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firewatcher

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Everything posted by firewatcher

  1. "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/
  2. 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
  3. 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.
  4. 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.
  5. 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."
  6. 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!
  7. 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!
  8. 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!
  9. I use "Beyond Raw Chemistry Labs" l-citrulline. It was the only "single ingredient" version that I found at GNC. It works for me after several years of experimentation with BCAA's and other supplements, so I kept with it. I've also tried straight-up watermelon puree, but it was not as potent. I have not tried other brands since this seems to work and has been proven safe with my kidney function (checked repeatedly with blood tests.) I agree that most supplements are lousy money-wasters, but whatever is in this one seems to work for me.
  10. I take the caffeine 2-3 hours before workout and the L-Citrulline 20-40 minutes before.
  11. I also take what would be considered a double dose of antihistamines as well as singulair...which have also helped me exercise
  12. For me, the L-Citrulline drastically cut down on the soreness after exercise. For me, I need to take a caffeine pill as well (2 hours before) otherwise I will get light-headed. I think there are systemic reactions occurring with each substance that are special for my flavor of POTS. I have always had improvement with symptoms on Sudafed, including a reduction in tachycardia, so I'm guessing that the caffeine is giving me an energy bump and creating systemic vasoconstriction (my BP is usually very low supine, and high standing, but the caffeine makes it "normal," and reduces my tachycardia with exercise) The L-Citrulline allows me to push my muscles harder without the unnatural fatigue and reduces the amount of soreness after workouts. I've completed the Levine Protocol and have continued to push myself to exercise 1+ hour a day, almost every day for over 2 years. It became much easier with the caffeine/l-citrulline combo.
  13. I've been pushing my exercise pretty hard recently as well. I'm on Singulair, Fexofenadine and Zyrtec daily and did not make the same progress till I started using caffeine and L-Citrulline. Like you, I've noticed that if I take a break, the pain and fatigue get worse. Weird, but seems to be the way we work.
  14. Yes, Blood Urea Nitrogen is the BUN number. All of your Basic Metabolic Panel numbers can be looked at together to form a clearer picture of hydration status, which may cause the eGFR to change. At eGFR of 70-87, you would be very unlikely to be referred to a nephrologist; usually eGFR needs to drop below 60 for a primary care/internal medicine doctor to even consider it. YOU, however, do need to keep track of it, some docs won't tell you or refer until you reach the stage to need dialysis (eGFR <30). I have an Excel spreadsheet of all my labs from all my different doctors, and can see the trend over the years.
  15. I have no input other than to highly recommend Dr. Levine. He's got a bit of a "bad" reputation among POTSy's from his "Grinch Syndrome" comments and pushing for exercise as a treatment for POTS....BUT...I found him to be highly compassionate, incredibly smart and truly interested in his patients getting better. I have consistently performed his exercise protocol for over two years and have improved. It hurts, it is hard and it is time consuming, but it is effective for me. I still have POTS symptoms and autonomic issues, but I am very functional now compared to where I was when I started. POTS diagnosis and treatment is still very much a "point of view" thing with many doctors, so you will have to find a doctor that you mesh with and can treat you effectively.
  16. Serum Creatinine is used as a "marker" of kidney function because it remains relatively constant and is a reflection of muscle mass. HOWEVER it can be effected by diet (meat intake) and dehydration or hypovolemia (BUN is usually a better indicator of dehydration, but it is highly dependent on diet.) I am on a low protein, no red-meat diet to control my SCr and preserve my kidney function. ALSO, your kidney function can change based on position: a very few people have "free floating" or dropping kidney when they stand and that effects that kidney's ability to function and creates orthostatic HYPERtension. What my nephrologist has told me is that the numbers matter less than the trend over time: If there is a consistent and steady increase in SCr it is likely CKD, if there is a sudden massive increase in SCr that could be an acute crisis. Many dialysis patients have both hypotension and hypovolemia but I don't know if there are any studies or info on whether or how the BP and volume effect SCr.
