Two Questions

[cardiactec]

Two questions to ask :

1. has anyone here gone through with the enterra therapy procedure for gastroparesis? (the neurstimulator for the stomach). I am highly considering it as I have made a fourth ER trip within two weeks because of horrific nausea and vomiting from gastroparesis. I have tried all the pro motiliy meds out there along with mostly all the anti emetics i can think of and nothing really helps........

2. there is a member here who lives in maine who worked at the hospital that i am having troubles with currently (trying to keep my job, trying not to get fired from having a disability). I know you had troubles as well, and if i remember correctly had gotten fired from this hospital because of passing out.............? if you are out there, please please get back to me via private message.

thanks.

[ajw4790]

Hi,

I had a couple of thoughts I thought I would throw out there...

Are you taking any meds that can increase gastroparesis symptoms?

Medications associated with impaired gastric emptying

Narcotic pain medications

Tricyclic antidepressants

Calcium channel blocking medications

Clonidine

Dopamine agonists

Lithium

Nicotine

Progesterone containing medications

http://www.gi.org/patients/gihealth/gastroparesis.asp

If you have GERD are you treating that to maybe decrease the nausea?

Has abdominal migraines been ruled out as possibly making things worse?

Have they made sure that with all your current symptoms that you haven't developed a bezoar etc?

And you tried all the meds for gastroparesis and nausea, including erythromycin? I think before when I had gastric spasm issues they prescribed meds that can be used for other spasms as well (not just for stomach), I don't remember any names but I wonder if that kind of thing would be helpful? Also, would any of the supplements that reintroduce the good bacteria into your digestive system be of help?

I was trying to brainstorm ideas... I am sure you have likely tried everything under the sun, but I sounds like your symptoms have increased and are unpleasant etc. I wish there was some way to help... I hope you find some relief soon!

[cardiactec]

hey ajw,

thanks for your message.

Yes, they have ruled out any meds I am taking to be the cause of all this. Actually, I have had these symptoms *mostly nausea8 before I was ever diagnosed via gastric emptying study and before i was ever on any meds at all.

I dont have GERD so not an issue there.

never heard of abdominal migranes? how is that diagnosed? what is it?

yes, tried erythromycin, reglan, compazine, tigan, zofran, promethazine, domperidone, and other ones i cannot remember.

it is so wierd - get this - so two weeks had passed and i was in *and still am* in a state of misery. thursday night it was aweful and i was thinking how the heck i was going to be able to deal with this and trying to think of some way SOME thing could help and just really wanted a sign of some sort............the next day i went into work feeling miserable. i had this patient, 56 year old gentlemen, to do an adenosine stress test on.....he started telling me about his history, med problems, and said he has gastroparesis which was by far the worst thing out of all his med problems. my jaw hit the floor. and THEN if THAT wasnt enough confirmation of someone to help me in my decision making in what to do and also to have someone understand where i was coming from, he went on to say that he had the gastric pacer put in a year ago and it literally saved his life! my jaw hit the floor again. kinda cool. i take that as confirmation perhaps to try the GI pacer as all else has failed and i have been even more symptomatic lately.

I thought about the bezoar too.............my WBC were up the last ER visit......wonder if this is a possibility.

thanks again for your message..........

[juliegee]

Angela,

I am so saddened to her how badly you've been doing lately. I've been wanting to write, but things have ben CRAZY here. My heart breaks for you. You are another of my favorites here. I've admired you're ability to maintain your full-time job as a cardiac tech, while you are probably suffering more than many of your patients.

My son and I have gone through awful bouts with gastroparesis/intestinal dysmotility caused by autonomic dysfunction. I learned so much through the Yahoo gastroparesis support group. The knowledgeable folks there actually DXed my son before the doctors at Johns Hopkins did & got Mack to the right group of doctors in Baltimore. They essentially saved his life, and gave him QUALITY of life once again. Please check out information there re. the pacemaker and alternative therapies that have worked for various members.

