kisekis

I watch people make youtube videos to raise awarness of POTS, dysautonomia and i think its great that people do that. I wish there are people in my place that can do that/start a community but its hard to even find any

If you can also make it, i think it will make a difference too to you and others 

I got sick when i start junior high a few years younger than you 15. Infection and puberty goes along with it/makes it worse, i dont know which.

So its really sad that i have to lost so many things. 

19 hours ago, Pistol said:

In certain treatment refractory patients they do IV saline - my specialist gave me an order twice for 1 l NSS over 2 hours weekly. It did not help me - personally - all that much but 16 - 24 hours of fluids at 125 ml/hr has shown great improvement. Currently I have an order for 1 l LR over 6-8 hrs. 

Thanks for replyinf

So must get infusion all day? 😮

Seems hard for me cause cant stay at hospital all day/for long and so often

You said the first one didnt help you but its the normal standard recommended instruction for pots?

Whats the general average total litre of saline per day? And how often/how many days have to get per week?

Could someone help how much you should get a week for iv fluid?

I try to find an info but still isnt clear.

Such as how many bag/litre per week? How often/how many days per week?

If you have to do it for long i think its hard if you have to keep going to hospital and getting infusion almost everyday for hours. Wouldnt that caused trouble to the veins?

Otherwise you require to buy the device at home?

I read many says it related to dysautonomia. Dr Gupta also explain its because the sympathetic nerve problem and during sleep it will get triggers. I get this too a lot.

But im confused cause in POTS info they dont list this as the symptoms. So people only know that pots only happens when standing. Not supine. So if someone get it while laying down they will say they dont have pots due to it 

It confused me???

@Pistol @StayAtHomeMom

Thanks a lot for the reply and info. 

For the cathecolamine test, shouldnt the symptoms have to be, epinerphrine rush everyday? What if i dont get it but only occasionally, there are times when i dont get it for days?

I usually get surge contribute to sleep/when sleeping.

The ANA test brought me back when googled and read many research said that betablocker could raise antibody/autoimmune. When you test it do you take long term BB? I worried since it said BB could induced autoimmune. And wonder if mine test positive becauase of it. But i also read that autoimmune could be the culprit of pots. But it came out positive low though its long time ago.

May i know the tests in autonomic testing are?

Neuro evaluation, nerve study, those arent familiar to me.

Stress echo test seems important but i never got it. Only the ecg stress test.

An autonomic specialist supposed to be different than the regular neurologist right?

Seems like the regular neurologist more knowledge in pinch nerve, stroke and stuff like that. At least thats what i see here

Thanks everyone for the reply.

Im still confused.

@joiedevivrehow to rule out the condition?

I can only get standard test many advanced test arent available

@StayAtHomeMomi see but thats also depends on what we eat/consume right? so theres no baseline to see how much it affected the result? We just eat/consume our normal salt, potassium?

@bombsh3ll i see like you said its also depends on how much we drink. Shouldnt there be a baseline for that? Or we should write it down...?

Is it the standard aldoesterone blood test and plasma renin blood test? Or the more advanced ones? Cause people say test like ace angiotensin but i dont think its available. 

Hello. I have questions related to sodium and potassium. Hope there will be some answers.

So for urine 24 hours test wouldnt the result depend most on what we consume? How would it check how much we can ratain water. Also if theres no baseline on how much we should consume during the test?

Im also confused finding the right ratio for potassium sodium since the serum test isnt reliable. Since theres also research and discussion here saying salt load will decrease aldoesterone(bad) and decrease potassium, increase adrenaline cortisol. I get complicated result from salt load.

Also balancing mineral is complicated too such as magnesium calcium. Cause too much of 1 could cause problem. I also read there are a few people here who doesnt do good with salt load depends on their condition. 

Trying increase each one and feel the difference in our own also hard for me cause my body is just weird. Hard to identified.

Anybody has an idea/tips? I cant get the blood volume test and mineral in cell test.

Would the 24 hours urine and blood sodium potassium, plasma renin activity, aldoesterone blood test reliable to detect low blood volume, electrolyte issue?

Thank you for whoever reply

Anyone.

@Pistol @StayAtHomeMom @KiminOrlando

Thank you so much for the helpfull information. Unfortunately i dont live in US. I live in southeast asia some doctors ive seen dont know about pots. I just got betablocker. I try to get test and diagnosis. But i dont know which test available here. Maybe just the standard one. I read about autoimmune test, aldoesterone renin, blood cathecolamine, urine electrolyte? Which are the important tests? I usually just check for serum potassium sodium magnesium calium. 

Was pots also affecting adrenal insulin? Cause sometimes i get hypoglycemic symptoms randomly but it doesnt happen a lot.

My vit d is below normal and anna test is possitive 1 but doctor said its because im low n vit d. 

I thought dehydration sign is crack lips? Cause i already drink tons of water but still...

i havent got endoscopy cause im worried about the anesthesia 😕 i go on a diet that stay away from problematic food.

Hello..

Can i get some enlightenment please..

I have pots condition more than 15 years. it happens quite a lot too. (HR 30-40bpm more than 100bpm from supine to standing)

But there are days/weeks where it doesnt happen or it got better. when my overall condition better/more fit/healthier. 

