MikeO

Thanks @Sarah Teeyes the insulin is helping greatly.

Hi @Derek1987glad to see you are trying a change to see how it works out for you. I don't really have a theory in regards to why caffeine interacts with your coreg. I can share that when i was taking a higher dose of metoprolol (100 mg er) which is equivalent to coreg 12.5 bid it had a negative affect on me (made me pass out more) 25 bid of coreg is pretty high IMO. i take coreg 6.25 twice daily (all the beta blocker i need to do its work) and i have been fine. Keep after it.

Many data points do paint a picture or trend. bp's will do the same as other trackable points. here is my BS data and is telling.

Not sure what the narrow pulse means. my doc's don't even use the term albeit they are aware. They do recognize my low diastolics as a stressor or when i have issues. i for sure would take a 101/90 but not a 101/60. the 101 systolic does not affect me one bit and do hit the number often. My norm is 145/90. I can see heart rate playing into this. it is a bit of a go to catch vitals for sure. Best and keep after it.

Oh @Jyotimy parting MyChart with my faint clinic i pointed this out as not effective while being aware is one thing (usasul drink more water and get up slowly) helps staying out of trouble in the short this is not a fix. I also complained about what subtypes of nOH or orthostatics i have and the response is alway does not matter treatment is the same which is BS. I tried to get tested for this but since the dysautonomia clinics have closed in wisconsin so no luck. Sure would like to see someone with a second test while on a beta blocker. I have had three stress tests while on one and was to show the med dose is effective. I also get sudden changes in blood pressures but have stabilized as of late. not sure why but my routine is working. Low blood sugars can cause this as well along with some meds. my worst combo was metoprolol/lisinopril. I am conceived that i have some other issue going on (still sure it is some form of ANS neuropathy) but little did i know that my nOH (stressed over this as MSA and parkinson's) is the primary cause and the secondary is diabetes and ripped faint for not picking up on this. just mentally taxing for sure. what we did find (endo, gastro and PCP) is i do not absorb nutrients like i should (B12 and D) was deficatant for sure. I have been treated for SIBO and has helped big time and my insulin therapy is working to make life better. Faint was adamant that i never lay flat as it would cause supine blood pressure but this is far from the case and was recorded at my last procedure. one more ding for them "drink more water!". but off my feet will help bring down vitals (BP's and HR's) PVD issues i am guessing? At the start of november my orthostatics picked up a bit but a few antihistamines pretty much knocks it out (vasodilation) sure i am sensitive from this and to be honest a bodies normal response to a sudden sustained drop in BP mimics hPOTS and will at some point will cause a bad event (tachycardia, weak buckling legs as well as seizures) even in a healthy person. just my 2 cents. Please keep after what bothers you even if it is one symptom at a time.

you can post the link to this. is your dad able to pull the page up?

Well blood sugars eb and flow. my fasting BG's do hang out at 105 again not saying the blood sugar is the issue but for some unknown reason i struggle at controlling them. All i can say is a CGM is just a tool to help and most insurances will pay for a diagnostic version. what we do catch on the monitoring is low BG at times. I suspect the lows is a issue what sparks orthostatic issues. i have been told nOH secondary cause is DM. More pushing for sure

have seen this and even the faint clinic i fired 10 times over knows that the lack of cerebral perfusion is a stressor. still comes down to what works for a person. weather being over meded is a cause or some other issue like clogged arteries, vascular or a ans issue. I still see no fix in the dysautonomia outside of trying stuff to improve your well being. some of this IMO can be just off the wall.

@MTRJ75best i can say is going into the winter months i get a runny nose and become a bit vasodilated a antihistamine helps. dehydration does also get me from time to time more so in the colder months and will produce some cramping. I routinely get up in the wee hours of the morning to take in fluids. Also during a flare up my CGM will report low blood sugars. not sure how relevant this is but is some thing to look at. I hope you feel better.

Keep at collecting symptoms/data. I have had to do this a number of times to prove there was/is more going on than meets the eye.

been a while so here is what i made for dinner last night. the pork rub is awesome. 2 pork tenderloins about 1 pound each 2 tablespoons brown sugar 1 teaspoon smoked paprika 1 teaspoon garlic powder 1 teaspoon onion powder 1 teaspoon chili powder 1 teaspoon Italian seasoning 1 teaspoon salt 1/4 teaspoon pepper or to taste 1/4 cup butter cut into pats Chopped parsley

this one for me is a number one cardinal rule. get a bit dehydrated and expect to have symptoms

I have spent the last two years working on what causes or is the stressor in seeming sudden changes in my world. I have been picking them off one at a time (i reject its just the way it is) and end up laying in bed for 3 days. I can say i have made huge progress. not perfect but is obtainable as long as i stick to the plan. Would love to just blame dysautonomia on this and give up but is not always the root of the issue. devil is in the data.

Yes i have sorted through the coat-hanger syndrome. it is a symptom of nOH as well. was not sure if i was feeling just stress tension or what but it cleared up once i was put on Ranolazine. "nOH also causes other symptoms (e.g., shoulder heaviness [“coat-hanger syndrome”], orthostatic angina, and dyspnea)." https://www.sciencedirect.com/science/article/pii/S0002914920301028#:~:text=Clinical Signs and Diagnosis of nOH&text=In addition to symptoms of,orthostatic angina%2C and dyspnea).

Good luck and hope you stick with this. Kinda thought you were taking a ACE inhibitor for the OCHOS. My Endo and nurses are also part of the rheumatology department. They did cite my splotchy skin and did the antibody testing that came out negative. They do administer IVIG infusions but i am glad not to have to go down this path. Best

unfortunately those of us with nOH don't experience the sympathetic activation and when we do it comes in with a vengeance at the last moment. I am just happy i am on a good beta blocker. i know folks that have coded while laying on the floor with hPOTS seizures and yes i do get these.

my legs will buckle during a strong orthostatic event. i have been told this is common for folks when the brain loses cerebral perfusion. if i am quick enough to recognize symptoms just sitting down will stop the event from progressing further.

reminder and help Dinet and make a donation.

I donated what i can. I would suggest helping out as Dinet has been a helping force out in the Dysautonomia community.

This is also true for other Dysautonomia types (i.e...PAF, nOH, OH etc...) as folks with these will also have the syndrome symptoms that POTS folks experience.

Diagnostic Criteria The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension. nothing more.... I do not have POTS but am considered nOH but yet i have the same group of symptoms that POTS folks complain about. so do i get diagnosed just by GI issues? and call it POTS or nOH? Yes IMO term POTS is misused.

i get a feeling we don't even have to quit. fired my faint folks three times in the last several weeks and their billing was refused. money talks.....

Yes, but i do not panic. best i can say is to see a Gastro Doc and discuss symptoms. I was just treated for SIBO and it helped greatly but i get a feeling SIBO is not popular term in the dysautonomia world as it does not come up that often but it will mess with folks more than one would think. I have seen IBS issues with folks but not so many resolutions to the root of it. See a gastro doc and good luck.

Just to add a recent (2023) NIH paper regarding SIBO https://www.ncbi.nlm.nih.gov/books/NBK546634/

So is SIBO one of those new conditions that is now finally being recognized? I just finished a 1st round treatment for SIBO but did not realize it might be commonly overlooked. I also looked at some of the larger health care providers in the state and SIBO is not even mentioned. Thoughts?