michelle159

Is there any tests to check for blood pooling? If you go through the works at a place that really knows about POTS can they check for this? I feel like either when I have to pee or have a b.m. that there is no more room left in my stomach. What this all feels like to me is when I was pregnant and I did have something in my stomach..that is what if feels like now. Along with the constant urge to urinate, pressure on the bladder. Thanks for the additional info on EDS. Is it your gastro dr that diagnosed you with this or a neurologist? I am just wondering who I should bring it up to. How do they check for it? I am still so worried there is some kind of tumor in there, but since I have had every test under the sun, including CT scan, vag ultrasound, abdominal ultrasound, small bowel x-ray and normal blood counts, etc etc etc, do you think I can rest my mind that this is not a tumor even though it feels like this? My POTS can on after mono in July. That is a nasty nasty infection! It is totally ruined my health and brought on all these cruddy symptoms.

Thanks for your reply. I haven't been tested for EDS. Reading a bit about it, it sounds like this is something that is inherited. I don't have any of the other symptoms of EDS other than the tight feeling in my intestines. It literally feels like there is something in my stomach that shouldn't be there. Is this how you feel? Are you confident with the diagnosis of EDS that your dr. gave you? How long have you been dealing with this and did it come on after POTS? Everytime I talk to a different dr. about the feeling in my stomach they look at me like I am crazy and don't say much about it. Sometimes the feeling feels like its up in my gallbladder and other times it feels like its near my ovary. The area around my aeorta feels hard too and pulsates like crazy but everyything has checked out as normal, yet I know its not. I am always bloated and have dealt with trapped gas, but probiotics have got the trapped gas under control, yet the bloat and this feeling remain. I wonder if it will ever go away. Along with this, I have the same odd tight feeling in my back and neck. This whole thing is only on the right side from the butt up. Nothing in the leg area feels tight. Michelle

Is it very common for people with POTS to have a distended stomach? Mine has been this way for three months. Even when I feel my gastrointestional system is not acting up too much my stomach is still very distended. Also with this comes along with a very strong pulse in my stomach as well as some areas that feel rigid inside my stomach. If anyone else suffers from this please respond so I feel some reassurance. I feel like there is a tumor in there, but I have had it all checked out.

I didn't have reflexes on my right either. Did his doctor say why this is and what is occuring on the right side???? Is his front and back (from hip to shoulder) all tight and same in the stomach area?

I have been increasing both water and salt intake. I find it hard to eat a lot of salt. If you take salt tablets how much do you take? Also do you swallow them whole? When you can get things regulated better with water and salt, does this decrease other symptoms: like the gastrointestional symptoms?

I do have trouble urinating sometimes but my kidney function test was good as well as my urine checks were ok. CT was fine too. Its been very frustrating. Now I am looking into the possibility of lyme disease. I will get my results on Jan 18th. The lyme specialist I saw thought I may have lyme rather than having had mono and he thinks this dysautonomia was brought on as a result of lyme. I have been through the works of testing with colonoscopy, upper endoscopy, full gyno workup, small bowel x-ray and tons of other tests all to yield no results other than low vitamin d which I am working on.

Luckily, I work from home so I am able to do what I need to do. Basically I go through life just scraping by. I don't have energy and more. I also have this unexplained right side pain and tightness in my stomach and have been to so many doctors without diagnosis. It is very frustrating. I am going to see the POTS specialist at the Beth Isreal hospital in MA soon. My cardiologist was pretty nonchalant about it possibly being POTS. I need a diagnosis for certain because I have a lot of odd things going on. Can POTS cause irregular menstrual bleeding? Does anyone else experience a tight feeling in the stomach on one side? Or in the back on the same side?

I got mono in July, 2009. A symptom that I had was high heart rate. I went to a cardiologist who said he thinks I may have POTS and gave me some flourinef but it didn't agree with me. I stopped taking it and then went back a month later for a follow up and he said I wasn't exhibiting the symptoms anymore. However, since then I have bought a heart rate monitor watch and whenever I go from a seated position to standing, my heart rate goes from like 73 up to 113 and then will stay about 100 while standing. Sometimes it will come back down after a few minutes (to the 90-100 range). My blood pressure does not seem to drop though but my heart rate fluctuates wildly. Sometimes it will drop fluctuate 10-15 beats a minute in just a few seconds just while I am standing. I have also been suffering from gastrointestional problems such as trapped gas, bloating and a generally sense that my food is not digesting. The other odd symptom is spotting during the month when I am not having my period. Does POTS affect this? Does your heart rate have to stay high the entire time you stand to have POTS? Does your blood pressure have to drop? If it does, does anyone have any idea of what I may have other than POTS. I find my symptoms are worse in the morning and also worse when climbing stairs. Water does help a bit but I would have to go crazy with the water all day for my heart rate to be consistent.