P SUDIK

Julie, I have gastroparisis, and severe nausea,since I developed POTS. Do you take Domperidone? You taking erythromicin, the antibiotic? Did you have this test you are talking about? what does it involve ? I was on domperidone my E P took me off saying it was not good for POTS.

Thanks Pat

Jacquie,

Sorry the nausea is still so bad. I've already written to you about this, so disregard if I'm boring you :-) But, another possibility could be an intestinal dymotility. In POTS patients, this is almost always neurogenic (caused by nerve damage) in nature. An antroduodenal manometry can confirm, but it is very specialiized and only offered at a few hospitals. This condition has the same symptoms and treatment as gastroparesis. Basically, instead of your stomach emptying slowly, your small bowel empties slowly. The food still backs up and causes extreme nausea. The nerves in the small bowel misbehave and don't work together effectively to move the food along.

Trying a prokinetic like erythromycin or domperidone is the best thing you can do now. My son and I both use erythromycin. We take the liquid form, sweet pink stuff, just 1/2 tsp before meals. It takes the nausea and replaces it with actual hunger. It is very inexpensive and benign. If it works- chances are you DO have a motility problem.

All the best,

Julie

I really hate that you are going thru this.Because ours is an "invisible"disability, I feel like we have to defend ourselves in all aspects of our lives.It is so tough and frustrating,but I hope that you find some comfort in knowing that I and many others really understand and care about your feelings !

I wish you the best and am sending you my love and a big hug,hope you can feel it. Pat

Tammy, I had this test a few years ago, I am also very sensitves to meds.,but I did not have any problems. I wish you the best on whatever you decide.Did your Doc. give you any insight? Good luck and keep us posted Pat

Elle,Hi, I have had the 90 min. study and the 3 hr. study,in my case the results were the same. My tests were done at different hospitals

and each was conducted differently. BTW,I have a moderate case of gastroparisis,but I do have severe nausea.Good luck and keep us posted. Pat

Jacquie, I have taken compazine,it has helped the nausea,it does knock me out though.Have not heard of the other med. I sure hope you get some relief from nausea soon. Hugs Pat

Hi Flop,so good to hear from you,hope you are feeling better.Love to you and your Mum,take care of each other! Be well Love Pat

Katien,Thanks for all the updates,please give Flop my love, Pat

Melissa, sure hope you can feel all the love and support coming your way, Love Pat

Please tell Flop, I am thinking about her ,and will say an extra prayer for her tonight.Also will you give her a big hug for me,keep us posted Love, Pat

I will be praying you ,Love Pat

Morgan,I am sending you good thoughts and BIG HUGS Love P

I had a extensive lower back surgery and an infection in the surgery site,immediately following the surgery I got POTS,although I was not dx for over a year. I have black hair and dark brown eyes but very very fair skin color. P

I am thrilled for you, hope this gives you a little peace of mind! Love P

I do get the full body jerk sometimes,it always startles me,there does not seem to be a pattern to my jerking episodes.I also get tachy and warm then in a couple of minutes ,I get so cold I am shaking,the body jerks and my shaking episodes do not happen at the same time. P

Flop, I wish you the best. A couple wks ago I had a cystoscopy under general anesthesia,I was so concerned but everything went well. I had a long conversion with anesthesist,and he took good care of me,just as yours will,I will pray for you Hugs P

Who do these people think they are? Why do they think they can just say all these totally idiotic things to us? I just spent 3 days in the hospital to no avail,and encountered way too many medical professionals,I would say 90% who no nothing of POTS.

You know that saying,"you have to kiss alot of frogs,before you find your Prince" Well that is how I feel about the medical profession,I have had POTS for 4yrs and am still kissing lots of frogs. I am not saying that there are not any good docs. out there,but you do have to search.Oh and BTW Nina I have few others to add to you hit list! P

Hi I just can't believe you posted this.I have not been on the forum for a few days,have been in the hospital for the last 3 days.

I have been sob and have had a cough for over 2 wks,new symptoms for me. Wed. afternoon (doing nothing) I could not breath! I went to an Urgent Care close by,didn't want to go to the ER again. Guess what Urgent Care rushed me to the ER. They kept me in Cardiac step down. I could not have any salt or an IV,I said I needed the IV,they said no,that I could be retaining fluid( I was not.) After a cardiogram,echocardiogram,pulminary function test, a barium swallow test ,chest x rays, CT's,I am sure I am forgetting some,oh and a million blood tests, the only thing they knew for sure was that I had a very fast HR.and that my rbc was a little low.

I did not see any docs that I knew,only hospitalists. So I am following up with my pcp and a new EP.

Does anyone think this is POTS? This doc thinks it has something to do with my GERD???,wants me to have an endoscopy. Any Ideas on that? I 'm thinking my bladder muscles and my stomach muscles don't work right ,could this me something like that. The doc did say something about bronchial spasms. Please for give my ramblings,but I am writing what I am thinking. I am still wheezing and coughing,doc does not want me to use inhaler cause it causes my heart to race, anyway I am very confused!!!!! Thanks for listening and would love your opions and suggestions P

Oh my dear sweet Morgan,you are too funny,even if you don't mean to be. I too ,have been told all those things.My favorite is the Cardio, who told me all I needed was a man (BTW,I am a widow). Anyway Morgan, I really know where you are coming from,hang in there Woman.

I hope Chloe is doing better, Love P

Rachel,I use the term you used in your post "normal tired", all the time.I don't think non-potsys get it. P

Hello Helane,glad you joined us.Hope you find lots of helpful informations and new friends,I certainly have!

Hugs Pat

Hi I feel basically, the same way that Nadine describes . I feel like I have no stamina,when I'm walking,I feel like someone or something is pushing against me almost like I am running out of gas. I know that it is hard to explain.Everyone thinks I am tired all the time,that's not it.It's more like being worn out and being ill rather than tired.

Well now that I am writing this,I find it is really hard to decribe! I don't if this makes sense, but it is how I feel.

Pat

Hello again WE,I have alot of problems with meds. but I also did ok on Cipro, and got rid of my UTI,I have also taken Bactrim,good luck P

Keep us posted!

Jacquie, I do have gastroparisis,but I believe for me the POTS is the culprit ,ever since I have had POTS, I have had severe nausea ,the majority of everyday. Keeping well hydrated is about the only thing that helps me.

Good luck and I am sending you a big hug ,P

Wareagle,I hate to hear that you are suffering so much,I also have this problem.My experience is that they can find the infection with a quick test in the office,they usually start me on something right away,but more times than not they send it out to lab,and they call me and change the antibiotic,because the lab finds the specific infection.Different antibiotics work for different infections.

I sure hope this helps and that I did'nt ramble to much, any questions ,just ask Hugs P