Pounding heart and/or slight tachycardia while swallowing food or liquid

[Amyschi]

Hello.  I am hoping someone may be able to relate to this, as its a new symptom to me and a little frightening.  I have been in somewhat of a flare, i.e. increased orthostatic symptoms and weakness, but suddenly started having pounding heart whenever I drink anything, sometimes with eating.  It is definitely related to contact with the esophagus.  I do have rather severe acid reflux, so don't  know if it could be related to this, but you would think that would happen after the food has reached the stomach and refluxx ensues.   It seems to disappear as soon as the substance passes if I pause in between or stop.   Very strange.  Just cannot find anything on this.   It will be interesting to see if it clears if the flare improves, hopefully.  Thank you.

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[Sea otter]

@Amyschi similar happened to me. I noticed when I was in flare. I also have acid reflux lately and started to take therapy for reflux. Also when I have bad flare even slightest movement is making my heart to pound more. 

[Sarah Tee]

I’m not sure whether it is relevant or not, but the vagus nerve is involved in swallowing.

[MikeO]

7 hours ago, Sarah Tee said:

I’m not sure whether it is relevant or not, but the vagus nerve is involved in swallowing.

bet that is why some foods and meds get suck in on the right side of my throat from time to time. just happens to be the same side i had my carotid endarterectomy on.

[Amyschi]

On 12/14/2023 at 9:34 AM, Sea otter said:

@Amyschi similar happened to me. I noticed when I was in flare. I also have acid reflux lately and started to take therapy for reflux. Also when I have bad flare even slightest movement is making my heart to pound more. 

Thanks much - reassuring to know at least someone has noticed this, and you're right, could have to do with the vagus nerve and/or close proximity of the heart to the esophagus (with the dysautonomia, it seems it doesn't take much to set things of;f; as you were saying, even the slightest movement - I notice that too).  May I ask what acid blocker you are on?  Does it bother you?  I am super med-sensitive and everything makes me dizzy and increases the tachycardia.   Desparately need something besides antacids, but don't want to add more side effects problems.

[Sea otter]

@Amyschi I am on pantoprazole, from last week. I am also sensitive to medications and have side effects but for now everything is ok and it helps with acid reflux. I hope you will find something that will ease your acid reflux. 

[Amyschi]

On 12/18/2023 at 3:07 AM, Sea otter said:

@Amyschi I am on pantoprazole, from last week. I am also sensitive to medications and have side effects but for now everything is ok and it helps with acid reflux. I hope you will find something that will ease your acid reflux. 

So glad you are tolerating it so far.  Can I ask what side effects, as I am super-sensitive too.  Also, your dosage and how long it was prescribed for?  Thanks so much for response.

[Sea otter]

6 minutes ago, Amyschi said:

So glad you are tolerating it so far.  Can I ask what side effects, as I am super-sensitive too.  Also, your dosage and how long it was prescribed for?  Thanks so much for response.

I don't have side effects with this medication so far. I meant I had side effects with all the medications for POTS until now. I am taking 20 mg once a day. For how long, don't know, we'll see what will doctor say. 

[Amyschi]

3 minutes ago, Sea otter said:

I don't have side effects with this medication so far. I meant I had side effects with all the medications for POTS until now. I am taking 20 mg once a day. For how long, don't know, we'll see what will doctor say. 

Thanks for clarifying, and continued good luck with it!

[Pistol]

@Amyschi I have HPOTS with severe GI issues and have been on Pantoprazole for many years. Despite being hyper medication sensitive I tolerate it very well and never had noticeable side effects. 

[Amyschi]

1 hour ago, Pistol said:

@Amyschi I have HPOTS with severe GI issues and have been on Pantoprazole for many years. Despite being hyper medication sensitive I tolerate it very well and never had noticeable side effects. 

Oh, thank you so much for taking the time to post this.  It encourages me to try it.  Along side the Hyperpots, I also have a longstanding chronic dizziness condition, and anything I have tried, even Pepcid, has effected me, but all one can do is try I guess.  I have been trying to check patient review forums to see which one seems to be easiest to take (which is probably a mistake!), so this input is very helpful.  Can I ask what your issues are like?  My main issue is burning in the stomach, most pronounced after eating, but I have also been shown on EGD several years ago to have GERD and esophagitis (so how it relates to  the POTS, I don't know, but do know that when the POTS is active, the stomach is much worse).  Just wonder how it compares to your symptoms,  Do you have gastroparesis?  Hope not.  (I think you might have said earlier, but sorry, I don't remember).  Luckily, I don't seem to have that, just always upset.  Think I may post a topic to see who is on stomach med and how it effects them!  Thanks again.

