MikeO

@Sarah TeeI have seen the IVG drips used and have helped some folks but then has been prescribed as a hail mary as well. getting tested for autoimmune issues is telling. Over my time i have seen the body types that are indicative of a immune issues just like type 1 diabetics as well as some suggested POTS folks.

I hope you can get some blood work done to ferret out some of this. My endo did look for some autoimmune issues but was not all inclusive. for some reason i get a feeling he still thinks i am more like a T1 and not a T2. he keeps testing me.

Best of luck with your trial. don't know what else to say. Not a whole new therapies that are available and most seems to make one feel more ill than helps. been here.

Keep working on what bothers you is my best advise. that is what Mayo does if you can even get in there.

27 minutes ago, Sarah Tee said:

“Overview of Austonomic Disorders”

https://vimeo.com/185276627

In this lecture, Dr Grubb gives a lot of interesting background to our knowledge of POTS.

Note that he does have a slightly quirky sense of humour. Stick with the lecture. By then end you will probably want to give him a hug/medal/Nobel Prize.

I was especially touched by the way he must have really listened to his patients, and picked up on the unusual things that were happening, rather than dismissing it all. A true sense of scientific curiosity.

Another very interesting section covered potential wrong diagnosis of epilepsy.

Is a old presentation (2016) I do like the attempt to help but i am being realistic there is no new (meds or testing that helps). More like trial and error approach to what bothers you. in most cases what bothers you is telling or a root that is the issue that improves your quality of life. Mayo takes the same approach.

Thanks for sharing.  

Low carb alternative to one of my favorite foods....Hot Dogs

17 hours ago, BaPon said:

Phosphorus is not typically on a metabolic panel. It has been run by my nephrologist (I have chronic kidney disease) in the past). The critical low (1.0mg/dl) was found when I was in the ER as part of the cardiac work up. They often draw a magnesium level (along with troponin levels, d-dimer, etc) and the ER doctor ran the phosphorus along with those. Now that I am stabilized and home they are having me do a 24 hour urine collection to get more accurate measurement. 

Happy to hear you have stabilized. 

4 hours ago, MomtoGiuliana said:

Mine has on occasion frightened me (when in a flare).  I don't know that a smart watch is considered medical grade.  I wouldn't rely on it to be entirely accurate.  I would talk to your dr about whether it's useful for you to use it for the purpose of tracking hr and bp for POTS.

Good advise....

1 hour ago, BaPon said:

Has anyone had low phosphorus along with low Vitamin D? I’m still waiting on Vit D test results. But I was hospitalized for hypophosphatemia (1.0mg/dl). Just wondering if anyone else with low Vitamin D has had issues with phosphorus levels. 

Do they need to test specifically for phosphorus? i did not see it come up on my metabolic panel.

2 minutes ago, little_blue_jay said:

Sorry, what is that?

short explanation.

Neurogenic orthostatic hypotension (nOH) is a condition in which the autonomic system, which controls the automatic functions of the body, loses the ability to properly regulate blood pressure as one moves from sitting or lying down to standing, or when one changes positions quickly.

6 minutes ago, little_blue_jay said:

What is it that you have, if not POTS? Something similar I take it?

I was diagnosed with nOH 

14 minutes ago, little_blue_jay said:

Can you clarify what you meant by not lying down as it would "cause supine blood pressure "?  Cause it to go high or low?

Sorry the clinic said it would go high as it is a trait of neurogenic orthostatic hypotension. to be honest i have only seen high bp's a few times when lying down so i have disregarded the recommendation.

19 minutes ago, little_blue_jay said:

Also what did you mean your orthostatics picked up , they got better on antihistamines,  or worse?

so when my body starts producing histamine from being sick, allergies and what not i can feel that i my vascular system is vasodilated which i will get notable drops in blood pressure when standing up. even blowing my nose will cause me to blackout. addressing the histamine with antihistamines usually works for me to get back on track (i do not take it often or long term). not sure if antihistamines are contraindicated for folks with POTS (i don't have it) but will get postural orthostatic tachycardia short term (food is the stressor).

34 minutes ago, little_blue_jay said:

How are you doing now?

over the last couple of years i have made huge improvements one change at a time.      

well from my PCP's office.

Here you go @Pistolper your request  x-mas breakfast. not pretty but did taste good.

3 hours ago, Water Lover said:

Mine has been low—20 when first tested. My GP put me on 800 IU a day (though I upped it myself to 1000 since those capsules are easier to get). Over the first six months it made it up to about 25. I don’t know what’s happened in the last six as I haven’t had any reason for blood tests. 

