Tachycardia -- What are effective treatments?

[IHPA]

Yes you are right, so she is taking electrolytes, and so far her potassium is still in the normal range.

 

[ahimsa]

.... I ask him [ GP ] if she has POTS. No, he says, since she is tachycardic when sitting down as well. He won't put her on beta blockers, wants to wait for a halter test at the hospital. Is it worth waiting for? Am I better to go private and get a bunch of tests done? Tilt table? V02 max? I'm up for getting whichever tests done that sort this issue out. Her GP wants to believe her tachycardia is caused by anxiety. I KNOW that is not the case. What would you do?

First, I completely agree with you that it's very unlikely to be anxiety. I don't know why doctors are so fixated on that when the heart rate is so clearly correlated with posture (so much higher when standing).

Regarding the POTS diagnosis, I know that different doctors/experts use different criteria to diagnose POTS. But I was pretty sure that the main thing is the difference between lying/sitting/standing. An increase of 30 beats per minute after standing (and perhaps a time limit, too, e.g. within 5 minutes of standing?) used to be enough to get a diagnosis of POTS. But maybe some doctors and researchers have slightly different criteria.

Your daughter is clearly showing a heart rate that increases when she changes from lying down to sitting up and then increases again when standing. So why would the doctor ignore the possibility that this is some type of Orthostatic Intolerance (OI) like POTS and fall back on the anxiety explanation?

The holter monitor (24 hour EKG) might help rule out other types of arrhythmia but it might not show much else. When I first got sick I had a holter monitor and it showed that I had a higher heart rate but not POTS. My main problem seems to be NMH (Neurally Mediated Hypotension, aka, Neurally Mediated Syncope, Neurcardiogenic Syncope, etc.). This type of OI does not show up on a holter monitor (as far as I know? maybe a good autonomic dysfunction expert could guess....) and requires a Tilt Table Test to diagnose it.

The VO2 Max test may be helpful but I think it needs to be done by a doctor who knows about the problems in ME/CFS. They need to know what to look for.

If you can find a good doctor who understands Orthostatic Intolerance that would help a lot. However, I think they can be hard to find. A lot of cardiologists seem to know nothing about OI.

Here's a video that I found on youtube after someone posted (on a different thread) about a doctor in Florida (Dr. Charles Randy Thompson) who does autonomic testing. This doctor is one of the people who is interviewed in this video:

I have not watched the whole thing, just the first 5 minutes or so, but it looks interesting! I liked the part where he says that so many patients are incorrectly diagnosed with anxiety.

Best of luck getting the correct diagnosis and treatment for your daughter.

 

[Sushi]

ahimsa

Dr. Randy Thompson was my autonomic specialist. He is excellent. He has POTS himself.

Sushi

P.S. Notice that in the video Dr. Thompson has his feet on his desk--guess why! He always kept his feet up on his desk during consults.

 

[Apple]

Sushi, I just wanted to thank you again for directing me to the video. I'm really unable to watch it/take it in tonight, but I've checked out the first 5 minutes or so and It's definitely extremely interesting. And he has POTS too? Very interesting. That's the kind of doc that I need!

And a big thanks to @ahimsa too, for finding the video and posting it here. I love this forum.

 

[Sherezade]

I was diagnosed with sinusal tachycardia and chest angina, and the doctor put me in procolaran 5 mg (ivabradine) twice dayly. It has improved a little with the tachycardia, and a lot with the chest angina, that is gone.

I don't know the cause but there's something curious i want to share. I'm consulting an ayurveda doctor, and he told me the tachycardia was because bad circulation and lack of oxygen. So, i brush my whole body very hardly in the mornings to activate the circulation. When i do this, my heart slows down. It's a cheap and harmless experiment that you could try.

