I have developed an arythmia

[xebex]

Part of the reason I’m so sick at the moment is I have developed an arrhythmia on top of 150bmpm standing HR. I’ve been to ER twice and they can’t find anything (but have prescribed propanalolbut I keep trying to explain it only happens when I sleep. I haven’t slept for 2 weeks now because every time I fall the palpitations wake me up.

I’m too sick to see doctors - I need someone to do the tests on me at home. The hospital for heart testing is an hour away.

Doc thing I’m anxious and getting worked up abiut nothing but these palpitations are causing surges of nauseas and weakness and neck tightness. The only way to stop them is not sleep.

doc also doesn’t understand how debilitating ME is and how I can’t just go to hospital that involves atleast 2 hours of driving for some tests.

I’m in a living hell right now with now! My family is falling apart around me I’m too afraid to tell my mum that the state I’m in seems iripairable. I’m consi

I’m in Canada too week really to make any calls or do anything.
My husband is desperately trying to keep our daughter from self destructive g as she knows there something very very wrong.

what to do? help!

 

[Judee]

Small pinches of taurine used to help my Mom with her arrhythmia. She had doctor diagnosed arrhythmia after we detected it on her pulse ox that has a plethysmograph. We observed that within just a short time after taking taurine, her heart would stabilize.

This article talks about taurine and arginine. She didn't do as well on the arginine but I still thought I'd post it just in case it would help someone else. https://pubmed.ncbi.nlm.nih.gov/16797868/

For me the GHR supplement I take has arginine in it along with a bunch of other things and it is one of two things that seem to lower my heart rate nicely. The other thing that helps me with heart rate is oregano oil. (Not sure why it works for that though.)

Anyway, I hope you can find some relief. I wonder if you have tried the propanalol yet. Perhaps trying an 1/8 of a pill (if it's not timed release) before bed would help you. ??? Sue Jackson talks about using beta blockers on her website: https://livewithcfs.blogspot.com/2012/11/switching-to-long-acting-beta-blockers.html

 

[xebex]

Thank you I have used the proponalol but I think the prescription one doesn’t work properly the one I had In The hospital was better.
I’ll check out the links

and I might have some taurine I think - can I just take whole pill?

 

[vision blue]

That sucks. Interesting timing as ive just been commenting in two other threads that taking my heart ekg at home when i had symptoms showed loads of differences from when i do not.

@Judee i take taurine ever since i found at had been lising it in urinr and it gave ne a deviciency. I wonder id overall my heart id now better than it used to be because of that. Never made connection. But after a couple years looks like im bot absorbing it very well (also interesting on arginine. I cqnt indulge cause it triggers my recurrent virus. Do you think it's the NO thats produced? Watermelon juice then may be an alternative)

I know exactly what you meqn about being too sick to go get testing. Earlier today i emailed a doc i have, explained all the differences i see, enclosed my home EKGs, and asked if he has any way of getting past the gate keepers to have a telemed visit ir phone call as i am not well enought to go in person. And just tried to message an EP cardio where i fell off the books because of no in person visit after 3 years- just cant anymore)?

I too had middle of the night tachycardia. What kind of arythmmia have you developed? I had atrial twchycardia and kenr later thousands of premature beats in 24
hours .

But speaking of middle of night i also posted in another thread that when i had worn a 24 hour moniter they got the time stamp wrong and woukd not biolieve me. They thought irt was excercising too much during the day! When all i did was sleep then get woken up

Do you think its when you are dreaming? Having rem sleep/dreaming activates the sympathetic nervous system, sometimes dramatically

Fee things to put on your list to try at bedrime are melatonin, gaba, and gabapentin. And definitely make sure your magnesium supply is good

Sometimes you can also spot things in ekg that are also fixable like potassium too low and of course maje sure your thyroid hasnt recently gone berserk

Do you have pots? Other dysautonomia? Any infections lately? Increased sympathetic tone generally?

Youre in a sucky situation but theres no reason to think the nighttime episodes will last indefinitely. I was plagued every time i fell asleep. Was agonizing

Do you have a kardia mobile? Theyre useful little gadgetd especially the 6 lead one

 

[hapl808]

Do you have a kardia mobile? Theyre useful little gadgetd especially the 6 lead one

What do you look for in the 6 lead ECGs? I bought the Kardia and used it for a few weeks, but ended up returning it as I wasn't sure I was getting anything actionable. I did send it to my doctor, but no idea if they really looked at it (and they're more of an autoimmune specialist, not a cardiologist). I didn't use the Kardia option to have a cardiologist review the ECG - did you try that? I feel like 'regular' cardiologists are very dismissive of at-home devices that they didn't personally bestow upon you.

I feel like propranolol might've actually worsened my symptoms. I did overexert a week ago so maybe the current crash is from that, but this one has a more elevated HR than I usually see. Sitting in bed now and it's 110 when typing, where 'normal' for me would be 90-100 I think in this situation. I haven't taken the propranolol for a few days and I was only taking 10mg at a time, but I feel like my overall baseline is worse the past several days.

