Loulou

No does it work?

I think it has to do with our age and metabolism, in my 20's I was 98 pds, and in my 30's, I was about 108, now in my 40's and unable to be as physical because of my POTS. Oh, it's scary now, I'm about 134 pounds. I'm only 5'3" so that still puts me in the healthy range as far as the doctor is concerned. BUT..... I see me without clothes and 134 for me is over weight. But I cant work out now. So what do you all do when your trying to lose some weight? Help me!!!!!!

Hi Kris, Thanks for the info about magnesium. I spoke to my sister who was around horses a lot before her back injury. She said they used a lot of high powered fans. It might not help during shows but maybe you can use them when your training.

Hi, you said you were told to use magnesium as a supplement. Is it suppose to help with the heat intolerance? I'm like you, mine comes on so fast that I do not have time to make adjustments to counter it. I'm in Florida and it has been hot awhile here. I have found that some days I do okay with the heat and others are crazy and scary like your experience. If I find anything that helps I will post right away.

Thyroid nodules can also cause breathing issues, my blood tests for thyroid hormones like tsh is always normal but my doctor had a thyroid scan dine and just found five nodules. I'm waiting for the biopsy to come back now. But my point is that you should maybe get it check.

Hope your okay. Maybe there are other things going on as well. My Aunt has a pacemaker for VS because her pulse dropped just too low. Also, fever is a symtom of Mast Cell. Hyperadrengic pots can also make your bp crazy. It sounds like you need a work up by a team of doctors. Your pulse should never get to 10. You should see a doctor right away. I wish you a better day.

My BP is all over the place...

I sent an email, but just in case you did not get it. http://dukefinancialaid.duke.edu/documents/forms/loans/disability_discharge.pdf

As well, if you have more than one loan company, fill out a discharge app for each company.

Hi, there is a discharge application, for total and permanent disability. You can find the forms on line, print several, you will need them all. Your doctor has to fill it out and sign it, its a good idea to read everything, know the form from start to finish and make sure your doctor makes no mistakes. If he does just use a whole new form, tell him to use no initials, print everything so that its easy to read. Everything gets denied the first time. But after three years they will give you a total discharge of your student loans, that is if you are not able to work otherwise you get tho pay them back.

Thank you all for your tips and listening. Hopefully one day soon it will get easier for us all

I've thought about the 23andme. I don't think my insurance would be okay with it, but I really don't have any other answers either. And maybe your right about the spike, because I have been able to have a couple drink when there were no problems. I'm almost afraid to try it again, LOL

Mercery, sorry about the typo's. It is terrible not having the answers. Not knowing why. We lose so much as it is. I'm tired of not being able to have a life. I want a doctor to care enough to find the answers.

Obviously this isn't effecting all of us, I believe this is what happened to me last night. As well, it has happened in the past but never has bad has last night and it hasn't happened every single time that I have had a drink. My bp was 98/81 my pulse was 122 in my recliner. My face was red as fire and felt like it was actually burning. Abdominal cramps were extreme. And this genetic thing must effect acetylcholine. Here's something from one of the site I read about. (Alcohol flush )is a condition in which an individual's face or body experiences flushes or blotches as a result of an accumulation of acetaldehyde, a metabolic byproduct of the catabolic metabolism of alcohol. As well, mass cell may play a part in all of this.

I studied this info on many different web sites, but the simplest to understand was found at the mayo clinics health site, under alcohol intolerance. It's possible that some of us may have a genetic trait causing alcohol intolerance, which could mean that our body doesn't have the proper enzymes to metabolize the toxins in alcohol. So my flushing,stuffy nose,low bp, nausea may have nothing to do with my pots. Oh and just to add, I never get buzzed or feel drunk like everybody else. I literally, turn fifty shades of red. So now I wonder if other (bad) genes could be causing my pots as well. The down side is there would be no cure ever. I want to do genetic testing, I'm interested in knowing.

You know you have pots when your doctor gives you his own cell phone number to call or text when things are bad'.

AshleyPooh, Hi. I'm not overweight either, I rarely have fried food. I was even able to exercise at the time my first tests showed high cholesterol, as a matter of fact,it was the first tests that I ever had to be abnormal, and this was years ago.

I have a moderately high cholesterol. Its not bad enough for meds, but the crazy thing is that it has not changed(at all) in years. I think it is effected by pots. I am waiting for test results which were done recently. I'm curious to find out if its still 212.

Amy, Hi. It is wonderful to hear such great news. I wish you continued success with the new meds. I hope those standing minutes continue to increase.

I was diagnosed by Dr Reiders in Lady Lake fl. He is a cardiologist. He knows a little about pots and was talking about doing a study just before I moved to Panama City Beach FL. I now drive to Pensacola FLto see Dr Randy Thompson, he has pots himself and is great. It is worth the ride for me. I drive right at three hours with having to stop for a bathroom often.

I'm being tested for mcad this week. I have flushing mainly on my chest and face. And have other symptoms too. But the one I'm unsure able is the dark spots on my arms legs and back. I don't know if it is liver spots or mcad. Do you guys have them and can you feel them when you touch them? As well did any of you have biopsies?

I understand, I get angry sometimes when my family goes to the beach or the springs and I know there is no way I can be there with them....its hard being unable to physically do the things you have enjoyed in the past. I know I was once able to be right in the middle of it all and I MAKE myself know that one day things will change and remission will come once again. My pots will not go away, but will be tolerable, at least enough so that I can enjoy my life again. Hang in there.....

Hi everyone, I have days where I struggle with light and sounds. Some times in stores, even at home. I even need the TV or music on where I can't hear my own self EAT. It is terrible at times.

My test was normal too,but I have hyper symptoms. I don't understand it either.