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Sheila1366

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Everything posted by Sheila1366

  1. I have gastroparesis. And all that you shared is something I have often. At first the symptoms were really bad reflux and pain in my gut. Reflux so bad I would lose my voice. I have only vomited a few times but have many friends that have gp that vomit all the time. A GI dr. can perform a gastric emptying test to see if you have gp. I have had gp since 2008 but not til 2010 did it get bad. I was overweight when it started to get bad , so I had a weight buffer. I am down 90 pounds and still losing. It is a horrible thing to have. I hope you don't have it. But the best way to be sure is the gastric emptying test. In the meantime stay away from fiber, raw fruits and veggies. Very small meals 5- 6 times a day. Keep a diary of the foods you eat and that bother you. I am no longer eating solids. I have found that dairy and gluten seem to make things worse for me. I drink Boost and PowerAde. But people can be at different places with gp.Not everyone gets to this point, some can still eat solids. One thing I know for sure is everyone is different. And each day can be different. What might be ok one day may not be the next. The vagus nerve controls so much. With dys. the chances of developing gastroparesis , I have found, can be common. So sorry you are suffering. Praying things get better for you.
  2. I have gastroparesis also. Have eaten some food,not a lot. But I feel super swimmy headed. BP is high when I stand up 120/114. BP gets low when I sit down. Have no idea what is going on, feel very faint.
  3. Sorry to hear of your diagnoses. I am going to Vanderbilt in July in hopes to find out what form of dys. I have. My dr.'s have mentioned PAF and Shy-Dragers. I too have gastroparesis. In a horrible flare. Seems I am in a flare all the time. Pain and nausea just keeps getting worse. I have the numbness in my arms and hands, if I sleep on my right side my left hand and arm will go numb. I get very shaky sometimes too. Not to mention trouble breathing and lots more stuff that makes no sense. Hope some answers are given to help you.
  4. Was 141/120 last night and now in the low 90's over low 50's. Have been in bed all day. So weak. Is this typical stuff with dys. I have so many questions. can't wait to get into Vanderbilt.
  5. Thanks everyone. I think I am dehydrated again. I can't seem to stay hydrated. So hard with the nausea and pain. I am going to call my dr. in the morning.
  6. Thanks for helping me with this. Is this serious? I feel so lost right now. With this and the gastroparesis, I have so much going wrong. Is this something that warrants calling my cardiologist or going to the ER?
  7. I have been very bloated all week. Gastroparesis is giving me a hard time. On liquids but hard cause of nausea and pain. Today I was feeling weird, heart felt funny, pain in chest and back, nausea , was shaking. So checked BP and it was 141/120 and heart rate was 78. Have checked it a few times since then and it is staying around 110/70 but heart rate is higher...86. Still feel funny. I was told on a facebook dys. page that when there is less than 30 points between the two numbers that could be serious and may need to go to the ER. Anyone else know what this may mean?
  8. I have been dehydrated many times and needed fluids. I also have gastroparesis that makes me so sick to my stomach and lots of pain. In another downward spiral. So hard to get in fluids. I have read that others with dys. have trouble staying hydrated. Is it due to nausea for everyone?
  9. I have times where it feels like my body has forgotten how to breath. I had an awful spell Monday. I have some 02 to help me. Even taking a shower can be over powering, hard to breath. Have to turn down the temp. of the water and keep the curtain half opened so I can breath. The steam and heat make me feel suffocated. I always start off having to take deep breaths , some coughing...then the breathing gets very difficult. Horrible feeling. Scary too. A few times when I was so sick from dys. and gastroparesis...I was afraid I would stop breathing all together when I went to bed.
  10. I have many friends with gastroparesis and require feeding tubes of all kinds. It is something that I am fighting very hard to stay away from cause I know how difficult it is. So sorry you are having to do your feedings this way, I can imagine as a mom how hard it is for you.
