Stomach Pain Relief with Dysautonomia

[JustMeHeeHee]

Hey, everyone! I'm new to this forum as well as the world of Dysautonomia. I am fourteen years old as of March. Over a year ago, I started having problems with chest pain. When we went to the doctor, she told us that it was most likely related to muscles, and that it probably wasn't serious. She told me to take Advil, and that I should be fine.  I guess it never really went away, and I just learned to deal with it. In December or so, I started having issues with Orthostatic Intolerance. I didn't worry about it too much because our family (and myself personally) have a history of fainting, so I ignored it. In about May (I think), I started having problems with abdominal pain. It got pretty bad, so we went back to the doctor. She told me it was probably related to too much acid in my stomach and gave me some medication to take. Well, that didn't help, so we went back. We were then told that it could be Ovarian Cysts, Endometriosis, or Crohn's Disease, and were sent to have a sonogram done. The sonogram didn't show anything abnormal, so we went to a GI doctor. After hearing my symptoms, she told us that we should take a look at the symptoms of POTS, because it sounded a lot like what I was having problems with. We did, and it was like a light flicked on! Every single symptom of mine (even some I didn't realized were symptoms) was on the list. OI, abdominal pain, chest pain, fatigue, exercise intolerance, cold extremities, brain fog. This is where to story gets a little tricky. I was in a drama production, and at the end of the very last show, I was supposed to be slumped over in a chair pretending to be asleep. Well, one of the kids tapped me as part of the show, and I just fell out of the chair landing on my knees, wrists, and forehead.We finally puzzled out that I had fainted while slumped over, and when the kid tapped me I just didn't have any control over my body. I was sent to the ER for signs of concussion, although I ended up being clear of that. They also did an EKG, which came back normal, and I was sent home. I then went to a pediatric cardiologist who did another EKG and an echo. Both cam back normal, and he told me that I was simply "a fainter" and had basic vasovagal syncope. He didn't seem to know anything about POTS, and didn't address any of my others symptoms. So, all that to say that while  haven't been officially diagnosed with POTS or Dysautonomia, I'm fairly certain I have some form of it because of all the symptoms I have. Lately, I've been having a lot of problems with abdominal pain. It gets pretty severe at times. I thought that dairy products might have been causing or at least adding to it, but I've almost completely cut dairy from my diet, and I'm still having pain at least once per day. I'm trying to drink tea infused with peppermint twice per day, which is supposed to help. Is there anything else you suggest?

[Heiferly]

Hi and welcome to our forum.

It's definitely good that you're going to see a specialist. In the meantime, it'll be good for you to understand that autonomic dysfunction (be it vasovagal syncope—more commonly known as neurocardiogenic syncope— or POTS) can be accompanied by gastrointestinal [GI] symptoms including nausea, bloating, vomiting, diarrhea, constipation, cramping, and abdominal pain. The reasons for this are twofold: first, there are the direct effects of the autonomic dysfunction itself. The autonomic nervous system [ANS] is part of what makes your digestive system work, so if your ANS isn't working right, your gut won't either. Second, many people with autonomic dysfunction have it due to (or "secondary" to) another condition or comorbid with other conditions, and these other conditions often include GI issues like gastroparesis, gastroesophageal reflux [GERD], intestinal dysmotility, colitis, Crohn's, cyclic vomiting, abdominal migraine, celiac and ulcers. As such, it will likely be of benefit to you to see a gastroenterologist about your GI symptoms if that does not improve based on whatever treatment regimen the autonomic specialist advises.

I have severe gastroparesis (paralysis of my stomach) and intestinal dysmotility (paralysis of my intestines) that ultimately led to me needing to be fed through a feeding tube into my intestine. I know a LOT about severe abdominal pain because of this, unfortunately. The best "home remedies" I've found are a heating pad or soaking in a warm bath; PLEASE exercise extreme caution when soaking in a bath tub and always have supervision as this can trigger fainting in people with syncope!! I'm twenty years older than you (oy!) and I still have someone in the room with me at all times or I'm not allowed to be in the bath tub.  :-/  

If you want to know what to ask the doctor about, I would definitely inquire about being put on either Bentyl or Levsin to see if that helps with your abdominal pain. Both are Rx only, and obviously it will be up to your doctor whether that's appropriate for you; being in a feeding tube support group, those are the two I'm most aware of as being helpful for abdominal pain in dysautonomia, especially if it's crampy type pain. For more burning type pain, like acid reflux, the home remedy I hear most often is apple cider vinegar (1 T in 8 oz water, add honey and lemon juice to taste). You have to get a natural, non-processed brand from what I've heard for it to work well.

Please keep us updated how you're feeling and keep your questions coming at us! I'm glad you found us and I hope we can be of help to you. I'm sure you're aware of this (right? right!) but always discuss with your parents before following any advice you get on the internet.  ;-)

[CHRISTYDRAKE]

He would use a heating pad to help a little but that was about it.  He also was diagnosed with gastroparesis which ws caused by dysautonomia.  Research that as well.

[JustMeHeeHee]

I will be seeing a pediatric cardiologist who specializes in autonomic dysfunction very soon. We have finally found a doctor in our area, although it certainly took a while! Thank you for the encouragement that once we start treating my dysautonomia, the pain should clear up. Do you or your son have any tips for dealing with the pain until we start getting treatments? Any short-term fixes that worked for him?

[CHRISTYDRAKE]

One of my son's first symptoms was abdominal pain.  Nothing helped until he saw a GI doctor who specialized in dysautonomia.  Once he started getting treated for POTS some of his symptoms got better.  While he remained nauseated, and still deals with it, his abdominal pain subsided.

I recommend seeing a neurologist, or cardiologist who specializes in autonomic dysfunction.

My son was diagnosed at age 14(after 2.5 years of incorrect diagnosis) and is currently 18.  

Christy