Even at 20, my GP was not overly concerned. That was before my POTS diagnosis, when we were trying to figure out what was going on. He said that at that level he would recommend supplementation, but he thought my levels were unlikely to be causing any of my symptoms. I’m interested that some of you are being supplemented so much more aggressively. I think my GP is pretty conservative about supplementation, etc.

My test was at 14 so my PCP was concerned at what point is a good D value well Dr Google is not the way to go. i did improve to 25 with 50K  sure he will stay the course. My Endo is concerned about malabsorption and i get a feeling that being treated for SIBO helped B12 went up. again not a popular dys symptom but the folks that complain about GI issues should be looking elsewhere IMO.

@Sea otterover doing vitamin D will make you feel ill. my Cardiologist did ask for a metabolic panel and my calcium is 9.5 right in the middle of normal. 

22 minutes ago, MTRJ75 said:

Mine is low, but goes up pretty quickly with supplementation. And 50Kdaily  is a whopper of a dose. Are you sure the product you're taking is high in bio-availability. Most progressive docs I've spoken to prefer a liquid supplement (under the tongue) to pill or capsule form. 

dose is 50K weekly. not sure what the vitamin D is just that it is a prescription from the pharmacy.

I will be danged my vitamin D was deficient 3 months ago (14) and have been taking 50,000 U's of Vitamin D since and my blood work only went up to (25) so still low today. Docs are going to kick my but. don't get it....

Thanks! @Jyotihad to prod an update of of them  very exciting news....

46 minutes ago, Amyschi said:

Thanks to all for these replies!

I do have a relative that has GERD's and it is not because of dysautonomia. she does elevate the head of the bed to help out. i do not recommend wedge pillows as they are a bit problematic.   

well back on a trial of lasix. weight went back up again so to debug the issue we are going to try and dump some fluid. high has been 196 just out of bed (sigh) norm has been 179 cardiology also wants a metabolic blood draw after a few days on the diuretic to see how my kidneys are handling the med.

doubt this is dysautonomia again not all our issues are. all i can say is keep pushing for your health care.

I have used Tums before when i would get a acidity stomach or acid reflux. just not very often or long term. what i have done was to identify the foods that spark a flare up. most are acidic foods like tomatoes or sauce, salsa and drinks like lemonade or some of the sports drinks that use sorbic acid even the hydration drinks will do it. Mike hard lemonade is the worst for me. never again.

My doc has listed some of these as a food intolerance on my chart. 

Something to consider if you have not already.  

looking forward to joining the facebook page.

28 minutes ago, Sushi said:

You might ask for a 4 or 5 hour glucose tolerance test. They give a measured amount of glucose and check your levels for 4 or 5 hours. It was very telling for me as there an emergency metabolic rescue mechanism that will restore levels after a deep dip so normal glucose tests don’t catch the pattern. Mine went down to 40 during the test. Now I control it with diet, being sure to eat regular protein and complex carbs snacks during the day and sometimes in the middle of the night. I also bought a home glucose meter—easy to use.

I would have not even considered a glucose issue for me was it not for a smart UW dietitian. The OGTT test was telling. I do hit lows when sleeping and during the day. CGM just confirms this. I know this is not a popular dysautonomia diagnosis but it is real and i suspect some sedentary folks have some sort of insulin intolerance issue as well.

Data speaks for itself and is worth pursuing as to picking off one more stressor. 

interesting. i would have never even thought of looking at this. thanks for sharing.

2 hours ago, Sarah Tee said:

One thing to consider is that you can have low blood flow to the brain with normal blood pressure and heart rate.

However, I think you should look at your blood sugar. Dizziness can be from high or low blood sugar. There is a rise in blood sugar called the Dawn Phenomenon, for instance. (Not saying you have this of course, just pointing out the possibility.)

Could you get a basic blood sugar meter and ask someone to check it for you first thing? Maybe your sister could stay overnight.

The standard test for diabetes only looks at an average, I believe, so it might not capture fluctuations. Also, perhaps something has changed since you got tested last.

You might want to try isolating which is making you feel better – is it sugar, salt, or fluids? – by trying each one separately. I’d try (on different days) plain water, oral rehydration salts, a sugary snack, and a salty snack.

If it looks like the sugar is what is helping the dizziness, then you could ask your doctor about some testing and perhaps a loan of a continuous glucose monitor (CGM) for a couple of weeks to see exactly what is going on.

Thunder Birds Go....FAB

Low blood sugars are an issue. i think you have hit the issue just might not know it. Have you seen a endo at all? lows for me are a issue for sure albeit they don't happen too often but will become symptomatic for me. 

@MaineDougi have been looking for a app to trend my other vitals like the CGM software does but so far no luck.

i just call dibs on the most comfortable chair Lol....I just keep my holiday visits to a few hours. i no longer host the event. bit much for me.