Sushi

I also have these swings and am very often high in a doctor’s office. For me, yes some level of white coat syndrome, but also, I always drive myself to appointments through city traffic and have a caffeinated drink before driving to help with concentration. I think both the stress of driving and the caffeine play a role.

Well, it shouldn’t be the patient’s responsibility but, I my experience, it often is. I always check interactions and metabolic pathways when I start a new drug as the doctors never do! Kinda shocking. Twice I’ve found life-threatening contraindications. And what about the majority of patients who would never think to check or not know how?

I had the Moderna bivalent booster a few weeks ago. I had about two days of high fever and extreme chills but then by the third day felt relatively normal with the help of Tylenol. Looking back I was more tired for about two weeks after the booster but then returned to my baseline. I had previously taken only Pfizer. I hope everyone recovers well from what ever reactions they get from the boosters.

@Abe You won’t know unless you try it unfortunately. It is great for some but for me it was the worst I ever tried—turned me into a zombie. But then I am higher in parasympathetic response than sympathetic and were at the reverse it might have been helpful.

How did you respond to metoprolol? It came up under the ‘never take’ list for me because I am a poor metabolizer of CYP2D6. I took a test from Asperio Labs, but it is no longer available. Had I not had that test, I would have been prescribed metoprolol. Because of it I was prescribed propranolol instead.

I find that pharmacogenetics testing is extremely valuable. The test I had covers a huge number of drugs and even if a drug isn’t covered, once they test your metabolic pathways, you can look up any drug you are considering to see if it is metabolized through a compromised pathway. For me, CYP2D6 is is very compromised and a lot of drugs use this pathway. I am now convinced that many of what we call drug reactions happen because they are metabolized through pathways that are genetically compromised.

I have Afib and took Flecainide for years until it caused a very serious side-effect and I switched to Multaq. But all the antiarrhythmic medications have side effects and some of them are serious so your doctor is certainly right to have you stop Flecainide before trying to get pregnant. Another option for PACs is triple magnesium—Magnesium Taurate, Magnesium Malate, and Magnesium Glycerinate. Some find this really helps with PACs.

Have you checked your BP? My heart rate does not rise when I am upright but my blood pressure falls giving me pre-syncope. This is quite common for some patients. For me, it isn’t POTS but rather neurally mediated hypotension. Some have both I believe.

This maneuver is likely to help with arrhythmia-type symptoms if they are triggered by a hypersympathetic nervous system, but likely to worsen symptoms if your triggers come from the parasympathetic system. This is my experience and others when dealing with arrhythmia but may extend to other dysautonomia symptoms.

@MikeO Have you tried an abdominal binder? It helps me with post-meal hypotension as it prevents (to a degree) splanchnic pooling.

You could ask your GP to do a “poor man’s tilt table test” to check for POTS or neurally mediated hypotension. You can find the instructions online but basically your BP & pulse are first taken after you have been lying down for a few minutes, then after you have been sitting for a minute or so and then standing—every minute for at least 5 minutes, preferably 10. If your systolic BP drops 30 points or more or if your HR rises 30 beats or more, that is evidence to order a proper Tilt Table Test with a doctor who has knowledge of the autonomic nervous system and actually knows the proper way to do a TTT. Unfortunately many TTTs are not done properly and thus don’t reveal the problems. I had several upright tilts during my test, one of about 20 minutes and one that was aiming for 45 minutes but my autonomic nervous system went nuts after about 30 minutes with my blood pressure at 88/80 so the test was stopped as it was getting dangerous. You need that long upright tilt to uncover some of the basic problems. You also need several other autonomic tests along with the upright tilt. Did your daughter have a comprehensive tilt table test?

Then there is tachy-brady syndrome otherwise known as sick sinus syndrome. I was diagnosed with that and now have a pacemaker.

