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Hi all, 

I am new here, a fellow potsie looking to give and receive support. I have yet to have conversations with other sufferers.

Like many of you, I have varied symptoms that seem to come and go as they please. Right now and for the last few months I’m suffering with extreme nausea and general stomach upset, palpitations and foggy head and headaches, 

trying to stay positive but it’s making my life miserable. 

Would love to hear from others your symptoms and how you cope. 

 

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Hi MissMermaid,

Welcome, although I am sorry you have found yourself here!

Two things that I found helpful for intractable nausea were mirtazapine & diazepam. 

I have recently been diagnosed with intracranial hypotension so my underlying pathology is likely to be different to yours, however these are both useful agents for nausea of central (neurological) origin vs gastrointestinal causes.

B xxx

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Hello @MissMermaid and welcome to the forum! What Dysautonomia were you diagnosed with? Coping with these symptoms is difficult, especially since our symptoms change all of the time. I too struggle with GI symptoms and in addition to protonix, Zantac and zofran ( for nausea ) I have found frequent snacks instead of meals and eliminating fresh fruit and veggies as well as acidic foods from my diet helpful. Palpitations are controlled with beta blockers in my case and the brain fog has improved with the use of Ritalin. What medications do you take? 

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Thank you so much for your replies. 

I am glad you have found a few things that work for you.

I have been taking nexium for my stomach upsets but that doesn’t stop them or help with nausea. Will be seeing a gastro doc soon. I try to eat as boring as possible. I feel like I want to vomit more than I don’t these days.

 

I was diagnosed with POTS two years ago. I have tried midodrine and ivabradine but both were poorly tolerated so it’s a mix of fluids, salt and hope for me right now. And magnesium to try and calm my pvcs which drive me mad at times. 

I hope you are both doing well!

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Hi @MissMermaid. Welcome. You are definitely not alone in dealing with GI issues.

I'm glad you're going to see a GI specialist. Many of us on this forum have autonomic dysfunction of the upper and/or lower GI.

While some people here have issues with certain types of food, others like me have GI issues no matter what type of foods we eat. After extensive testing, and scoping, and prodding and poking they couldn't find anything wrong with my GI other than minimal evidence of acid reflux. I don't have any food allergies that could be found. I kept a food journal for over a year, writing down everything I ate. I tried every kind of diet. Nothing helps me except eating smaller portions, limiting sugars a bit, hydrating like crazy and Zantac. Unfortunately, Zantac was just pulled from the shelves in the US

If your GI specialist rules everything else out, then dysautonomia may be the culprit.

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Thank you for your reply @Random-Symptom Man 

Im sorry you have had to deal with similar issues. It still baffles me that dysautonomia can cause such varied symptoms throughout the entire body. I am glad I have joined a forum such as this to connect with others. It’s been really hard to deal with the almost constant nausea and pain. 

I hope you are well and thank you for the article on the Zantac. Something I take occasionally myself. 

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@MissMermaid

Very sorry to hear you are dealing with that. 

I'm struggling a lot with nausea at the moment, too. I've had bad nausea that comes and goes for about a decade now, but over the past year or so, it's gotten a lot worse. I really struggle to eat, especially in the morning. 

I eliminated gluten which did help a fair bit, but I still seem to get days where I just feel so sick to the stomach. 

My tips (but by no means are these cures) would be having a soothing cup of tea, peppermint flavoured sweets, heat packs (I do find that helps settle my tummy a bit), trying to determine if you have any food allergies, and prescription meds if the nausea keeps going. 

It's frustrating that nausea is such a common symptom of Dysautonomia. I really hope you find something that helps! 

Lots of well wishes. 

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I agree with @DizzyPopcorn. I use ginger ale, the real stuff with true ginger in it, and it helps a lot. My mom steeps a bit of ginger root in hot water and drinks the tea for nausea. 

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My doc thinks my nausea (along with stomach pain when eating) is gastroparesis. My understanding is that gastroparesis is your stomach's version of dysautonomia. I do a 3 day liquid diet (except breakfast, I just can't) and the symptoms improve for a bit. :)

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Thank you @Scout for your tips. Am sorry to hear this is a common symptom for you too. 

@DizzyPopcorn I usually have one or two ginger teas a day. I still have symptoms but I’d like to think the tea is beneficial 😊 

@Wufflebear I have read that Gastroparesis can be common alongside dysautonomia. It sounds very uncomfortable to have. 

I hope you all are doing well and as always I appreciate the responses 

 

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When I am symptomatic enough that I'm not sleeping, I will get nausea. A couple of weeks ago I could barely eat anything for days. Calming my nervous system in general also calms my GI issues. I think one of the biggest problems with POTS is that there are so few doctors who treat the whole system, you just get specialists who only treat one system and ignore the rest. It really is all interconnected.

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23 hours ago, KaciCrochets said:

I think one of the biggest problems with POTS is that there are so few doctors who treat the whole system, you just get specialists who only treat one system and ignore the rest. It really is all interconnected.

Couldn’t agree with this more! I see so many doctors just to treat certain symptoms, and it would definitely make my life easier if there was just one doctor to treat the whole system, but alas...

I am currently also stuck in an awful wave of nausea symptoms. Not eating as much, wakes me up at night, etc. Just stick the ginger straight into my veins!!!