 

[xebex]

Thanks @visionblue I really don’t know what is what is going on. I have POTs but It’s never fit a proper description. I think im
More likely hyperadrenergic POTS but I have low/normal blood pressure it does rise a little when I stand I but doc said that was normal.

i was not given a label of the arrhythmia cos the very short 30seconds Heart trace they did showed nothing.

I haven’t been able to sleep for 2 weeks because the palpitations jump me awake every time I drift off - I think it’s as the heart rate slows.

I’m also getting this shaking/internal tremor kind of thing in my chest and I can’t tell if it’s some crazy heart thing or a tremor thing but it differnt from the obvious heart palps.

when I feel my pulse It feels steady but slightly elevated my Normal RHR is about 66 but now it’s about 78. Even when the weird tremor thing is happening my pulse feels normal - would that means it’s a tremor and not an arrhythmia?
I’ve done cheap home heart traces using iPhone camera light and they all say normal.
My chest feels like it’s shaking like if you shook things in a shoe box..

oh and the last two night I’ve woke up feel brutally nauseated and weak which goes away after having some orange juice blood sugar reading is normal.

 

[Gingergrrl]

@xebex I am so sorry to hear what you're going through and I experienced something very similar when my entire illness first started in Jan 2013. My very first symptom was that I'd be awakened all night every time that I fell asleep with a HR in the 160's and 170's.

It was jarring to be awoken from sleep like that and I had no idea what was wrong. I'd be gasping for air, unable to speak, and my arms & hands would be numb as the blood was trying to circulate to my heart & brain from the high level of tachycardia.

My ex-husband had a heart rate watch so we were able to capture the tachycardia while it was happening to show the cardiologist. But I had no idea at that time that I had developed POTS & Dysautonomia, let alone that the EBV virus had re-activated from when I'd had Mono in 2012, or the other autoimmune diseases that I'd develop later on.

I could type a novel but long story short (re: the tachycardia)... I tried several beta blockers in 2013 and the one that provided significant relief for me for the tachy was a low dose of Atenolol b/c it is cardio-selective (which Propranalol is not).

I was still very sick (at that time) and continued to get progressively worse until starting IVIG in 2016. But the Atenolol was very helpful for me for stopping the insane tachycardia. I think it is worth trying (vs. Propranolol) if your cardiologist or doctor agrees.

Edited to Add: I wanted to add that in my case, all of my tachy was sinus tachycardia and I did a ton of tests in 2013 to 2016. If you have a different arrhythmia (not sinus tachy), then I don't know if the beta blocker is the right med.

Also, do you have a doctor who could arrange for you to wear a "Zio Patch" (or similar cardiac event monitor) so that it can capture what is happening while you are sleeping?

 

[Judee]

can I just take whole pill?

Because of the ME mantra, "start low; go slow," I would see if you can just open the capsule and take out a small amount. That or cut off a piece if it's a tablet. Just to be on the safe side.

I feel like propranolol might've actually worsened my symptoms.

 

[LINE]

Magnesium. UltraMag is a good choice since it contains a wide spectrum of different forms of magnesium. @YippeeKi YOW !! has a post about her use of magnesium and cardio issues. Potassium may be worth looking at.

 

[xebex]

Magnesium. UltraMag is a good choice since it contains a wide spectrum of different forms of magnesium. @YippeeKi YOW !! has a post about her use of magnesium and cardio issues. Potassium may be worth looking at.

I feel like potassium may have actually
Been the culprit I took an oral rehydration solution for my POTs and everything spiralled out of control. My electrolyte levels are apparently fine now though. God I’m scared that’s I changed my heart rhythm somehow.

 

[vision blue]

@hapl808 quick reply for now as im getting increasingly dizzy today (i stopped the acyclovir abd its roaring beck)

You may be gettung reboind from the propanol If so should wear off in a few days i tbink

Totally agree. Good word for it- dismissive. They are dismissive of anything we initiate to try to help care for ourselves. Likely your docs ignored it

I did try the consult with the kardia folks for first time a week ago. Utter waste of 10 dollars. They if ored everything input in the notes abd they just verify if the automatic read is correct! So even if your having a heart attack, since thats not officially part of what kardia software does , the professionsl kardia reader wont tell you that. I did mot try the talk to a cardiologist for 69 bucks. Have considered it

I guess given you have tachycardia, first id look to see id it was sinus tachy or not. You said p waves look good and normal. Alot of times you can tell stuff by comparing bad days to good days thats what im doing now. Some things can only be seen in some leads so often keas 1 not enough. Eg ite easier to see ST depression and elevation in other leads. And have been reading ablut how high voltage in aVL lead means all sorts of nadty stuff (i get this when i have symptoms)

Anyway, want me to try looking at It? Obviously im no expert but at least im willing wgich is alot more than the MDs

 

[vision blue]

@xebex havent read the rest of posts yet. What does your oxygen look lije middle of night? Any chence youre getting sleep apnea and it jolts ykur heart awakw?

