MikeO

1 hour ago, Macho319 said:

Anyhow they put me on Fludrocortisone

Had a talk with my Doc on this one. Not saying who this helps but he did say this one was reserved more for the low BP folks in their 90's in his opinion. i know it is not for me as i have had a 4 cabg bypass. the drug will raise your bp for sure that's why it works from what i read into it. seen a number of folks that have a go on the med.

Finally went in to the gastroenterologist. visit went well. Did labs right after the visit TTG,CRP,Liver panel and lipase. Aced the blood work but still have to provide a stool sample.

The Dr's initial feeling based on symptoms is that i have SIBO. so to help she suggested using beano or gas-x to help with the bloating. she also is looking at using a selective antibiotic but wants to wait till stool sample results comes back.

More to the story still coming 

Oh @BaileeI did think about you and how you are doing. I hope all is well. I just PM'd you a link to a write up a young gal did in regards to POTS. There are helpful tips and the write is done well. Hope there are some takeaways that can be used. 

40 minutes ago, albertspa said:

Granted, people get misdiagnosed, and, secondary POTS, as well as underlying conditions, are a thing - but it's not like you can't distinguish between POTS and some other condition, if you thoroughly investigate it.

This is a valid point but in the US most of the diagnosis still comes the cardiology departments tilt table tests or just from a poor man orthostatics test and they tend to rely on the heart rate criteria. wish there were more testing clinics available for some of this but we are not that lucky. i am trying to get into one in Milwaukee (2 year wait).

here is a snip of a conversation of the STAT facebook page as to the ICD codes used in the US for POTS and CFS. hopefully these numbers will climb in the future and attract more providers just for the monetary aspect.

" the data i did have that represented ~60% of the US market is for calendar year 2022, where there were ~23k G90.A diagnoses, and ~9k G93.32 diagnoses. That's only for 3 months though, so hopefully 2023 shows a much larger number."     

10 hours ago, Pistol said:

@MikeO Could you please elaborate on this statement? I am not sure what you mean by "perceived (POTS)". POTS is a type of dysautonomia, it is not just a symptom - rather it is CLASSIFIED by a PATTERN of symptoms. I just would like to pinpoint what exactly you mean. 

Figured this would get me in trouble. soo

Postural orthostatic tachycardia is a condition that causes your heart to beat faster than normal when you transition from sitting or lying down to standing up and yes i am leaving out the "S" the increase in heart rate upon standing is the symptom that will get one this diagnoses.

nOH is a drop in blood pressure without a compensatory increase in heart rate so this is the symptom that will get one this diagnoses. this really should be called nOHS

OH is what a drop in blood pressure with a normal heart rate response. should be called OHS?

All three of these examples have a pattern of symptoms that are similar but are defined by specific criteria. these three in most cases outside of medication induced hypotension are due to a autonomic dysfunction (blanket dysautonomia umbrella) 

I will retract my perceived statement but yet some of us will demonstrate Postural orthostatic tachycardia while being diagnosed with OH or more so with nOH as i have in the clinic demonstrated both Postural orthostatic tachycardia nOH. 

Foods seems to play out with folks with Dysautonomia or (POTS). From all that i have read is sugars can aggravate symptoms. Kinda makes me wonder why folks do better with a protein/low carb diet and some folks can handle the sugar uptake like a ORS drink.

Getting the right nutrition is crucial for all. My only suggestion is to watch the sugars and citric acid for folks with GI issues.

Said my peace as i have made progress with my issues.     

@Sarah TeeSome folks with a autonomic dysfunction will have labile blood pressures. seeing that you return to normal is reassuring for me at least. i have seen in the past the harder that my Doc's tried to get my high numbers down the higher my (out and about) blood pressures became and sparked more whooshing (vasoconstriction) and more lows pressures when i would trend that way.

my current meds took me a good several months to normalize for me and my cardiologist is not overly concerned with some highs (just squeezed a 165/97) at our last meeting as he can see in the BP's that i provide that the meds are working (my average BP's are at goal 120-139). Good Luck!

Attached a sample blood pressure.

Haha @MaineDoug just went thru this again yesterday morning. took 4 fingers before i found blood. hoping to get a permanent CGM as i am now taking insulin.

sugar free option would be LMNT

Well found one more article (same data) as @Water Loverposted. was surprised the number of references out on the net for the hormone glucose-dependent insulinotropic polypeptide (GIP) 

https://www.ahajournals.org/doi/pdf/10.1161/HYPERTENSIONAHA.121.17852?download=true 

9 hours ago, Water Lover said:

I found that there is at least one recent study that associates POTS with insulin resistance and suggests that the body’s response to glucose (the release of a specific peptide) may cause the dilation of splanchnic vessels, and thus directly lead to orthostatic symptoms.

