MikeO

i may just look into this. sleep for me is a issue for sure.

Interesting articles. Had the preload talk with my Cardio Doc. He does get that the postural drop in blood pressure causes Shortness of breath or laboured breathing "no blood for your heart to pump due to pooling" thus affecting preload (pumping a dry heart sac). Also touched on why i don't like the tachycardia episodes that i would get while hardly moving causing me to be short of breath and lightheaded "lack of filling time for the heart" Not sure how much my Ranolazine helps with any of this for me but it does improve diastolic function (diastolic stretch) and favors the pns function of the heart and have seen improvements. Well i wish there were new treatments for some of this as they have not changed much over the years and seem to be blanketly indicated for a number dysautonomic issues.

This is a great idea! i need a tag but just too much to put on one. I will look into it.

A Instant Pot. Love this thing. A custom Dysautonomia printed carry case might be worth it.

so what did you do for the other 59 minutes in between scans? could you leave the lab area?

Happy to hear you are making progress....keep up the good work

Haha feel this coming on Thanks! Sure i don't see anymore TTT's in my future. Three was enough.

Bit nervous as i heard it takes 4-5 hours. scheduling asked a ton of questions like if i had a pick or port, special needs and if i was a diabetic (sigh) they also said they will make me eat before the test. I just hope i do not throw up. They mentioned something like bread, egg and i forgot what else. Darn brain fog. Just reaching out if anyone has had one seeing a lot of us have gastro issues.

yes it will alert you. also has some custom alert one can set as well.

Love my instant Pot. Cooked all three items on the plate in the pressure cooker.

Bit more info for inquiry minds. I can see the insulin is taking the edge off my meals. will see if the endo wants to do a insulin to carb ratio change.

I would think that a neurosurgeon could look at this but don't quote me. i also get a feeling one would need some sort of pre-diagnosis to be seen.

Thanks to a nurse friend of mine she gave me 3 sales samples they get from the Dexcom reps. so good for 30 days as we try to get insurance to pay for a more permanent arrangement (on insulin) First full day of monitoring. lows on the 18th were not real but the quick drop on the 19th was and i did start sweating. i know it because i woke up and went to the bathroom.

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.

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."

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

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)