well. 

[Pistol]

16 hours ago, Jason_X said:

Your doctor may be unfamiliar with using Canadian pharmacies. 

My autonomic specialist already knew that Modafinil was not approved for the use in POTS and supplied me with a list of canadian pharmacies where I could fax the prescription to!