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Everything posted by Sushi

  1. The FDA has only approved several reading for the Kardia--Normal, Bradycardia, Tachycardia, and Possible Afib. So anything that doesn't quite fit the others, will be labeled Possible Afib. They usually are not Afib but something like PACs or PVCs or bigeminy. You can usually tell if it is Afib by taking your pulse on your wrist with your fingers. Afib is "irregularly, irregular." In other words, it is chaotic!
  2. The wrist trackers can give false readings because they use optical technology instead of actually measuring the pulse like the chest strap monitors do. Moisture, tightness (they need to be tight), hair and some others things can cause readings that are not valid.
  3. I also use a Kardia and they will label anything that seems "arrhythmic" as possible Afib. I have had that reading many times. If I get that, I email it to my electrophysiologist. Often it is PACs (premature atrial contractions--no real problem) but sometimes it actually is Afib. My EP emails back within an hour giving me recommendations--what it is, what to do. You can also send it to the Kardia people and they will give it a professional read for a small fee. There is definitely a cardiac/gut connection. And gut disturbances can trigger arrhythmias. I don't know if you ever do get Afib, but if you do, it is important that your cardiologist/EP lets you know what to do if you go into Afib.
  4. And sometimes they give the fluids cold, as that is (I think) the protocol for heart emergencies, but certainly isn't for POTS--they should be room temperature or a bit warmer.
  5. I carry a packet called File of Life. It is available in many states and is intended for emergency responders, ERs etc. I printed out basic and "official" information on my condition. You could find that on this website. The packet is a red pouch and I have my doctor's card, my medications, my allergies and my print out. It has always been accepted by doctors because the information comes from other doctors. It also gives the emergency treatment recommendations and contra-recommendations. This lets ER docs or paramedics know that you are not "making up your symptoms." If File of Life is not available in your area you can order it online or make your own. I have found that ER docs accept that I have a diagnosis of Dysautonomia. Having something like this with you removes the burden of trying to explain when your symptoms may be making that hard.
  6. I wear compression knee socks but have never noticed dependency. One question: do you wear them when lying down? I was always told not too. With knee socks it is easy to simply pull them down when I am lying down. They are most helpful to me when I am standing or walking.
  7. Hi Scout, Great suggestions. I'll just add that another patient told me that the mask needed for protection is N95. Please don't worry. If you follow the suggestions others have given you should be fine.
  8. There is a nurse practitioner in Flagstaff who has been recommended for Chronic Fatigue Syndrome--I'd assume that she treats dysautonomia as they are so closely related. I don't know her name off-hand but someone else might.
  9. That is more than a bit discouraging! I think the difference is that I am in cardiac rehab and it is an excellent facility. They make individual programs for everyone, taking into consideration ALL their medical conditions. The woman next to me yesterday had Parkinson's disease as well as some kind of cardiac problem. I qualified because I had had my mitral valve repaired recently (there is a connection between valve problems and EDS which many of us have). A balance ball might help though I have tried one and it was pretty intense. If I had to pick two machines that are widely available and which helped the most, they would be a recumbent bike (legs out in front) and a leg press (legs also out in front and a bit higher than the waist). For instance, I started the leg press only able to move 60 lbs 12 times with a 5 minute rest in the middle. Now I can move 80 lbs, 36 times (feet in different positions to activate different muscles). I again take a 5 minute rest in between each round of 12 pushes. With the bike, I "ride" for 5 minutes, then rest for 5 minutes. And then there is Physical Therapy which also tries to prescribe tailored exercises. I was doing that before but have found cardiac rehab much, much more effective.
  10. I do both--sort of. If I know I'll have a tough time with the walking (I usually know from earlier symptoms) I would take a cart. But, I know what you mean about getting worse if you don't use your legs and am just finishing 36 sessions of cardiac rehab--tailored to someone with dysautonomia. I have been able to more than double both my aerobic capacity and my capacity with weights (leg press). I use only recumbent machines and rest for 5 minutes after every 5 minutes of exercise. My OI is MUCH better! I am astounded as I didn't think it would work. It is very carefully medically supervised (they take you HR and O2 about every 5 minutes to make sure you are not overdoing). I'd recommend a program like this to anyone who can get insurance coverage. They have increased the program extremely slowly as they understand the limitations of my disease.
  11. Also, don't forget about the help that the Americans with Disabilities act gives us. I took two years of a foreign language recently and had benefits like taking tests in a private room with double time allowed.
  12. I have something similar but I have never actually fainted--though I think I would if I didn't get the pre-syncope warning and sit down fast--often in what others might consider a very inappropriate place! You say that your BP doesn't change much on standing, but the question would be whether it drops with prolonged standing. Mine doesn't start dropping right on standing but after 10 minutes--whew! The tilt table test I had included two phases of standing. The first was about 20 minutes, then other autonomic tests were done while I was lying, then a longer test. After about 30 minutes my BP and HR went totally bananas and I stopped the test when my BP was 88 over 80. The autonomic nervous system can do surprising things when stressed.
