Gastrointestinal symptoms are common in Dysautonomia, and Autonomic Dysfunction. Nausea is especially common, and can be triggered by low blood pressure, Gastroparesis, or other digestive problems. Has he ever had the Gastric Emptying Test? Has he ever tried a drugs like Phenergan, or Reglan?
You may want to take him to another Gastrointestinal Specialist, or a Dysautonomia Specialist. Here is a list of Dysautonomia Specialists:
I'm trying to think of possible reasons why the nausea is set off by him sleeping:
-acid reflux while prone is contributing? Tried GERD meds yet?
-medication taken in the morning but worn off by evening is causing/exacerbating?
-some hormone which is on a circadian rhythm is exacerbating? Perhaps try an endocrinologist next? I know aldosterone, renin, cortisol, epinephrine, norepinephrine can be awry in dysautonomia, not sure what other things an endo might check or what might possibly be related to nausea. A sleep neurologist might also be a good expert to ask about which hormones in the body follow a circadian rhythm--there are sleep doctors that are pulmonologists and ones that are neuros, I would err on the side of neuro since we're talking dysauto.
He saw an endocronologist last fall before he was diagnosed with autonomic dysfunction. Would they run different tests with this diagnosis?
He is scheduled to see a sleep dr in mid august. I don't know which type though. He has insomnia sometimes, disturbed sleep and sometimes will sleep for 24 hours. His pediatrician is sending him. I read that insomnia is a symptom of autonomic dysfunction.
He is being referred to St Louis Childrens Hospital's Diagnostic Center. Since the cardiologist says the nausea and stomach pain aren't from the autonomic dysfunction. They want to see all of his records first, from the GI,Neurologist, Cardiologist, Psychologist,etc... So I don't know when his appt will be.
He has taken medicines like Nexium and prevacid, besides several other anti nausea meds.
His pediatrician is now coordinating all of these doctors since no one seems to know which direction to go now. She will be calling his Neurologist though, since I told her he wants to send him to Vanderbuilt. Hopefully, since he is adult sized they might see him. He was seen for his migraines by a specialist who only saw adults, but took him as a patient since he was able to take adult dosages because of his height and weight.
Whether they would run different tests would depend on whether they were knowledgeable about dysautonomia. None of the articles about endocrine abnormalities in dysautonomia have been published or cross-referenced in endocrine medical journals; they have been published in cardiology or other sub-specialty journals and most endocrinologists are not familiar with them unfortunately. Patients do best with an endocrinologist who is open-minded and willing to learn.
I hope you get help at St. Louis. It sounds like they are being very thorough. It may very well be enough to point out to them that he gets sick upon waking up and it lessens throughout the day, and that perhaps it is tied to his circadian rhythm somehow. This may be an important clue to what is causing it, and it may help tip them off as to which additional tests they can run or what other docs might have missed.
Sorry you're having so much difficulty getting help. Dysautonomia can be very difficult to treat sometimes. Keep us updated as you can.
Hello, my name is Anthony, and I have been dealing with GI problems since I was 3 years old (20 years now). I would like to exchange e-mails with you and talk further about symptoms - diagnoses - and treatment. This is the FIRST time I have found anyone with 100% matching symptoms and I am VERY curious to gain knowledge and share what knowledge I have gained. My e-mail is ***@****, please get back to me on this.
My son has had ongoing stomach issues since grade school. He had frequent stomach aches and would miss 1 day here and 1 day there. In the 5th grade, it became more frequent. When he was in the sixth grade, he was sent to a GI.
He has stomach pain and/or nausea. The GI ran several tests, endoscopy, upper GI, ultra sound, blood tests, etc. All tests were fine. Then when in the seventh grade, headaches and migraines started with the stomach pain and/or nausea. So he was diagnosed with abdominal migraines and sent to a neurologist.
The neurologist also ran an MRI, came back fine. No medications helped. No anti-nausea medications, migraine preventatives and migraine medicines have helped. He has not had a migraine for about 7 or 8 months now though.
