MikeO

26 minutes ago, MattyT said:

hydration with salted/flavored water would be important.

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).

7 hours ago, Sarah Tee said:

Well, it went okay. He has ordered some blood tests and agreed to try me on plaquenil. Although he said “for three months” and from what I have read you really need to try it for six months to be sure. But I guess we’ll cross that bridge when we come to it!

I doubt the blood tests will show anything. Whatever the antibodies are in OCHOS, they won’t be on current tests. And I don’t have any classic signs of rheumatological diseases.

(Dr Novak believes that in one type of OCHOS, the type I have, antibodies are causing vasoconstriction in the cerebral arteries or arterioles.)

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

1 hour ago, albertspa said:

The orthostatic symptoms consist of symptoms of reduced cerebral perfusion coupled with those of sympathetic activation

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. 

25 minutes ago, albertspa said:

"The emphasis on postural tachycardia does, however, have a disadvantage in that it ignores nonorthostatic symptoms"

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.

20 minutes ago, Sea otter said:

Anyone thinks POTS has misleading name? Doctors, from my own experience, think we should be having symptoms only when standing. Why noone isn't mentioning patients can have bunch of symptoms also when they are sitting or laying down? It's a syndrome which means group of symptoms. Anyone have link for some good article or study about that? Thank you.

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.

2 hours ago, RecipeForDisaster said:

Maybe if we ALL quit, they’ll go out of business??

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.....

18 minutes ago, Machair said:

Does anyone else find being upright generates horrid panic feelings and if prolonged causes bowel upsets? I find in flares that standing causes my bowel to churn and often requires several toilet trips if it is a bad day along with all the other usual symptoms of dysautonomia. It is horrid as I have to be aware of the location of bathrooms. 

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!

5 hours ago, Sarah Tee said:

I hadn’t watched it for a while because I felt it sometimes gets silly and over the top when it doesn’t need to. But the other night it came on and I was too tired to change the channel. And something occurred to me …

Doc Martin has a terrible bedside manner but he never ever dismisses anyone with a medical problem.

I know, it’s a tv show, and that’s how they write the script, with patients always having a certain disease and him working it out and saving the day. And that part isn’t realistic. But what’s *really* unrealistic about it is that he doesn’t just tell everyone that they have stress or anxiety or that it’s because they are old or young or middle aged or married or not married or have children or don’t have children etc. etc.

Made me cry 😞

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.

4 hours ago, Sarah Tee said:

@MikeO, that is excellent news. So glad you found a good GI doc.

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

On 11/16/2023 at 7:48 AM, Sarah Tee said:

Very spiffy! I must get one of these soon.

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.