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firewatcher

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About firewatcher

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  1. bombsh3ll - I took a tablet before bed. I never tried the nasal spray. As long as you don't drink after you take it, and urinate regularly during the day (or excessively) you should not have hyponatremia issues, due to the "release" of excess fluids. I only had hyponatremia issues when I took it round the clock. I don't take it anymore, after beginning hormone replacement therapy I found that I was concentrating my urine normally and was able to stop taking it.
  2. My labs initially looked like diabetes insipidus and I was prescribed dDAVP. It is a simple test at first with a blood draw after an overnight fast: DI or partial DI if your serum sodium is above 145, serum osmolality is above 295 and urine osmolality around 300. Later once DI was ruled out for me by a water deprivation test (not fun,) my family doc continued to prescribe dDAVP, but only overnight and it was for nocturnal urination and POTS. My son's pediatrician prescribes it to kids for bedwetting. The concern is hyponatremia - when your serum sodium level drops too low, which can happen quickly on dDAVP if you continue to drink any fluids. Several Vanderbilt articles mention using dDAVP for POTS and OI. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3419341/ https://www.researchgate.net/publication/290995380_Desmopressin_In_The_Treatment_of_Postural_Orthostatic_Tachycardia
  3. I started with a rowing machine, but I tolerated the treadmill pretty quickly. The Concept 2 rowers are comfortable and smooth as long as you get one that has not been beaten up at the gym, if the slide grabs or the chain is old, it isn't fun. I hope they figure out your headaches, I had to train around migraines and did not make much progress until they were better controlled. Whatever you do, protect your joints, especially once you begin to feel better and push yourself.
  4. I had to re-work my HR zones entirely. 220-age is not even close to accurate for me, my tested max HR was almost 20 BPM higher than that formula. IF you test MAX HR, do it WITH SUPERVISION, preferably a PT, doctor or nurse. My BP drops once I hit a certain HR and I will gray-out, but can still hear: Dr. Levine gave me tips on how to counteract the drop during exercise, like squeezing a ball in each hand. I also have a Polar monitor with a chest strap and found it very useful for tracking times and types of exercise: it has a wonderful progress/diary function that allows you to analyze you data from the computer. Even after 7 months of training, when I got to see Dr. Levine, he reworked my HR zones even higher (again under supervision.) We are a "special case" with our heart rates and PRE and orthostatic issues are always our nemesis.
  5. I did the complete Levine protocol starting January 2015 and in November of this year, I earned my Black Belt in karate. WooHoo! BTW, Dr. Levine is extremely kind and supportive of our efforts with his protocol, I saw him in July of 2015 and he tweaked my exercise to meet the requirements for karate and supported me during my efforts. I started with strength exercises given from my Pilates instructor/PT (who also oversaw the protocol for me,) but there are plenty of books that you can look at for Pilates exercises too. They are very good because they are supported by the floor or other things and many are supine or reclining. I worked up to a personal trainer at the gym and did several of the easier strength machines for several years. I continued to do the entire Levine protocol during the last several years and still do it today. I have noticed that it is "lost" quickly if you stop and very much a health/orthostatic maintenance thing for me. Quads, hamstrings and calves are critical for the "muscle pump" of getting blood back to your head. I try to workout 6 days a week and have found that muscle soreness and fatigue are far greater when I take a break. The beauty of Dr. Levine's protocol is the gradualness of the effort. It can seem so very slow that you don't see improvement until you look back and realize that you just did "whatever" without graying out. My heart rate is still excessive (for a normal person) with exercise effort, but I can tolerate so much more effort now than I could before that almost no one would realize I have any issues at all. Soreness and fatigue WILL be an issue, but it improves if you stick with it. If you can't progress, keep doing what you did before and don't stop. I'm happy to answer any questions you have about my experience.
  6. I have had similar symptoms as well. Several times, while "in a POTS flare," due to changing meds, I have flushed hard in the face and had my hands and feet go white, ice-cold and numb with tachycardia and chest pain. At the same time, my pupils would dilate wide, I would get painful goosebumps and then I would start shaking. It wasn't pleasant and it was visually obvious to other people as well. I was switching between seizure meds for my migraines and it threw my ANS off. I'm definitely not saying it is normal, but it can happen.
