Sushi

On 4/25/2020 at 3:25 PM, MTRJ75 said:

what's going to happen if I physically need to see a doctor. 

With the current crisis, insurance is paying for remote visits by Skype, Facetime, Zoom etc. I had a Facetime appointment with my PCP this last week. Of course the doctor can't touch you in an exam, but they can see you carefully if you are close to your camera. I hope this will continue in the future as it would help many of us. 

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

7 hours ago, judyinthesky said:

Hi!

I get a lot of palpitations after eating, and it could be due to some of the illnesses I have, but it is unrelated to what type of food I eat, and other people with the same illness do not get that. Hence I have thought about the possibility of it being due to dehydration (I have pancreatic insufficiency with some strange nerve involvement and neuropathy in other areas of my body and gastro tract).

Thus, what do you do against dehydration as people with dysautonomia? Maybe that would be worth trying for me too. Just drinking lots of water and gatorate, or anything else I can try? How would I check this with a test?

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.

On 4/22/2020 at 5:37 AM, TigerLily said:

My PCP prescribed me compression hose but I was not able to fill the prescription due to the coronavirus:(

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. 

19 hours ago, Nin said:

My blood pressure when I test at home is on the low side and then with doctors it's higher.

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.

14 hours ago, KiminOrlando said:

I was also told not to take it and lie down so I was not to take it close to bedtime. Is there any chance you misunderstood the instructions? It might be worth double checking exactly how your doctor wants you to take it.

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.

7 hours ago, TCP said:

MVP seems to be a feature of Ehlers Danlos

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

4 hours ago, CastleWolf said:

Weirdly enough, I had MVP show up on an echo a few years ago and this year, it's not showing up. I've heard it's something you don't grow out of, but perhaps it can be repaired with time? Or maybe the prolapse is just subjective depending on the echocardiogram technician and doctor reading the results. My last technician said it was a subjective thing. Makes sense since every doctor is subjective and what one diagnosis is to a doctor is a different or non-existent diagnosis to another. 

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.

1 hour ago, WickedMindz said:

I have but I honestly don’t know where to look to be honest. I’m not sure of many near me. My neurologist is the one who sent me for the TTT with the cardiologist. 

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. 

1 hour ago, WickedMindz said:

It’s scary because randomly my heart starts beating fast I can feel it in my chest and my throat and I get tremors and dizziness but nobody has found out what the issue is besides the tilt table test that I had done.

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.

3 hours ago, WickedMindz said:

The doc said I didn’t have a fib as it was most likely due to me passing out due to a vasovagal issue? My 84 year old grandmother does have a fib though but according to the doc that did my test he wasn’t worried about it and claimed I didn’t have it. My concerns are that I am not sure if these random symptoms I’m getting are due to afib or due to dysautonomia.  I do have the Apple Watch series 5 that can detect afib and every time I get those weird symptoms I do an ECG on my watch but it never picks up that I have afib it says sinus rhythm.

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.

On 2/20/2020 at 1:16 PM, CallieAndToby22 said:

Used to see Dr. Thompson in Pensacola but he started a new practice and not seeing any new patients.

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.

18 hours ago, ReginaH said:

@Sushi

Just realized you wrote about Cardiac rehab as well. Excited to start. Sounds promising!! I hope it's not a long wait. I think there's only one place near me that does it. My neuro is having my cardio write the script to help with insurance and she really wants me to do the actual program because she thinks I should be hooked up, after reading my post-exercise Kardia results.

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.

7 hours ago, Pistol said:

I have been trying to figure out why POTS can worsen with weather changes ( as it does in my case ).  According to this article found online

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

46 minutes ago, ReginaH said:

Hi, Sushii! Yes, basically every morning I can do 20min of moderate yoga! I am finding that the electrolytes and 80-100oz of water are helping with postural tachycardia most days but that my pulse pressure is consistently s***, as well as the raise in diastolic BP upon standing. I have so much trouble finding literature on the subject of this specific combination, especially because I've been hydrating. Today, for example, my BP was 101/83, or 18PP and 18% of the systolic. That's not good...

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.

On 2/25/2020 at 6:14 PM, Linz1501 said:

Can you please elaborate? I planned on going to see her this summer and would really like to hear your story. 

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.

On 2/26/2020 at 10:24 AM, ReginaH said:

Is a blood transfusion ever a solve?

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.

On 2/21/2020 at 8:32 AM, SCOOBY said:

I was recently diagnosed with POTS and I suspect it’s the hyperadrenergic subtype as my BP increases significantly after standing  from a lying position. I have very limited exercise tolerance, but my doctor recommended daily limited aerobic exercise in an attempt to improve my exercise tolerance.

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.

17 hours ago, Nin said:

Just wondering if anyone knows why you shouldn't eat or drink before a tilt table test for diagnosis for pots? My heart rate doesn't seem as high in the night is that because of drinking throughout the day and it helps?

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

14 hours ago, Scout said:

@Sushi That's very interesting that you also can't take metoprolol. Do you know if it's all BB's, or just that one? 

I will get tested for that — that sounds very useful! Thank you! 

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.

21 hours ago, Scout said:

I clearly can't tolerate BBs

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!