justme

My wife is also on the high side for calcium, which was amazing because she stays away from milk and a number of other high calcium foods.

We had heard Dr. Low's name mentioned alot when we were at Mayo. I wish my wife would have got him. I believe her neurologist was Dr. Feeley. He did a good job, but sounds like Dr. Low is the expert on POTS.

My wife takes the One-A-Day Weight Smart as well. She can notice the difference when she is off of it as well.

I'm sure you'll get better info than I'll provide. In all the research I have done, it appears that it is possible to actually get better once diagnosed with POTS. Everything I have read indicates that the best chance is if it was caused by a viral infection of some sort. My wife has had symptoms for going on 15 years now and there are many out here who have had them even longer. I don't see too many actual documented cases where this has happened though. It would be great if that was the case for even one person afflicted by this horrible syndrome. I have also read where it is possible for the body to recover and get past NCS. I had not seen any documented cases where somebody actually achieved that freedom though.

That no health insurance stuff is horrible. I never had a complete understanding of how bad it can be for people. I was always under the impression that you could get insurance. That was until I met my wife. Once she had her pacemaker put in and then had to quit her job, BAM, no insurance. And here's a big kicker. There are laws in place (at least in some states) that state that insurance companies need to provide insurance if you were insured at the time you were diagnosed with your now "pre-existing" condition, but there aren't any laws stating that their offering needs to be affordable. Just my two cents, but my wife's health problems have opened my eyes to alot of things.

That is one of the problems with the treatment for POTS patients and high heart rates. The medications (beta blockers) used to lower the heart rate will also lower the blood pressure. Many POTS patients have low blood pressure as well. Sometimes they will prescribe another drug to raise your blood pressure to counter-act the side effects of the beta blocker. It is not a fun battle.

That is awesome that you got on Social Security Disability. We have yet to start the process, but my wife also has NCS as well. I believe it is very important to have an understanding significant other as this can be the source of a great deal of stress on a relationship.

My wife also noticed her symptoms during one of her pregnancies. Even though she has been diagnosed, no cause was ever given. I would be interested to know if others have actually been given a cause.

The active drug in Tylenol is Acetaminophen. My wife refuses to take any pain reliever as they all seem to give her very painful headaches. This includes Acetaminophen and Ibuprofin. I have never had her try Aleve. She is really against using any type of drug in the first place though. Her doctor told her to start taking a baby aspirin every day and we think that the little 81mg tablet is actually making her very sick at night as well.

Maybe we will give the peppermint oil a try. My wife is very sensitive to scents and perfumes, so we have to be very careful. She can't wear makeup either. I also have to be careful with what I use. We are going on a long car trip (14 hours)tomorrow, but not sure I will have time to get the oil before then. I will bounce it off her and see what she thinks. I will also bring up the lavendar oil. She really doesn't like drawing attention to the fact that she is ill, but maybe she will be open to trying some of this.

This is great info. How do you use the peppermint oil? My wife needs to wear sunglasses in the car as well. I never even thought about road noise. We are still a bit perplexed as to what causes her car ride issues. It doesn't happen all the time, but when it does she gets very ill. I will let her know that you experience neck pain as well. She runs into this quite a bit. She gets alot of comfort knowing that she is not alone.

We purchased a home monitor. It works well, but obviously isn't as accurate as having a nurse take it. My wife refuses to wear the stuff necessary for a portable monitor. Taking a collapseable stool with you to sit on is an excellent idea. It is amazing how few benches and such are available in retail stores/malls these days. Used to be easy to find them, now it is actually kind of rare and when you do they are normally occupied.

My wife has had a lot of issues with her legs. This seems to have been better in recent months. She was diagnosed with Restless Leg Syndrome and then told No, you don't have that. That goes along with Parkinson's, M.S., and the list goes on. Neurology isn't an exact science from what I have seen and if I could pick one area of specialty that is the most aggravating it would be neurology. There are some good ones out there, but my experience (and my wife's) has been that this is very rare. Good Luck!!!!

I agree with your comment on the beta blocker. They help, but it is not a cure. My wife's heart rate has dropped significantly, but it is not consistent by any means. Another problem with the beta blockers is that they are good at lowering your heart rate, but they are also very effective at lowering your blood pressure as well. Unfortunately, many POTS patients already have low blood pressure. My wife used to be on a "cocktail" of drugs. Proamatine (sp) and LoPressor were the two main ones. The LoPressor was supposed to counter-act the side effects of the Proamatine (or the other way around, I don't remember). Eventually, they became ineffective (actually, fairly quickly). She is now on Nadalol (I think that is right) and it has done wonders for her heart rate. The side effects of these drugs can be almost as bad as the symptoms. My wife called Mayo when she had some problems after they put her on this "new" treatment. Their response was "You should just be getting better now". And again, this is from a team of supposed experts. Hang in there. I know my wife goes through very bad days. She mainly struggles with issues with her self worth. That is also the hardest one to help her with. I agree that prayer is very good. It is an uphill battle, but all I can say is keep coming out here. I know for me and my wife, it is a huge relief to see others experiencing the same things she is. Not because we like to see others suffering, but rather the fact that she knows that this stuff is more typical than the doctors say or even understand.

