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IDreamInColor

Can Someone Explain Why We Have Nausea With Dysautonomia?

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I have been very scared with this dysautonomia, and I think I would be less scared if I understood the mechanism behind the symptoms I'm having. My blood pressure has been running 120/85 and heart rate in the 60's for the past few days. And even though it is near the normal range I am still having symptoms

Can someone tell me what causes the nausea, the strange feeling in my head like I'm on the verge of vertigo all the time, and why my legs are jerking uncontrollably, and why I am having an uncomfortable feeling in my chest?

I don't understand this disease at all, and I'm trying to desperately.

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It is way more than just blood pressure and bp with dysautonomia. Its from your ANS symptoms being messed up. That is the part most doctors don't understand and why patients get so confused when they hear their bp and hr are normal. Your ANS is sending out wrong signals to your stomach giving you nausea, vertigo is usually from decreased blood flow to your head, even if you have a decent bp, and the same goes for your other symptoms. While they are scary and no fun, they usually dont harm you. Have you had the chest pain checked out? If you havent, you should do so to make sure its nothing to worry about, but the nausea, vertigo, and jerking are pretty standard for POTS. Keep you head up!

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My son's worst symptom has always been nausea. We were told nausea is the hardest to treat because there are many things that can cause it. Blood pooling in the stomach, delayed gastric emptying, constipation, etc.. They concluded that my son's nausea was neurological, possibly from silent migraines. They did several tests ruling out many things before basing their conclusion on a neurological reason. Even once they determined what caused the nausea, no medications helped it.

Christy

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I have been very scared with this dysautonomia, and I think I would be less scared if I understood the mechanism behind the symptoms I'm having. My blood pressure has been running 120/85 and heart rate in the 60's for the past few days. And even though it is near the normal range I am still having symptoms

Can someone tell me what causes the nausea, the strange feeling in my head like I'm on the verge of vertigo all the time, and why my legs are jerking uncontrollably, and why I am having an uncomfortable feeling in my chest?

I don't understand this disease at all, and I'm trying to desperately.

Imho, what's being as diagsosed as dysautonomia appears to be a combo of diagnosises so it's best to google each of your sypmtoms with the word cause to see what is on the web.

fwiw .. Nausea is typically a reaction to food or a gut pathogen. Hormones can play a role here too.

Vertigo can be from an ear problem or, as in my case, ataxia / vertigo due to eating gluten.

Jerking appears to be from a variety of toxins .. Caffeine and gluten make this worse for me. Sun theanine calms this for me when it happens.

Uncomfortable feeling in chest, imho, is more than likely tied to your digestion / nausea.

So far, from what i've seen, it appears that digestive problems, allergies, blood glucose regulation,

thyroid problems and of course bp and hr issues, are common. Watching your diet and environment for triggers appears to help a lot of us ...

Hth .. D

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FYI, one of the best meds I ever tried was domperidone. It was prescribed to me by a gastroenterologist for small bowel dysmotility. I would have taken it long-term but my BP tanked (this was a totally odd reaction to this med). There are other medications like low-dose erythromycin, and phenergan or reglan (the last two can cause tardive dyskinesia, especially if used long term). Also, eating easier-to-digest food can help, along with lying down while eating and eating small meals more often.

Anyway, the nausea can be attributed to several causes if you have dysautonomia. If you have nerve damage like small fiber or autonomic neuropathy, you could have nerve damage to the nerves that control GI motility which can cause gastroparesis, dumping syndrome, reflux, etc. When I was at Mayo, a GI motility study found that I have small intestinal dysmotility. The neurologist surmised that when I'm upright, blood is being diverted from less important organs such as the gut in order to perfuse the brain.

There have been a lot of threads on nausea, dysmotility, gastroparesis, etc. Try typing any of these into the search bar for more information.

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Christyd, i was interested in hearing more about your son's testing for nausea. I am just about to have some more testing from Dr Snspe, who is a big motility expert here in the San Francisco area. I had the gastric emtying test three times and it was normal-- no gastroparesis or dumping syndrome. Now i am scheduled for a barostat test. They place a computerized balloon in your upper GI tract and inflate it. You lie there for five hours while it gathers data about your stomach's accommodation (stretchability) and sensitivity. Doesn't that sound like fun? I am wondering if your son had this test and what medications were tried. Thanks for any info you have time to give me--and best to your son. Caroline

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Hi again ... I just remembered that too much Insulin can cause nausea too ... I get that nauseas feeling everytime I eat too much fruit or sugar and it's because I have hyperinsulinemia / aka my body sends out too much insulin for the amount of sugars I eat. I never eat that much now that I know this. Too much for me would be a 1/2 a banana at this point ...

I almost vomitted during the GTT because of this ... And I felt nauseas for at least an hour after drinking the glucose solution.

hth .. d

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I had a horrific experience after drinking the glucose drink for my GTT as well! I have severe nausea, although it has improved a great deal since the diagnosis of Celiac Disease and the implementation of a gluten free diet. A word to the wise though, don't go gluten free without talking to your doctor FIRST. The testing they do for Celiac is all dependent on how your body reacts to gluten, so if you go GF free you will come back with false negative results. As Celiac can dramatically increase your risk for intestinal and colon cancers, as well as put you at increased risk for malnutrition, it is very important to know if you have Celiac disease. That said, a far larger number of people are gluten-sensitive, and while it is not as dangerous as Celiac, would benefit a great deal from living gluten free. Just make sure you pay attention to healthy diet either way, cut out processed foods wherever you can. It seems to be a cruel joke that to be healthier we need to drag ourselves out of bed (or couch!) to prepare every meal from scratch to keep out bellies happier, but I make do by keeping things in the house that I can either make in large batches and repeat at will, or salads with lots of protein that are easy to make in minutes, even when I am sick as a dog!

