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Sushi

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Everything posted by Sushi

  1. Many of us watch this British TV show that is also broadcast on PBS in the States—a curmudgeon but a brilliant local doctor saves the day with diagnosis and treatment of puzzling cases. The patient was refreshingly male and of course I diagnosed him before the Doc! Doc Martin gets B + though as he explained it simply and immediately gave the fella electrolytes. His prognosis was a bit rosy though. Still, public education on POTS!
  2. In my experience they are likely to use propofol. I discovered that while it takes me a few days to recover from a higher dose of propofol, I am fine with a low dose and I now ask the anesthesiologist to administer that lowest effective dose for procedures like a colonoscopy where they only need me to be “out” for a short period of time. I also ask that they start IV saline as soon as I arrive. Best wishes!
  3. Yes, really huge effect in daily life as I no longer even think about how long I will need to stand to do things like make a meal or stand in line at a store. Evidently, ablating these ganglia promotes sympathetic function. I wish that more of us could have this treatment but there will need to be a lot more research for it to be available through insurance, as mine was. I do exercise most every day but with great care. I have learned to “snack” on exercise—5 or 10 minutes at a time and keeping my heart rate fairly low. This way I am able to avoid PEM yet keep some level of muscle strength. For instance a 10 minute bike ride about twice a week, some yoga poses here and there during the day, 3 or 4 minutes of resistance-type strength exercises scattered through the day. Were I to do it all at once, I think that I would get PEM. I do think that the ablation also gave me more stamina as well.
  4. Like a few others, I can be upright all day, though mostly sitting. I only have to lie down if I have seriously pushed past my limits. I do need to wear compression knee socks all day though. The big change for me was having a cardiac ablation for Afib, as they also ablated the autonomic ganglia in the heart as they are a source of Afib. So the Afib ablation was also a cardioneuro ablation and afterwards I could stand up for 45 min to an hour. Before it was 5 - 15 minutes.
  5. Tell me about that. I have seen the ADs but have been sceptical as so few things actually have a positive effect on sleep for me. How does it work and how expensive is it. I do the same sort of evening regimen—even a short phone call ruins the possibility of sleep—which has annoyed some of my friends who just can’t comprehend that. Funny though, a bit of texting doesn’t bother me much. Something about talking…
  6. Yes, very telling! I used to work in a hospital and once when they were doing glucose tests on patients I asked them to test me too. I had not eaten for about four hours and my glucose was 40! The nurse immediately sat me down and gave me fruit juice to drink. Though I felt my usual orthostatic intolerance, I had no idea that my glucose had gone so low.
  7. Clonazepam has helped me a great deal over the years—but at low doses, never more than .5 mg. It has helped particularly when I have overdone it and feel like I’m getting into a “danger“ zone. My problem is getting my current doctor to continue my prescription. He does not want to as he is a GP and does not have experience with or interest in Dysautonomia. Clonazepam at low doses, has also helped me with sleep. Each benzo has different qualities and all the Dysautonomia-aware doctors I have been to, preferred clonazepam over others for me.
  8. You might ask for a 4 or 5 hour glucose tolerance test. They give a measured amount of glucose and check your levels for 4 or 5 hours. It was very telling for me as there an emergency metabolic rescue mechanism that will restore levels after a deep dip so normal glucose tests don’t catch the pattern. Mine went down to 40 during the test. Now I control it with diet, being sure to eat regular protein and complex carbs snacks during the day and sometimes in the middle of the night. I also bought a home glucose meter—easy to use.
  9. Anyone have an update? It looks like they do now ship to the US. Here is a research article: https://www.parasym.co/long-covid.html that looks interesting. It is expensive but more sophisticated than a tens machine and can be used it you have a pacemaker (which I do) whereas a tens machine cannot. They have a 30 day money back guarantee. This is a certified medical device which a lot of research.
  10. My Dysautonomia specialist also bypassed the ER and set up an arrangement with a hospital infusion clinic to give the specified amount of IV Saline to any patient he referred, and this worked. He had privileges at that hospital. Basically a phone call got you in virtually immediately.
  11. I just had one and they gave me go-lytely, which I think is the more or less the same as Miralax. In the US the protocol that I have had in recent years is to drink 2 L of the prep the night before and two more the next morning. In order to get some sleep, that means scheduling the actual colonoscopy for early afternoon. I don’t think I got dehydrated but it certainly is a difficult procedure to go through – mainly the prep as as soon as I got there I asked for IV fluids and they started them immediately. Then I had a light dose of propofol, woke up and they gave me cranberry juice to drink. I find that eating Jell-O on the prep day makes it easier and also things like chicken broth which give you some balance of electrolytes. I did not feel faint but I did drink a lot of fluids besides the 4 L prep.