[Pistol]

@Amyschi My symptoms are similar to yours - I have severe GERD that once caused esophagitis and ulcers. This was treated by meds and maintained with the pantoprazole. I also have IBS-D and off-and-on gastroparesis ( this sounds strange but this is what my GI specialist told me ). 

My symptoms are directly related to the HPOTS and the constant stress caused by the high norepinephrine levels is to blame. Other than meds I manage it by rest ( I am disabled ), eating all throughout the day rather than meals and dietary restrictions ( low carb, high protein, avoiding acids and eating cooked or steamed veggies. )

[Amyschi]

2 hours ago, Pistol said:

@Amyschi My symptoms are similar to yours - I have severe GERD that once caused esophagitis and ulcers. This was treated by meds and maintained with the pantoprazole. I also have IBS-D and off-and-on gastroparesis ( this sounds strange but this is what my GI specialist told me ). 

My symptoms are directly related to the HPOTS and the constant stress caused by the high norepinephrine levels is to blame. Other than meds I manage it by rest ( I am disabled ), eating all throughout the day rather than meals and dietary restrictions ( low carb, high protein, avoiding acids and eating cooked or steamed veggies. )

We do sound alike, Pistol.  But you have so many GI issues, so sorry.  Thanks so much for the good tips.  Can you refresh me as to what meds you are on for the hyperPOTS?  Also, going through a really hard period, and wonder if you get symptoms like this:  waking up every early morning with internal shaking, tachycardia, and extreme anxiety?  That then sets up the whole morning.  It is like you can actually feel the norepinephrine flowing through?  I also have chills and tingling/paresthesias all over, which I suspect is SFN, but have not had the biopsy for this (diagnosed with polyneuropathy).  This symptom complex is so disturbing and strange, just wondered if you (or anyone else who might read!) has experienced..  Also wondering what your levels have been, and if you ever retest it?  You are always so much help to all of us, and we appreciate. 

[Pistol]

22 hours ago, Amyschi said:

Can you refresh me as to what meds you are on for the hyperPOTS?

I have tried many, many meds over the years but what works for me is Carvelidol ( beta blocker ) and Diltiazem ( calcium channel blocker ) and Lorazepam as needed. 

 

22 hours ago, Amyschi said:

waking up every early morning with internal shaking, tachycardia, and extreme anxiety? 

Yes, I used to get this but since I am disabled and can live within my limitations every day ( and am stabilized on meds ) I rarely have to endure this most scary symptom.  I used to get this symptom a lot when overstimulated, and if I was not able to lie down immediately ( like at work or in a store etc ) it would lead to seizures and syncope. Often! That is why I am disabled. 

I was told that this happens when there is a sudden surge of norepinephrine and it is similar to going into shock. When we wake up there is a dump of norepinephrine that occurs with everyone, but with HPOTS there is too much being dumped. 

22 hours ago, Amyschi said:

Also wondering what your levels have been, and if you ever retest it?

Back in 2012 I was tested during my first visit to the autonomic specialist and my levels were over 600 at rest and close to 1000 active. 

[Amyschi]

Pistol, thanks for sharing your meds.  I am so sorry those spells lead to such extreme symptoms, causing your disability - they are indeed unsettling, but it is of some relief to have a possible explanation.   My GP is starting me on a low dose clonidine, as I don't tolerate meds at all, so we'll see (I need to find a new neurologst I know, and it would be better for them to prescribe, but we'll see).   But will keep your combination of meds in mind for reference.  Yes, your levels definitely indicate the hyperPOTS.  Mine was normal standing, but 953 standing.   Not over 1000, but I guess meets the criteria.  I went many years without noticing this hyperstimulation, very odd, but it is a bear to deal with in additional to the regular orthostatic intolerance, GI symptoms, etc.   Take care.

[Amyschi]

Well, its one of those days obviously... meant "normal SITTING", but I'm sure that was obvious!