In February, this stomach pain/nausea became a daily event and he was on homebound schooling. He also has other symptoms, like dizziness, brain fog, heavy head. He also has low blood pressure. So he saw a pyschologist since drs thought it was anxiety. She believes it is physical and thought he should see a cardiologist for possible autonomic dysfunction.
In June, he saw the cardiologist, and that is what he was diagnosed with. He takes fludrocortisone for the dizziness, but still has the stomach issues. His pediatrician is now sending him to St Louis Childrens Hospital to the diagnostic center. We don't have an appt. yet, they wanted to see all of his records first.
The cardiologist doesn't think the stomach issues are related to the autonomic dysfunction, but I have found in my research that these are symptoms. So now we have to wait and see what the diagnosticians say.
Also, he will be seeing a sleep dr. in a week and a half. He sometimes is up for 24 or more hours and then sleeps for 24 or sleeps for 4 or 5 hours and is up for a day. His circadian rythem is messed up, since he prefers to sleep while he is sick.
Does this sound familiar to you?
I have fairly similar symptoms. I also have nausea, dizziness, migraines and stomach pain. My nausea, dizziness and migraines are constant, but the stomach pain is intermittent. I was diagnosed with pots 2 months ago and also take fludrocortisone. I've had the same experience with ineffective nausea mediicne and migraine medicine. Even iv infusions fail to provide me with relief.
The only main difference is I had my gall bladder removed in July 08 and remnants and gall stones removed last May. I have since been diagnosed with post cholesystectomy syndrome, which means I have intermittent sharp pains in my gall bladder area.
I too have insomnia; last week I began taking trazadone which actually helps a lot. Definitely ask the sleep doctor about it, I know a lot of other children who take it and have had success with it. When I first became sick I was like your son in that my symptoms were always worse in the morning. Doctors have never figured out why though. I hope they do in his case!
My cardiologist told me that some patients with autonomic dysfunction have abdominal pain, but it is difficult to determine that the two are legitimately related.
Good luck in St Louis and keep us updated
I went through exactly these symptoms as a teenager!
I would go to sleep at night feeling fine, and wake up in agony. I would often vomit so often it became part of my normal morning routine! When I woke complaining of stomach pain my parents thought I was trying to get out of school. I didn't mind school except I couldn't keep up with everyone because of the constant pain. I ended up taking an eggcup full of medications each morning just to keep me going - including antidepressants such as Prozac. I hated it!
I went from doctor to doctor, and all the scans and tests (including gastroenterologists, endocinologists, psychologists - and just about every ologist you can think of!) For 3 years I was in and out of hospital having tests run...no answer.
At age 21 I started getting severe vomiting and diarrhoea episodes with extreame weightloss and was unable to work. Despite going to doctors and hospital, being prodded and poked and having all the scans and tests imaginable - it all came back clear.
I ended up working out the problem myself by process of elimination. I am highly allergic to wheat. It is not clear whether this is connected to the dysautonomia (which I was diagnosed with 10 years later, at age 31), but it is definately connected to the morning stomach pains.
Take a look at what your son eats from day to day - how much of it contains wheat (ie anything with flour - such as bread, pasta, gravy, hidden ingredients)
The build up of wheat happens during the day. The liver then digests proteins and releases enzymes between midnight and 2am during deep sleep pattern. If your body is unable to digest the wheat proteins (such as gluten - though not the only culprit) this results in pain and nausea on waking.
I got to the point where I was so sick in the mornings I would skip breakfast and not eat a thing until lunch. Not surprisingly, by lunchtime I was feeling better, but then the sandwich, and dinner of normally pasta or other wheat containing food would not digest over night - and the cycle started again.
You might want to get your son to have an allergy test done (skin scrape testing). Though for me, this didn't seem to show much.
Other option - cut wheat out of his diet completely for 2-3months and see if it helps.
