Gastroparesis with severe symptoms!
Does anyone have gastroparesis (low stomach emptying) and what are you doing to manage the problem. I was finally diagnoised with this condition this year after at least 3plus years of unexplained illness. Most of my symtoms were related to pain in the chest; deep back shoulder pain; lightheaded/dizzyness; I always felt like I was having a heart attack. But each time I went to the ER all the heart test came back fine and was told it was just acid reflux. I have been to cardiology; neuralogy; gastrology. I have had heart test; stress test;;thryrod; diabectic test; all kinds of blood test (only showed low vit D) MRI of brain; spinal tap. Finally had stomach emptying test in March – which showed 85% food still in stomach after 3 hours. I have had to switch to a no fat; low fiber diet – pretty much all liquid; soft (babyfood like) foods. If I do experiment and eat something that doesn’t move through – then I end up with the deep shoulder pain; lighthed/dizziness;; numbness in the arms/fingers and over all wekness. In order to overcome this feeling – It seems to work by drinking just water /gator aid for at least a day. I just don’t know if this all started by a nerve damage issue or if it is reverserble. I have done a lot of internet reading and there doesn’t seem to be anything to do except eating habit changes. And no one else seems to associate the pain I have with the stomach – I never seem to have stomach pain – Only fullness; nausea; bloating/gas. I also am not diabetic. Which my understanding is a reason for this condition. If you have this condition – what are your symtoms and how are you managing? Thanks
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i have had dizziness ,chest pain,bloating, headaches,gas,shoulder/arm pain all on my left side, feeling flush, lightheaded,acid refux, ears bothering me as well, loud noise hurts, heart palpatations,fatigue, feeling like i’m having a heart attack as well, been to the e.r. 3 times and the ekg and tests all say i’m not having a heart attack. had stress test, heart sonogram, ct scan of head, and abdomen… blood work …thyroid checked sonogram of the kidneys and abdomen and all have come back normal…my doctor has said it is an anxiety or panic attacks… boy i’m so lost cuz its a horrible feeling… feels like the end is coming. I had surgery for a hiatel hernia,,,had it checked when i started to get these symptoms 5 months ago and my GI said everything was ok…. blood pressure is good.. i am not over weight…but i dont feel ok….neurologist is next….. everything has come up “normal” i dont know what to do… im a coach so i do have some stress and been at it for 15 yrs. i am on xanax and zolpidem to help me sleep cuz i wake up in the middle of the night with those horrible attacks…. i lost weight but have gained some back…it is a feeling id never wish on anyone. i want to be normal again like i was 6 months ago…
Wow – You sound just like me!! Have you had your stomach checked to see if it is emptying properly? Also noticed the ears – I never mentioned that but my ears ring almost constantly – worst if I am having a bad episode. I am going to a University Doctor tomorrow for the GI – gastroparesis. But I still want to find out what the underlying cause might be and hopefully treat that. My job (postmaster) is very stressful and that has been mentioned before. I know it has been said how much stress can play in a person health. Could all come down to that. Since January I have lost 30 pounds – could have stood to loose 20 – but now I am just scared that I will continue to loose. I would love to be normal again also.
its crazy stuff….let me know how it goes with the dr. … ive been doing some research and the vegus nerve keeps popping up… im going to a neurlogist and going to ask him if there is a way to check this out
The doctor wants to change my perscription from Domperidine to raglan. Which I have read has bad side effects but if I can tolerate it should help the stomach. I didn’t have much luck with the Neurlogist but that was before I was diagnoised with the gastroparesis. I had called the office after the diagnoises to see if they would want to see me again for furthur evluation with the new condition and they never even bothered to call me back. So that was very dissappointing. I may try a different one. I asked the gastro-specialist yesterday about Vegus Nerve damage and she said that would usually only happen during surgery or accident – that the nerve wouldn’t be damaged due to virus/autoimmue/etc. she also didn’t see how come I have chest/shoulder pain/dizziness when I am having stomach issues. She didn’t see the connection – so wants to test the mobility of the upper esphagus. Let me know if you have any help with the nuerologist – I still wonder if the RamsayHunt shingles that I had last year had anything to do with this condition – as that seems to play hectic with peoples nerves and pain. But I haven’t found anyone that believes there is a connection there either.
