marcus99

No personal experience here with saline IV, but this link has a lot of information on it: http://standinguptopots.org/treatment/iv

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.

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.

I think that might be due to high adrenaline from being upright. I notice similar hypersensitivity after standing for a while.

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.

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 definately improvement going on for me. I am also stuffing myself with as much food as possible, eating 4000+ calories daily, trying to build a stronger body, finally managed to find a way to consume this many calories without crashing severely after each meal (removed all fat in diet, for me for an unknown reason I cannot eat it at the moment, stomach shuts down with nausea and feeling full almost the whole day). I am working out about 1 hour a day on average now. Doing 2x a week strength training and about 6x a week cardio (mostly cycling @ hr of about 140-150). I am building up to adding in jogging, standing upright as much as possible during the day now and walking around the house constantly, trying to sit as little as possible and never allowing myself to lay down during daytime.

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

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.

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.

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

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 obviously that is not "in my head" :P. I had an echo preformed on my gallbladder to check for stones, they found none. Also my liver values were normal, so I have no idea why the eating of fat causes such a huge problem :(. I have lost all faith in my Doctor's so unfortunately I am on my own here. But that is okay My main staples in my diet are wheat bread, skim milk, once a day some lean meat (chicken etc), some potatoes, some rice, some fruit, some vegetables. I ran this through cronometer and the only thing that seemed lacking was vitamin E (found in vegetable oils etc). Managed to find a fat-free source for that (dried apricots) so I eat some of those. I remember in a desperate attempt to fix myself I tried ketosis about a year ago for 3-4 months. It made me very very bad. Completely brainfog and everything got super bad regarding POTS. You could even see one of my eyelids started hanging all the time, it made me really sick, very weird Regarding "the best diet" I see similar as you mentioned, some people love the low fat high carb approach, others the low carb high fat one. I think maybe we just need to accept there is no "one best way" and it works differently for everyone I wonder what difference you notice from the shift of vegan to low carb moderate fat? I looked a lot into the biochemistry of the body and it seems there are metabolic pathways for synthesizing fats/cholesterol from carbohydrates. I considered asking my doctor about this but I figured she probably has no clue about this anyway and I'll just come across as a paranoid crazy

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 started getting worse. I have read a lot about POTS, and for me I think the theory of "cardiovascular deconditioning" makes the most sense (theory from Benjamin Levine: http://profiles.utsouthwestern.edu/profile/14262/benjamin-levine.html ). This is apparantly different from "regular" conditioning and pertains the micro-circulation (very small veins going everywhere). I think I am just a person who is prone to be sensitive to this phenomenom. I also have joint hypermobility, which apparantly a decent amount of people with POTS have aswell. They saw POTS in the 1900s too in certain soldiers. They called it "soldier's heart", back then the treatment was graded exercise therapy. I believe exercise is very important for this problem no matter how hard it is. Build up slowly. I remember reading somewhere that this Benjamin Levine said that he had a patient who hadn't been able to even sit upright for two years. He got her to eventually walk around again after a few weeks of slowly adding in exercise. Do you feel like you got into a spiral of less and less activity aswell which worsened/caused your POTS? We call this a sandwich here: Just a slice of a bread, I add something sugary to it to avoid fat. Nutritional content on package says it has 0.7 gram fat per 100 grams. I make sure to pick a bread with 0 added oils. Some breads here go to like 2 grams fat per 100 gram because they use an oil during baking. One slice is about 80-100 calories I estimate. Then a bit of extra calories for some jam. I think I get like 4500 calories daily currently on average. I just had two plates with a mountain of white rice and lentils for dinner, no problem at all. But had I used a tablespoon of oil with it, I would have had a severe crash with fatigue etc for sure. My gastric emptying is extremely delayed when there is any fat in my meal. It feels like it stays in my stomach forever, my whole body shuts down. Very weird! :S

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 like the more the better for me. In the start I got crazy heart palpations after/during exercise and in the night. Because of this I had to start slow (literally every 5 beats the fifth one skipped a beat). Now I barely get them anymore and am able to push my body further to improvement The low-fat thing was a huge player for me aswell, just as much as exercise.

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.

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 me symptoms. I am 6'6 and 180 lbs currently. I have found online that apparantly in Japan around 1950 they only used to eat 12-16 grams fat a day, so could it be possible...? ,Marcus

Yes. The combo of two things which help me the most are exercise and low-fat eating. I have not tried any meds because in my country they have zero experience with POTS (netherlands). I was the first person in my hopsital to get this diagnosis (after that I asked them for a tilt table test after finding out about POTS online). So I cannot rely on them for guidance and need to self-experiment. I have been doing exercise for about 4 months now. I started at twice a week and currently doing six days a week. In the start my HR went from 80 to 160 within a minute of standing, now it goes to about 120~ish. And still improving. Be sure to start exercising in horizontal position (rowing / recumbent bicycle) then to a normal bicycle and then to walking. Check this link for an example of a training schedule for POTS: http://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf Also make sure to eat as much calories as possible from easy to digest foods.

For me the easy to digest stuff (refined grains/sugars etc.) gives me the least symptoms. I know that it isn't "supposed to be healthy" but it greatly reduces my post-meal fatigue. Eating VERY low fat also helps me with this. And not too much protein (enough, but no extreme amounts). I think in my case it might be caused by less blood being needed by my stomach for digestion.