MikeO

take smaller bites and chew well as. this does help. beats putting your steak dinner in the blender Lol

So yes i know what you are trying to convey but the BP data has been helpful when dealing with providers especially ferreting out the postprandial hypo and drug treatments albeit i don't need vitals to know when i am feeling orthostatic (have this down for sure). Blood sugars i need to track. i do know when they are high cuz i become symptomatic but the lows i get a feeling i lost my ability to adequate recognize them. excessive high BG's i need to keep a eye on as well while elevated.

This one is tuff. I have fight left in me. I have the presyncope down and even can tell you the BP's when this happens (low diastolics ) despite a normal systolic is a indicator. sure when i feel a low my bp's are not what i record but then i do not want to faceplant trying to get the numbers. get into the 60's diastolic wise is consistent. sample event is a 123/62. upside i have learned how to recover from this.

pretty sure OMA preached this to me. Chew 32 times. I have not been doing it.

sounds like a fun day! Exercise is always better when someone else does it for you Lol.

well more to add to this. can't wait to see endo in a week.

Over the last few years i have been struggling with a unknown cause of syncope. while i have made great progress in understanding my orthostatics and adjusting to it along with everything else i have found that i have health wise the syncope cause has been elusive. I have been haltered numerous times, had a ILR put in, two tilt tables tests, stress tests, echo's and tracked my blood pressure to no end and nothing popped out as a cause to the episodes. Last year a smart university dietician suspected hypoglycemia and had a OGTT test ordered which showed a atypical glucose response which got me a diagnoses for diabetes. so the DM diagnose open up the door for support. right off the bat i had a CGM put on so we could see what was going on and it did clearly show periods of low blood sugars (was dismissed by the DM trainers sigh) but at least i was able to recognize symptoms that came with the lows (suspect i am a bit hypo unaware) but feeling anxiety and walking like i am drunk is consistent. The CGM also showed that if i eat the same foods i can either go low or go high which is confusing. Blood sugars are about as liable as my HR and blood pressures. Not sure how much a dysfunctional functional autonomic system (has been suggested) affects my blood sugars but it seems to me that my system either pumps out a ton of insulin or at times none at all. So i have trended my blood sugars (1219 sticks so far) and have seen the highs and low but earlier this week i caught a really low reading (23 mg/dl) started feeling anxiety and drunk so i immediately went for corrective measures and by chance had purchased some glucose packs. so took the pack and followed it up with a half sandwich and my blood sugars recovered 106 mg/dl. This is kinda scary and i get a feeling when i have gone full syncope it was BG related. I feel i was working on automatic during the low. i don't even remember where or what i was doing prior (which is consistent when i flat out pass out) Not sure if other folks have seen or have to deal low blood sugars or have any tips

Good presentation! Unfortunately i don't have POTS so...i continue to look for answers.

Update. we made some progress with some of the spikey weight gain. Cardiology is holding off on the lasix and has me trending my just out of bed numbers. last six days i have kept it stable at 179. What i have done was reduced my water intake and only drink if i feel thirsty or a bit dry mouthed or if my urine is on the yellow side. during the day i have only seen a couple of pound variance so IMO something is working. not sure why the increased fluid intake affects me or why i retain fluids but last week i did have a new high during the day of 190 so i hope i am on the right track. Last two evenings i switched what i have been drinking to a flavored water drink mix (stevia) and have made it thru the night without the need to get up and pee multiple times More to come i am sure.

well i find when i get spun off from a flare up, illness or finding out i have one more issue to deal with is that when i am ready is to get back into a routine. I start with my moring's so a cup of coffee and something to eat then into the shower right away (gets me moving) and whatever follows after like house chores, meal prep and even some treadmill time. I find the longer i wait the harder it is for me.

Easy no fuss breakfast meal. Eggs are cooked in the instant pot on high pressure for 5 mins then immediate release and into a cold water bath for a couple of minutes. eggs peel really easy. cleanup is a breeze.

Absolutely!

One more healthy and easy meal to make. the black beans i did cook in the instant pot. 1 cup beans and three cups water a pinch of salt and a small onion. 30 mins high pressure and then let the pot sit 30 more mins before relieving the pressure. Did not spike my BG at all.

yeah this one hits home. again there are players that write this stuff up and then don't practice it. NIH write up's just suggest it needs to be further investigated. just my 2 cents worth.

Good luck!

Can't say that i have to deal with OI per se as much as getting fatigued or leg discomfort from standing too long. My biggest problem is that i get transient swings in blood pressure and when i go low i end up waking on on the floor. I can have bp's that range from 160's over 102's down to 74/50 while standing. my heart rate can be just as messed up especially with the low bp's. can go from tachycardia (115's - 130's or so. i am beta blocked) to never budging from 86 no matter what my bp's are. i just had a sudden low when i was standing in line at the grocery store (felt it) so i sat down on the floor and pretended i was looking at a magazine on the lower rack.

Been here as well...

@JCO My BP is very liable. from what i have read it is not uncommon for dysautonomia folks to experience this. I have not done many poor man's tilt tests but have seen the elevated diastolic pressures and then see it come down substantially. One example was in the clinic when they did a 5 min supine measurement and i was something like 168/102 and the three measurements while standing. last reading was 120/80. i also routinely squeeze a 162/102 and the Docs office then when the nurse rechecks a bit later i will pull a 145/85. The systolics look really good. if it were me i would spot check BP's for a week to establish a pattern and as always if you are concerned i would reach out to his clinic and ask a nurse

I agree throwing meds at orthostatics has its downside. While i am not a doc i can tell you med side effects are real but when needed do help. Post is too vague but i would talk to your health provider.

By chance have you been tested for OSA?

Know this one first hand. I do give my primary and cardiologist credit for trying to help. both recognize dysautonomia or a better word autonomic dysfunction. both of my TTT showed disimular results. my cardiologists complaint is that the faint clinic i was engaged in should have been helping. at this point it is clear they want nothing to do with me. after his phone conference with them and he ended up taking a lead to get more testing done, is telling.

I heard of it just have not seen it in the store by me. I will look it up online and see if i can make it at home.

as @Pistolmentioned and from my experience hearing changes can be a heads up. here is what a young gal wrote in a POTS writeup. i can send the link in a message if anyone wants it. Hearing; heartbeat in ears, whooshing/ waterfall/rushing sound, ringing in ears, can’t quite hear or understand people talking to you or they sound far away, sounds are really muddled

so sorry to hear this. I have had some not so good go with meds but not with a CCB or beta-blocker. I have been put on plavix and ranolazine that caused some nausea and diarrhea but passed a month later as i got use to the meds. systolic bp will go up when a bit stressed. if you were to look at my blood pressures you would be amazed. so a few bad squeezes may not be concerning. Over the years i learned when to bail on a drug. "lisinopril cough" is one. breaking out in hives and tea like urine is one more (ARB meds). GI drugs like metformin (severe cramping) is one more. Pyridostigmine is one more but apparently i have a love hate relationship with the med so i am back on a low dose that i can handle. It's not out of the norm for dysautonomia folks to take several weeks to adjust to meds (has been my experience as well) and GI disruptions are common also. and to be honest i do not even ask or look up side effects with a new med or stress over them but just let them happen if they do occur (out of sight out of mind) and if i run into issues report them and then act Good luck

Made a pizza. crust is a store bought one. pretty much can throw anything you want on it and still works. The two pieces did raise my BG (160) not the worse i have seen.