  13. Hi Patrick, and welcome—I think you found the right place on the web. A couple of points: yes POTS can cause all those symptoms. There are medications that can help, though the majority of cardiologists won’t be knowledgeable about them. There are autonomic specialists who are though and you will find many of them listed on the main website associated with this forum. While the Apple Watch is marvelous technology, it records your pulse optically so it is not as accurate as either an arm cuff blood pressure machine or a heart rate monitor with a chest strap. Consider getting an arm cuff (not wrist cuff) BP monitor with a memory so that you can show the readings to your cardiologist. If he/she suggests medications, you might want to check them out here with a search or by adding to this thread. Good luck, we all understand what it is like to live with dysautonomia (POTS is a form of dysautonomia).
  14. I take very low dose (5 mg x 2) and don’t notice this as a side effect.
  15. If you want to pursue disability, what p8d said is true—most are denied on the first round. There is a way that usually works though: two day cardio-pulmonary testing. Dysautonomia patients fail this almost always and it is often used as grounds for disability. Here is a link: https://workwellfoundation.org/testing-for-disability/ It may not be near you but they may be able to refer you to somewhere in your area. Otherwise, a sitting job or working electronically from home is what many do. Best wishes with this—it is certainly a huge challenge.
  16. I talked with both my EP and the interventional cardiologist who repaired my mitral valve about salt and both said to take a lot of salt because of the hypovolemia and the OI. The interventional cardiologist had confirmed the low blood volume during the procedure. He just said to keep an eye out for puffiness or swelling in my ankles and feet—I have none.
  17. First question: how were you diagnosed? Diastolic dysfunction is very common in this patient group and grade 1 is very low. It just seems to come with dysautonomia and/or ME/CFS. I have it too. It is also a good idea to add electrolytes and there are many formulas available for this. Most dysautonomia patients have low blood volume and the extra fluids, electrolytes and salt will help increase blood volume as they help you to retain fluids rather than peeing them out. Many of us also wear compression garments to help with symptoms. I find compression knee socks particularly helpful and wear them at all times. It is very hard to pin down causes for dysautonomia although there is evidence that POTS is associated with certain autoimmune markers. There are a lot more markers than ana though they are only tested at a few places—Mayo and a lab in Germany, I believe.. That is very low. Metropolol is a beta blocker and will lower both BP and HR. There are many other beta blockers and if you are going to take one, you might ask your doctor to let you try some of the others until you find one that suits you—or ask to try an even lower dose. I can’t take metropolol for genetic reasons and take another one. I’m not sure that a beta blocker will do anything more than relieve symptoms—but you do want to reduce symptoms. There are also many other drugs that help with symptoms so, at some point, you may want to consult a doctor who specializes in dysautonomia as most doctors won’t know how to treat it—even cardiologists. Best wishes with this! I know it comes as a shock but good treatment should make you more comfortable. Sorry that we can’t point you to a cure!
  18. Yes, inflammation is really deeply involved in the whole dysautonomia/CFS/fibromyalgia triad and is also a big culprit in blocked arteries.
  19. Thanks so much @Scout. I think that you can get more information there in Australia than I can here in the US. I am actually glad that it was a blocked artery rather than something directly related to dysautonomia—it is easier to treat! So while he has gone through a very dangerous and scary experience, his brave decision to do the reunion concert for fire relief may have revealed the underlying problem of the blood clot in a very public and dramatic setting where he would get immediate help. And of course since most of the news coverage mentions dysautonomia, he is again, though inadvertently, acting as an advocate and bringing it to public attention.
  20. He wasn’t misdiagnosed—he has dysautonomia, probably neurally mediated syncope or neurally mediated hypotension. I believe he came to the States and saw Dr. Grubb. But, he did go into cardiac arrest so I am certainly watching this closely to try to understand why, whether he went into an arrhythmia or perhaps had an unrelated cardiac event. His routine was always super aerobic so it raises a lot of questions and is certainly a caution. But yes, if we ignore our energy envelope there are dangers. I really feel for the guy as he came out of retirement for this reunion concert with the Wiggles to raise money for fire relief. Apparently the concert sold out in 5 minutes, so he was using his star power for the good. When he was first diagnosed we used to explain our illness as the “Wiggles disease” and people got it. He has done so much for our community.
  21. Greg had to retire due to dysautonomia but reunited with the Wiggles for a benefit concert for fire relief in Australia. He was admitted to a hospital having suffered cardiac arrest. A media statement said that “a procedure had been performed.” https://people.com/music/the-wiggles-greg-page-medical-incident/ Greg was a member of another dysautonomia forum I participated in years ago. He has been a spokesman for those with dysautonomia over the years. Wishing him well.
  22. @Pistol That is brilliant! I haven’t seen a video of it before—thanks!
  23. I do this regularly and when I was seeing an autonomic specialist he did it at the end of every appointment. And yes it does give you some basic information but a full tilt table test in a clinic gives you much more. I had my current EP’s nurse do this in her office just to get my drop in blood pressure on my current records. I always drop 30 or more points systolic. To do this it is good to go from lying to sitting and then from sitting to standing. Also it is good to have a blood pressure machine with a memory so that you can show it to your doctor.
  24. I had mild prolapse and regurgitation most of my life and had figured it would stay that way. But I am no longer young and it did change and require surgery so it is just something to keep an eye on and it looks like your cardiologist is doing that.
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