Heart arrhythmia, ER, Worse than ever.

[Chris.S]

Hi all. Been in ER twice for 3 days in a row. I luckily didnt have to go back today, but fingers crossed as ive become worse than ever before. I hope to be able to get to sydney to a major hospital but not sure i'll even survive the trip. So dreadfully weak, they just keep sending me home from ER. See my post including a video on it. I am scared as hell and so over it all

http://cfsjourney.org/heart

~Chris.

 

[CJB]

Any idea what triggered this?

 

[maddietod]

I'm sorry.

I think I heard you mention your parents in the video. Is there any chance they could get a heart specialist to you, or you to them? I'm hoping there's a monitor you could wear at home that would pick up irregularities.

Best of luck to you,

Madie

 

[Dufresne]

I'm sorry.

I think I heard you mention your parents in the video. Is there any chance they could get a heart specialist to you, or you to them? I'm hoping there's a monitor you could wear at home that would pick up irregularities.

Best of luck to you,

Madie

I think what you need is a holter monitor to pick up your heart's electrical activity over a period of time. They could send you home with it. It takes five minutes to set up. That's horrible.

 

[Undisclosed]

Have they referred you to a Cardiologist? If you have been diagnosed with arrhythmia's before, then a follow-up is required. Could you contact whoever helped you out in the past for further investigation. A holter monitor would indeed be the way to go. My mom had one of these when they couldn't capture the arrhythmia in doctor's office. She wore it for a week and it captured quite a bit.

It's horrible that you are going through this and heart breaking too.

 

[LaurelW]

My mom had horrible CFS-related heart arrhythmias and none of the specialists helped her. She finally made it 90% better by using the Sinatra protocol, which is a regimen of supplements including D-Ribose, L-Carnitine, vitamin D and Co-Q10.

 

[caledonia]

My mom (undiagnosed ME/CFS) had something similar. I remember many trips to the ER over it. She ended up taking a beta blocker and that worked pretty well. Note that the beta blocker will suck out a little bit of your already low energy. It will also deplete melatonin causing insomnia. My mom had insomnia for years and years. I've only figured this out recently.

You could also try magnesium. Any form except mag oxide which is not absorbed well. I take about 7 tsp of mag glycinate a day, which is something like 1500mg.

Or you could try a general homemade electrolyte drink. That would be salt, magnesium and potassium, vitamin C. I do this four times a day (without the potassium - I don't seem to need that but others do). For vitamin C, I use BioEnergyC with ribose. It's well tolerated and the ribose helps a bit with energy.

If you're craving salty foods, have restless legs or muscle twitches, heart palps, etc. that's a clue this would be good for you. If you have adrenal fatigue, you'll be excreting electrolytes like crazy.

They may be thinking that you're having panic attacks, which also has a racing heartbeat, sweating and so forth. But it also has a very large fear/panic component. Panic attacks won't hurt you, they're just very scary. Of course, the racing heartbeats are very scary too, but it's not the same as a panic attack. You can tell the difference, but they probably can't.

If none of the simple things suggested work, then I agree with getting a Holter monitor. Or maybe they will let you have a trial of a beta blocker. If you end up on a beta blocker, be sure to take melatonin.

Good luck, I know how scary this is.

 

[Sushi]

Hi all. Been in ER twice for 3 days in a row. I luckily didnt have to go back today, but fingers crossed as ive become worse than ever before. I hope to be able to get to sydney to a major hospital but not sure i'll even survive the trip. So dreadfully weak, they just keep sending me home from ER. See my post including a video on it. I am scared as hell and so over it all

http://cfsjourney.org/heart

~Chris.

Chris,

This is awful! I really feel for you. I have had arrhythmias too, but I think I now know the cause--borderline low potassium which seems to suddenly fall if I take something that competes with it. Since you have been to the ER, they must have checked your potassium?? Even borderline low can cause problems in ME patients.

Dr. Lewis in Melbourne seem to help a lot of people--especially on gut issues--but I realize you are too weak to travel. I wonder if he would see patients via Skype?

Very best wishes,
Sushi

 

[justy]

Hi Chris - your story on your blog is so moving. Sorry to hear of all you have been through. I am sorry i dont have any answers for you, but i am concerned about the amount of steroids you are on (if you still are?) I only say this because whilst i understand they have helped you to e somewhat more functional, they may be the thing that is wrecking your immune system.

I only say this because i had to take steroids long term for lung fibrosis some years ago and eventually my immune system just gave in and i was very very ill with flus etc for few years. I also had HPA axis dysregualtion and a myriad of other nasty side effects.

I hope this isnt overstepping the mark - i can see how ill you have been and we all need to do whatever we can to get through.

Please take care - and i hope you have some help soon.
Justy.

 

[Crux]

Hi Chris;

Yours is a painful story...
And you've tried so many things to better your condition.

But I can't help myself without wanting to help someone else along the way, so I'll bring up what I've been learning about lately in case it may apply here.