 

[Healthy Someday]

Maybe you guys can help me too (please!). My 15-year-old daughter got a diagnosis of CFS/ME earlier this year, after 2 years of tests etc. You know the drill. Anyway, she has complained of heart palpitations often. But when I took her to the GP and to the hospital because of it last year, they took her BP and said there was nothing wrong. Now I have a BP monitor which also reads heart rate. She has a low BP (80/56) which they have started to treat with Florinef. Great, that increased it to about 95/65 (dose is one pill in the morning). But the heart palpitations and generally thudding heart seem to be getting worse. Here are some numbers and situations: lying on couch two days ago: HR 87; HR taken immediately she stands up - 117. Heart rate taken yesterday - seated 102, standing - gradually rising to 119 after a minute or two (then she had to sit down). Today, she gets out of bed in the morning and walks upstairs and sits down. HR 144. I find those numbers alarming. I take her to the GP. I ask him if she has POTS. No, he says, since she is tachycardic when sitting down as well. He won't put her on beta blockers, wants to wait for a halter test at the hospital. Is it worth waiting for? Am I better to go private and get a bunch of tests done? Tilt table? V02 max? I'm up for getting whichever tests done that sort this issue out. Her GP wants to believe her tachycardia is caused by anxiety. I KNOW that is not the case. What would you do?

I have a dx of POTS and my electrophysiologist (the kind of cardiologist you need for POTS) put me on Zebeta and it is wonderful for calming my HR. It is given to performers sometimes so they can calm down during performances. It's been around a long time so I feel safe taking it. I only take it when I need it and it works very fast. I can swallow it or I can just let it dissolve in my mouth and it is even quicker. It lasts awhile too. I've been to Mayo and had all the Orthostatic Intolerance tests but the main one is the tilt table test. I've had 2 of them. In my experience it is the main test to dx POTS. It is miserable to do it because you have to stay still with your heart pounding but they can tell quickly if you have POTS just with that, in my experience.

My heart rate will get high if I haven't eaten enough as well as not drinking enough salted water. Besides the Zebeta doing all the research on Adrenal Exhaustion and taking a little bit of Cortisol has been the other thing that has helped the most. I take the over the counter Cortisol called Isocort because the prescription hydrocortisone is too strong for me. I'm now embarking on the quest to fix my HPA Axis if I can by getting my methylation pathway working as it should. I have some dysfunction there too.

 

[kisekishiawase]

@healthysomeday: lol nice username

anyway, i can relate to the posts here a lot. how many people and doctor only labelled "all in your head" so easily. that was so irritating. and ask what are my activities, i have to be very active and thats what caused my illness. gosh its the opposite!

to me i have to be careful with my diets, such as sugary food caused insulin to rise and adrenalin to kick in and that what caused palp/tachy. there are also food that produces epinerphrine. some food can make my heart go crazy. while some people are fine.
i have to avoid (sacrifice ) things/activities that triggers it. (such as stressful situation. and it very hard!
i also noticed many people including me got tachy/palp issues along with digestive issues. since they got connection.

tachycardia also has correlation to hormonal, electrolyte and mineral imbalance which i still havent understood how to make sure its in exact balance

 

[SOC]

My docs and I finally worked out my tachy problems. The culprit for me appears to be low blood volume. It took us months to sort out what combo of treatments works for me, but now that we've got it figured out, I've improved a lot. I'm able to do very much more than I could even 3 months ago. I also don't have to nap during the day. Hurray! \o/

What works for me:
~500 ml electrolyte drink + 20 mg verapamil + 0.2 mg Florinef as soon as I wake up
Stay in bed, sitting upright, to let everything start working and adjust to upright position (30-45 mins)
~500 ml electrolyte drink + 0.05 mg Florinef at lunchtime
~500 ml of electrolyte drink + 20 mg verapamil at the midpoint of my awake period
~500 ml of electrolyte drink at dinner
~500 ml of electrolyte drink + 20 mg verapamil at bedtime
Sometimes I get another 500 ml of electrolyte drink during the day if I'm more than usually active or tired.

FWIW, we messed with the electrolyte fluid protocol for several months, but it wasn't enough. We then added verapamil which didn't do much. We dropped the verapamil and added Florinef. The Florinef was a big help. We added back the verapamil because although I was more functional, we thought I could do more. This time the verapamil did make a significant difference. We tweaked the dosages until I felt "normal". Now I'm in the stage of slowly increasing my activity.

I'm up to doing deep housecleaning (and boy, does my house need it after all these years of me being sick), every day for several weeks. I have sore muscles, but they are exercise sore, not ME/CFS muscle aches. I sleep well and wake up refreshed in the morning. So far, no PEM. I haven't tried walking any distance -- I've been busy putting my house back together. My husband was a dear, working fulltime and taking care of two ME/CFS patients for 8 years, but it turns out he's no househusband.

 

[Seven7]

SOC is this your CFS Dr or do you Have extra OI Dr???

 

[SOC]

SOC is this your CFS Dr or do you Have extra OI Dr???

