marcus99

No personal experience here with saline IV, but this link has a lot of information on it:

http://standinguptopots.org/treatment/iv

1 hour ago, Always hoping said:

Absolutely yes to the increase in symptoms after meals.  For the first 4 years prior to diagnosis, I believed my problem was somehow related to my stomach.  Within 1-2 hours after eating, my symptoms would significantly increase.

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.

8 hours ago, BuffRockChick said:

I laid down in bed (panting) and he touched my skin lightly.  It felt unusually intense and uncomfortable - I jerked away and batted his hand away! - but the sensation went away in a couple minutes when my heart rate returned to normal.

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.

1 hour ago, DizzyGirls said:

I know she's got slow motility

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.

11 hours ago, KiminOrlando said:

@marcus99 I am sorry you are having such trouble finding help in Netherlands. As difficult as it is here in the U.S., I can't imagine getting treatment in other places. Do you have government run healthcare or is it still private healthcare? I guess that is why we have healthcare tourism here in the U.S. People with money come from overseas to see our doctors.

I hope both of you feel better soon.

Kim 

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.  

10 hours ago, corina said:

Hi Marcus! I'm from the Netherlands too and am working with a great neurologist who is very familiar with POTS and is on our Physician's list! You can find his info here:

http://www.dinet.org/physicians/?advanced_search_submitted=1&csrfKey=7e73563a7f0e643c61a7fe1691e946ad&content_field_7=Gert&content_field_5=van Dijk&content_field_9[1]=Neurology&content_field_17=&content_field_1000=&&&sortby=primary_id_field&sortdirection=asc&record_type=all&time_frame=show_all

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

7 hours ago, Bladerunner said:

Marcus99,, I was diagnosed with pots in December . It has caused me to be way less active and not able to work . So yes is the answer to your question . I believe my pots has worsened because of not being active enough and not exercising.  I just dont feel well most of the day. Been trying different meds but none of them have really worked for me . So exercise is the next plan for me ..

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).

7 hours ago, yogini said:

Funny! A sandwich here is two pieces of bread plus fillings like meat and cheese, plus mayonnaise, etc. 

Ask your doctor, but I think it probably would not be healthy for most people to eat so much plain bread in one day. But  I have a much easier time digesting foods other than carbohydrates (like bread), so I understand why bread would be a main staple.  I think it is probably not POTS itself, but a co-condition which affects your ability to eat - so I hope you are able to get a diagnosis.

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

2 hours ago, kalamazoo said:

The important thing about food is that you eat a variety. You need multiple sources of vitamins and proteins from different sources. As long as you're supplementing your diet with vitamins, shakes etc you should be fine. People usually lean two ways when it comes to dieting, KETO which is high fat low carb or low fat high carb. Your body needs 1 or the other to sustain itself. This is exactly what my nutritionist/dietitian told me. I'm vegan and have been for a long time and recently moved over to low carb moderate fat. Obviously everybody needs time to adjust to dietary changes but do what works for you but remember you need something to sustain you. 

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  

10 minutes ago, Bladerunner said:

Wow that's great to hear . I am in the same boat ,my hr is about 80 seated and 150 standing .it drives me crazy . I haven't started exercises yet because I feel like garbage all the time . I will most definitely will start soon . How long have you had your POTS ? 

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?

10 minutes ago, yogini said:

Maybe you mean a different word than sandwich?  A sandwich (in the US) would at the very least have 300 calories (often much more) and generally lots of fat.  30 sandwiches would put you at 9000 calories per day not including other stuff you eat. I  would check with your doctor about your fat intake if it is outside of guidelines.  Some people with dysautonomia get sick from eating a lot at once (it lowers your blood pressure) and also have food intolerances or gastric conditions, which might be factoring into to your ability to eat things.

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

13 minutes ago, Bladerunner said:

Wow ,great food prices over there . Here in the usa that many sandwiches would cost a lot .

I would just do a basic blood panel to see how your kidneys and liver are working on your current diet. But if you feel good ,probably not much to worry about . Is your exercise program helping with your POTS symptoms  ?

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.

2 hours ago, Bladerunner said:

You really eat 30 sandwiches a day ? That must be expensive . Why are you eating so much ,are you into bodybuilding?  

I would say do whatever makes you feel the best . If your worried about eating such low fat diet ,just get regular blood work done. You don't need a doctors order anymore to get your own basic blood work done .

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.