juliegee

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

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

I take metoclompramide which is an anti-sickness drug and also speeds up the rate of things going through the stomach. Domperidone just turns off the vomit centre, not sure why they give you this instead of metoclompramide.

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

what do i eat?

i try to stay away from sugar because that will mess my stomach up- which would make me lose more weight. i eat mostly meats. i love meat. but fried foods also mess with me so i try to just eat baked, grilled, broiled, or boiled meats. i eat a lot of scrambled eggs, bacon, sausage, and ham too. i found a receipe for german pancakes that is very filling and the receipe calls for 6 eggs so i eat that. i drink as much whole milk as i possibly can. cereals, veggies- mostly raw, tuna, fish in general but lots of tuna straight out of the can, crackers, chips, doritos, pretzels, soups, sandwhiches- quick and easy, popcorn, fruits- i love fruit, nuts, and other stuff like that. everything i eat i try to find things that are high in salt and high in calories.

i am thinking that i am just raising my metabolism too much by how frequently i eat. when i tell people that i have a problem with fainting they also assume it because i don't eat enough. my gyn thought i wasn't eating at all- i thought she was going to go buy me some food to eat.

my parents are thin too. my mom was pregnant 5 times, she wears my clothes size 1 or 3. my dad is just about 6' and i think he might weight 160. my older brother is 6' and he weights maybe 120. he is skin and bones. so it is genetics too. please can anyone help? thank you.

dionna

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

I take metoclompramide which is an anti-sickness drug and also speeds up the rate of things going through the stomach. Domperidone just turns off the vomit centre, not sure why they give you this instead of metoclompramide.

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

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

when i get a hyper, adrenaline surge, i have a very hard problem, hard time handling the fast breathing like you are running, but i am just lying down, i try to distract myself and take deep slow breaths but nothing helps, any suggestions or ways to help slow it down quicker? thanks, this is really exhausting!

radha

Thank you, Ernie! That really answers alot of my questions. Seems like the experience is pretty varied for everyone.

Julie

Hi,

You can check this link:

http://dinet.ipbhost.com/index.php?showtop...;hl=colonoscopy

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

For all of you who tried Beta Blockers did it make you feel like your condition was getting worse? I'm on BB (metoprolol) for migrianes and it seems to be helping with that but I feel so down (emotionally) for no reason and VERY VERY lazy. Not tired but I feel like everything is too much for me to handle. Even the simple things which wasn't a problem before BB. Basically my stamina is very low.

I know BB can cause depression but it's helping so much with my migraines i don't want to stop but at the same time I can't live like a zombie either.

Do some cause depression/exhaustion and some don't? I'm only on 25mg and she wanted me on 50 which would probally kill me.

Would someone have the same effects if they try Toprol since it's the same? I figured maybe the extended release would help me somehow.

any suggestions would be greatly appreciated

dayna

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

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

I don't take any medications right now. I feel as though the meds only control my heart rate a bit, and not enough to outweigh the side effects of fatigue and dry mouth. I am glad that right now you seem to be functioning well. As for confirming a diagnosis, many here will disagree with me, but I think if you've been stable for a while and have already seen a couple of doctors and had all the tests (echo, EKG, Holter, urine/blood tests, etc.), then I'd just keep doing what you've been doing. You can experiment with your diet (cut down or eliminate sugar and simple carbs, try going gluten-free), because some people here have had luck with this noninvasive approach.

I hope you continue to feel OK. I also feel for you in regard to your teen having autonomic issues. There's nothing worse than having to watch your child go through the same crappy things you go through!

Amy

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

I didn't even have a TTT. They diagnosed me by symptoms but then I had practically every symptom going and was in a real bad way at the time. Plus I already had a dx of Autonomic dysfunction from 5 years ago so it seemed pretty obvious.

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

Hi,

So this morning I woke up and felt a lil disoriented..nothing out of the ordinary, since my BP isn't all that great in the am. Anyhow, I was standing up for a little while and started seeing a black dot. It wasn't the fuzzies that you get from low BP, but one fuzzy little black dot. It moved around for a little bit then after a few minutes it was gone...

Fast forward a few hours and I have a headache. I've had this headache for a few days... But after seeing this "floating dot" it's gotten worse.

Does anyone have this problem??? I've had headaches that felt worse than this one, but this headache has been persistant for the last few days...

Thanks for any help/ideas!

Jacquie

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