  11. I also have gastroparesis and colonic inertia. My diet is mostly liquids. I drink Boost ( can't do dairy, soy milk, rice milk, coconut milk...all caused pain). I mix in some PowerAde too. I can get by with some baked potatoes and peanut butter crackers at times. And when I am feeling really wild a can of chicken noodle soup. My diet is mainly a diet to keep me off feeding tubes. I am losing weight still but not too fast. I have found that a liquid diet is best for me. I don't tend to have as much pain or nausea. But I can end up on the floor in pain even on all liquids. They joys of gastroparesis. And thanks to a colon that barely works anymore I need to stay with a mostly liquid diet or else things don't move along very well and have to use large amounts of miralax ( dr.'s orders ). And to add to my wonderful mix of problems, due to a bladder that is losing it's functions, dr. said no caffine or carbonated drinks. My diet is pretty simple but boring. I will take it though over feeding tubes. Have many friends that need feeding tubes to stay alive. Those tubes get infections so easily, scares me. I do enjoy lollipops though, I get those wonderful Gourmet Lollipops, cotton candy flavor. I can have these on days that I am needing sugar for my hypoglycemia or on days that I am a little hungry and don't need to eat or feel too full to drink. Life is full of fun things, isn't it?
  12. I have noticed a bit of anxiety and depression creeping in on me. I have had depression before, at times very badly. Being sick for so long, since 2010. It could be just from that. It has been a very tough year for me and my family. So many things that could be adding to the sadness. But I wonder how many find that anxiety and depression increase when your dsy. gets worse?
  13. Sounds like my house. Sorry you both are having a tough time. I have gastroparesis also. The whole digestive system is slowing down plus my bladder is losing some function too. Fun stuff, not!
  14. Nope, not on a beta blocker. Wonder what the dr.'s at Vanderbilt will do with me in July.
  15. Thanks everyone. It was one of the weirdest feelings. To be waken up feeling like the bed was flipping. I am trying to get in fluids today. I have gastroparesis too, so the nausea is even worse along with horrible stomach and chest pain. Dehydration is such a problem for me. I did notice that my heart has been beating irregular today, not the first time. I did have an abnormal EKG in the ER last year. had some tests done on my heart and it was fine, did have some irregular beats and other things, but nothing to explain the abnormal EKG. So can't wait to go to Vancerbilt. I am wondering if they will do more tests while I am there since I am getting worse. Dropping weight and these weird dizzy spells along with near fainting spells. I thought we are going to have to call EMS to transport me to the hospital. Still may happen.
  16. I woke up twice during the night feeling that the bed was spinning. I thought, oh no, this is new. When I got out of bed, the dizziness did not stop but got worse. I checked my blood sugar and BP/HR. All were normal. Nausea and stomach pain got real bad too. Anyone get these dizzy spells? I had some pressure and discomfort in my ears but think that was from almost fainting. I am staying on the couch today.
  17. Thanks so much Carrie. I have only gotten about 30 mins. into the video, gotta take a break and try and get some sleep....but what I have seen so far is so great. You have helped me so much. I go to Vanderbilt in July, I am going to watch this a few more times and take notes...going to help with my visit for sure and with some questions I am gathering up to take. Thanks again for sharing. I am going to have my family watch this too.
  18. I am starting to notice that I get dehydrated a lot now. I have gastroparesis too so the nausea and the filling very full after drinking anything...makes getting in fluids tough. I have had to get fluids a few times in my dr.'s office and have had a few bladder infections from being so dehydrated ( plus my bladder is losing function ), dr. said my urine was like ammonia and full of infection. The last time I got dehydrated it didn't take long before I was at a critical state. I also have hypoglycemia and my blood sugar got down to 58. I was so weak!!! Why do we get dehydrated so easily? I have read others have this problem.