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So sorry so many have GI issues.  Most of you talk of nausea, but I wonder if anyone has extreme burning stomach and GERD symptoms.  Sometimes I wonder too if this dyspepsia is related to dysautonomia or just a separate GI condition.  I tend to think everything is related maybe too often too, but I was diagnosed with GERD after dysautonomia.    IIn any case, if anyone has this, do you have anything that has worked for you?  I have tried it all, ginger, chamomile, antacids, and have tried H2 blockers, but they make me even more dizzy and worsen tachycardia (hard to believe, I know, as most people tolerate these just fine), but I have a separate chronic vestibular condition, and any meds seem to worsen the dizziness, so kind of up the creek there, but am getting kind of desperate, as it has worsened to the point where I am having trouble eating, and am very thin.  Any suggestions at all appreciated.  I know I need to return to my GI doctor.  Thank you.

 

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@Amyschi I have GERD and IBSD from Dysautonomia. My GERD at some point was so bad that I developed esophagitis and duodenitis. What helped me most are proton- pump inhibitors, in my case protonix. But when I was bad I also took carafate, Zantac and something called GI cocktail, which is a mix of viscous lidocaine, mylanta and phenobarbital. This mix healed the inflammation, stopped the GERD and I am now only on protonix and zofran. Also changing my diet to frequent small snacks rather than 3 meals a day and refraining from raw foods helped immensely. 

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Thank you so much for this info, Pistol!   I appreciate knowing what has worked for you.   I think it is related to the dysautonomia too.  I was just reading something about "chronic abdominal pain syndrome," which they are calling a functional GI problem due to brain hypersensitivy, something akin to fibromyalgia.  Interesting.  Also similar to "functional dyspepsia."   It probably all goes back to the nervous system.  So glad you are doing  better on your regimen.  I am going to need to get on this, I know, even with the side effects.  It just is not possible to treat it when it is that severe without intervention.    Take care!

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+1 to the concept that it's all related. For me, dysautonomia seems like random set of interconnected symptoms, including my GI.

Here are just a some of the ways they seem interconnected for me:

1) I can see a bright light and then have immediate gastric emptying.

2) My GERD at night often increases my sleeping heart rate and then makes my POTS way worse for the rest of the day.

4) High HR often leads to tinnitus, nerve pain and brain fog.

5) Eating a medium to large meal makes my POTS and presyncope way worse.

6) Stress makes my hands shake and spasm and often leads to gastric emptying. 

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Thank you for this insight, Random!  I agree.  Since I've been in a severe stomach flare, POTS symptoms/weakness are much worse.   Even increases palpitations and dizziness, just a continuous cycle.   Can I ask how you treat your GERD?  TY,.

 

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@Amyschi - I treat my GERD with Zantac (though the US recently pulled it from shelves - I have some stalked up) and TUMS. I also avoid things that make it worse, like eating sugary or spicy foods, eating large portions, consuming alcohol and not sleeping enough. Also, keeping a tight lid on my allergies with H1 and H2 blockers, and nasal sprays helps a lot. I also stopped taking salt tablets because I noticed they caused GERD. I replaced salt tablets with a salty water drink recommended for hydration by the WHO and one of my doctors.  I replace the real sugar with fake sugar.

Nevertheless, I can get a spike in GERD if I let myself get stressed, if I stand up too quickly once, or if any number of other things happen. I know how to make it less bad. I don't know how to keep it from happening...

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Thanks - yes, too bad the Zantac was withdrawn if that was controlling things for you.  Hopefully they will bring it back or maybe you can switch to another H2?  I'm surprised if you never had to use a PPI?  I've read that the H2 blockers become ineffective after a few weeks?  Maybe you took it just during flares?  Appreciate your insight. 

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@Amyschi - I started taking Zantac once in a while when I'd feel heart burn. I later noticed that I slept better on nights after I took Zantac. I ran some experiments, and it turned out that I sleep better after I've taken Zantac. So now I take it every night. On nights where I've forgotten, I don't sleep as well. This is common for "Silent" GERD.

From https://rehydrate.org/solutions/homemade.htm

```Give the child a drink made with 6 level teaspoons of sugar and 1/2 level teaspoon of salt dissolved in 1 litre of clean water. Be very careful to mix the correct amounts. Too much sugar can make the diarrhoea worse. Too much salt can be extremely harmful to the child. Making the mixture a little too diluted (with more than 1 litre of clean water) is not harmful.```

I use one packet of Splenda rather than 6 level teaspoons of sugar. I am trying to manage my weight. I've used Aspartame a few times, but prefer Splenda for some reason. I've bumped the salt up to 1 teaspoon before. I like this better than the salt tablet because it goes in slower and it goes in along with H2O, so I don't need to worry about balancing my hydration as much.

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Oh, I forgot to mention, actual sugar in those quantities tends to give me heartburn. 

I keep a water bottle with salt and splenda in it next to me day and night. This way I have fewer fluctuations in salt intake. I find that quick variations in salt intake gives me headaches. 

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Thanks for this good basic recipe - you are right, so much easier on the stomach, I think, than sure salt tablets, as it's diluted.  Hope they bring the Zantac back soon!

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