Dysautonomia

If you have not educated yourself on Leeky gut, please do so many people like myself, or diagnosed with IBS, and actually had leaky gut. And it is treated differently.

Hello. I’m so sorry that you are experiencing these issues. Have the doctors considered that you may have Gastroparesis? It can be a comorbidity of Dysautonomia. Opioids, antidepressants, and medications for high blood pressure exacerbate it. I hope you can find some help and relief soon. Hugs and well wishes to you.

Hi,
The muscular control of the digestive system is compromised from Dysautonomia. I seldom take opioids as I don't like taking anything that is not totally necessary to sustain life. Currently only take Omeprazole and laxatives foregoing all other medication as I feel better without it all and I want to feel better. The symptoms I can manage and do manage through sheer bloody mindedness and will power. My Gastrologist has emptied is bag of tricks and I'm now on my own dealing with this accursed disease. He had been proactive and besides a cure that doesn't exist he/we have tried everything that might help. All we can do is try to keep the stomach settled for some comfort. I have a life lineback to my Gastrologist as and when the disease progresses which it is and will continue to do until the end.
For those who don't know the digestive system works in the same manner as a wave in the ocean. With every wave a note in the bottle is moved towards the shore, wind causing the wave intensity. This is how food moves down through the digestive system, No not seawater waves! but the muscles acting like waves with rippling muscles. The autonomic nerve is what activates the wave motion of the muscles through the entire digestive process including the bowels. It also activate more or less digestive enzymes in the gut to increase digestion. All of this being deficient with me is my main problem. Currently there is know known cure or treatment for Dysautonomia. Now add the diabetic neuropathy to the rest of the nervous system and it doesn't bode well. Just to make sure I'm up the creek without a paddle I now have small vessel damage in the brain going on and low Sella. I can sustain all the symptoms I get as I have to, no choice other than death. What is my major concern now is the lack of food I can ingest each day. The volume is decreasing slowly and I can see the time when I can't sustain life itself. I'm moving past the need to know how these random symptoms are happening and understand the permanent digestive problems I deal with. I'm not even scared of death, I have experienced it as a child, and got sent back! Resuscitated.
Not knowing from day to day what other symptoms I will wake to and have to put up with gets perplexing, or being struck randomly during the day with yet another twist. What I have been able to establish is the mornings are generally the worse tapering off during the day if I'm lucky. Keeping up and mobile is beneficial also for me. The volume of food I can tolerate is decreasing and I can foresee the time I run into serious malnutrition. The only unknown quantity is how long before capitulation. It is not a problem as we all die anyway, sooner or later, it just might be a little sooner unless Dysautonomia chooses to stop the heart muscles a some time earlier.
I'm just curious of when and how this might transpire. If anyone else is going through this scenario insight would be greatly appreciated.
Cheers

Lots of problems. Digestion affects everything.

To support your nervous system, talk to your dr about getting on B12 or even B complex injections. You must have efficiencies. Get iron IVs if you're not absorbing iron, which would show as low ferritin and make you feel miserable. Look into NAC supplements to support the critical glutathione production in the liver.

For motility, get fresh ginger. Shave it with a potato peeler and make a gallon of tea at a time. Refrigerate. Then sip throughout the day. Don't make it too strong. This isn't a miracle cure, but it will improve motility with regular use.

While lying down, find a spot in between the hip bone and belly button on your right side. Press your fingers past the abdomen fat into the intestine. Massage this spot gently to promote movement from small to large intestine.

If you're dehydrated from not absorbing electrolytes, get a good electrolyte powder and sip as well.

Good luck!

@boisvert Could you tell us about little more about the spoon method? I’m wondering if it is similar to to what is in this discussion:
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
How does the spoon method work for you?

Sure, my PCP suggested the spoon theory/method but it didn’t seem like a realistic measuring system to me. I tried it anyway but for me, there are some things during the day I absolutely have to or need to do (ex: get dressed, eat breakfast, etc) so if I assigned “spoons” to those things, then I’d have way too little spoons left for the things I wanted to do which correlated to I me starting off the day anxious and irritated. I tried it anyway. My PCP said “20” spoons so I assigned every task a spoon and I was way too exhausted afterwards so I scrapped it. Maybe I wasn’t doing it right but what I did was write down everything (needs and wants) and assigned a number to it, adjusting the numbers accordingly. There are a lot of the same things I do in a day. Then after weeks of experimenting, figuring out what number I can’t go beyond in a day to feel the best and make sure I sit and rest every few hours…. for at least an hour each time. For me, my number is 35. So that’s what works for me. Everyone’s different I guess. I love suggestions! This system has made such a huge difference for me, even though it’s a twist on the original suggestion I was given. People on this site have so many great tips and suggestions!

Hi,
Yes, we are what we eat. What we eat feeds everything about us, the body needs to have a balance of chemicals as does the brain. Get that out of order and suffer the consequences. Simple equation until a disease interrupts that.
I do use limited amounts of ginger and have no problem with hydration, I take vitamin B12 and vitamin D3 yet the problems persist.
Cheers