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firewatcher

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About firewatcher

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  1. I started Emgality. The only side effect was bruising and pain at the injection sites (which was not bad at all.) I did not get fatigue afterwards. However, I still have menstrual migraine kicking my butt, but it is only the first dose, so maybe it will get better.
  2. Pistol, I do understand that we are very different in the way our bodies handle medication. Many cardiologists, including my own (without any caution,) have prescribed these together. For some it is a correct combination, much of that is based on the experience and skill of the doctor. We MUST be aware of the possible consequences of the medications that we take. We feel crappy enough most of the time to ignore more serious warning signs. https://www.ncbi.nlm.nih.gov/pubmed/2857518
  3. Yes, It helps with my migraines. It cut the occurrence and intensity down by almost 50%. In some people using BB and CCB together may be synergistic (each one could make the other stronger) and "could" cause your heart to beat too slow or stop. My cardiologist suggested that I take both, but my GP said not to do it. I was not so disabled by the tachycardia, so I stayed on only Verapamil alone.
  4. I've been on Verapamil for years. It has not made my POTS symptoms worse. Honestly, I can't tell that it has effected my POTS symptoms at all, but it did cut the intensity of the daily headaches.
  5. I have a prescription for Emgality for migraine. It is one of the CGRP antibody injections. Has anyone with POTS tried it? What have been your experiences and side effects?
  6. You can get compression garments that are made for exercise. I have compression leggings and shorts made for runners. I also have compression calf sleeves. They look like regular workout gear and help greatly. I am not as sore if I use them for my workouts.
  7. I hesitate a bit before wading into this, but here goes. I have seen and been treated by Dr. Benjamin Levine as well as completing his exercise protocol. As far as doctors go, he has been one of the most compassionate and supportive doctors that I have ever seen. He expressed his regrets over his "Grinch Syndrome" comments and was incredibly kind and informative when I saw him. He understands how hard his exercise protocol is and is VERY encouraging about using it as a coping mechanism for POTS. I am one of his successes. I am not cured, but I am more functional and fit than many of my "normal" friends. It is HARD to do and hard to maintain, but I will continue to try. I hope this coma patient recovers and makes up for lost time. Honestly, I hope we ALL do.
  8. Has anyone had a Cardiac CT angiography with nitroglycerin administration? How did you react POTS-wise? Anyone also with migraine? My cardiologist scheduled me to have one for an investigation of chest pain, but did not explain the procedure. After talking to the nurse, I cancelled. Any experiences?
  9. I have had this frequently in the past. I have had goosebumps in a hot shower, washing dishes and while working out. It isn't a chill, it is an ANS response, because my pupils will dilate (someone saw it and asked if I was OK) at the same time and sometimes my whole body will start shaking. It happened frequently when I was changing meds for migraine prevention. I assumed it was like the "threatened cat" response if you've ever seen a cat about to attack. I have no idea if it means anything except that if it only happens on one side, it is likely a seizure (according to an episode of House, MD.)
  10. My gallbladder had bothered me since age 6, the doctors told me it was "growing pains." I avoided as much fat in my diet as I could until age 28, when it suddenly did not matter what I ate. The "softball wedged between my spine and sternum" pain occurred after eating anything. My GI also worked me up for GERD, Barretts's esophagus, etc. and did a HIDA scan which came back at 17%. I did have my gallbladder removed and have not had that pain reoccur ever again! It did not effect my POTS symptoms or increase my gastric transit time (which was found to be very slow.)
  11. 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.
  12. 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
  13. 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.
  14. 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.
  15. 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.
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