Sushi

@CallieAndToby22Thinking of you and sending love. Please keep in touch and let us know how you are. ❤️

It could also be pressure on the vagus nerve. I belong to an arrhythmia forum and many find that they have more palpitations after a mean due to the effect on the vagus nerve. As far as hydration, gatorade has a lot of sugar and isn't that high in electrolytes. Many of us use powdered electrolytes. Electrolytes helps us not to pee out too much of our liquids.

You can find good ones online. I use a company that will help you get the very best size using a phone consult. It is Bright Life Direct--they carry many brands though I have found their house brand best for me as it is reasonably priced.

It is called “white coat syndrome!” Most doctors take it into account but if yours doesn’t, take your home BP machine with you to appointments and ask your doctor to scroll through the memory. My BP is always higher at a doctor’s office than at home too. Having seizures during your tilt table test must’ve been really distressing! But again, even though you didn’t feel nervous, some part of your brain knew that you were being observed and tested, plus being dehydrated. All that is enough to make you more symptomatic. Plus during the tilt table test you have to stand without moving at all so you would never replicate standing for 40 minutes without moving in your normal environment. My tilt table test results were exceptionally screwy during the “long stand” part of the test.

I was told the same thing and really want to emphasize this—Midodrine can cause dangerous spikes in BP in some people—I know as I had to stop taking it because of this. Taking it near bedtime could be dangerous, and there is also no point as it is to prevent drops in BP while standing. @JFreeer

Helps me too—but in moderation. Perhaps because I have so much brain fog in the morning a little spike of caffeine helps.

Yep, I have Ehlers Danlos. From this interventional cardiologist’s twitter account:

I have had it for a long time and it is true that sometimes it shows on an echo and sometimes it does not. I was told that it can have to do with being in the right position and it can also be affected by hydration levels but that the prolapse doesn’t spontaneously heal—it is just hard too see sometimes.

You could check out the physician finder on this site: https://www.dinet.org/physicians/ Though, admittedly, many patients need to travel to see an autonomic specialist as there are so few. Also, Dr. Blitshteyn, one of DINET's medical advisers offers Skype consults.

Did you ever experiment to see if you are electromagnetically sensitive? I am and will get heart rhythm disturbances if I have a computer, phone, or iPad in contact with my body for any length of time. You are wearing a computer on your wrist so it would be an interesting experiment to take it off for a couple of days and see if anything changes.

Yes, that could be confusing! I have NMH (basically the same diagnosis you have) and I also have Afib as confirmed many times by EKG. There can be a relationship in that many Afib episodes are triggered by the autonomic nervous system—my electrophysiologist thinks that mine are. But, your Apple Watch says sinus rhythm and it has good technology. When you get a random episode of tachycardia it is easy to tell if it is Afib, simply by feeling your pulse with your fingers. Afib has no pattern—it is “irregularly irregular.” The pulse feels chaotic. As @Pistol mentioned, if you really want to check it out, make an appointment with an electrophysiologist (rather than a general cardiologist as electrophysiologists specialize in heart rhythms) and ask for a holter monitor.

He was my doctor too. If he is not seeing new patients and "old" patients like you, who is he seeing? He helped me a lot.

Great! Just make sure to educate them about Dysautonomia so they don’t create an inappropriate program for you. I think I detailed the program I did here, but there is more information on a thread in a ME/CFS forum: https://forums.phoenixrising.me/threads/just-finished-an-intelligent-program-of-cardiac-rehab-and-doubled-my-exercise-capacity.79034/ The program helped me immensely—I am able to do much more in daily life and recover much faster. I am also continuing on my own with a reformer Pilates class (done lying down) and recumbent machines at a nearby community gym. I wish you the best!

That was pretty interesting as they considered it a perfectly reasonable differential diagnosis and discussed different types. Though, in the end, it turned out to be an adrenal problem. Still, it will enter public awareness. It was the episode that aired on March 2.

I had a pulse pressure of 8! On a tilt table test. My autonomic specialist took that very seriously.

Yes, low barometric pressure makes everything worse for me too. This is one reason I moved to the sunny southwest!

Low pulse pressure is a problem for many of us. When I did the tilt table test, mine went to 8! I really felt awful and asked them to stop the test. But seeing an autonomic specialist (if possible) can help with symptoms, even though we don't yet know how to address most of the basic causes--or in many cases, what they are. I just completed about 4 1/2 months of very carefully planned cardiac rehab and it also helped my symptoms a great deal. But the program I did was designed for me specifically as a dysautonomia patient. Most will not qualify for insurance to pay for this high tech, monitored program, but you can design it yourself using online resources as several doctors/reseachers have designed programs for POTS patients. The bottom line is SLOW with only really incremental increases in exercise time and resistance. I increased about 1 minute a week, doing two sessions per week. I took too much time to recover to do it more often. I also only used recumbent machines. Took a lot of patience! Now I am continuuing on my own.

I believe that the methods used at this clinic are more for those who have an exaggerated sympathetic response—which is not the case for all of us. This comment comes just from reading—I have not visited the clinic.

I would not think that this would be more than a temporary help and doubt that you could find a doctor to do it. Hypovolemia is sort of a marker for Dysautonomia—mine has been verified by an interventional cardiologist. For me, compression knee socks do help a great deal, as well as fluids and electrolytes. If you see an autonomic specialist they would no doubt prescribe medications that should help—though your ability to do 20 minutes of yoga daily sounds very good!

I have had several cortisol level tests with samples taken 4 times a day. My pattern was the reverse of normal—very low in the morning and increasing to its highest level at night. This corresponds with it taking several hours in the morning to “wake up” and having a very hard time getting to sleep at night. Apparently other Dysautonomia pat have a similar reverse cortisol curve during the day.

I have posted in the past about just completing cardiac rehab using a program which was individually designed for me with Dysautonomia in mind. I could never have exercised daily though as each session required days to recover from. We worked out a program (which was extremely helpful) of sessions twice a week, using only recumbent machines and with a five minute rest period after every few minutes of exercise. At first it was after 2 minutes and by the end it was after 6 minutes. I am continuing this program at a local gym. I increased my aerobic exercise time by about 1 minute per week and this worked for me. I was able to double my exercise capacity after 36 sessions and gradually the post exercise “payback” diminished and has now nearly disappeared—this is a huge improvement! Please realize that most doctors will not understand the problems that Dysautonomia patients have with exercise.

They are afraid that you might throw up—at least that is what they told me.

Just metoprolol—I take propranolol instead. My genetics report says about metoprolol: Based on the genetic result, this patient is at risk of excessive beta-blockade at standard dosage....a poor metabolized (me) May require a 75% dose reduction.

I have had pharmacogenetic testing (testing medications with my genetics) and found that one of the most common BBs (metroprolol) is a drug I should never take. With others I may need a higher dose, or a lower dose. This is one possibility that could affect your response to BBs. I had to try several before finding one that suits me. I've also taken diltiazem successfully. I always make a printed list of questions and sometimes my EP will want to read a quote from a research article that I have printed on my question sheet. I open a document for questions a couple of weeks before an appointment and add to it and refine it as I think of new questions or approaches. Good luck!

I got gut side-effects and have stopped increasing. I am taking 30 mg twice a day with an unexpected benefit: end of migraines! Anyone guess why? Must have something to do with acetylcholine.... I have not noticed benefits to fatigue levels but I may not be taking enough.