JWPotsMom

No snow or other visual disturbances, but his world often swirls all day long (clockwise last time). He occasionally gets prickly feelings on his tongue, ringing in the ears, extremely sensitive smell (down right unbelievable!), and/or light and sound sensitivities. These can happen any time of day, but are no where near as often or debilitating as the nightly nausea.

Thank you for the suggestion! Yes he went gluten-free for three months with no change.

Upper GI revealed no inflammation or h.pylori

FWIW .. we do a lot of theorizing about causes of dysautonomia on this board.

That's GREAT! I'm sure there's more than one reason people get various forms of dysautonomia. I just wanted to chime in with what's going on over here to add another perspective to the discussion.

My DS has significant food allergies, animal allergies, drug allergies, and moderate environmental allergies.

He went gluten free for three months with no change in his illness.

We could start a whole new thread on children traumatized by POTS, doctors, medication reactions, tests, and ERs! But that would just be miserable, so let's not. : ) It's a tough choice whether or not to continue the search for answers, but we parents do our best for our babies and that's all we can do. I was compelled to continue through dozens of doctors and ERs through three states--and ended up with big bills, a traumatized sick kid, and not much else.

Yes, on-going reflux can cause permanent damage to the esophagus as well as lead to esophageal cancer.

In DS's case, nothing helped the reflux except the POTS flare quitting. There is nothing we can do about it.

Not being critical, so please don't take this that way! I am wondering about the purpose of trying a saline IV since you can't use it as a regular treatment even if it did work--or can you? That is our problem, we have something that works, but he has to go to the ER to get it. Just to add what happened here, when my son had the IV morphine (with saline) he did not improve at all which leads me to think saline alone wouldn't have helped my son--though your situation could very well be different! It might work!

No DS did not have DHE. I didn't think we had missed trying any medication ever made! : )

We went down the 'silent migraine' and 'stomach migraine' path, too. Since his migraines had slight improvement with Topamax but the nausea was not affected they ruled those possibilities out.

Phenergan didn't touch his nausea, nor several drug combinations including it.

Upper GI revealed no inflammation or h.pylori

How long are you symptomatic? How long between flares? Are you symptom-free between flares?

My son was sick for nine months, better for 5 months, has been sick again for a month so far . . .

What is DHE?

When I was researching this new diagnosis of Vocal Cord Dysfunction (symptoms and triggers mimic asthma), I learned that one trigger is GERD (which I have and PPI is no help), but one could also be triggered by larygeal regurg. I'd have him checked by ENT/Otolaryngologist.

Thank you!

Just a heads-up

Have you had any conventional testing done to verify the results?

My DS had some positive results from Metametrix, but multiple conventional testings failed to find the same results. I wanted it to be true, because then we had something to treat, but it wasn't. He did start feeling better (for about 5 months he was fine)--which theoretically shouldn't have happened if the Metametrix test had been correct.

I hope you feel better very soon!!

I get a fuzzy tongue if I eat too much sugar. Someone told me sugar makes your Candida yeast go out of control. Makes sense in my case.

Yes, the administration of IV Compazine was sometimes bad. But afterward he was better, much to my relief, though DS wasn't sure it was worth it. If they pushed it very slowly and waited to see if a second dose was needed, it went much better. It was the only thing that calmed the nightly nausea, acid reflux, chest pain, migraine, etc enough that he could sleep. But it only lasted 24 hrs.

Ah, the elusive DX. . . ! I just wondered what further requirements that nurse thought there needed to be.

I was interested to know what the mechanism is--how it relates to POTS . . . too much blood? too little blood? ???

Suppositories didn't work, either.

It was administered in the ER several times, once along with Morphine (VERY bad idea), as a treatment for the migraine before POTS DX.

Yes! My son got his first bout of POTS after a bad virus, he was disabled for 9 months.

Second bout with an antibiotic, it quit as soon as the antibiotic was stopped.

Third (currently) it started up again with a very mild cold.

This is a question for anyone who's had a positive experience with an IV of Compazine: have you found an oral med that helps?

Oral Compazine didn't touch symptoms (neither did the mile-long list of other meds we've tried), the the IV would stop them completely for about 24 hours. Obviously you can't live on an IV in an ER.

When my son went under for his upper GI he took longer --by far-- than what they expected and continued to be horribly nauseated after. This was before DX, so if I had to do it over again I would have them pump him up with IV fluid first and he would probably do okay.

I can say pretty confidently that it is not related to my son's exhaustion . . .

I had a nurse who does Tilt Table testing tell me that they don't necessarily consider the raise in 30 bpm to mean someone definitely has POTS

Can you elaborate? I was thinking that was the qualifying test.

My son has acid reflux and the feeling of something stuck in his throat brought on by POTS. The Ped GI did an upper GI, and declared my son to be perfectly healthy aside from minor reflux damage (he prescribed PPIs and hypnotherapy). No PPI medication helps--I'm assuming because it's not really GERD, it's POTS. He will reflux horribly, but only with other POTS symptoms.

He also frequently says it feels like an asthma attack while POTSy--he's been checked out and there's no asthma, it's POTS again.

These things need to be checked out just in case there's relief to be had, but I can verify from our experience that it can be 'just' POTS.

We have a clue how bad POTS will be at night by how dark the circles are under my son's eyes. It's not 100%, but it is definitely linked.

Anyone else have these? Anyone know what's going on?

Thanks!

Wondering if anyone can identify with our situation. My son always has a migraine in the background ready to pounce if he reads, is exposed to loud sounds/lights, etc. Other than that he's not symptomatic during the day (usually). He gets horribly nauseated in the evenings, bringing along with it a host of other symptoms that keep him up all night: migraine, chest pain, chills, etc, etc, etc, etc.

Does anyone suffer similarly? If so, does anyone know why someone can be completely debilitated at night when they're functional during the day?

Thanks!