It may be a gluten allergy or wheat allergy. Gluten is a protein of wheat - though it is not necessarily the only culprit. I can eat a bit of gluten, but NO wheat. Even the smallest amount causes problems.
(NOTE Gluten free = wheat free, Wheat free not necessarily Gluten free.)
Don't know his age - but something to watch for as he gets older - beer contains wheat and can cause verbal and visual hallucinations with even small amounts (no, not drunkeness, but schitzophrenic like symptoms).
I had these hallucinations with normal wheat exposure through diet - and was worried I was getting schitzophrenia. It completely resolved when I cut all wheat out of diet, and I can't even tolerate a sip of beer. Wine and spirits are fine - but not beer.
I recently found out my cousin is schitzophrenic - and he eats a lot of wheat, and the only alcohol he drinks is beer. I've told them about the genetic link - but he doesn't want to acknowledge he has a problem.
It is easier to prevent it and control it from when they are younger, and you still control their diet - once they are adults, it is out of your hands.
I just read your post about gall bladder surgery...
I forgot to mention in my last post...all the wheat allergy symptoms became so much worse after I had my gall bladder removed.
I had all the symptoms I mentioned in last post all teenage years, at age 21 had gall bladder removed, then had increased pain and nausea, particularly in morning.
It was at this point I worked out what was going on...hmm, maybe dysautonomia and wheat allergy are connected? You may wish to try this yourself (may mean you don't have to take so many meds...hey, worked for me...)
I just wondered if you'd looked at the possibility of a link between the stomach pain/nausea and the fludrocortisone? It can cause stomach irritation in people who have sensitive stomachs. I have a similar problem with both dludrocortisone and prednisone, and probably any other steroids.
I'm so sorry your son is going through this. I think it's bad enough to be sick like this myself, but it would be so much worse if it were my daughter going through this. Having a sick kid has to be the hardest thing for a mom to go through.
Good luck, and I hope you get some answers soon!
I agree with Halbashes that a Gastric Emptying test would be a good idea. Many cardiologists seem to forget that autonomic nerves affect so much more than just BP and pulse. It's not at all difficult to do a gastic emptying. Your son just sits and eats toast and an egg, then lays down for about1.5 hours while they watch the food go through. I have delayed gastric emptying, and often had stomach problems at night, because whatever I ate from about 7 pm on just sat in my stomach all night. If it sits there long enough, it starts rotting, which causes a lot of bloating and terrible smelling gas. I can no longer eat most fruits and veggies, high fiber cereal and granola, because the nerves are no longer there to tell my stomach to move the food through. Talk to your doctor about testing for this. You also might consider what your son eats through the day, especially in the evening. I know it sounds crazy and unhealthy, but you might want to try short term to make sure he doesn't get a lot of fruit, veggies, popcorn, high fiber pasta, etc. in the evening for a few hours before bed. That may make a difference.
I don't think it is the Fludrocortisone. He didn't start taking that until 2 months ago. He has had the daily stomach issues since February.
Today was supposed to be his first day of school as a freshman, and he is sick in bed! It can be very frustrating and exhausting. He takes it in stride though, so, I try not to show him my frustrations.
i spoke to an allergist who told me I don't have the symptoms of being allergic to wheat. But thanks for the idea! I wish it could be that easy...
I am very sympathetic to your son's story. My son is 13 and has had a very similar experience. It has been a few years since you posted anything--is your son doing better now?
Unfortunately he is still struggling with the nausea. He was diagnosed with POTS in Oct 09 and has tried many meds for the nausea. One helped for 6 weeks and then stopped.
We were just at the Mayo in October for more tests, no new diagnosis. He then went through 3 weeks of Pain Rehab for POTS kids to help him cope. His symptoms were not extreme while there so he wasn't taught how to deal with the worst of it.
What is your son's diagnosis, or does he have one?
