So Extremely Frustrated, Stuck At Road Block

[Racer]

I seen a gastro. for nausea/vomiting, who ordered I have a upper GI scope done. It was a total nightmare! I was never told that I would be put asleep for this procedure and only figured it out when I was inhaling gas (TO LATE!). Having not taken the midodrine and having nurses totally clueless about dysautonomia was a recipe for disaster. They forced me to stand immediately after waking obviously causing me to get syncopal. I kept yelling (in my drugged up state) "blood pressure" only to be told that they took my BP (when I was laying duh) and it was fine. Really proves the total incompetence of some places!

Results of the GI were totally normal, absolutely nothing out of the ordinary that would explain my nausea/vomiting, pain when swallowing. The solution for the gastro was for me to try a acid blocker and talk to my neurologist. Already tried acid blocker, didn't work! The neurologist cure all is topamax that I have been taking. So the upper GI was the only test the gastro was willing to run and is saying this is a neuro issue.

The neuro did not run any tests at all and simply gave me topamax.

Meanwhile I keep loosing weight, but the doctor is not worried even that I am underweight. I guess you need to hit a certain dying underweight malnourished point before they take you serious?

It takes many months to get appointments at these places, only to be given tiny little baby steps, like "increase topamax and see me in 6 months to see if it worked" so frustrating

ugggg why am I not being taken serious? They act like they are treating a person for the common cold!

[davecom]

I wish when I was last having severe gastro symptoms and losing weight I had sooner put myself on a nutritional supplement. I take elecare and it really helped my weight stabilize. There are many similar supplements designed for children and adults - they maybe expensive but they may also keep the weight situation from getting worse.

[davecom]

PS so sorry about your medical system experience. It can be so frustrating trying to get the help we need!

[flatout]

so sorry to hear of your bad experience. My experiences are very much like yours. I vomited for a year. Lost 60 lbs initially then kind of stabilized, losing and gaining the same 5-10 lbs every week ever since. Oh I went hither and yon, many tests, even to a top esophageal guy two states away. He did the rumination protocol (not even sure what the protocol was, though I know what rumination is, nope that's not the problem). In the end he said, have you tried Zofran? Five months of hundred mile trips for tests and that was the big answer. Plus I'm allergic to zofran, and already had drawers full of every anti-emitic, antidepressant, lyrica, cymbalta, topamax, on and on. Nothing helped, not even a cocktail of meds which included valium. Couldn't keep down water even, and the gastros looked at me like I was nuts when I asked for fluids so I went around to the hospitals every week to get rehydrated. Man, oh man, awful. Begged for a PICC just to not be dehydrated, but didn't get it until my POTS went crazy.

Eventually my cardio put me on a clonidine patch and it *sort of* settled down, but still have days at least once a week, when I vomit all day for no apparent reason. I carry the emesis bags in my purse on the rare trips to the doctor's and never leave the house anymore. No one wants to be around a barfer...

Doesn't seem to be positional. Like POTS in general, it seems to have no discernable pattern at all. Even had the nerve biopsies on the leg -- the nerves in the leg have some similarity to the stomach nerves I was told....

do you always have nausea? mine has always been "surprise!" vomit, no warning at all beyond a split second. Keep us up to date. It's not at all easy to go through.

[spinner]

With all due respect, most of them dont know DA, and they'll follow their own procedures.

Can you go up a notch in care to the cleveland clinic or somewhere?

You wont experience this kind of incompetence!

[looneymom]

Sorry Racer about your bad experience. Sad to say but it's probably time to find another doctor. Don't have any experience with your symptoms but it sure does not sound like an enjoyable situation by any means. Hope your symptoms calm down very soon. Can you tolerate milk? A protein shake might help with weight problems and nutrition. GNC has come out with a new protein shake that is loaded with vitamins and protein.

[cupcakemomma5]

Dave,where do you find this elemix?

Really sorry racer that is has not been easy. Maybe a new gi might shed somelight into things.

Good luck : )

[Poohbear]

So sorry Racer....I understand your frustration as I have been through this type of thing consistently for about 10 years now. It is not easy and you are not alone. I hope that you are able to keep the search up for someone that will be willing to help you.

For those that asked about supplements....

There is Elecare, Ensure Clear and other products at this website http://abbottnutrition.com/.

Also, for those who need high protein but don't tolerate milk very well this may be a good option....

http://www.unjury.com/store/protein/reg/products.shtml (they even have a sample box you can buy so you can try multiple flavors and see what you like best).

Of course....you should check with your Dr. before starting any of these to make sure it's something good and safe for you...some have lots of sugar so wouldn't be good for diabetics and some (like unjury) might not be good if you have kidney disease--so be safe and check with your Dr. but I pretty much have lived off of these things when I couldn't tolerate food.