  7. I've had stage 3A Chronic Kidney Disease for 12 years. It was apparent on my labs (though not ever mentioned) before my POTS dx. I've asked at least 3 POTS specialist doctors (at Vanderbilt and Dallas) and they have assured me that POTS does not cause CKD. I've also talked with enough nephrologists and CKD patients to know that CKD does not cause POTS. With a BUN at 30, it is likely that you were dehydrated (or hypovolemic) or eating a LOT of protein. There are things that you can do that will prolong the function of your kidneys at this level (avoiding certain drugs and eating mostly vegetarian/vegan to lessen the filtration burden.) The "normal" tests for kidney function will not necessarily be accurate for us because of the whole POTS/hypovolemia/blood volume/blood pressure issues. Hypothyroidism can also mimic CKD and is absolutely correctable. Don't let any doctor belittle you, these are your kidneys and are really important. Find a doctor you can trust if you can, and learn everything...but you will likely have to do it all yourself. The thing to remember with kidney function is that it is not based on the results of a single test, but the trend of results over time. Even with CKD, it is very likely that you may have decades left without issue, but your kidneys have "less reserve" than fully functional organs.
  8. "Postural orthostatic tachycardia syndrome and neurocardiogenic syncope are clinical manifestations of autonomic nervous system dysfunction (dysautonomia) that can lead to impaired daily functions. We report two young patients presenting with dysautonomia and autoimmune disease who both received autologous adipose stem cells (ASCs) infusions. This report is the first description of ASCs therapy for patients with combined dysautonomia and autoimmune disease. Case 1: A 21-year-old female presented at 12 years of age with escalating severe dysautonomia with weight loss and gastrointestinal symptoms. She had elevated autoantibodies and cytokines and received multiple immune modulation therapies. Her dysautonomia was treated by volume expanders, vasoconstrictors, and beta blockers with mild improvement. She received ASCs about 2 years before this report with dramatic improvement in her dysautonomia and autoimmune symptoms with a 10 kg weight gain. Case 2: A 7-year-old boy presented at 2 years of age with polyarthritis. At 5 years of age, he manifested orthostatic intolerance. He received immune modulatory therapies with mild improvement. He received ASCs and showed marked improvement of his dysautonomia and immune symptoms. Dysautonomia symptoms of these two patients improved significantly after modulation of autoimmune components by ASC therapy. Favorable clinical responses of these two cases warrant further case–control studies." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5346911/
  9. Hot off the presses. I'm not sure how this will impact our treatment in the future, but I am sure it will. "She suggests the body may avoid putting energy into making new cells when the fight or flight system is active. Instead, she reasons, that energy is needed to make a quick getaway. Peak moments of rest and digest may not be the best for making new cells, either, because when food is coming in, cellular processes related to digestion can create free radicals that can damage new cells." https://www.sciencedaily.com/releases/2018/10/181017141033.htm
  10. So it is not a "sleep onset" issue, like insomnia...but an early wake issue? May be the timing of your beta-blocker. Can you sleep at certain times? Earlier, like around 7:00PM? Later, around 3:00 am? I was diagnosed with a Circadian Rhythm Disorder: Delayed Sleep Phase Disorder. There are several other CR disorders as well. My brother has the opposite disorder: Advanced Sleep Phase Disorder and must in bed by 8:00. For me the whole thing is genetic, my mother and grandmother as well as my son have Circadian issues as well.
  11. WOW! That stinks! I think I have "plain old vanilla" chronic kidney disease as well as POTS. If you get referred to a POTS-aware kidney specialist, please let us all know who it is.
  12. I use "double tinted" sunglasses for my "outdoor use" or driving prescription glasses, but I had the color specially blended and it is much darker than regular sunglasses. My migraines are worsened by blue tints, so mine are more orange-rose-red-brown. I've also known other migraineurs that use special tinted lenses for both inside and out and it helps them. There are several studies about light color and wavelength and how it worsens or improves migraine, so it is not pseudoscience. Many eye-glasses retailers will have colored lenses that you can try and stack to get the color "just right."
  13. When you go to Vanderbilt, please take someone with you. The campus is huge and can be confusing to get around. Expect to wait a while, so bring something soothing to do. Don't be afraid that your heart rate won't behave, they've seen it ALL multiple times and know this condition! Several of the area hotels offer discounts to patients at Vandy, so ask when/if you book a hotel. Sign up for their patient portal so that you can ask questions later. Hopefully they can suggest more effective treatments for you! Good luck!
  14. Have you been checked to see if that remaining kidney is dropping when you stand? https://www.medicalnewstoday.com/articles/319473.php Or something like "Nutcracker Syndrome?" Hopefully, you are being treated by a nephrologist!
  15. Good news! Everyone at Vandy has always been helpful for me. Exercise is tough, but is necessary to make improvement...just go slow on the progress so that you keep it!
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