Is This Pots?

[michelle159]

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.

[ana_22]

thats kinda what happens to me most of the time. my cardio (who is a pots specialists) thinks i do not have normal resentation of pots and that i have some kind of disorder of OI that does not exhibit the BP drop. Cardi says this as i have visible blood pooling in legs and feet on standing and cannot sstand for a long time (over 5 mins) without headache, dizziness, stomach pain etc.

its like saying you have this though you show no signs of it.

i too have alot of GI stuff.

are you able to work/function?

[Angelika_23]

I don't have the BP drop, and I do have the diagnosis of POTS.

[michelle159]

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?

[potsgirl]

That almost sounds like a kidney issue. Any urinary issues?

[potsgirl]

Hi Michelle~

There are a group of doctors (some at Mayo - Rochester) who believe that POTS does NOT cause a major drop in BP (maybe 10-15 points - this is explained on the home page of Dinet). The determining factor is the rise in heartrate of at least 30 BPM when you stand from a supine position. My BP drops a lot, and I've gotten a diagnosis of POTS and OI. I would definitely get a tilt table test done.

Good luck and cheers,

Jana

[michelle159]

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.

[pat57]

Did you increase your salt intake too?

You need water AND salt.

[michelle159]

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?

[Christy_D]

My son's bp doesn't drop, but his heart rate jumps from 20 to 50 beat from lying to standing. His main complaints are GI related. He complains of abdominal pain on the right side. All tests came back fine. At his appt with the autonomic dr., they noticed he no longer has reflexes on the right side where he complains of the abdominal pain. His main complaint now is nausea that lasts most of the day. He was also diagnosed with gastroparesis in November.

[michelle159]

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?

[jimells]

"Basically I go through life just scraping by. I don't have energy any more."

Boy does that sound familiar. Most of the stuff I used to do, I can't do anymore, or I can just barely do, like holding down a 10 - 15 hour per week church janitor job. It's not enough to pay the bills, so they'll not getting paid.

I went to the food stamp office on Dec 16th and applied. The nice lady said the computer won't let them make changes after the middle of the month (I was already in the computer), so I couldn't get food stamps. I guess we don't need to eat after the 15th. Now that it's the third of the month, I need to re-apply?

I went to the Houlton ACAP office to apply for welfare heating oil. They said I had to go home and call the Presque Isle office to make an appointment. So I asked the receptionist, "What do you do in this office?" She said, "This is where you come to fill out the applicaton." I'm not kidding. You can't make this stuff up.

I applied for disability a few years ago. The Government admitted I have several severe impairments, but they denied my claim anyway. The Reviewing Officer found that I could follow simple instructions at one of our country's plentiful unskilled labor employment opportunities. They also found I could work for six hours a day, even though sometimes I can barely work six hours a week! But facts don't matter to these people, only denying claims.

My partner of six years walked out two weeks ago, leaving me with the bill for a modest mobile home we purchased a year ago. I came home from my crummy job to find a Dear John letter: "I'm Leaving! Have a Nice Life!"

I owe the UMass hospital a few thousands of dollars for my non-treatment of a few months ago. This place takes the award for Bureaucracy. It's so bureaucratic, not only can I not call the neurologist, I can't call her secretary or even call the secretary's voice mail. All I can do is call some "Neurology Call Center" and leave a message, which is promptly ignored.

I filled out some forms begging for charity care, but it did no good, even after I mailed them back. Now their collection agency is sending me letters every other day.

Last week their "Office of the President" sent a letter -- asking me for a donation!

Have you ever watched "The Suze Orman Show"? She has a segment called "Can You Afford To Buy It?" People call up to ask if they can afford vacations, diamond rings, stuff like that. I sent her an email: "Can I afford to Live?" I'm still waiting for a reply.

Sometimes I feel like the Rodney Dangerfield of the medical world. I can't get no respect, diagnosis or treatment...

In the US, if you can't work, you can't get health insurance, you can't get medical care, you can't get food or shelter, you can't live. What a country. We're Number One - in ignoring people who most need help.

[Broken_Shell]

Hi Michelle,

Welcome to the forum... and nice name by the way It sounds as though you may have dysautonomia. I developed dysautonomia following a

"mono-like viral illness." To answer a few of your questions... POTS refers only to heart rate changes with standing and does not require a drop in BP. Orthostatic hypotension would describe a drop in BP, but may people can have POTS without having orthostatic hypotension. Since dysautonomia is the body's inability to properly regulate autonomic functions, you would not have to have the heart rate changes the entire time you are standing. Dysautonomia can certainely affect bowel and bladder function... have you had a gastric emptying or bowel motility study? After developing this condition I had a 2 year period where I had no spontaneous bowel movements and was enema dependent. Now I have too many BMs. The manifestations of dysautonomia can change over time, but they still represent inappropriate regulation of autonomic functions. I also know many of us women have had menstrual changes associated with the onset of our symptoms. However, my advice to you would be to see several specialists and have a very thorough work-up before accepting a diagnosis of dysautonomia/POTS to make sure that they are not missing something else that is easily treatable. You may also want to browse the forum archives and read past posts. Best wishes and keep us posted.

~ Broken_Shell (Michelle)