Ways to help constipation associated with dysautonomia?

[CallieAndToby]

So this has been a problem for me since my early 20's. My mom is a GI nurse and I've seen GI doctors but nothing I'm trying seems to help. I've been doing miralax, stool softeners, fiber capsules, and fiber cookies in the morning with plenty of water. Certain autonomic medications have helped in the past but I still don't have a specialist so wondering if there are other things I can do OTC? 

[yogini]

I personally get constipated when I eat fiber.  Without getting too graphic, when I eat something with a lot of fiber - a salad or a bean burrito - it sometimes takes days to go through my system.  During those days I have severe consolation often get POTS symptoms like headache and tachycardia.  I think it’s because blood is drawn fo my intestines.  My body handles best very simple food When I eat simple foods - chicken and simple carbs - I have far fewer issues.  My body simply can’t handle too much fiber.  The standard recommendation for high fiber may be better for healthy people with a normal digestive system. 

[CallieAndToby]

41 minutes ago, yogini said:

I personally get constipated when I eat fiber.  Without getting too graphic, when I eat something with a lot of fiber - a salad or a bean burrito - it sometimes takes days to go through my system.  During those days I have severe consolation often get POTS symptoms like headache and tachycardia.  I think it’s because blood is drawn fo my intestines.  My body handles best very simple food When I eat simple foods - chicken and simple carbs - I have far fewer issues.  My body simply can’t handle too much fiber.  The standard recommendation for high fiber may be better for healthy people with a normal digestive system. 

Thanks that's good information. I ended up in the ER b/c of so much fluid retention in my abdomen they did a CT scan to rule out certain things and said the constipation was horrific so I'm at a loss. The medication the GI doctor gave me makes dysautonomia worse.  But yea I don't eat much vegetables because it just makes me sick though I had some veggie last night but I am a pescatarian so I don't eat meat and that is a new thing maybe 6 months now. Thank you for responding. 

[yogini]

1 minute ago, CallieAndToby22 said:

Thanks that's good information. I ended up in the ER b/c of so much fluid retention in my abdomen they did a CT scan to rule out certain things and said the constipation was horrific so I'm at a loss. The medication the GI doctor gave me makes dysautonomia worse.  But yea I don't eat much vegetables because it just makes me sick though I had some veggie last night but I am a pescatarian so I don't eat meat and that is a new thing maybe 6 months now. But yea in my 20's when I was much healthier this was a major problem and the GI doctor kept telling me to exercise and I was already hiking for hours a few times a week and walking a lot on college campus and that didn't help either. When I took guanfacine it helped a lot so it tells me it's related to autonomic dysfunction. Thank you for responding. 

No problem.  This is a major problem for me even though I am “normal” with low symptoms otherwise.  I literally eat meals of white rice, white bread and/or jello sometimes as that’s ll I can take.  I can eat a side of veggies, no problem.  But larger amounts or too much in one week and I am screwed.  I don’t take any meds as it fixes for me just with eating light foods.  Feel better.

[CallieAndToby]

Just for anybody else reading this, if you use psyllium husk fiber it draws water into the stool which makes it more bulk and not so soft and helps it move along. I swing from constipation to diarrhea and my pelvic floor PT and mom have me use this several times a week. My mom talked to a GI NP who has constipation problems and she recommended a specific type of probiotic and my mom recommended possible mineral oil. We'll see. 

[Sushi]

I also have had constipation all my life. My primary way of preventing it is quite high doses of magnesium each night. But the amount I need varies (probably because of what I have eaten that day) so sometimes I get caught.

[CallieAndToby]

On 6/18/2021 at 11:27 AM, Sushi said:

I also have had constipation all my life. My primary way of preventing it is quite high doses of magnesium each night. But the amount I need varies (probably because of what I have eaten that day) so sometimes I get caught.

Thanks. It's very weird because my mom being a GI nurse said that many patients come to them with constipation and some are athletes and very busy and mostly they do not understand why it's happening. I was given a medication for IBS but it worsens dysautonomia. I will mention that I watched a YouTube video about autonomic dysfunction and testing from UAB and they flag out said that dysautonomia causes terrible GI problems, potential bladder, and if affects the adrenal medulla and adrenaline so it definitely makes sense in my case; plus they mentioned the blood pressure, heart rate, all of that. It's weird because my bladder problems started when I was only 6 years old and they diagnosed as OAB but none of those meds ever helped. Be good to see if UAB treatment can help my bowels and bladder. Such a pain. Magnesium is a good idea as well. What dose do you take? I just drank some psyllium husk (eww) but I'm trying to find a combination of things that helps. All through my 20's I just used laxatives all the time but it's not a good idea, they made me stop doing that but nothing worked! 

[Sushi]

15 minutes ago, CallieAndToby22 said:

I will mention that I watched a YouTube video about autonomic dysfunction and testing from UAB and they flag out said that dysautonomia causes terrible GI problems, potential bladder, and if affects the adrenal medulla and adrenaline so it definitely makes sense in my case;

Do you have a link to this YouTube? What department at UAB is working with autonomic dysfunction? Last I heard, they didn’t have anyone after their principal clinician retired and died.

I have had severe constipation since early childhood. Right now I need about 1200 mg of magnesium citrate to be regular.

[CallieAndToby]

9 hours ago, Sushi said:

Do you have a link to this YouTube? What department at UAB is working with autonomic dysfunction? Last I heard, they didn’t have anyone after their principal clinician retired and died.

I have had severe constipation since early childhood. Right now I need about 1200 mg of magnesium citrate to be regular.

They have an autonomic testing lab. The only testing that's ever been done is a TTT like 10 years ago. Nobody in my city or anywhere else I went with a misdiagnosis of ME/CFS knew anything about autonomic dysfunction. I don't really have a clinician as of yet. I just googled their autonomic lab and some videos came up. 

[Guest KiminOrlando]

 Domperidone is for gastroparesis and it helped me tremendously. It isn't FDA approved and needs to be compounded, but it changed everything for me. 

[CallieAndToby]

On 6/20/2021 at 1:42 PM, KiminOrlando said:

 Domperidone is for gastroparesis and it helped me tremendously. It isn't FDA approved and needs to be compounded, but it changed everything for me. 

Thank you! 

[Chiara]

When I took Mestinon it helped me for obstipation. 

 

[MikeO]

Mestinon will help with constipation. it does also carry other benefits as well. just be sure to take it with substantial amount of food. Food will flatten out the drug curve and give you a better response.

[CallieAndToby]

On 7/27/2021 at 4:20 PM, Chiara said:

When I took Mestinon it helped me for obstipation. 

 

 

On 7/27/2021 at 6:45 PM, MikeO said:

Mestinon will help with constipation. it does also carry other benefits as well. just be sure to take it with substantial amount of food. Food will flatten out the drug curve and give you a better response.

Thanks so much! I still don't have a dysautonomic doctor but I'm anxious to start treatment and this will be on the list to mention.