Though you've been taking many supplements and had some improvements, I haven't seen whether copper is included. ( maybe it's included)

With copper deficiency, there can be many symptoms, including cardiac ones, such as tachycardia. There can also be great fatigue.

Cortisol stimulates some copper enzymes which may help with inflammation. That may be why it helps some of us.

Although I've had great results with zinc, I found that adding copper to it has helped my own recovery process.

Along with everyone here, my thoughts are with you and your recovery.

 

[Wayne]

Hi all. Been in ER twice for 3 days in a row. I luckily didnt have to go back today, but fingers crossed as ive become worse than ever before. I hope to be able to get to sydney to a major hospital but not sure i'll even survive the trip. So dreadfully weak, they just keep sending me home from ER. See my post including a video on it. I am scared as hell and so over it all

http://cfsjourney.org/heart

~Chris.

So sorry to hear about how difficult things are for you. I wish there was something you could discover that would help you out at this critical time. Thinking of you, and wishing you the best.

Wayne

 

[Sherlock]

I think what you need is a holter monitor to pick up your heart's electrical activity over a period of time. They could send you home with it. It takes five minutes to set up.

That's exactly right, which would pick up paroxysmal tachycardia kicking off, or even Wolff-Parkinson-White syndrome (WPW) which results from a congenital accessory electrical pathway that can kick off a run of tachycardia. As caledonia says, at the ER they think it's a panic attack so they don't get excited over this.

 

[xrunner]

That's awful Chris. I hope they refer you to a cardiologist and look into your heart issues really in-depth.

Hi Chris - your story on your blog is so moving. Sorry to hear of all you have been through. I am sorry i dont have any answers for you, but i am concerned about the amount of steroids you are on (if you still are?) I only say this because whilst i understand they have helped you to e somewhat more functional, they may be the thing that is wrecking your immune system.
Justy.

Steroids can affect the heart. A friend of mine had RA, was on steroids and later developed heart arrhythmia.It's a potential side effect.

All the best.

 

[Dreambirdie]

So sorry Chris that you are going through this. It is a frightening and challenging issue to deal with.

I had severe arrhythmia for 3 months after using supplemental iodine. The idiot doctor who prescribed it did not figure out that he had caused the problem, and was concluding that it was some "mysterious" abnormality that needed the attn of a cardiologist. As it turned out, it was me (as usual) who connected the dots back to the iodine and figured out how to manage the problem. I ended up treating it myself with high dose magnesium, high dose holy basil and hawthorne berry. I also learned how to do acupuncture on myself and treated certain points every night before bed. The arrhythmia became progressively better over time, and then went away completely.

I had also had a shorter bout of arrhythmia after taking hydrocortisone for 4 weeks. The same things helped me get through this: high dose magnesium, high dose holy basil, hawthorne berry and acupuncture.

I am telling you this, because there is probably something you might be able to figure out for yourself to remedy the problem at least partially, until you are able to find some doctor who can give you the medical assistance you need. There is a woman I know on Facebook who has heart failure and she is treating it successfully and remaining stable just by using magnesium and hawthorne. Others here have suggested good ideas too--getting your electrolytes balanced, making sure you get enough potassium, and investigating further as to how much of this problem is being caused by the steroids. I wish you the best of luck with it all.

 

[kurt]

I've had arrhythmias over the years, my father also has them and turned out to have nerve overgrowth in the heart. But he does not have CFS, although is in heart failure now (in his late 70s). Anyway, what are you doing to support heart rhythms? There are many supplements that can help, I use:

Rhythm Right, by Carlson (a supplement)
Trace Minerals, by TraceMinerals
Magnesium Chloride by Alta
RealSalt by RealSalt
Potassium chloride

I put the RealSalt and Potassium Chloride together in a rehydration drink I make with rice water (Which I make myself), and that really helps rehydrate, and add other supplements to that, this supports blood volume I think. I can send the recipe if anyone wants to PM me for that.

Also, when the heart is in bad condition, through arrhythmia or other general heart pain, I often take a CapsiCool Cayenne capsule. That supports and feeds the heart and opens up the vessels.

I believe much of the problem we have in CFS with heart arrhythmia is due to low blood volume straining the heart. It has to work harder to supply oxygen when the blood volume is low, and it also does not get adequate blood itself. The combination of rehydration therapy and trace minerals usually stops my arrhythmia problems when they surface, sometimes within seconds.

 

[Chris]

Hi, my sympathy; there is some limited evidence that Taurine, esp joined with Arginine, can help control some heart arhythmias--
http://www.ncbi.nlm.nih.gov/pubmed/16797868
I have frequent Premature Ventricular Contractions, which docs don't take seriously, and am trying a beta blocker, Coreg, and Taurine--may be helping a bit, though not much. Best, Chris

 

[Sparrow]

It's an awful thing. I've been in a similar position, and know how scary and infuriating it can be. I'm so sorry you're going through this.

