MikeO

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?

@Sarah Teenot sure what season is being aired on PBS. i don't follow it that close but i do oddly like DOC's dry sense of humour. have had a few needed laughs!

well here i will respond. not a very chatty site for sure. i watch this on PBS every weekend. love the show. kinda give me hope there is good providers out in the world yet.

Thanks! yeah finally got lucky for once and have not had to go thru several providers to get to the root of the issue.

Thanks! you can be very styling when out and about.

well have 4 days left of the antibiotics and boy what an improvement. i have better energy, my GI distress has gone way down and my bowel movements have not been this good in a long while. Also not seeing undigested food anymore so i keeping my fingers crossed.

@Sarah TeeGood job on the detective work. Do you think that you could get a Consultation visit with Dr Judith Spies?

Pretty happy with the quality and for $16 dollars it is a good value.

well full four days taking Xifaxan seems to be helping. i have already noticed that i am not passing undigested food and the bloating/full feeling has improved. Hope this is the catch all for my GI issues. 10 days to go on the treatment so i have my fingers crossed.

Thanks for sharing!

Well i have been put on XIFAXAN for suspected SIBO issues. it is a two week course of antibiotics. as i dug into the intestinal bacterial overload seems to be common with a number of folks from diabetes to ans issues like POTS and vagus nerve issues. Hate the NIH studies that just suggest that more studies are needed. i am just happy i have a gastro gal that is working out of the box. I hope the treatment helps.

Well new email from STAT. My take is they are pushing for funding just can't capture the whole email thread. My Doc says does have reservations for good reasons. I am sitting off to the side for now as nothing has been proven, cost for a wellness device is high and how does the product help me? i could see a preemptive alert that i am about to pass out but i doubt this is in the works (FDA stuff). I already know that if i drinks fluids and watch what i eat i do better. some folks are think this will show or cure there issues i am refraining from this. Just my 2 cents.