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marcus99

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  1. No personal experience here with saline IV, but this link has a lot of information on it: http://standinguptopots.org/treatment/iv
  2. Same here, been to GI doctors in the start, thought it had to be something related to the GI tract since I got so severely fatigued after meals. My method to cope with this is eating ZERO fat. Wether this is healthy/sustainable I do not know, but it reduces my postprandial fatigue/crash by about 70%+ I notice reading online that people with these problems have mixed results with different approaches, some seem to do better on a bit more fat and lower carb, others the other way around. Only way to figure out is to experiment.
  3. I do not feel like I need specifically a deep breath, but I do have much more need for air than normal. I also notice in the morning I need way more air than later in the day. I am using a "Frolov breathing device" to train my lungs, I have to say it seems to be helping. It is basically breathing with air resistance, it mimics high-altitude breathing.
  4. I think that might be due to high adrenaline from being upright. I notice similar hypersensitivity after standing for a while.
  5. Had very severe IBS for 7 years following antibiotic treatment, cured myself of it with extreme dose of probiotics 1 year ago (~1500 billion a day from 60 species, equivalent to 300 pills with 5 billion each daily). Have mild scoliosis (no complaints from it, found it at random on x-ray). Joint hypermobility (could be mild eds-3, though I don't care for a diagnosis, it changes nothing). Erythromelalgia (wrong diagnosis I think, probably just POTS blood pooling). Used to have asthma~like problems, fixed that with Frolov breathing device training.
  6. I am 4 months into this, currently starting with upright cardio. Basically first two months I did rowing, then 2 months upright cycling. I am having decent results, my standing HR went from 80 to 150+ within a minute 4 months ago, now it goes only to like 120-130. Diet and exercise were the biggest help. I do not take any meds. I am still pushing onward, I remember in the start when I tried doing standing exercises the following night I would wake up constantly with heart palpations throughout the whole night, now I do no longer get this after an upright workout. So there is def
  7. For me eating very low fat helps loads with this. When I ingest fats with a meal my stomach just shuts down into hibernation, food sits there for hours and hours not moving, while with just things such as rice + steamed chickenbreast or just bread it is much less, perhaps 70% less. https://www.ncbi.nlm.nih.gov/pubmed/16537685 Also it seems ginger greatly reduces gastric emptying time by about half, worth a try maybe: https://www.ncbi.nlm.nih.gov/pubmed/18403946
  8. I have this sometimes, and sometimes not. I think it has to do with circulation. I get this simultaneously when my hands/finger nails have a more blue/purple~ish color. When they are normal pink color I do not have this. I notice that I do not get it after exercise, and after warm water/shower it also dissapears. Also I am more likely to encounter this in the morning rather than the evening.
  9. It is currently semi-privatized healthcare here. All specialists are together in business-partnership and they "rent" hospital locations/rooms while paramedics (nurses etc) are in contract with the hospital itself, very weird system. It is so different per doctor, I have had doctors Googling things in front of me and just reading them out. Hallo Corina, thank you for the link!! I remember mailing this Dr. about half a year ago after seeing him in the list on this site, but never received a reply, I figured maybe he was out of business, but perhaps I used a wrong e-mail adress.
  10. I have given up on doctors alltogether. In my country (netherlands) you are very unlikely to find anyone with a clue on how to help POTS. My cardiologist didn't care that my HR went from 80 to over 150 within a minute of standing on a tilt test and feet&legs turning red/purple from blood pooling. The echo & EKG of my heart were normal, so I do not have a problem he says
  11. Thank you for the replies everyone I hope exercise will help you, but I think it will, just don't be discouraged if you don't see instant results. What also was easier for me in the start is to exercise later in the day (in the morning my symptoms are the worst). They are no longer looking to diagnose me any further unfortunately, before I had came across POTS online they kept saying I need cognitive behavioral therapy because I am an "unexplained case". (I bet they thought it's just in my head). My feet turn red/purple from blood pooling after standing for too long, so obvious
  12. Probably I have had it for like 8 years, it got worse and worse over time. I am 23 now, it started significantly affecting me around age 15. Got "diagnosed" about 6 months ago. I got in a spiral of less and less and less activity. Due to this it got worse and worse I think. Now that I look back on it, it seems to have been starting after I stopped being very active in sports. Was always very active doing things physically age 1-14, then during high school it lessened and by age 18-19 even less. When I think of my history, it seems each period that I had less activity physically it slowly start
  13. Exercise is definately helping. It takes a while to get going but definately helps. I started about 3-4 months ago exercising. My HR went from 80 seated to 160 standing back then within 1 minute, now it goes up to about 120. Here is an example programme: http://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf I started on the rowing machine, now have been doing upright cycling for a while and starting to mix in some up-right stuff (treadmill). Currently exercising about 6 days a week. I find a need a huge amount of exercise volume. It feels li
  14. Yup, some days even 40 It is cheap, 20 sandwiches is about 1 euro (1.06$) here (Netherlands). I move around a lot and do much exercising (for improving my POTS), so I burn tons of calories, I lose weight at only 3000 calories And I am trying to gain some weight What kind of blood work should I be looking at? Which values? In my country we still need my doctor's order, but I am sure I can get her to run some bloodwork for me.
  15. Hello I am wondering if anyone knows if a no/low-fat diet will cause problems in the long run? I notice this reduces my symptoms by a lot, like almost by 50%. I am eating only 10~ish grams of fat a day. But I get enough calories (over 4000 calories, I eat more than 30 sandwiches every day...) For many times I have retried to add the fats, but every time the problems return again... Even a single glass of whole milk gives me a lot of symptoms. As does a tablespoon of olive oil, it does not matter where the fat comes from I've tried everything. Even coconut oil gives m
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