I have seen many members try the Enterra therapy with mixed results. The vast majority (esp. those with GP caused by autonomic dysfunction) did NOT improve. The improvement may not occur for them because their autonomic nervous systems are still wacko even with the pacemaker in place. Perhaps the regular rythymic contractions provided by the pacemaker are overridden by the dysfunctional autonomic nervous system that is their host. Most folks still experienced severe nausea even after the pacemaker reached it's final setting. The ones who were successful were the patients who had GP due to diabetes, that they had under good control BEFORE having the pacemaker placed. I hate to dash your hopes, but please read all you can there. The pacemakers also can cause awful infections and complications in some patients. It's difficult to find docs who will remove them once they are surgically placed even when they are not helpful.

The key for us has been to control the autonomic dysfunction and treat the GP at the same time. I read that you had tried all of the various GI prokinetics. None provided any results? Hmmm. My son also tried them all & each provided a plethora of side effects, some helpful, some not. It really is trial and error with these meds. Some research suggests that some prokinetics lose effectiveness over time and you need occasional "breaks" to allow the meds to work more effectively. That has not been our experience, however. Once we found a prokinetic that worked. It continued to work for many years. Reglan is particularly awful, many have great results with domperidone and erythromycin. Tweaking the dosages and timing is critical to success. Don't give up too easily.

Angela, I know your ANS problems are quite severe and complicated. I have a few questions for you. Do you suspect that you have low blood volume? Have you ever tried florinef (along with fluid loading and salt tablets?) Florinef helped my son more than any other ANS med he tried. It also increased his energy and stimulated his appetite. I still occasionally use it to help me through bad periods when I am having trouble eating.

I also recall that you are particularly opposed to trying an antidepressant. My son takes lexapro, not for depression or anxiety, but purely to treat his ANS. That, also helps to increase his appetite and stabilize his autonomic nervous system. If you consider this, PM me as I will help you with what to expect. Very hard to acclimate to, especially if your body is low in seratonin.

Treating EVERY GI symptom is also vital in overcoming GP. You said in an earlier post that you don't experience GERD. I find that hard to believe. You may not feel the symptoms, but chances are, if your tum isn't working properly, and your food is sitting around for a long time, lots of acid is working to break it down and must occasionally slosh up to your esophagus. Try adding an acid reducer with everything else and see if that helps. If you lean towards the "C" side of things, use Miralax regularly to keep things moving downstream. Any dam in the GI tract backs everything up, causing that awful bloating and nausea.

Low fat, low fiber, no dairy. White food is good: rice, baguettes, pasta chewed really well. Vitamin waters are a godsend. pureed vegs and fruits, chicken broth. Try to walk if you can. Moving your body, moves your tum and causes it to digest.

Honey, I know you feel awful and must have lost oodles of weight. As you do, your autonomic stuff will worsen and this can become a horrible downward spiral. I've been there, so has my son and various family members. You will get better. You will return to your previous level of functioning, and can even improve from there. I know you have so much worry about the financial end of things too. Please continue researching Enterra and consider some of my suggestions. My son went from 5'8", 100lbs to 6' 1" and 175lbs today. Within weeks of his regimen, we saw dramatic improvement. You are most definately in my thoughts and prayers.

Big Hugs-

Julie

[ajw4790]

Hi,

How are you feeling? I have run across some places that suggest Mestinon for gastroparesis etc. Have you tried that?

I ran across some different suggestions on this site than what I have found on some others and it lists drs. as well. Maybe if you were able to find someone semi-close to you that had a greater understanding of this it would help? http://www.digestivedistress.com/main/page.php?page_id=1

Also, I had a thought that I have extreme nausea etc. when I drink hot liquids due to the vasodilation in the gastric system, and wondered if hot drinks or food could have some part in some of your symptoms?

I hope you are feeling at least a bit better! Keep us updated!

[juliegee]

I'm worried about you too, Angela. Tell us how you're doing.

Hugs-

Julie