u/LolySub

I have been diagnosed by two immunologists with autoimmune chronic urticaria. I went in for a second opinion once my old immunologist from a decade ago, put me in the too hard basket and refused to treat me.

I am so glad I waited 7 months for a second opinion. This immunologist had already had me properly tested for MCAS (I’m negative) and SIBO (still waiting cor breath test results) but has settled in it being autoimmune.

Not only did he suggest that Xolair injections could be something to try, he immediately put me on Montelukast. I have only been on it for a couple of weeks but it’s helping a little with my histamine intolerance issues.
It’s also helping with some of my autonomic nervous system issues caused by hypermobile Ehlers-Danlos Syndrome and hyperPOTS. Both of which have left me disabled and stuck inside of my house.

I’ve been lucky so far not to have any side effects from it. None that are noticeable among all my other issues, at least.

I’m going to wait for a month to try to introduce foods I react to back into my diet, but I’m happy with the results I’ve had already. If I can eat strawberries, watermelon and mango again, that would be the cherry on top of the soft serve sundae that I can no longer eat.

Have many people had luck long term with it? I’ve been on a low histamine diet for years and miss flavour. I would love to eat some regular food again one day.

The diagnoses are still coming, 3 years after becoming disabled after a routine surgery.

I’ve been diagnosed with hEDS, hyperPOTS, CFS/ME, an autoimmune disorder, gastroparesis, a bunch more and now Functional Nausea and Vomiting Syndrome.

My gastroenterologist told me it’s commonly found in people with ADHD, bipolar, OCD etc, which I have. I’ve tried 3 different medications for chronic nausea and vomiting and nothing has helped. So now that he’s diagnosed me with that, he’s going to go through all of the possible gastro medications that might help.

Has anyone had any luck with lessening their symptoms from this?

I’m nausea every second of the day, even when lying down in the “rest” position. I vomit at least once a day and, because I have no appetite and can’t eat, it’s always bile and water.

I’ve already had 4 teeth pulled out because of it and I am not losing more. But there is always acid in my mouth at this point.

I’m glad to finally have a diagnosis for it but there’s no known cause, which is always frustrating.
But it took 4 years of daily nausea and vomiting to get diagnosed with it.

I’m in Australia where we usually don’t have to wait “too long” for a diagnosis. I still waited until my late thirties to be diagnosed with hEDS, which meant my life finally made sense. And that diagnosis only came after I’d become disabled because of EDS.

Tl;dr - I’m chronically ill and disabled with hEDS and a bunch of comorbidities. Now I’ve been diagnosed with Functional Nausea and Vomiting Syndrome to explain my constant nausea and daily vomiting.
Has anyone had a lessening of symptoms caused by this awfully named syndrome?
I’ve never even heard of it. I’m looking for any sort of suggestion that may help because there is scarce information about it from what I can find.

I’ve been diagnosed with hEDS, hyperPOTS, gastroparesis, CFS/ME and a bunch more. Plus I have ADHD, bipolar disorder and OCD.

Today I saw my gastroenterologist for a regular follow up to try more medications for my epic nausea and vomiting. It has been happening daily for 3 years, since the surgery that triggered my POTS.
Now, after trying multiple different medications for nausea and vomiting, he has diagnosed me with Functional Nausea and Vomiting Disorder.

I didn’t know this existed. He told it’s commonly found in people with neurodivergent conditions. Lucky me. I assumed my nausea was being caused by the combination of hyperPOTS and gastroparesis. Apparently it’s not the whole reason?

It’s a brain/gut miscommunication. My brain is telling my gut it’s nauseas without any triggers. All day, every single waking moment. I will wake during the night a few times a month now, wretching or vomiting even though I was asleep.
Even smells can set it off.

Does anyone else have this? Has anything helped at all?

I’m about to try Maxalon and Pantoprazole for it. He’s previously had me on Ondansetron, Domperidone and nizatidine for it, but they did nothing at all for my symptoms.

I’m 41 and have received a dozen new diagnoses over the last 3 years. I thought I was done, then BAM, the worst named syndrome is laid on me.

I’m diagnosed with hyperPOTS and am also hypovolemic. I was diagnosed 2 years ago and also have a bunch of comorbidities, one of which I was being tested for today.

I had a blood test to rule out some specific autoimmune disorders, and expected the phlebotomist to take 2 viles of blood, but she took 5. I knew I was in trouble as soon as she started the fourth vile. I could feel my nervous system begin to freak out because there wasn’t enough blood getting to my brain.

I had a psychology appointment afterwards and made it through that okay, but I was half way home when I knew that as soon as I stood, I was going to faint.
(Someone else please tell me they know what I mean. I can feel the difference in my body and feel all the blood in my legs, despite wearing waist high compression tights every waking minute).

Luckily I made it until I got inside of my house before fainting, twice. Once, I was already sitting on the couch, so that’s always a comfortable way to fall.

I didn’t expect it to make such a huge difference but my poor body does not have enough blood in it.
I even had extra electrolytes and water yesterday and this morning to prepare. But it made no difference.

Next time I will make sure I get someone to drive me to and from a blood test where they take multiple viles just to be safe.

This is the first time I’ve fainted after having a blood test, so I am now going to assume it will happen again.