GI symptoms were always my worst, I had the gamut: nausea, diarrhea, vomiting. I still have my moments. I get great results from scopalimine patches, but if I use them to many days in a row they seem to lose efficacy, and can lower my already problematic hypotension. I also use zofran and phenergan. Reglan used to do wonders for me, but I started developing the tics associated with tardive, so had to stop it. Your GI tract is part of the autonomic system, which is what is affected by POTS. So most of us have tummy issues, you will see it as a frequent complaint.

The chest pain could also be linked to your tachycardia. It is really scary, and can make you feel really panicky, which just drives your heart rate higher, making things worse. Try to remember that while it is not normal, it is normal for YOU. That being said, you should ALWAYS tell your doctor if you are having any kind of chest pain. Better to be a pest that to miss a dangerous symptom. The only stupid question is the one you don't ask. :)

I am so sorry you needed to find us, but I am glad you are here. Having a support system is key to managing this disease, and this forum is a great part of it for many of us. :wub:

Sandy

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Hi Sandy,

Thanks for the great info ... I just wanted to comment real quick on the part about gluten sensitivity being less severe than celiac disease. My gluten intolerance appears to have caused me to be unable to walk (gluten ataxia). I had to use a motorized cart for 16 1/2 years because my legs were too weak to carry me and I was walking into things all the time.

I appear to have brain damage from gluten that may or may not repair itself. I say that because since my ataxia went away, I know I get the ataxia back if I eat gluten or take Klonopin or Benadryl. I have seizures (petite mals, myoclonus and 1 - 2 hour tonic clonic) which I suspect are gluten damage related too.

I don't know for sure becuase I was never tested but I dont think I had celiac disease until 2005 and my ME/CFS and ataxia started in 1990. In 2005, I finally got the diarhea that never stopped ...

FWIW .. I never had much in the way of digestive problems until 2004 - 2005. Most of the time, I just had gas but I ate fast food or processed foods my whole life. In fact, my go to food if my stomach was upset was bread ... lol ... And I'm a DQ2, postive gluten antibodies and depending on how strict your requirements are, a biopsy proven celiac ... I had damage at 17 months post gf.

In 2004 - 5, things went to pot and I was diagnosed with hiatal hernia, gastroparesis, GERD, colon polyps, etc. But according to my last tests, these are gone now ...

Neurological complications from gluten in the absence of celiac disease is explained here ...

http://sites.google....tationsofgluten

tc ... d

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Caroline,

My son had the gastric emptying test done in Nov 09, which showed he had delayed emptying so he was taking erythromycin(sp?). He was retested again this year in April and was fine, so he stopped the meds. They did a endoscopy, colonoscopy, capsule endooscopy and they tested the antroduodenal manometry which was fine. Then because of other neuro testing, they determined his nausea was neurological. Twice, he was able to find a short period of relief while taking doxepin and then again on cymbalta, supporting their theory that it was neurological. They believed he might have also been suffering from silent migraines as well.

Christy

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DizzysillyAk,

I am so very sorry if you felt I meant to minimize your symptoms or your experience. That was not at all my intention, nor my intent for anyone else. I know all too well that we get too much of that crap from others! I meant to simply stress how very important it is not to go gluten free without consulting a doctor, mainly because if it does bring about much needed relief, it will render you unable to get the definitive test results that doctors are so very (overly!) attached to. I tested negative to every conceivable test, and was quite literally wasting away to death in front of my friends and family. Gluten, and Celiac disease were highly suspected, but I tested negative to blood tests and my biopsy came back negative. The gastro who diagnosed me explained later that even biopsy is not conclusive, it only counts if they find the right section, and my damage may have been further down, or the fact that I was limiting (although not entirely ruling out) my gluten intake. It was the combination of finding a low IgA when in the hospital for a separate matter, That finally flagged me as a possible false negative. A genetic test, and a strict gluten free diet literally saved my life. I do not mean to imply that gluten intolerance, or food allergies, or any number of the problems that complicate our lives and make treatment that much more difficult are by any means "less". So if I offended, I am truly, truly sorry. I did not expect to dine on my foot for breakfast, but it seems I have! :(

FWIW, from what you described, you would meet every standard of Celiac Disease, far better than I. Unless you got the itch from **** oh so not fun and oh so unattractive Celiac rash. Dermititis Herpetiformis not only has a really horrible sounding name, but is sheer misery to deal with. Only upside at all was that it clinched my diagnosis, as it happens only to Celiacs. Certainly what happened to your would warrant it. I am so glad you have had some recovery. Any small victory is well worth celebrating. My apologies again, for being an inconsiderate @rse! :unsure:

Sandy

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LOL .. Sandy, I'm sorry if I made you feel like you'd said the wrong thing. I'm such an easy going person that I never think about my posts sounding harsh.

I thought your post was excellent but didn't know if you knew about neurological problems from gluten. And that these can be without the presense of celiac disease ..

Sorry to hear you're going through all this too. tc ... d

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I have nausea right now. I am gluten free and for me nausea and vertigo are part of my POTS. Could you have migraines? they can be silent.. does being still help you? I usually don't actually vomit unless I am in the car or bending a lot. Sorry to say that for me this is just a "normal" part of my dysautnomia. I do not have leg jerking. Maybe restless leg? there may be others that have this... hope you feel better soon.

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