  19. Thanks everyone, great to not feel alone...not great that we are all suffering though. I am layered right now. And you are right Katybug about the clammy wet skin getting cold once we cool off. A cycle of back and forth. I do notice too that when I am going down hill again, which is more often than not it seems, I get super cold. Even teeth chattering cold. It can be 80 degrees out and if I am getting sick I will start to shiver. I had no idea that dsy. did all of this too. I am learning more and more each day. Like the importance of fluids. I get so dehydrated now. With the gastroparesis on top of this, the nausea is a big issue getting in fluids. But if I get dehydrated I will get really bad like this. I am sitting here now with my gown on, sweatshirt on, a blanket over my legs...got the shivers. But in a few minutes will be sweating. I feel like a stripper all day long...husband loves it.
  20. Thanks corina. GP is gastroparesis, sorry.
  21. Dave, wow! While I was reading this, I got goosebumps. I was reading a lot of the same problems I am having. First off I got to say as a mother to 2 adult daughters that have serious health issues, my heart goes out to you. You are so young to be this sick. Secondly, I have gastroparesis along with dysautonomia ( not sure what form yet, go to Vanderbilt in July ). I wonder has anyone mentioned gastroparesis to you during your GI problems. I started out with severe reflux, to the point I would wake up hoarce. Raised up the headboard, helped very little. Then the nausea and pain came. I had a gastric empyting test and found I have gastroparesis. I horrible disease. I pray you do have this but it may need to be looked into. I was diagnosed with dysatunomia first though. I had near fainting spells, heart would race and get close to 200 beats a minute then drop...etc. Had a tilt table and found I have dysatuonomia. These were both diagnosed in 2008 but not til 2010 did they become a real problem. I am so sorry you are going through so much. I also have the crazy feeling you described with before I try and go to sleep, sleep takes along time when this keeps happening. I also get freezing cold. I have raynauds also. Super cold hands and feet at first. Now I can be freezing, under as many quilts that I can get. Once I warm up I start to feel better, but it never lasts. I am still learning a lot about all of this. Have so many questions. Have had lots of help here and so questions answered and just great support. Welcome to the club. Hope things get better for you and you get some answers. Keep looking.
  22. Heading into another flare....they seem to run together now. Between GP and dysautonomia ( is there a shorter way to write out dysatuonomia ?) . I am so tired, feel faint all the time, extremely weak, heart is going from wide open to slow, hypoglycemia is doing ok right now, still able to get in enough calories to keep it up. I am just going downhill fast, again and don't understand why. I go to Vandy July 29. I have so many questions. In the meantime, anyone know what is going on with me? Thanks!!
  23. Thanks everyone. Alex, great help. I will look that up. Blue, you are right nothing out there for gastroparesis. It *****. I have been an emotional eater my whole life. Now that food is not my friend, it has made coping with life a bit difficult. I have rededicated my life to God and have really grown in my faith during this time and the most recent 9 months of pure torment during my youngest daughters severe illness. I will try the getting up and walking next time. Heading into another flare. I use to go longer between flares with the gp and dysautonomia but now it seems to be on my heels all the time. Now I am freezing and then hot, then freezing for a long time then hot. Heart racing, feel faint all the time, so tired! Pushing fluids the best I can to keep from getting dehydrated again. Life is so much fun!
  24. Thanks everyone. Alex, haven't had my adrenal glands check, thank for the idea. I will do that for sure. Alice, I have the jerking too, often when I am very tired. But the feeling I have is like a rush in my whole body that almost feel electrical. It scares me. I can even been waken up from sleep from this. I go to vandy soon, 1 of my many questions.
  25. I also have gastroparesis and the nausea can be so very bad, I am down already 90 pounds thanks to GP. I am on a mostly liquid diet other than an occasional baked potato or crackers with peanut butter. I drink Boost with protein and PowerAde ( I think it tastes better than Gatorade). I have been dehydrated many times that will lead to a bladder infection from my urine being so strong from ammonia. It is a juggling act to get in enough fluids with constant nausea. I take liquid phengran everyday. It helps me better than Zofran. Sorry you have this awful nausea and vomiting. It is very common part of gastroparesis. have you been checked for this?
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