I was diagnosed w/ gastroparesis a few years. I only had a problem when I really overate. However, I have been going through a horrible flare-up for the past 3 months. I am nauseous and feel like I’ve eaten a Thanksgiving dinner all the time. My heartbeat has risen. A stress test was ok. I am lightheaded, have low thyroid, ringing in my ears, acid reflux, fatigue, bloating, tingling and numbness in my hands and feet. It feels like I am carrying around a bowling ball and its even hard to bend at the waist at times. I was put on Reglan but it caused bad side effects. Yesterday, my GI doc put botox into my stomach thru an endoscopy. It helped me last fall but this time. This affects your life so much that its difficult for me to get out. Sometimes I can hardly drink water let alone eat. Back in the 1990’s I had 3 abdominal surgeries and perhaps that is why I got this horrible condition. On top of everything, I was diagnosed with diabetes a year ago. I take Pamelor for abdominal symptoms. Does anyone have suggestions of what I can do at home when all I want to do is lay in bed, can’t eat and my abdomen hurts? This has gotten me so down! HELP!!
Crystal Saltrelli (below message) has such a great website and support for gastroparesis. I found the site when I was first diaganoised four months agao. She is a life saver for me when I start to get depressed and feeling sorry for myself. I go read some of the facebook or her website and get a better feel for life. Right now I am having a good spell. I try to keep track of everything that goes on in the day – so when I am having a good day it helps to see if there are trigger points. I seen a UCDavis specialist a couple of weeks ago and she took meoff Domperidone as she didn’t think it was helping and prescribed Reglan. But after reading all the side effects the last thing I want to do is give myself more problems so I never started taking it. I am not taking any meds!! What she also told me to start taking for my constipation is MiraLax and a fiber supplement CITRUCEL (although Crystal website suggest being careful with Fiber supplements). Now that I am not having prog.ems with constipation – the liquid, soft food diet that I am on seems to work. I feel really good with the diet modification. almost feel like I can start experimenting with more solid gastroparesis friendly food again.
I have similar symptoms, but did not know it had a name. I had a nuclear egg study and it was found my food does not move at a normal rate, it is very slow. Is this the kind of study any one has had to diagnose this?
I had the same nuclear egg study done back in November to diagnose this. As far as I know this test is the only true way to confirm gastroparesis, although I know of some people who had that test come back normal and actually do have gastroparesis.
I have had the same exact symptoms, as well as ringing in my ears for about 3 years now and I am also NOT diabetic. First they said it was my gallbladder because I had alot of vomitting, and had gallstones that showed up on a CT scan, so they removed my gallbladder. After about 3 months I continued to have the same symptoms so then they said it was severe reflux or (GERD) and put me on medication. The “reflux” especially chest pain contined and I had a Nissen Fundoplication this past March to correct this. If they suggest this surgery DO NOT do it. It has only made the nausea, fullness, and gas/bloating 100 times worse and now I can’t belch or pass gas as effectively as before the procedure and I can no longer vomit due to the creation of a one-way valve into my stomach. About a half-hour or so after a regular meal, even very, very small portions, I have chest pain, stomach pain (from the gas), and I am bloated to the point where I feel (and look) like I am about 6-8 months pregnant. I can lose or gain up to 15 pounds in the same week depending on if I eat solid food or not, and if my stomach decides to empty or not. Eventually when my stomach does decide to empty I have unpredictably severe diarrhea with a lot of lower abdominal pain until everything passes. Unfortunately I am managing the exact same way you are. Most days I just have Gatorade or flavored water like Propel, but eventually I get hungry, eat solid foods, and suffer. This cycle never ends, it just continues on and on.
I have been told that the only thing left to do would be a gasgtric pacemaker, which my insurance won’t cover until the “official” gastroparesis diagnosis has been confirmed for 1 year, and all other methods have failed, i.e. medications like Reglan,Domperidone, and anti-reflux surgery. This won’t be until November for me and if I do decide to have the pacemaker, I have to travel about 2-1/2 hours away from my home and family to have it done. Since there are no guarantees with this procedure either I’m still not certain what to do. It is a real challenge living this way. I haven’t been able to return to work since last November and have no disability payments coming in, so my family is struggling as well. I guess all we can do is support each other, pray, and hang in there hoping for a better tomorrow.
Good luck to you!
I have Multiple Sclerosis and because of muscle weakness I was also diagnosed with GP. I had recently had a Laproscopic Pyelormyotomy and am now doing fine. I also have a lot of other Autoimmune diseases as well such as Lupus and Sacoidosis and more. Autoimmune diseases can cause all kinds of Gastrointestinal problems so be sure to get your ANA blood checked for any kind of Autoimmune activity that your Doctor may be un aware of. I also had the Nissen Fundolpcation as well. Best wishes to all!!