I have been visiting this site ever since we saw my wife's medical records before going to Mayo back in October and saw the term POTS in her records as being a possibility. It was the first we had ever heard of POTS or that they even thought she might have it. I have only recently started posting. There are a few things that I would like to ask about and get opinion, but I thought I'd start with this one as I believe it is the most important. Is there any way to encourage doctor participation on this forum or even get doctors who are familar with POTS to at least read the posts? I am still amazed at the fact that we went to Mayo and they are familiar with POTS (actually they have a number of research studies going on right now), but yet these same doctors are under the impression that somebody with POTS can hold a job. I understand that not everybody's symptoms are always as severe as my wife's and many who post out here, but the perception that somebody with moderate to severe POTS could ever hold a job is insane to me. There is no employer in the world that would be accepting of the absenteeism (sp) that is associated with this. There are days where people with POTS are flat out too sick to work, can't concentrate, have blood pressure too low or heart rates too high to do anything. Granted, there are days when people with POTS can function normally and I think this is where the confusion comes in. If you look at a POTS patient on a good day, you would never know there is anything wrong. Also, I think most POTS patients get good at dealing with their symptoms, because they have to just to survive day to day. It is even a challenge for many POTS patients to maintain a sense of self worth. She has had this for 15 years and is in her early 30s. It crushes her that she has days when she can barely get out of bed (if she can even do that). It's not that they don't want to work, it's that they CAN'T work. Sorry for the lengthy post, but both me and my wife find this very aggravating. It is almost inconceiveable that folks who have any type of understanding of POTS can say those who have it can work. Any ideas?

Locals shouldn't be as bad as actually being put under. I know you have to be really careful if you have to go in for any type of surgery where you need to be put under. After my wife had her heart surgery and her lungs collapsed they put her under for the chest tube. It almost killed her. She seems to go every other time and having good or bad experiences. You have to make sure you let your anesthesiologist know that you may be sensitive to the drugs.

My wife can't handle elevators at all. She does better if she can kind of sit close to the floor. Even at Mayo, we walked the stairs to most appointments and on her bad days if she needed to ride the elevator it was always with a wheelchair. It takes her a bit to "recover" from the ride. She also has a very hard time riding in a car. I think it is hard for us (myself) who don't have these feelings to completely understand what a POTS patient goes through. I had an appreciation for how sick (very, very sick) my wife got prior to going to Mayo, but watching her that week and watching the "live" test results, I gained a whole new understanding and appreciation. Elevators are particularly bad for my wife and we go out of our way to avoid them. Unfortunately, access to stairs on the first couple of floors at Mayo leaves a little to be desired.

My wife recently went through this test at Mayo as well. She also did not have the disposable swim suit. Other than taking a bit to get some of the purple off, she said it wasn't too bad. It took her longer to sweat than alot of folks, but she did sweat. Not sure what food test you are talking about, but if it is the one to measure emptying be ready for a full day pretty much shot. They give you a radioactive breakfast and then you go back about every hour and they take x-rays. They monitor how long it takes for the food to pass through your body. My wife's test was only a day but the instructions showed that they can go as long as 72 hours. She was getting really ill every time she ate, but has since found by altering her diet she can control this most of the time. Thanks to the advice out here about staying away from high Carb meals, she has seen some relief. She will still go with the high carb stuff when she breaks down and really wants it. Sometimes she will get sick and sometimes not.

My wife has the same thing. Ice cold feet and hands (but not all the time). She has a really hard time with regulating her body temp. Sometimes she is hot and sometimes cold. As mentioned, this is a common symptom of POTS.

When my wife was at Mayo, they actually had her do the breaths to aggravate the condition as part of the diagnosis. If a doctor is familiar with POTS, they can use this to promote a response. I wouldn't do it if it was a normal doctor doing a normal exam. My wife gets in bad shape when doing that. Her neurologist mentioned that it is not uncommon for POTS patients to actually inadvertently hyperventilate themselves because of the way they breath due to the condition and the symptoms. Don't know if that helps at all, but is not an uncommon thing. My wife has all kinds of breathing/lung type issues. She has had collapsed lungs in the past as well, which doesn't help and the cold weather here is really trying for her at times. We may be moving to a warmer climate if this continues.

My wife is unable to work. She tried really hard. She worked at a horse stable for a while. That was way too hard on her. She then shifted to a work at home thing, but still had a commitment to pick up stuff every day and get a certain amount of work done. Between being sick on many days and having total loss of concentration on others, she couldn't continue doing that either, so she quit. She has resigned herself to the fact that she will probably never be able to hold a regular job as there are days when she can't function (either physically or mentally). It is hard for her. Her doctors at Mayo, although familiar with POTS, don't seem to understand the severity of these symptoms. I can go into more detail, but I don't see how anybody with a moderate to bad case of POTS could possibly hold a job.

My wife uses Maxalt and it seems to work (when it's actually a migraine) most of the time.

Are migraines part of POTS? My wife gets them and can get so extreme that they require hospitilization, sometimes for a few days.

You don't know how happy this posting has made my wife. She has extreme hardships before, during and just after her cycle. She mentioned this to her doctors at Mayo and had been mentioning it to her electrophysiologist for quite some time. Mayo had indicated that problems with her cycle were unrelated to her other conditions (but not sure if he meant just cardio or was referring to the POTS as well). She was very happy to hear she is not alone in this area.

My wife has been diagnosed with POTS. She has actually been dealing with the symptoms for close to 15 years now, but only recently received this diagnosis. My wife also went through an autonomic nervous system test, but was slightly different. She went to Mayo for her testing/diagnosis. They have a team situation there where they have the cardiologists, neurologists, etc all work together. It was nice to go into an "understanding" environment instead of the normal responses that there isn't anything wrong. She has a pacemaker that was implanted in Sept 2001 to keep her heart from stopping (separate issue). If your doctor is pushing sodium and liquids, you may want to look at pedialyte (the generic versions work as well). Her heart rates range from 50 (can't go any lower because of pacemaker) to 250bpm at any given point in time. She was on a treatment plan with lopressor and proamitine (sp), but that became ineffective within a short amount of time. It is a very rough disease and is an emotional roller coaster for the entire family. My wife is only 32 and has a hard time with the fact that she can't hold a job and has a hard time doing simple tasks on many days.