Autonomic Dysfunction

I can only imagine what it's like to be so afflicted, but the concussions are especially worrisome. I know you have heard all the jokes about wearing a motorcyle helmet when you're on your feet...

You give the impression of being somewhat upbeat, your condition notwithstanding. Atta girl!! 😀

Do you have a protocol for standing? My wife gets woozy spells, and I keep reminding her to sit on her bed for a few seconds, do several semi-rises and then sit again, try to get her blood pressure up, and to see if she feels unstable. That does a pretty good job, and it can be done when seated at a table or relaxing watching TV or at a desktop computer, as examples of other circumstances.

@mrstigger49 have you ever been to a dysautonomia clinic? Take low dose hydrocortisone was once suggested to my daughter, who nearly faints with heat and has several autoimmune issues. Have you seen a cardiologist- I assume so in all this time! Functional medicine MD's were also helpful to my daughter.

I have been reading about limbic system training (Primal Trust looks like the best online program) and vagal nerve training with breathing and touch (polyvagal theory) for some of my own issues. Basically trying to address brain to body and body to brain, if you will. It's a lot but interesting.

I fear my response is not helpful but wanted to respond anyway because this is difficult- and you've had it a long time!

I’m ADHD & move too fast from bending over & straightening up to walk away…that’s when trouble sometimes strikes…As you’re well aware ANS symptoms seldom warn the person - and they happen fast!
I’m along for the ride, on my feet or off…I can pause, breathe and next thing am flat on my back or a face smack!
I have a short-circuit between feet and central brain of 7 seconds [found in testing] and a short circuit in my neck. They haven’t figured that out but sometimes I turn my neck and blam! Out like a light!
There’s no apparent fix.
So. For me? I start my day with gratitude and mindfulness so that people around me see Me - not my “condition(s)”. I’ve never been a ‘poor me’ personality - I had 5 siblings - who had time? Then raised 2 sons as a young widow. I’m like the EverReady Bunny: just keep going!😊Blessings to you & your wife. 😊

Been to Emory (Georgia);
Vanderbilt (Tennessee);
John Hopkins (Maryland)
Mayo Clinic (Florida).
Best result was: UCH (Colorado).
I landed on a great cardiologist recently! 😊
As your aware, they can only treat out symptoms. I take medication to raise my B/P, hydrate, exercise…because I have Inappropriate Sinus Node Tachycardia I know about massage - but that’s a careful approach.
Hydrate. Hydrate. Hydrate…but I have CKDIII so must watch fluid to sodium balance.
Ha Ha Ha That’s what Life is: A Balancing Act😊
Thank you for your response. Keep on Keeping On, M

Hi,
You are not wrong, definitely a balancing act.
I have autonomic polyneuropathy, CKD 3b, T2 diabetes and untreatable fluctuating high BP. I haven't figured out how I should cut down on salt while increasing it for the Dysautonomia!
Interestingly most diets favour sugar or salt additives neither of which I'm supposed to have.
Cheers

@cheyne
I know! It’s an oxymoron having Autonomic Dysfunction (POTS, etc.) and CKD (Chronic Kidney Disease - for those that don’t recognize this acronym.).
Use salt to get your B/P to stay high enough so you won’t fall over/faint; “But don’t eat salt” when you have CKD(III) or if you have edema (swelling).
In some ways it’s funny ha ha…in other ways…Geesh!
What’s really annoying? CKD can be caused by certain medications over a lifetime of illnesses.
Mine came after 9 months of daily IV antibiotics for a Black Widow spider bite in 2003; was only 54.
But here I am persistent, defiant and triumphantly…still here!😊

Good to share.
Thank you.
M

@cheyne and @mrstigger49 do you see a nephrologist? My eGFR goes as low as 36 but with low blood pressure I am advised that can contribute to the low eGFR (low bp or low heart ejection fraction can mean slower filtration in the kidneys, which you can maybe visualize). So for my CKD I am told to have salt.

The eGFR, my nephrologist said, is affected by muscle wasting so unlike the usual dietary recommendation, I am told to "push the protein."

Finally, I also get an eGFR that is not the usual creatinine based value, but instead the Cystatin C, which is less affected by some of these factors. My MD says the truth lies somewhere between the lower creatinine based value and the higher Cystatin C.

Anyway, did a doctor tell you to cut salt with low bp and CKD? I was surprised but I definitely do well with salt in my diet.

Hi,
I have been to all the "experts" and now I am in the, done all we can basket. I understand their position and that ANS is incurable and untreatable so can't argue with them and we can't make up wonder cures that don't exist. They have tried, which I'm at least grateful that they have tried and I have been warned it only gets worse for me.
It is likely I will starve to death if ANS doesn't decide to stop my heart when it feels it wants to. I'm in a dire position and we know it. We can't change it so I just deal with it.
I'm dealing with ANS, CKD, T2, IBS and CSVD if I applied all the relevant dietary requirements there'd be an even bigger gap in what I get to eat. As it is I now have to watch my food and fluid intake carefully. The amount of food and fluid I can ingest is very limited as ANS limits what I can digest in 8 hour and IBS limits what I can eat while all the other ailments have their own requirements to boot.
I suffered AKD which has left me with CKD thanks to Campylobacter and the kidneys shutting down for 18 hours before they were able to get them kick started back into life. Since then everything else has turned to the proverbial for me. It looks likely that Campylobacter has bought my symptoms to the fore and finally we have some diagnosis. Before Campylobacter I know I had some issues but back then I was still of the belief I was bullet proof! Instead I put up with my problems finding ways around or through the symptoms and carried on.
Going forward I'm doing it my way now as that is all that is left. I have cut most of the medication out, feel better and I'm still fitter and more mobile for my age group than expected, a lot to do with sheer bloody mindedness I guess and years of doing the hard work to make a living.
I don't think about my health much anymore as it is what it is and it cannot be changed, we have tried I just go with the flow and do what I can each day being happy I have accomplished something at least.
Cheers

I have a Primary Care doc, neurologist, nephrologist, a cardiologist, rheumatologist, an endocrinologist, a hematologist, dermatologist, urologist, uro-gynecologist, oncologist-gynecologist, ostomy surgeon, ostomy nurse…I’m followed pretty much every 6 months —For a couple things now once a year.
I feel blessed to still be here at age 75.