MikeO

20 minutes ago, MaineDoug said:

I would recommend caution with Prednisone.

I have had a go with this as well. at one point i was ok with prednisone but my last round did not go well. so i weaned or some other word i am looking off of it pretty quickly. it is on my banned drug list.

Well i can say i do not have a very healthy relationship with food and to some degree food adverse as well but there are plenty of reasons for it. this was so bad 2 years ago i would not or only eat once every couple of days which creates it own set of problems (trust me) still need to fuel the body. i was 20 lbs lighter during this time.

Not sure what a IV bag would do for me as every time i have been plugged into one was either for a procedure, ICU visit or ER visit and the only thing i noticed is that i would have to pee alot.

My DM trainer is a believer in the gut/brain connection when it comes to chronic issues. so a ANS discord at times?

7 hours ago, Sarah Tee said:

I’m not sure whether it is relevant or not, but the vagus nerve is involved in swallowing.

bet that is why some foods and meds get suck in on the right side of my throat from time to time. just happens to be the same side i had my carotid endarterectomy on.

@Amyschifor what it's worth my gastro treated for SIBO. seems to be a not popular issue but it helped big time for me. may take a few treatments but at least i am eating again.

Good luck.

now i kinda feel bad. most of my er visits (all injuries from passing out) they stuck a IV bag in me. only one that they did not was when my right eye hemorrhaged. wonder if just a statement that one has been really orthostatic lately or been sick and feel that they are dehydrated would work. in my visits i never alluded to dysautonomia (this term could have a negative direction) but i will state that i am orthostatic and have frequent episodes of presyncope and syncope. that folks understand.      

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.

2 hours ago, Jyoti said:

@Sarah Tee--the opposite.  In general, when I am upright, my diastolic (bottom number) holds steady or rises a small amount.  The systolic (top number) drops a lot.  The other day after standing for five minutes, my bp was 101/90.  So narrow pulse pressure.  I am used to that, but not to this new development which finds me with both numbers elevated when standing.

 

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.

2 hours ago, Jyoti said:

No one has ever told me which sub-type of POTS I have.  On the one hand, I have been told to use compression garments, increase my salt, and trialed on the usual drugs, none of which did anything.

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.

3 hours ago, Jyoti said:

In addition, both norepinephrine and particularly epinephrine--supine and upright-- are high enough to warrant an adrenergic diagnosis. 

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.

3 hours ago, Jyoti said:

In the last month or two, my blood pressure, which has stuck to the lowish moderate range (110/75) for years has suddenly risen.  I am getting readings as high as 140/111.  I know lots of us get higher readings, but mine are....well, mine. I get alarmed (and I get alarmed about a lot of you as well, as you describe anomalies and difficulties.  Just saying.)  And this comes with tremulousness, sweating, shaky legs and arms, an inability to think, heart and neck pounding. 

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.

3 hours ago, Jyoti said:

This could be from something else--I do struggle with potassium  levels and when my heart rate and BP go up, potassium is often the answer.  I am not convinced that it is this time.   And of course, it could be something entirely unrelated to dysautonomia, though I have to admit that lying flat for fifteen minutes start to bring down both BP and HR, though they are still higher than they were on average a few months ago.

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.    

On 12/6/2023 at 11:45 AM, Sarah Tee said:

Oh dear, something odd happened and the Facebook group might have disappeared. Might be a browser problem. I need to check on a different computer. Will update shortly.

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

1 hour ago, MTRJ75 said:

Thanks Mike. 

I'm already on several antihistamines for mast cell issues. 

I did use the electrolytes afterward, but urine color suggested sufficient hydration.  (I thought the Sjogren's played a part in drying me out and lowering blood volume over-night)

My blood sugar is generally around 100 when I get tested. Never low, but I don't know if that's what you're talking about. 

 

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.  

On 11/29/2023 at 7:43 PM, Neomorph said:

Thank you! I didn't realize Sjogren's shows in a blood test. I'm trying to see a rheumatologist, but they denied my referral last time due to "lack of evidence" of me having a rheumatologic condition. My symptoms aren't enough. That is why I'm see the eye doctor now, to gather more "evidence". Sigh xD

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

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.