  17. I was diagnosed with POTS just after my youngest son turned five. He is 16 now and has turned out to be a pretty great person. He is the typical teenage guy (into cars and girls and video games,) but he is also a very keen observer of family and friends behavior, and so we talk about it. I try to make him understand that people are often not so simple and that words and actions can’t always be taken at face value. Recently, after seeing the results of several studies and learning more about the cancers caused by HPV virus, I suggested to him that I would like to have him vaccinated. The response I got from him surprised me. As a person with POTS, I am consistently frustrated with the lack of understanding by and education of health professionals; most doctors, nurses and PA’s have never heard of POTS and know far less than what is on the Wikipedia page for the condition. There had been some suggestion that the HPV vaccination couldtrigger whatever change creates POTS in a very small population of pre-teens receiving the vaccination. For this reason, when this particular vaccination came up on my son’s schedule, I balked and wanted to discuss the potential and possible treatment should it happen. The pediatrician’s PA grew abrupt and angry, saying that such a reaction was not possible. After I refused to have the HPV vaccination administered, she attempted to give it to him in the lab-room where he was having his blood drawn. I would never allow her to treat my child again. The following year, I attempted to discuss this again with his pediatrician, but instead of a discussion I was told: “Fine, He doesn’t need it, it doesn’t protect boys anyway.” My symptoms from POTS have only been moderate (in my opinion) and certainly have not impacted my life as greatly as others I know from various support forums. I thought I was improving and handling the physical issues very well. So when my son asked about why I’d changed my mind about the vaccine, his questions caused me to reconsider how “invisible” my illness has been. He asked “Is POTS what is causing you to _____?” and he recited various symptoms I deal with on a daily basis. He then asked, “Is POTS the thing that causes you to not be able to ______?” and then he recites several of the activities I frequently have difficulty doing. We had just discussed the incidence and kinds of cancers caused by HPV, so I was surprised when he said, “Mom, I’d rather risk dying of cancer than live like you have with POTS.” Ouch! Not so invisible after all.
  18. p8d - I've been taking 200mg of caffeine and waiting for the "first pass" to be over (1-2 hours) and then 3g L-Citrulline 20 minutes before working out. It can take 10-15 minutes into cardio for my heart to feel like it is "leveling out" for HR, then it all evens out and takes a great deal more effort for my HR to spike like it used to during exercise...plus I'm not ridiculously sore and fatigued in the days after like before.
  19. I'm going to update this with my current experience. I was diagnosed with the hyperadrenergic form of POTS. During a time of symptom improvement in 2016, I began the Levine Exercise Protocol for POTS and have been able to continue through and am still going. I still have some POTS symptoms, but my overall function is much better; however I was still getting high exercising HR, pretty bad fatigue and post-workout pain. Beta-blockers reduced my exercising HR and chest pain, but increased my fatigue...so I began to take a caffeine tablet in the mid-afternoon before working out in the evenings. After a bit more research this spring, I decided to try L-Citrulline instead of the beta-blocker and it has been VERY helpful. I am still experimenting, but pre-dosing with caffeine by an hour or two, and then L-Citrulline 20 minutes before working out actually puts a really good dent in the HR spike with exercise and dramatically cuts post-workout soreness and fatigue. Either one alone don't have the same effect, but taking them in tandem seems to work really well. Something to try.
  20. I can definitely "echo" what Echo said....lens material matters. You can also have issues with the curvature of the lenses. I have to get my lenses flattened and make sure my frames do not have a strong curvature. I can only have plastic lenses or glass and then only the flattest lens. I get awful headaches and nausea from anything else. I also cannot adapt to progressive lenses either.
  21. Migraines are also an autonomic nervous system disorder. My POTS flares when I get them as well as single eye tearing, stuffy nose, balance issues, GI issues, temperature dysregulation, etc. The pain in your neck and shoulders is also very common in migraine, frequently the first symptom (like an aura or yawning.) Sleep, dehydration, blood sugar, stress, stress-let-down, weather, food....all triggers. I actually found that I craved several of my worst trigger foods before migraine (Kombucha, eggplant, orange juice...) I respond (somewhat) to triptan medications and sleep, but it takes several days for the rest of my body to reset: I know the migraine is over when I get diarrhea, it means my GI tract is working again. High histamine foods and nitrates (like in lunch meats) are known triggers. Your doctor may have to prescribe several different triptans before you find one that works for you, but they help tremendously. I hope this helps...migraines suck!
  22. I control my symptoms with "mindfulness" and medication. I know that at least POTS won't kill me, it is just difficult and uncomfortable. I took advantage of a good spell several years ago and did the Levine exercise protocol and have kept it up. CKD (chronic kidney disease) is good for volume expansion, at least. I stay up to date on the research and don't try (often) to do what "normal" can do. Honestly, I'm managing by being sarcastic and stubborn.
  23. Madisonjan7, I've given up on finding any underlying cause. I don't think that anyone outside of an autonomic research facility will have the time to do that. I had a very good experience at Vanderbilt and would highly recommend them, but even then, finding "cause" is a rare thing. Dr. Biaggioni at Vandy is incredibly kind and very knowledgeable as well. I'm happy with symptom control at this point.
  24. Hi Claire, no, I'm not scared. I cope with it the same way I have with POTS and my other diagnoses: I research and educate myself and then do the best to take care of myself from what I've found. My POTS diagnosis came before my CKD diagnosis, but after looking back as far as I could with my labs, the CKD predated my POTS decline by several years. CKD in some cases, does not progress past stage 3 and I am hoping that mine does not. For many, it is a slow, insidious disease with no real symptoms until you get to renal failure (eGFR< 15%) when dialysis or a transplant occurs (if you are lucky.) Most people don't actually die of CKD, they die of cardiovascular complications. I keep track of all my labs and eat a mostly vegetarian diet and keep well hydrated. Fear is really a choice (just like fight or flight, which POTS gives you in abundance) and I choose fight.
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