Dr R referred me to a cardio to evaluate for dysautonomia. The cardio prescribed the Florinef originally, but Dr R is managing it and the verapamil now.

 

[Seven7]

SOC
OK that is what I wanted to know!!! I read in the dysautonomia Forum they increase Midodrine, I tried tonight 5mg (instead of 2.5) and it worked wonders (I went w family to pot pot (minigolf))

I want to try to increase midodrine or calcium blocker so I want to try that w her!! If I can treat OI I will be in very good shape because CFS is not as much of an issue as OI is.

TX SOC!!

 

[Sherezade]

Hi SOC,

I'm very glad to read that you are doing so much better. Just one question:

Do you make the electrolyte drink yourself? Or do you buy it?

Do you mean gatorade or something like that?

Thanks

 

[SOC]

This product was recommended to me by the exercise physiologist at Dr Klimas/Rey's office. I can't stand the sweetness of most sports drinks. This has some stevia but is not at all sweet. It is supposedly lemon-lime flavor, but it isn't much. It mostly just tastes like mineral water to me.

ElectroMix is a water mineralizer and dietary supplement that contains nutritionally balanced essential electrolytes: Potassium, Magnesium, Calcium, Manganese, plus Chromium.

There are people who mix their own (there are several recipes at PR), but I'm not one of them.

 

[Sushi]

ElectroMix is a water mineralizer and dietary supplement that contains nutritionally balanced essential electrolytes: Potassium, Magnesium, Calcium, Manganese, plus Chromium.

That is the one I use too.

Sushi

 

[urbantravels]

Me three on Electromix. I think it must work out cheaper per serving than most alternatives, besides not tasting gooey sweet and/or super fake. I like it with extra dashes of lemon or lime juice. I actually used it for years pre-illness as a sports drink, because I can't stomach fakey stuff like Gatorade. It's the same manufacturer that makes those "Emergen-C" packets, same size packet and box, but not all stores carry Electromix even if they do carry Emergen-C.

There are also "Nuun" tablets, which a friend of mine who has MS swears by. They're sort of moderately sweet, I think the only sweetener is sorbitol. They're tons more expensive - usually $6 or more for a tube of 12 tablets - but they can be handy to have around, especially if you're out of the house. I found you can break a tablet in half and poke it into the neck of a water bottle quite easily.

 

[Sherezade]

Thanks SOC, Sushi and Urbatravels. I hope i can find it in UK and i will give it a try.

 

[kisekishiawase]

has anyone tried trace minerals? i wonder if that will help?
what about electrolyte drink like pocari sweat? not good enough?

 

[Shell]

My tachy is Inappropriate Sinus Tachy which means without meds I have a HR of over 100 at rest and it leaps POTS like over 120 to over 150 when upright.
I'm on Ivabradine 10 mg twice a day. I've only been on this mega dose for a week but my HR has improved a lot. It's rarely above 100 even when I'm up and about and resting HR is around 80. MUCH better.
I can't take other heart meds because my lungs are bust so it's Ivabradine or nothing for me. Thankfully I can tolerate it (so far) . Cardio it hoping that getting my HR under better control might help curb the rapidly fluctuating BP problems and even some breathing probs.
Just the last couple of days I think my breathing is better when upright - not so much orthostatic breathlessness.

 

[SOC]

My tachy is Inappropriate Sinus Tachy which means without meds I have a HR of over 100 at rest and it leaps POTS like over 120 to over 150 when upright.
I'm on Ivabradine 10 mg twice a day. I've only been on this mega dose for a week but my HR has improved a lot. It's rarely above 100 even when I'm up and about and resting HR is around 80. MUCH better.
I can't take other heart meds because my lungs are bust so it's Ivabradine or nothing for me. Thankfully I can tolerate it (so far) . Cardio it hoping that getting my HR under better control might help curb the rapidly fluctuating BP problems and even some breathing probs.
Just the last couple of days I think my breathing is better when upright - not so much orthostatic breathlessness.

That's all great news, Shell! Hopefully you'll feel better, too, as your body adjusts to a lower HR and your BP improves.

 

[EMilo]

I have a question about the Electromix: it has no sodium, so do you get your sodium in other ways. Also, it contains Citric Acid, malic acid, tapioca maltodextrin, and natural flavor. I was told to stay away from "natural flavor", citric acid and maltodextrin.