I wonder if thats the same internal vibration i feel. Diesnt sound exqctly but these things hard to describe. Not that i know what mime us either

 

[wabi-sabi]

I know I've read something about this online, and of course I can't find it for you now. Maybe somewhere on the Dysautonomia International website?

Any rate, what I am trying to remember is that these arrhythmias happen pretty often in people with POTS while lying down and trying to sleep. It doesn't mean that you have developed yet another heart problem. It's a sign (as you already know) that your POTS is totally out of control at the moment and yo are super stressed and not sleeping. I mean this to be reassuring, but I don't know if I am succeeding. What I am trying to say is, I think you can set aside the fear that you have a heart problem on tops of the POTS. My guess is that what you are having right now in just the joy of POTS and insomnia together, which is quite enough to deal with.

The testing you would want to put your mind at ease (and inform your doctor) is an EKG and then a heart monitor such as a zio patch or a holter monitor. People generally wear these for 1-2 weeks to get a good picture of what our heart is doing. 24 hours as you were given is not enough.

In terms of treatment, the basic stuff is filling up on fluid and salt and wearing compression. That's clearly not enough given your situation. On tops of them you need the right medicine. That part I can't help you with so much unfortunately. I had to try three different meds before the 4th one finally worked and I had to go through a number of doctors before I fond one that was helpful. I don't know of any supplements other than things like normalyte or vitassium that will help POTS directly. Of course, anything that helps you calm down and sleep. like magnesium or chamomile, will make things better in general.

Been the culprit I took an oral rehydration solution for my POTs and everything spiralled out of control.

I'm wondering if it might not have been the solution itself, but the POTS, especially if you have the hyperadrenergic kind. Before I started the correct POTS medication for me, my body used to freak out completely at any change- even when that change was beneficial and what it needed in the long run. This happens especially when you aren't sleeping. Fluid and salt are so important to helping POTS that I can have caffeine just fine when I am hydrated, but get the caffeine shakes when I'm not. On the other hand, caffeine is impossible without m medication.

 

[wabi-sabi]

If you feel up to reading anything, here is the explanation by Dr. Peter Rowe, who is one of the ME/CFS experts and treats a lot of POTS.

https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

 

[xebex]

Thank you very much @wabi-sabi that’s reassuring. I’ll give that link a read.

 

[belize44]

I went through something very similar, years ago. I was put on high blood pressure meds and my pressure went nearly through the roof. Every night as soon as I lay down, my heart rate would spike and become very irregular, and my BP would go really high. I went to the ER several times and all they did was give me Valium. I finally read a book called "The Magnesium Miracle," and started taking lots of Magnesium. I picked the kind with Taurate because it didn't have a laxative effect, and I would also soak my feet in water with Epsom salts whenever the crazy spikes happened. Over a period of six months things calmed down and those symptoms went away and never came back.

I also saw an Electro cardiologist and he recommended lots of salt. On my own, I started also supplementing very cautiously with potassium. I rarely have an issue with that anymore.

 

[wabi-sabi]

that’s reassuring.

Oh, I hoped it would be!

The upshot is, that there are lots of different medications for POTS, and finding the right one seems to take some time and a sensible doctor. I was so severe without medication that I had to move back home with my parents. I'm guessing based on what you're describing that you are going to need medication too, not just salt and water.
With medication I am starting to improve and will be getting a heart monitor to see what exactly is going on later this week. I think you can improve too! Good Luck and Hugs.

 

[xebex]

Oh, I hoped it would be!

The upshot is, that there are lots of different medications for POTS, and finding the right one seems to take some time and a sensible doctor. I was so severe without medication that I had to move back home with my parents. I'm guessing based on what you're describing that you are going to need medication too, not just salt and water.
With medication I am starting to improve and will be getting a heart monitor to see what exactly is going on later this week. I think you can improve too! Good Luck and Hugs.

Thank you, I think meds are needed for sure. What have you been taking? I’m starting propanalol. But am wondering about ivabradine. Salt and full length compression stockings did very little.

 

[wabi-sabi]

For me, mestinon worked. It's been great, but I did have to cut the pills at first and gradually increase my dose. Is this possible with propanolol? That's the freaking out about any change, even beneficial ones issue. Salt and compression don't help by themselves, but the medication also doesn't work as well if I neglect the basics. With all three I can forget how sick I am. I guess I am just surprised by how many things have to be propped up at once to get my body to work at all.

My heart rate goes much too fast, but also much too low so things like propanolol probably wouldn't work for me. But, I'll see what the cardiologist says, now that I finally have one that seems better. Keeping fingers crossed.

 

[LINE]

I feel like potassium may have actually
Been the culprit I took an oral rehydration solution for my POTs and everything spiralled out of control. My electrolyte levels are apparently fine now though. God I’m scared that’s I changed my heart rhythm somehow.

Potassium, sodium and magnesium are closely linked to each other meaning an overabundance of one of those may tilt the others. Theoretically, excess potassium could reduce sodium or magnesium utilization.