  12. My PT has not used any codes mentioning EDS but rather codes that refer to specific symptoms--so I don't think you absolutely need an EDS diagnosis in order for insurance to pay for PT. If or when you do need anesthesia, an anesthesiologist I am in touch with says that it is very important to mention EDS, due to the differing response to anesthesia meds, differences in the skin and connective tissue, etc.
  13. I don’t have any contacts in Australia though I do have cardiac conditions that are related to Dysautonomia—I had atrial fibrillation which has been successfully treated 🤞🏼, though were it left untreated, it could lead down the path to heart failure. I also have EDS (something that can go together with Dysautonomia) and that can predispose you to leaky valves—I had to have my mitral valve repaired). It may not be easy to find a cardiologist who is willing to put Dysautonomia into the equation, though there are some out there who do. As far as ejection fraction, it is not a hard and fast number, but rather an estimation that will vary between doctors. Good luck with this!
  14. I have hEDS as I’m sure a number of us here do. As @Pistol mentioned, it is not really treatable (at least not by conventional medicine) and there are not many specialists who would be willing to diagnose it. But, if you know that you have hEDS, there are precautions that you can take against exacerbating it. Since it affects connective tissue and heart valves are made of that, with a diagnosis of EDS, it is good to have your valves checked with an echocardiogram. A physical therapist helps me a lot, giving me exercises to strengthen muscles to support ligaments and also “putting my joints back in place” every few weeks. Also, EDS patients respond differently to anesthesia so it is information that they would need. Good luck with the GI doc, though not all of them will know much about it so it would be good to check with them before making an appointment to find someone knowledgeable.
  15. When I did a TTT in a hospital setting with my autonomic specialist my BP ended up 88/80. I felt really bad at this point and they ended the test. Yes, good to see a cardiologist who is knowledgeable about the autonomic nervous system as soon as you can get an appointment. It is more likely (though not certain) that an Electrophysiologist would know more about this than a general cardiologist.
  16. That is my choice too as knee high compression socks do the job for me and I was not fond of the side-effects of the medication that I took earlier. The socks really don't bother me at all. I choose interesting styles that make me smile.
  17. It is documented that Dysautonomia patients have problems maintaining dilation levels. I remember taking a simple home test that verified this, though I don't have a link to it. I would guess that you could find it online though. And I also have documented difficulty with glare recovery and I believe that this may be common "among us" too.
  18. Shorts, yes—just make sure that they have enough compression. The halter though, doesn’t really make sense—you want to compress the lower abdomen.
  19. They do take insurance, but not Medicare—at least not yet.
  20. By the way, a top anesthesiologist who totally believes in Dysautonomia, POTS, EhlersDanlos, Myalgic Encephalomylitis etc. and know how important the right approach by the anesthesiologist is, recently said that the papers that patients brought to him were unworkable and inaccurate from the point of view of the anesthesiologist. He said that a good anesthesiologist should be trained in how to work with patients like us and that our job was to be very clear about how our diagnoses impacted us. I have recently had several procedures that involved general anesthesia and did find that this was true. For instance, my surgeon needed for me to have deep sedation and also specified that I needed paralytics—this was the only way he could do his job safely. And the anesthesiologist had only so many choices to do his job getting me to the necessary level of anesthesia. Yes, it took quite a while to eliminate all those drugs and to feel “normal” again, but the surgery was very successful and could not have been done without a lot of medications—I could easily have died without them. So it is somewhat of a trade off.
  21. @Macho319 Yes, truly an awful way of being given this diagnosis! I do know of someone with a diagnosis of HEART FAILURE WITH PRESERVED EJECTION FRACTION, but I don’t know what precipitated it. He has done a massive amount of research and consulted a number of experts. He is not on this forum, but rather a cardiac forum. If you would like to be in contact with him, I could let you know where to find him. Hold tight until you are able to get more information from your doctor.
  22. This makes me wonder—have you been checked for arrhythmias when you are getting these symptoms? I had them when I was in Atrial Fibrillation. If you have an Apple Watch or a Kardia device it is easy to check—or simply feeling your pulse in the wrist to see if it is regular or irregular. Just a thought.
  23. I had cataract surgery in both eyes — first in January and second in March. Though it was a bit stressful, I don’t think it affected my Dysautonomia symptoms any more than any other stressful event. It did take a few days to get over it though. They give you some sedation before though you are awake during the surgery.
  24. Kardia has done that, though it is for the patient market. It is an FDA cleared single lead EKG that is about the size of a credit card (works with a smart phone or tablet) and I carry mine in my purse. Doctors rely on it for reliable EKG reports from their patients. After my recent cardiac ablation I was asked to send a Kardia EKG strip by email each week to the nurse practitioner who was following me. Each reading is recorded on the phone APP and you can either send them to a doctor or let your doctor scroll through them. These went in my medical record. So, if this device proves reliable they could also apply for FDA clearance.
  25. Dr. Blitshteyn is following this on Twitter: https://twitter.com/fudimmarat/status/1668631897747103749?s=12 There is a lot iPod interesting information there.
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