Sheila1366

It seems that things are just getting so much worse. Not only is the gastroparesis getting worse but so is the dysauotnomia. I keep getting this feeling of like pressure in my head, makes me feel like I am gonna faint all the time. Last night I battled with being hot one second to being cold the next. Woke up and the right side of my right hand was numb and I was sleeping on my back. Having trouble breathing. Vision is getting worse both upclose and at a distance. Just had my eyes checked and I do have chronic dry eyes but just need reading glasses. Feel pressure in my ears. Glands in my neck swell up for no reason.This fatigue is unlike any I have had. I am so tired but can't sleep. But when I eat sometimes I will get so tired I have to sleep for a little bit. But the biggest thing is this pressure in my head and feeling on the verge of fainting all the time. I am so glad I am going to Vandy In Jan. SO hope that Dr. Raj can figure me out and help me.

The lowest my heart rate got while on my holter monitor was 53. But last night I couldn't sleep cause it would race for no reason.

If I put even the smallest amount of food or liquid in my stomach, anything...I get so very tired. That "turkey dinner" feeling. I've been told that it is due to the blood rushing to my stomach and intestines and trying to get my stomach to work. I do have gastroparesis and coloninc inertia. Just don't understand. I have had no food all day thanks to my GP getting worse. But thought I would eat 1 cup of campbells chicken noodle soup. Trying to get in some kind of nutrition. And now I feel like I could go to sleep if I just put my head on a pillow. But I can't do that, got to take care of my sick daughters. It's a real problem. In order to do what I need to do I got to eat or drink something. But this is what happens.

Was up most of the night thanks to a heartrate that would speed up for no reason. And a good dose of nausea thanks to gastroparesis. Heart still beating funny. And then the awful pain that comes with a stomach and colon that longer works. Bloos pressure drops of course. Had to call husband to come home from the fire station long enough for things to settle down. My biggest fear is I pass out here with my girls. My oldest is well enough to call 911 to get help but just the trama of them seeing me faint really worries me. I fight so hard to hide the pain and nausea but it is getting harder each and every day.Now the heart racing for no reason, beating even in stomach. So wish I could lay in bed all day and just sleep, watch senseless tv and be on my computer. But my youngest is still very sick, going on 2 months now. She needs supervision 24/7. Would love a break.

Thanks everyone. I have not tried Domperidone. My motiltiy dr. didn't suggest it after I had a bad reaction to reglan. So glad it is helping you Jen.

Haven't thought of that either. I am dealing with serious motitly problems too and on a liquid diet again, hard to get in enough nutrition this way. I do cheat and eat some saltines for the salt. gatorade makes me so sick but will give it a try again to see if it helps.

Thanks. I just want to be ok. So tired of being sick.

On top of my gastroparesis getting much worse and on an all liquid diet..again, I am so very tired. Not the usual tired, like a wave of heaviness over my head and body. Feel so weak. Friday I came very close to fainting. Threw up a few times. Stomach is huge and not working very well. But the dysautonomia is getting worse to I think. The physical pain is different than my usual fibromyalgia. Dropping things all the time. Knees buckling. I go to Vandy in Jan. Hope I can figure out what is going on with me. I get scared often , things are getting worse.

Thanks diamondcut. I am on generic prilosec, liquid phenegran. Have tried Reglan and remeron. Both I suffers terrible side effects. Just started throwing up. I don't normally throw up just really bad nausea. I started getting sick, stood up to go to the kitchen to get nausea medicine and I get this wave come over me, I almost fainted. Haven't fainted since I had my tilt table in 2008.

I get this alot lately. Feels like pressure in my head and I am gonna pass out from it. Comes on for no reason.

I had to go to my GI dr. today due to a very swollen belly,pain and nausea. He did bloodwork and gave me a medicine called GI Cocktail. He is also on call this weekend incase I get worse. On an all liquid diet til things settle down. Along with this lots of pain in my neck, hard to turn head, pain in the glands in my neck, dizzines is much worse, feels like pressure in my head and numbness in face.When I went down to the dr. I was afraid he was gonna put me in the hospital. Walking is gettine worse too. Hips feel like they are coming out of their sockets and hurt. Almost too much to bare.

I was wondering about this myself. Just this week noticed pain when shaving. The blade against my legs hurt so bad. I wonder why this happens?

