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About Sushi

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  1. 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.
  2. 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.
  3. 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!
  4. Yes, inflammation is really deeply involved in the whole dysautonomia/CFS/fibromyalgia triad and is also a big culprit in blocked arteries.
  5. 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.
  6. 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.
  7. 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.
  8. @Pistol That is brilliant! I haven’t seen a video of it before—thanks!
  9. 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.
  10. 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.
  11. Is your cardiologist open to further investigation? If it were me I'd want to find out the cause--even though it is most likely totally benign. Having just had a mitral valve repair for severe regurgitation (discovered in a routine echocardiogram) I am alert for any symptoms that are unexplained.
  12. Sorry for quoting myself but I really want to learn more about this and realized that the one doctor who might be able to clarify it is Dr. Blair Grubb. I am not his patient but have followed his work for many years. He is an EP, does ablations in very specific circumstances and would know the risks or benefits of ablating the autonomimic ganglia in the heart when doing an ablation for Afib. The best EPs who do many, many ablations for Afib would not have his knowledge of how it might affect the ANS of a dysautonomia patient. If anyone has an idea of how to contact him with, what for him would be a simple question like this, could you please send me a private message? For me this is a critical question as the drugs I am taking now to prevent Afib will stop working (they always do eventually) and then ablation is the only known treatment. This is really tough Alice Jean--I totally feel for you.
  13. I use a very small dose of edible indica (dark chocolate that is very clearly dosage marked) and it is extremely helpful for "extremis" symptoms like the "I feel like I am about to die" feeling. An indica salve helps me with arthritis type aches and pains, but I don't have experience with deeper pain. So sorry!
  14. Yes, Afib ablations are in the left atrium, but: So, I want to gather more information--like would the EP performing the ablation be able to selectively ablate either the parasymathetic or sympathetic parts of GPs (autonomic ganglia, known as ganglionated plexi (GP)? or is is sort of Russian roulette if they ablate these ganglia? I believe that many EPs do ablate the ganglia. Good idea! I'll be very interested to hear the second opinion. If you want to read research material before your appointment, the reference above is very interesting, as is: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4321068/#__ffn_sectitle I really hope all this resolves for you.
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