But when i get a little unwell/worse it appears.

Problem is the condition is not known here, theres no specialist of Pots. So im clueless.  if i try to talk to them they usually say i dont have pots cause sometimes i dont get symptomatic.

also im confused cause the heart issues often happen when sleeping/after sleeping/woken up. Although i read that dysautonomia can caused it too.

Other than pots i also have other issues like. Muscle joints pain, digestive issues, food/chemical sensitivities/intolerances, tightband on waist, constant cracked lips, apnea, temperature issue, vertigo, insomnia etc.

Thank you for whoever reply.

i havent been flying for so long. last time i wasnt sick. and after i became sicker so many bad experiences with things because of my malfunction condition. which cause me to lose confident. cause of how vulnerable i am. so trying new things worries me of the risk of the unknown side effects. for flying the anxiety is already makes it bad + the physiology issue.

does flying with plane and diving with vessel caused the same air pressure?

im not good with air pressure.

@carrie maybe it was the gaba or theanine?

ok. i do hope so.

country: Indonesia.

id be happy if there is, though i doubt it.

the problem is i cant find any pots specialist here. thats why i ask for the article that seems credible to show to the doctor. i did record the event with video cellphone and hr monitor.

also since many people here experience and have knowledge about pots i ask the opinion about my symptoms.

excuse me for posting it.

since i was a child (more than 10 years) ive experienced lots of palpitation. and sometimes i get palp, sound blood rush, blackout from sitting/lying to standing. lately i read about POTS and try to measure with HR monitor i get rapid 30, 40 bpm+ increase from lying to standing. notice some dizziness/blood rushing feeling. but the increase HR lasted for 2 minutes more or less and then lowering. however i couldnt measure the BP.

the thing is i dont get this all the time. i get this symptoms when my condition got worse, after eating (sometimes/certain foods), lack of rest.

and i dont get passed out when standing and there are times when i dont get problem standing, walking.

also when symptoms flare up i get rapid excessive increase of HR from only changing position on bed/slightest movement, activities.

i need opinion could i have POTS?

if i might have. could someone help find paper/article seems credible that can reinforce the diagnosis to the doctor who doesnt know about it.

thank you for whoever reading and posting. id really appreciate it. hopefully there will be some people who could give me inputs.

please read this!!

which test did you get? d 25 or d 1.25?

also some people have low d 25 but high 1.25 and this could be problematic when supplementing with vitamin D

i also got really low result of vitamin d 25 but unfortunately couldnt get tested for 1.25 and this is put doubt in me for supplementing since if i have high 1.25 it could be harmful.

low d 25 could be caused by many things/health issue. n some people convert d 25 too much to d 1.25 causing it to be low n d 1.25 to be high.

I think you probably should seek a doctors advice. Im not able to give advice, just here to comment on what is helping me. My hope is that it will help others.

Issie

pleasee helpp i think its still related..

can wbc reduced from (almost) vegan diet? my wbc was reduce now is 3.55 usually it was high or higher though i havent checked for months and dont keep a record but found my result from january 2013 which is 6.5

please dont freak me out more since i already read bad info and pretty concern. im thinking of going to hematologist but im worried now.

lately around a month i do lack of sleeping, eating and lose weight pretty much in a month (not because i want to lose weight but because i do have food and chemical intolerance i usually cook by myself but i couldnt cook more lately so i had to eat less) and mostly eat carb some veggies 1-2 eggs only per day. fish, soy twice a week. but im worried if its because of that only or other cause.

just to add: my rdw also high but its always been high. and my temperature is low though its lower recently also bp low but now lower. my hb is normal although it was shown high last week also high (40) ferritin eventhough i dont take iron booster usually its low before.

what do you mean pots symptoms if BP abd HR normal? if BP and HR normal wgats wrong?

btw i also get that too i thought its adrenalin or cortisol

i see. actually im already close to the diet cause i mainly eat veggies. but still carbs (potato, red rice) since eating veggies only tend to get hungry quick. but i still eat eggs, sometimes fermented soy, fish, fruits(low fructose). and i use olive oil. sometimes a little sesame oil. thats my diet. i did it cause i got bad reaction to many food.

but my issue with this theory was magnesium since i just bought a bottle of supplement that i heard positive things from people and hope it could help (also calcium)

also protein source.

do people who have biofilm will get low lvl of magnesium in blood test? and calcium, iron?

i know about colostrum used to take it years ago but stopped cause theres a controversial of it

also theres a product called immunocal i used to take but stopped and dont know if i should retake it or not

is there anyone here from singapore or malaysia?
well i was hoping i could find some people.

if there is please let me know

what about the people who cant get the test if its not clear than its not beneficial to avoid magnesium, calcium, iron if its good for them?

do people who have it will get low lvl of magnesium in blood test? and calcium, iron?

what if the mag, cal isnt low?

anyway isnt lactoferrin good to fight biofilm but its from milk.

this similiar like candida diet but what they need also what us need.

i know the rubber band technique too.

what about meditation.

it makes me notice more of my heart beat though which is a dilemma when having palpitation.