I can't get a break at all. My youngest is very sick and require constant care. The last few days I have been having a terrible time keeping my blood sugar up, getting very tired and feeling so weak. gastroparesis is real bad too. headaches, body pain...especially neck pain and hip and lower back. I wish we had some kind of support but no family willing to help. My daughter has special needs and since her birth family just backed off. It is just me and my husband. My husabnd is a fireman and is gone for 24 hours at a time and home 48. I was in the hospital with my daughter a few weeks ago and after 2 days ( was recovering from the flu too)..I collapsed. feel that coming on again. I just can't do that right now, afraid of when i do crash and what is gonna happen to my daughter and her care. Just so worried and tired.

I am under extreme stress. I have 2 daughters that are very ill that I am taking care of ontop of being sick myself.I feel that I am starting to have more problems, more physical pain and motility is getting worse.

I would get in to see a motilty dr. I have gastropareis and colonic inerita. Sounds like your digestion is very slow. I take 3-4 doses of miralax a day, dr.'s orders. it is a rough life, hope you can get some answers. A gastric emptying test is what you need and a sitz marker test. Hope you get the help you need, I know how you feel, it;s awful.

I am a pateint of Dr. Koch. He is very good at finding the problems. I had trouble with return phone calls though. But he will get to the root of the problem.

So sorry. I hope you do feel some sense of pride in yourself that you set a goal and made it happen. So many never do that. I hope and pray that the same drive you had to open your salon will also get you through this very long flare and through the rest of your life. I know it is hard. So hard giving up on things that bring us so much joy but maybe you can find another way to create. Maybe something you can do at home, even in bed on those bad days.There is a website my daughter uses often, she is on disabiltiy due to chronic fatigue and fibromyalgia...called ETSY. You can make things and sell it on there. Since she has been on disabiltiy she has been able to develop her own little craft and make a little spending money, plus makes her feel she is still trying. Stay strong, don't give up. I am very proud of you. my dream was to own a salon too. I got my license to do hair, worked for a short time and then became a stay at home mom. But my health has always been poor, would have never made it long standing behind a chair doing hair all day. Hats off to you.

Oh yes. I have gastropareisis also, so that added to dysautonomia I have felt many times I would just stop breathing at night.nausea and pain has been so bad I felt surely I was dying. have had many a cry spell over this which is not good cause it makes breathing and pain worse. It is very scary.

I had the same thing happen to me a few years ago, actually wet the bed,sorry TMI. Woke up super sweaty, blood pressure was very high and couldn't control my bladder. It happened in the middle of the night, called the dr. ...He feel asleep on the phone. I do have intersitial cystitis. I can go to the bathroom up to 20 or more times a day and it have nothing to do with fluid intake. It will burn like a bladder infection. I have had a few infections along with this. At times my bladder wasn't emptying very well, seemed it took forever to empty. the flow was very slow and weak. I am now taking flomax and it has helped some. Sorry you had such a scary time. Hope you can rest up and recop from the extra walking and outings.

Thanks for the support. I was a bit dehydrated the dr. told me. Was under a tremendous amount of stress too with daughter being so sick, me being sick and lack of sleep.The PA never said exactly what was abnormal with the EKG. I was so out of it, extremely exhausted, I didn't ask. Was glad that bloodwork was normal. But called my cardiologist when i kept getting pain in my jaw and chin. Plus BP is high again, but gets low sometimes too, mostly at night and early morning.I had a stress test when I was first diagnosed with dysautonomia, 2008. Never had the dye injected before.

I went to the ER last week due to what I thought was the flu. They did 2 EKGs that both came back abnormal. They then did bloodwork to see if I had had an acutal heart attack. It was normal but they said to contact my dr. So, called my cardiologist and he ordered the stress test with dye. I am worried. Just feel awful all the time. So tired,gastroparesis is a mess.I am wondering if the 2 years fo barely eating and dysautonomia has caused damage to my heart.

Thanks Lyn. I did have an echo. I am calling the nurse tomorrow so she can explain it to me.

Husband is in the hospital with our daughter. Possible seizure and shunt malfunction, first time I have not been with her and it breaks my heart. I am still pretty sick , fever going on 2 days now. Congestion in my chest and stomach is a mess. A very hard time for my family right now.

I have full blown flu now. On top of gastroparesis and dysautonomia, I am very concerned how I am gonna handle this. Heart is racing so fast, fever very down just a little,chest hurts and starting to settle in my chest. I already have trouble breathing. And to stop this off my youngest daughter is sick and may need to go to the ER.(She has hydrocephalus and having headaches)Why is God punishing me?

I got my records today from my cardiologist to send to Vanderbilt. My heart monitor results said rare echo pvc's. I remember the nurse calling me with the results but I was so out of it. When I got the records today I tried to call the dr.'s office to see what this means and the nurse is out of the office. So, thought I would ask if anyone here has heard of this.