I've learned not to waste my energy with any medical professional who is not specifcally an ME/CFS specialist. I know that there are probably exceptions out there, but it seems like even specialists in gut, heart, etc. are pretty clueless when it comes to what's wrong with us, and not good at taking it as seriously as it should be taken. I feel terribly jaded saying that, but it's the truth. Even the really well-intentioned doctors I've seen just didn't feel comfortable approaching anything off the standard path. And unfortunately for us, almost everything wrong with us is off the standard path. I actually got a Holter done, but my heart didn't happen to do it's thing that day, so that was no help at all.

Potassium-rich foods (with plenty of water, sodium, magnesium to balance them out) might help some with the heart issues. Mine went crazy for a while when my condition was worsenng suddenly. I think partly it might have been my system freaking out from the other changes and strains, not having the energy its used to and not yet having adapted to that, etc. Thankfully it seems to have adjusted enough that the weird jumps, stabs, or stops where I feel like I'm suffocating are rare now.

It was also helpful for me to get my own blood pressure cuff and heart rate monitor watch. Having access to the information let me know what was really going on when I felt off, at least in those limited areas. I had hoped that it might also wake up some of my doctors having specific numbers to give them, but so far it hasn't sparked them into action or anything. But I think they truly don't know what action to take.

In general, if your condition is worsening rapidly, you might want to go into aggressive resting mode and not do even tiny things beyond what is critically necessary (e.g. finding a way to urinate). I know full well how hard that is when you're desperate for help. I ended up going around to doctor after doctor trying to get someone, anyone to recognize how serious my symptoms were. But nobody did. In retrospect, I would have been much better off lying in bed at home and not putting myself through the stress and frustration of having doctors dismiss or misinterpret me. Learning to stay away from them is one of the better things I've done to help my recovery.

I wish you all the best, and hope that eventually you can get in to see a true specialist in ME/CFS. Until then, I wish you rest and recovery. We're all out here pulling for you, and we understand how serious it is. And yes, it's completely ridiculous that the medical world hasn't made that common knowledge yet.

 

[ahimsa]

Chris, I'm so sorry to hear what has happened. I agree about finding a good cardiologist and trying to get a holter monitor. It's shameful that this has not already happened if you have a history of arrhythmia.

Also, depending on the type of tachycardia/arrhythmia, maybe the Valsalva maneuver would help? This has sometimes, but not always, been able to interrupt my own episodes -- http://medical-dictionary.thefreedictionary.com/Valsalva's maneuver

As with anything, ask your doctor, be careful, read all the warnings about who should not try this maneuver, etc, etc. It's not something to take lightly.

I have had some kind of SVT (supraventricular tachycardia), completely unrelated to ME/CFS (that started at age 29), since I was 11. Never captured on a holter monitor because it is so random but probably AV nodal reentrant tachycardia based on my symptoms, age of onset, etc. Mine usually goes away in 5-6 minutes but some are longer, the longest episode was about 25 minutes. That may seem short but when your heart rate is 190-200 BPM then every minute seems like an hour.

As others have posted, it's not a panic attack. I feel completely drained afterwards (like I've run many miles) but no fear either during or after. When I was onlly 11 years old then of course I was scared the first few times. But after 40 years, and knowing that in my case it's just a short circuit in my heart and it will "reboot" to a normal rhythm on its own, the SVT is just another annoying symptoms. And my SVT (which sounds so scary to the average person) has never interfered with exercise, school, or work, unlike ME/CFS/NMH symptoms which made me disabled. Then add the fact that I have a reasonably understanding and competent cardiologist and my SVT is one of my smaller problems.

HOWEVER -- SVT is very different when it starts to happen suddenly, three days in a row, on top of a bunch of already very bad ME/CFS symptoms and an ER staff that doesn't seem very helpful. My heart goes out to you, Chris, that your situation is so much worse than mine. I hope my sharing the details of my own case is not taken as a comparison in any way. I wanted to explain my own type of SVT in case it helps folks figure out whether the Valsalva maneuver would help them. I do know that there are different kinds of SVT but have no idea which kinds responds to this maneuver.

Also, I'm not sure whether you could do it when you're feeling that weak (wasn't able to watch the video right now but I did read your blog) . Still, maybe others reading this thread who have some form of SVT might find the information useful?

Sending you lots of hugs, Chris!

 

[Sparrow]

Thanks for the tip, ahimsa. It's nice to get the expertise of experts second-hand when first-hand isn't working.

I wonder why we're not supposed to do it if we have moderately low blood volume? I could see that being the most common contradiction for ME patients.

 

[dannybex]

Has anyone been in contact with Chris or heard any updates from him or his parents?

After reading the first page of his blog ("My Story"), it seems like he's had many of these very serious heart issues -- and digestion issues -- for decades. With his severe food intolerances, it seems like IV (Parenteral) nutrition, directly into his vein, bypassing his gut, might possibly be helpful -- and might be his only option in the short term. That might allow him to build up some "strength" and also allow his gut to rest and possibly heal. Perhaps they could address the parasite infections while he's getting the IV nutrients.

I hope he can find help ASAP. He really does need to be in the hospital.