I always ask for an anesthetic agent without epinephrine and they have always had it at hand and been happy to use it. It just takes a bit larger dose and you may need more frequent injections if it is a long procedure. I even had a pacemaker put in using lidocaine without epinephrine. If a doctor or dentist is unwilling to give you a non-epinephrine injection, become an insistent patient! It is not only POTS patients who don't tolerate epinephrine, many others don't as well. I just tell them from the get-go that I don't tolerate it and to please use a preparation without it. Your experience is shocking!

I've successfully reduced my dose by 3/4 but my doctor and I decided to keep me on a very low dose as it is beneficial to me. The secret? Tiny reductions in dose over a period of many months.

It has a good record. Just check your meds for interactions as Paxlovid does interfere with a lot of meds. Good luck!

Yes, InstantPot is great for grains—I particularly like it for steel cut oats: 3 times water to oats, 5 minutes depending on the texture you like. The instant pot is very forgiving and that you can put your oats or whatever on and forget about them as when the timer is finished it will keep them hot until you were ready to eat them. Steel cut oats are supposed to have the edge over regular oatmeal when dealing with cholesterol And no pot watching! 🙂

That is great! Hope this continues. 👍

This and electrolytes-fluids-salt is the most important factor for me. I could not function at all without compression knee-highs. On bad day, I’ll add an abdominal binder and wear higher compression knee socks. Gotta squeeze that blood back into the brain — and manufacture more of it with the fluids, electrolytes and salt.

I am further researching cardio neural ablation (ablation of the gangionated plexi in the heart) as I have a FaceTime appointment (Aug 4th) with the EP who will be doing my ablation. The research is very interesting: They are reporting about 80% success rates after 30 months. They also say that they are getting the same results for pre-syncope. I'll be very interested to hear more from my EP. My impression so far is that he won't mess with "experimental" approaches to this, but will only use approaches that have shown positive results in clinical trials. And:

Like most of us with Dysautonomia, I have GI issues. I did consult with a gastroenterologist as I was getting a colonoscopy anyway. Pretty useless—Miralax and psyllium! An automatic specialist might offer more GI help.

When a doctor put me on a Klonopin taper (it wasn’t my idea, the doc just didn’t want to prescribe it—I was taking a low dose for sleep), my Afib episodes increased exponentially. Another doctor (integrative) said that he understood why this happened as Klonopin affected catacholamine levels—and he put me back on my low dose and the Afib episodes were greatly reduced.

He said that he uses the KAL brand, taking 1/4 of each 400 mg or a total of 300 mg of magnesium in the morning, and then does the same at bedtime. He also sometimes takes 1 Natural Rhythm Triple Calm Magnesium in the evening instead of the 1/4 tablets. He doesn’t say why he sometimes take the KAL brand twice a day and sometimes takes the Natural Rhythm brand in the evening. Hope it helps you too! Many people do say that the type of magnesium makes a big difference.

He takes them separately and just any decent brand that he buys on Amazon. He takes all three in divided doses two or three times per day.

@DysautonmiaMatt Someone on an Afib forum I follow says that taking a combo of magnesium glycinate, malate and taurate completely stopped his PVCs and PACs. He said that it is combo that is so important. I just read this now so thought I’d share it.

Yes, I have a Kardia and if it says Afib, it is almost always right. But it isn’t so good at identifying other arrhythmias. I can tell the minute it starts and stops: pounding, irregular beat that is very uncomfortable, all my Dysautonomia symptoms are worse—particularly OI and fatigue. Heart rate registers at about 115. Impossible to do anything, including sleep, until it terminates. My episodes seem to be parasympatheticly triggered so sometimes I can terminate them by stimulating the sympathetic system by doing something like running in place. If that doesn’t work, they so far have self-terminated after a few hours. I’ve been on antiarrythmics for years and am now in line for an ablation. I have a FaceTime appointment coming up with the electrophysiologist who will do the ablation and I will discuss with him what he can do to help dysautonomia through the ablation.