MikeO

I know I never seem to present in the clinic or should i say off the TTT table albeit have some smart folks pickup up on it as i try to hide events. All i know is when my cerebral perfusion is low it become a violent event. Still i don't see this becoming a standard inclusion in the TTT's that we get here just for the fact the Docs know this already. I do have to it would help mentally knowin the numbers.

Here at my local provider they now have a specialist and pharmacy that focuses on meds (side effects) or interactions it has been a game changer some peeps. I do still not understand the cerebral doppler stuff. Pass out with no change in vitals is teling. I get the lack of cerebral perfusion and when it goes low one's body most likely will respond. for me it is taking convulsions as my brain try's to adjust and can be a bit violent. also lack of pulmonary filling will spark this as well and a standard TTT should pick up on this. Just my thoughts.

If inclined let us know how your TTT test came out.

I have been D3 deficiency before ended up on a prescription strength dose. My PCP has me taking 1000 u daily.

wonder if this has a hand in my whooshing.

Thanks you so much for queuing in @TCPI am starting to get this does help. Guess one step or change at a time. Thank you!

@MomtoGiulianaSure some of my diet may be to blame. Over the years i have been pushed to do the cardio diet which does not include a whole lot of B12 from meats or where else one would get the vitamin from. Doubt this is the root of my issues but sure it has a hand in how i feel. So far so good.

I don't have any articles i can point out but some environmentals will trigger me. I due suspect allergies and histamine will vasodilate me. Runny nose, watery eyes and being lightheaded when blowing my nose are heads up.

Thanks @MomtoGiulianaand @rondofor the input. I due suspect i am already feeling some mild benefit at least with my left leg. last night and then getting out of bed this morning my discomfort did not rear itself or did not remind me it was there. I hope this helps in the long run.

Long story short i did bring being vitamin deficient with my Doc. So we did test, albeit i was not out of scope i am low for my age so he has me taking a B12 supplement. Like always i will never champion taking supplements with out a Doc's blessing but this does seem to help. It has only been a week and my buzzing/vibrating feeling in my left leg seems better along with the pain. Not sure if this is due to Dysautonomia or autonomic dysfunction but i will take any help i can get. Best

hope someone i have worked with attended...

I know the university has this but chooses not to use it or better said has know one that has an interest. Not sure if it is because of insurance not willing to pay for it. I have seen over the last year that they at least acknowledge POTS and now have a couple of Docs that will work with this.

I have seen the nurses take a reading from the ear lobes and get better results.

@PistolYou are such a good teacher. I have learned a lot from you. Big Hugs and stuff like that.

@Sarah Tee How is your trial of acarbose coming along? Just curious.

@Pistolafter reading some of the stuff you have gone thru you deserve to have a attentive Doc in your corner and others. I know when i first started my journey my PCP was not Dysautonomia aware but after these last couple of years he is up to speed and like your cardiologist i am sure he is spreading the word among his colleagues. My heart doc to some extent even gets it and has made wonderful med changes for me.

@rondoMy Doc did come right out and say it would be very difficult to put himself in my shoes and really appreciated taking the extra effort helping him do his job. He also has said over and over again i am his most challenging patient and like you mentioned is learning from treating me. I just wish some of my other providers would have been so inclined.

Glad to hear you are still trying different approaches. Keep after it.

From my experience my O2 wanes from 92-100. Last summer when i went into the allergy clinic they tried two oximeters and could not get a O2 over 92 but then i was having respiratory issues and was weezing a lot. my norm for quite some time was 92-95. As of late i don't know what changed but i have been hanging out in the 98-100 level. I do know my BP's have been stable and have good heart rates in the clinic 72-76 so guess that is a change. Cold weather can affect readings as well.

I went in yesterday my 6 month well being clinic visit. So as usual had my blood work done and then walked over to the physicians side of the building checked in and sat down. I really did not have a lot to go over that has not already been discussed (diabetes and my left leg discomfort) was all i had. Well anyways the nurse came out and called me in. Kinda felt odd because it was 20 minutes before my appointment (this never happens). so the nurse went over the normal questions took vitals but she kept saying i had a really hard go over the last year and a half, thought (Hmm) how would she know that unless she was reading over my messages with the faint clinic (almost weekly relentless posts for the last two years). So she went to go get the Doc who almost immediately came into the room (never happens either). He seemed to be just bubbling over. Before i even a chance to say Hi he blurted out he really needs to write a paper about me and add my name to it. My jaw dropped under my mask. He the went on to add he read over my communications over the last year and was impressed as to how i figured out that food is such a stressor for me and being instrumental in getting a diabetes diagnosis. We did discuss the process i used to to come up with really caused me issues (postprandial symptoms) and the testing i used to get there. He also was impressed by the dietitian wanting a OGTT test. without it my diabetes he said would have certainly fell thru the cracks. With my seemingly normal A1c and fasting BG it would have never been picked up on. He did also warn me that some Docs will argue that i don't have diabetes but my clinic and BG numbers show otherwise so he will well document it. We also covered my autonomic dysfunction for now with the help of (folks at Dinet) i have been managing it well (no injuries in a year). I also brought up whooshing (haha got that blank look) but was ok. He did order my B12 and folic acid levels to be checked (thanks to Mom) B12 id right at the low side and folic on the opposite end. He ordered 500 mcg daily He did order CBC that i need to schedule. he wants to see what my RBC counts are as this can skew a A1c test. He also ordered a Renal ultrasound (relief about time) All i can add is in my journey here i did not take NO or the other generalized responses for a answer from a provider. When i needed i even came up with my own testing to prove a health concern. persistence in advocating care does work. It did so far for me.

MCAS IMO can be a bit of a shoot to be diagnosed with at least in my state. From what i have read is more complicated than just a easy simple blood test. If one has a bad food allergy like a peanut allergy and balloons up would be a easy call but out side of that from what i know will take a baseline blood test and then a flare blood test. sure i have posted the tests on Dinet before. Anyways more to think about. What has helped me is to keep my carbs down and i avoid the nightshade foods and if i feel ill with a food i will take it off my menu and see how it goes.

So are you going to ask for a histamine test? I did a food allergy panel came up negative (not epipen worthy) but clinic did cite food intolerance.

@Sarah Teejust had a after thought. Tirzepatide (Mounjaro) is a GIP/GLP-1 antagonist for diabetes. One of the effects is weight loss (don't need that) but if it has a positive effect on post-prandial symptoms i would soo be on board. I am sure i can at least get my Doc to consider the drug.

@Sarah TeeI am going in to my Doc next week and am going to ask for a stimulated C-Peptide test which will require a glucose challenge (OGTT or MMT). I have been kinda reading some of the same studies and does make sense to me or at least my post-prandial hypotension. Sure if i ask my Dr for the glucose-dependent insulinotropic polypeptide levels he will deny this one. Sure he would not know what to do with the data.

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