I have read a number of times that folks with POTS and Dysautonomia are thought to have some degree of insulin resistance or even flat out diabetes or some other issues with glucose regulation. i did read thru the study provided and what stands out for me is the postprandial orthostatics associated with being challenged with increased glucose (carbs/simple sugars).

Last summer i did get tagged with postprandial orthostatic hypotension so the recommendation was a low per meal carb diet (6 small meals a day) otherwise i would go through a 4-5 hour episodes of presyncope, palpitations and lower blood pressure and then just magically seem to recover. 

what now started to make me think is when i did a OGTT test (500ml of sugar water) at hr 2 mark i became orthostatic at the lab. even with a half cup of (sugar(y) instant oatmeal) and i would feel the drop in BP's but with a sugar free version of the oatmeal i am ok. so fast forward i have started mealtime insulin and have been able to eat a normal 45-60 carb meal and the orthostatics have almost entirely cleared up after meals.

Sure i will be googling my hypothesis as to whether or not if insulin has a direct affect on the glucose-dependent insulinotropic polypeptide (GIP) 

4 hours ago, albertspa said:

What I'm curious about is whether the glucose in ORS (which evidently is required in order to facilitate the absorption of sodium and thus fluids) doesn't compromise the low-carb approach, which is also recommended for POTS management, since glucose is a carbohydrate.

Good point! I can do the salt uptake albeit i don't have POTS. High salt and potassium broths have worked for me as well but the carbs (glucose) is a no go for me. I am nOH and the increasing of the plasma volume does help. can't even argue this one.

20 hours ago, MaineDoug said:

But I’m seeing dangerous BP/Tachy numbers (200/100, 185) so I’m stopping effective immediately and hoping to return to baseline. 

good call! those are not so good numbers.

Well some of this may work for most folks but the glucose got to me. first hint was the liquid IV became sicker that a dog. IMO the WHO oral rehydration is for folks that are dehydrated. drink fluids like normal and you won't need to follow this. 

@Jyotinot sure if you made the STAT facebook web presentation. i do have reservations as to this start up. not even sure what the base station thing is about but if one is that disabled why would you need it.

My take is this is a crowd funded start. pricing is still fuzzy and not set with no clear expectations or proof of viability. I would do the beta testing but will not be willing to pay a dime to do so even my PCP suggested for testing one should be paid.

I am out for now.

2 hours ago, MaineDoug said:

Good Question MikeO! My “Anion Gap” has been out of range for years! To be honest, I’ve had too many serious issues to ever pursue the Anion thingy! 😜

Thanks! and i forgot to ask my primary Haha brain fog. i do have more specialist coming up so more opportunities to ask. it is on my list. 

3 minutes ago, MTRJ75 said:

Yes, the rehydration does seem like the "safest" option. I do plan on consulting several of my doctors before actually trying. 

On the other hand, I've got two arms and two legs. I could try all 4 at once. (Just kidding)

 

Haha you are such a joker....good luck

@Sarah TeeI agree that the pricing is less than desirable given it is only going to be a health wellness device and not a FDA approved one. My blood pressure monitor, heart monitor, and both my blood glucose meters were all just a one time cost and not even near what STAT is asking. only item i pay for is the BGM software that i use $30 a year and that is a reasonable cost for what i get in return.

I also do not like that fact that final pricing won't be known until the actual day they open up and take preorders and then i would have to pay in advance for something that even has not been beta tested yet. for this i am out.

Not sure what the base station mentioned is. i thought the device recharged with solar. maybe just a holder when not in use? @Jyoti?  

14 hours ago, Jyoti said:

So sorry you have to deal with this....on top of everything else!!!

Thanks Jyoti. it's ok only thing is it seems that the insulin is making me constipated.

@Jyotiwill be interesting were the pricing ends up. Not sure if i am comfortable paying a upfront for preorder cost without knowing if the device works yet or what the app really includes.

10 hours ago, MikeO said:

yes i will end up doing this. still getting over the poking myself with a needle.

Well @Pistolsaw my primary today he says no to the thigh insulin pokes. i don't have enough fat on my legs.

16 minutes ago, Pistol said:

@MikeO have you considered rotating injection sites between thighs and abdomen? Like right belly, right thigh, left thigh, left belly?

yes i will end up doing this. still getting over the poking myself with a needle.

@Sarah TeeThanks! I have been injecting in my abdomen. i do get a feeling i might run out of real estate before the poke marks heal up. 

2 hours ago, Pistol said:

If the blood work gets drawn after the fluids were given it can "dilute" the blood to show an electrolyte imbalance when there really is not one. This has happened to me several times when in hospital - they gave me fluids and checked the electrolytes the next morning ( or same day after the infusion ) and the potassium level was low.

Never seen this before "sorry" I have been in the ICU multiple times and they did the potassium drip (yes it is painful) even with a salty IV drip. I do get blood work done every 6 mo even with a experimental increase in salt uptake we have not seen a potassium drop. not saying this can't happen but this is why i like MyChart as we can lookup the data.