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juliegee

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Everything posted by juliegee

  1. Hi There! Ditto to everything Melissa said. I forgot to mention that, for all of it's negative side effects, reglan helped my son be able to eat. He had lost 15 lbs in a very short period of time. So, it does work- but can have very negative side effects AND some of those side effects persist beyond the time you stop taking the med. Please check out alternatives if you are on reglan. Julie
  2. Hi Dionna, Have you had your thyroid checked? You sound like you have an overactive thyroid. You aren't experiencing nausea or stomach pain after eating are you? Julie
  3. Tanzanite- I hope you get this message. Metoclompramide is the generic form of reglan. I've learned from watching my son suffer and from hanging out at the Yahoo Gastroparesis website- this is a BAD drug- especially for someone with POTS. My son was on this drug for 5 months before we had to switch him. Everyone of the GP site warned me that reglan would cause negative side effects and boy, were they right. I have been on that site for a year and a half and NOONE has been able to tolerate reglan long term. My son developed anxiety and he couldn't stop moving when he was on that drug. He would just walk circles around a room, never stopping. Reglan is also associated with depresssion and tachycardia episodes. There are better prokinetic/anti-nausea alternatives for you to try. Domperidone and erythromycin can be very effective prokinetics. And zofran or kytril are great for fighting severe nausea w/o sedative effects. Best of luck to you! Julie
  4. Hi Anne - I am also very active on the Yahoo International Gastroparesis Website on behalf of my 13 y/o son. I know MANY there with dysautonomia, who safely take domperidone. Why not give it a try? If you have any negative side effects, you may want to try liquid erythromycin as an alternative. In tiny pediatric doses, it irritates the GI tract into emptying more quickly. My son has been on "E" for almost a year now- prescribed by his motility specialist at Johns Hopkins. Yes, domperidone is not available in the US. But, it is sold all over the world, OTC in many countries and is much, much safer than reglan- the prokinectic of choice in the US. Domperidone doesn't cross the blood/brain barrier, unlike reglan, and works only on the GI tract. Many members of the GP site, with their doctor's prescriptions, order it at "The Global Drugstore" online. They have fast, reliable, economical service. Best of luck. I know, from watching my son suffer, how debilitating gastroparesis can be. But, it can be managed effectively. Julie
  5. Hi Radha, I'm a newbie, so forgive me if my suggestions are old news to you. I've had the same thing happen to me when I was in the hospital with really bad tachy- 180-200bpm. I was breathing really fast and the ER doc said I was having a panic attack. The only thing I was paniced about was my out of control HR! It seems to me that it's a chicken or egg question- which came first? Chances are your fast HR is what's causing the rpid breathing. Mt doc has recommended bearing down like you are about to have a BM to slow the HR. It seems to help. When my HR is slowed, my breathing returns to normal. Hope this helps. Julie
  6. Thank you, Ernie! That really answers alot of my questions. Seems like the experience is pretty varied for everyone. Julie
  7. Hi Dayna- I'm Mack's mom from GP site. I'm sorry to see you here, too. I've been on beta blockers a few times and I've alse felt really tired and experienced a lack of ambition while on them. They do squelch horrible tachy episodes, but I don't like how they make me feel. I keeo them on hand, in a low dose, for when episodes hit. In the meantime, I avoid all caffeine, eat healthily and exercise. That seems to work as well as beta blockers for me w/o the exhaustion. Hugs- julie
  8. Hi All- I've got another quick question. I think I will have a colonoscopy shortly (I'm having problems) and I'm wondering if anyone has had a problem with either the prep or procedure. I had one 4 years ago and had a hard time with prep- vomiting and an inability to drink all of that stuff. Then during the procedure, I was quite vigilant. Versed seems to not work too well for me. And, it was really painful. I remember trying to scream, but no sound came out. Anyone else have a hard time and willing to share your story? Thanks, Julie
  9. Hi Amy, Thanks for all of the info. Yep, I've had all of the tests you mentioned. The holter,of course, documented the tachy, but my doc didn't seem too concerned with any of the results. He keeps putting me on beta blockers, but, like you, they make me feel tired. I feel better with no meds. I'll mention the whole POTS idea to my doc next time I'm there for something else :-) I am currently on a non-dairy diet as I have gastro problems (reflux and chronic constipation.) I've wondered about gluten-free. Doing both would be really tough, but I may give it a whirl. I do try to avoid suger and simple carbs- didn't know that helped with POTS. Thanks for all of the wonderful information. I hope you can stay off the meds, too. Julie Thank you, Tanzanite, Ernie & Corina! You all make me feel better. I don't want a TTT and I really feel that it's not necessary. My poor son (13 y/o) had his at Johns Hopkins, while in the midst of an antroduodenal manometry. (He had probes up his nose, down his throat and into his tum and small bowel.) With all of that equipment, he vomited before fainting and needed a few IV saline bages to get back to normal. It was really frightening. I'm really strong for him, but a big baby when it comes to myself. Thanks again for your advice. Julie
  10. Hi Jacqie- I'm sure your symptoms are nothing alarming. But, with a strange visual disturbance and a persistant headache, I'd check in with your PCP. Both can be indicative of an aneurysm. Please keep a close watch on your symptoms and let us know how you're doing. Julie
  11. Hi All- I'm not formally DXed. But, I recently did a poor man's tilt table test that firmed up POTS for me. My resting pulse (while lying down) was 64. Within 8 mins. of standing upright, my pulse was up to 128. I felt lightheaded and nauseous and my vision dimmed. I've been symptomatic my whole life, with very severe symptoms at times: syncope, severe tachy, adrenal rushes, flushing, pain when breathing, aching feet, severe raynauds, etc. I'm actually doing pretty well now- not too many symptoms. Praise God! I was just wondering if I should bother formally confirming my DX. I've been on atenol and verapamil and don't like how any of the beta blockers make me feel. I excercise daily and am really careful to stay hydrated. I also use lots of salt. I'm afraid of the tilt table test and think I'm doing OK now. Is there anyone else out there who doesn't participate in any formal medical treatment? I'm also the mom of a teen with NMH, CFS and severe GI motility problems. I guess that apple didn't fall too far from the tree (Hi Dayna from GP support group!) Thank you in advance for any advice & for sharing your experiences. Julie
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