justme

Get this. My wife was involved in a custody battle - very long story. I was appalled by what the judge did. My wife adjusted her posture in the court room like she has been taught to by her physical therapist when she is experiencing pain. The judge told our attorney (names are being left out for legal reasons) after she made this adjustment: "By your client's demeaner, I can tell she is not listening to me". At the end, for other reasons my wife's disability was brought up and the judge said "If you are disabled, why did you file for custody?" We are already raising a 16 year old son who is well adjusted and on the honor roll. I was appalled, but you can't say anything. I was going to get the transcripts and pursue this, but when I started to do research I found this is a very common problem in the court system.

Our experience with Mayo was that they seem really good with the diagnosis phase of everything and explaining what is happening, but didn't seem to be too interested in on-going care. It was like they solved the riddle and it was time to move on. I'm sure that's not indicative of their entire care system, but that was my experience. Mayo overall is great. They saved my life and my father's (cancer) and have very good doctors. Sometimes bedside manner can be lacking, especially in the neurology dept.

My wife's cardiologist at Mayo said that the beating irregularities you have described are very common in certain patients. He actually knew all the names for them. That was over a year ago, so I don't remember the specifics. He basically said there is nothing you can do about them and that some people are more sensitive to them than others. I actually think he made the comment that healthy people can also experience it, but may not be as sensitive.

I didn't read through all the posts, but wanted to let you know that my wife's heart used to stop beating all of the time. That is why they had a pacemaker implanted. Her TTT caused her heart to actually stop each time and it was for an extended period of time. The pacemaker now prevents that from happening. This was attributed to NCS (she wasn't diagnosed with POTS at the time).

My wife has been prescribed P.T., but right now it doesn't seem to be doing much good. Her therapist isn't sure if it will help. They are going to try it for another month. Her Fibromylagia may be too severe to respond. I think it is a good idea to at least give it a try if your doctor thinks it may help.

My wife was consistently running pulse rates in the 190-220 range. During her last pacemaker clinic her highs were in the 120s, which was great news. You should have seen the look on the nurses face when she said they are still high and we asked how high? She said 120s and we said "that's great". My wife has the problem where her heart would actually stop too. She ranges down to 50bpm consistently. She can't go lower than that because that is when her pacemaker kicks in. They don't mind her heart going low cuz they know the pacemaker will correct it. She is on Nadolol for the high heart beats. It seems to be working (at least somewhat). We have heard any where from beats over 120, 140 and 160 being dangerous to the statement that if you can't feel the effects, it is nothing to worry about. I don't agree with the latter statement though. Colds and any type of illness hit my wife like a ton of bricks.

My wife is now on her third appeal. She sees 2-3 doctors several times a week. It is ridiculous. Between her normal medical appointments she could not hold a job none-the-less the non-scheduled ones.

One word - Maxalt (10mg). My wife gets migraines so severe they require hospitalization. This is the ONLY thing that works for her.

I'm not saying this could be the problem you are experiencing, but my wife was just diagnosed with Interstitial Cystitis and it is associated with many of the same syndromes POTS patients have. This explained alot of her problems. Unfortuneately, like with most things concerning this disease, there is not much if anything they can do for it. Some of the sites actually point to things like fibromagalia, CFS, etc. as being related. http://www.mayoclinic.com/invoke.cfm?id=DS00497

Good luck. My wife started on Florinef about a month or so ago. Her cardiologist has steadily increased her doseage. It made me nervous reading all the bad things out here. She started with .1mg then went to .2 and now he increased it to .4mg per day. She gets sick every time it is increased, but it seems to help her recover faster from crashes.

That's awesome. I have been cancer free for 25 years now. Always nice to hear of another survivor. My father has been cancer free for 6 years. As far as gifts go, love is the best gift of all.

It's probably not your ears. My wife went through the same testing recently to eliminate that as a cause. She came up with a severe ear infection following the testing. The tests that they could do came back normal. I'm guessing it is the POTS. My wife is also at .2 florinef and it seems to help.

My wife is hit and miss with anesthesia. There was one time (when we were just friends) that I made it clear to the hospital staff that she was sensitive to anesthesia. The proceeded without precaution and it almost killed her. She has had surgery since and we have notified the doctors about her conditions and sensitivity. They took some extra precautions and monitored everything a bit more closely. She didn't have any issues. Of course, we are married now, so they may have been more apt to listen, but I think the hospital staff was much better this time around. I'd say that it shouldn't be a problem and you should not avoid necessary surgery. Just make sure your doctor, surgeon and anesthesiologist are well aware of your conditions.