OH MY GOSH! Yes, I have dysautonomia and severe stomach pain everyday from it including bouts of nausea. Dysautonomia causes "Delayed Gastric Emptying" which basically means your stomach doesn't empty the food out into your intestines and I have had weeks in a row where my stomach wouldn't empty. My doctors diagnosed the cause of my stomach pain from dysautonomia. It really is painful, I feel for him. Try fludrocortisone if he can tolerate it, also, dysautonomia may also cause GERD which further complicates the stomach problems.
My son has symptoms so similar to the ones here. His problems actually started with Crohn's disease (intestinal inflammation) and then the autonomic failure set in. He had part of his intestine removed before the diagnosis of autonomic failure so he seems to suffer a combination of stomach pain: slowed motility plus neuropathic pain from the surgery itself. He's in tremendous pain 24/7, even with pain meds, and we're pretty desperate.
He also has the cardiac problems, doesn't sweat over most of his body, doesn't maintain salt properly in his blood, endocrine problems, etc. What is going on with these autonomic diseases?
Any progress in your son condition, becuase my doughter of 8yrs old has same problem since last 1month and have gone to many pediatirsc and gasto doctors. but no one help me. she is still in problem. please help me if you can found the solution. thanks a lot.
No meds have helped yet. He has a diagnosis of POTS and MCAS.
POTS=Postural Orthostatic Tachycardia Syndrome and
MCAS=Mast Cell Activation Syndrome
He has many more symptoms, ie..dizzy, tremors, headaches. Nausea can be caused by many different things and can be hard to pinpoint the cause.
What are your daughters symptoms?
Hi I hope your sons symptoms are getting better, I was diagnosed with POTS about 3 years ago. I have been working on improving my health significantly since this January 2012. I do still have the awful stomach symptoms so here are the things that seem to work for me, maybe something will help your son.
*Elevated the head of my bed six inches
*Wear compression stockings every day (15-20mm)
*Eat small frequent meals(Eating too much at one time is really hard on my stomach)
* avoid tyramine foods( http://www.fdnow.org/images/TyramineFreeList.pdf)
*work on exercise tolerance( I have a total gym and now a treadmill, 4 months ago I could barely walk a mile on a treadmill, now I can easily do 2 miles)
* try to rest regularly( Dont push yourself if you feel like you are having an off day)
* Avoid too much sugar or caffiene
*Glucerna shakes( can be bought at Costco for 29.00 for a box of 30, really help with blood sugar spikes and days that your stomach cant seem to digest food properly, I actually have one next to my bed so if I wake up with stomach pains in the middle of the night I can sip on it, seems to really help)
* be careful what you eat, certain foods are hard for me to eat, lettuce, raw carrots, those types of things I eat in small quantities only! No large chefs salad for this girl( used to be one of my favorites! )
*purchase a pulse oximeter, it will show you when you have a fast pulse and what the difference is between resting and exercise! Helps to keep you from overdoing it when you do exercise!!
Anyhow hope something on my list helps! I
Oh yes, I forgot the most important thing... Lots of fluids, water is best, I also drink a gatoraid every morning about 24 oz... :)
My son and yours could be twins. We must have came into PRC directly after you finishing up early Nov. 2011. Looking back, Sam's symptoms started in 2009 but fully flared up Spring 2010. His stomach pain was the red flag. The sleep was the most horrifying to me. Unable to wake him. Trying everything. He was diagnosed pretty quickly with POTS but nothing was helping. We have been told either the stomach pain is a stomach migraine or over/under digestion.
We have followed plan and things are improving but when he picks up a simple virus, it throws him into a tailspin. It takes weeks to recover. He is now a super senior set to graduate in January.
I know it takes time for the nerves to grow back and am grateful the episodes are getting less frequent. He is strong and his great attitude gets him through his rough days amazingly well. The one thing that helped him was his support system from the friends he made at PRC. They keep in contact, less frequently but know they are there if needed.
How can we as parents know how they feel - we just need to be in their corner also. And remember, life is not a race.
I just wanted to let you know that someone somewhat knows what you've been through.