First off, they are YOUR records, not the doctor's records. And, yes, you can file a complaint with the licensing board. They may or may not do anything though. Your only choice may be to obtain a lawyer, but that is a horrible choice because you end up spending alot of money because one person is being a moron. You can actually report everybody you talked to (the hang-ups, etc.). The nurses all answer to the board as well. They are required to maintain good records and provide them upon request. This has lawsuit written all over it. Makes me wonder if they even have the records. Good Luck. I have never ran into this with any medical office where my wife's condition is concerned. I have ran into it in an unrelated situation and even with a court order, the doctor would still not release the records. We would have had to go to court and were warned that if she produced the records at that time nothing would probably happen to her. Nice system.

I just signed my wife up for Medic Alert. I had her pick out one of the nice bracelets since she will be wearing it all the time (also increases the chance that she will actually wear it). Because of all of her conditions, I had to call Medic Alert. They were very nice and understanding. They even called me back to tell me they could squeez the neurocardiogenic syncope on the bracelet. That is along with pacemaker, no mri, allergic to morphine, and Call Medic Alert. She got the small emblem. The piece of mind that I have now is unbelieveable. I just hope the medics will actually make the call.

They actually prescribed Zoloft to my wife for her heart, not depression. I can't remember the exact reasoning behind it now. At the time we didn't know why, but either Dr. Feely or Dr. Wood explained (both Mayo) explained it. Didn't retain the info because she isn't on it any more.

I wouldn't think a dianosis of NCS should cost you your license. If you have lost consciousness, that is different though. Considering that you are stating that you haven't found meds that work, that may be the case. Have they considered a pacemaker? I know that is horrible news, but it could keep you from passing out and would allow you to continue driving.

My wife was on Zoloft for quite a while too. She never noticed any problems either. She took herself off of it because she didn't notice any benefit either though.

My wife's temp is always below "normal" too. We just know she has a different normal. Not that anything is normal with this condition.

My wife's neurophysiologist suspected POTS. He never said anything to us though. We found out when we read the records prior to going to Mayo. Mayo diagnosed my wife with POTS.

This is awesome. I never knew this service existed. I knew about the bracelets and necklaces as we have several, but they are all generic. We were always going to buy one with all the info on it, but my wife's info is constantly changing. With this service, I can keep it updated. I can also have my name as a primary contact. It will give me some comfort knowing that somebody has the means to get all this info. I thought medical personnel were required to call in a medical alert if the patient was wearing one and was unresponsive to the medics. I am going to sit down with my wife tonight and get her signed up for this service. THANKS!!!

My wife gets this as well. She had a situation this last weekend where her whole left side went numb.

I talked to several lawyers that wouldn't even take my wife's case because she is 32, but then I found a group of three people who started their own "company" to help people with the claims process. They used to work for the Soc Sec Admin and know the in's and out's. The best part is that they are very understanding of my wife's conditions. If I could have reached through the phone and choked the first lawyer I talked to, I think I would have. And, I'm not that type of person. He said he wouldn't take a case like that unless the person was at least 45. So, what are the others supposed to do? You can't wait or you lose the chance of getting it. It is a very uphill battle. My wife was denied on her initial attempt (we tried to do it without a lawyer or advocate). They stated that because she could stand and use her arms, she would work. For one, she can't stand very long and if she did anything with her arms (especially reaching above her head), she would pass out. I think it is fairly normal to get continually rejected. I will keep the forum posted as we move long. It is a very discouraging process, which I think is very, very wrong as most POTS/NCS patients have a hard time coming to the conclusion that they can't work and have already dealt with years of "it's in your head" and the long list of doctors who won't listen.

My wife prefers to fly. She has a really hard time with car rides. She seems to do fairly well on planes. There are some issues, but nothing major. Beats watching her "crash" as I'm driving and there isn't a thing I can do about it.

My wife has horrible symptoms before, during and after her menstrual cycle. Her current cardiologist is the first one who didn't dismiss this as being unrelated. He stated that his nurse told him that it appeared to be a common complaint among people with her conditions. Unfortunately, my wife can't take bc pills due to other health issues. If we find out anything more on this, I will definitely post it. Even Mayo dismissed this. I have always been amazed at how quickly the doctors say, "Well, there is no way that can be related". It's amazing there are ever any medical break throughs with that type of thinking.