justme

My wife has a Medtronics of some kind. I would have to get the book to get the exact model. Hers is set for 50bpm. Her top chamber requires a 6V shock though to get it going again and that ***** alot of battery power. She was in a bad situation. The surgeon who implanted it wasn't the one who was supposed to do it. She was in the prep room most of the day as the surgeon who was supposed to do it had an emergency. I think he rushed on the placement of the lead rather than finding the best spot. They have talked about opening her up again, but she had severe complications from the insertion, they hesitate now. She ended up with collapsed lungs and fluid around the heart as well as being hospitalized for migraines. We figured out she is allergic to morphine and that is what was causing alot of the migraines (she gets them otherwise too). She asked about the site and they bascially told her it would take 2 years to heal.

I agree with calypso on that point. I was raised Catholic and if you have to sit, I say sit. I now attend a non-denominational church and they actually let everybody know that if you want to sit or need to sit you are welcome to do so. The folks normally stand during the singing portion of the service.

My wife failed a TTT twice and both times her heart stopped. After the second time, they immediately admitted her and implanted a pacemaker the following day. There is actually information on NCS on this site. It is Neurocardiogenic syncope. A short description is: Neurocardiogenic syncope is a temporary loss of consciousness associated with a drop in arterial blood pressure, quickly followed by a slowed heart rate.

Could be cardiac, POTS or something else or a combo. You need to talk to your doctor. Typically, a drops in blood pressure and heart rates can cause blackout situations. What was the reason for you failing your tilt table? Do you have NCS? If so, that can cause you to pass out as well.

This is interesting. My wife has the situation where her heart feels like it is going to beat out of her chest. We just went in for her pacemaker clinic yesterday. She now had 174 incidents of a heart rate above 180. She had one 15 minute interval where it averaged 220bpm. She also had a run of about 10 minutes at about 195 another day. This is after going to Mayo and starting a new treatment plan. They told my wife that her pacemaker site would take 2 years to heal and they were about on target. After her surgery, if you tried to get withing 2 feet of her you were looking to get killed. The site was extremely painful. It is not so bad now, but you still can't touch it directly. Does anybody actually get swelling over their pacemaker site? My wife runs into this when she isn't feeling well sometimes. There is no rhyme or reason to her heart rate jumping into the 200s. It is not exercise or stress induced. We also got the wonderful (sarcasm) news that her battery is looking like it has 36 months left. 4 months ago it was 60 months. At this rate, she has about a year. POTS can't be stopped by a pacemaker. A defib pacemaker could potentially be used to correct rythm problems, but even Mayo strives to not introduce pacing as a solution.

Sounds like NCS. My wife had a pacemaker implanted as well. Her heart would actually stop for extended amounts of time on the TTT. At the time, she didn't know about POTS. They knew there was something really wrong with her nervous system, but didn't know what. It is rough to have a pacemaker. Once there, there is the need to replace batteries, change leads, etc. My wife has a petite frame so you can actually see where the pacemaker is and the site is very sore to the touch for her. Mayo Clinic tries to avoid pacing if they can, but there are situations where it can't be avoided. My wife's pacemaker was also implanted in Michigan. Her's kicks in when her pulse drops below 50. It seems almost ironic that her pulse can drop into the 40s or even stop, but at the same time can also go above 230 too.

My wife gets horrible nose bleeds and her nose is very sensitive to even the slightest pressure. She also seems to have continuous sinus problems. I hope you get better though. Sounds like you had a very bad injury.

My wife has NCS as well and gets severe migraines (almost always require hospitalization). The paperwork is unreal. We are prepared for a long haul.

My wife and I just started the SSDI process after a lot of soul searching. I hope that we have better luck. There are several people out here who have been approved. Many of them had to go through more than one appeal though as well.

I agree. You need to get to a cardiologist very soon. Have you ever been diagnosed with NCS? My wife has NCS and it actually causes her heart to stop beating. Almost lost her a couple of times. She now has a pacemaker and her heart rate can't fall below 50 without it kicking in. This still doesn't stop heart attacks either though. I'm not sure how your first EKG came back negative, but definitely get in to see a cardiologist. And hang in there!!!!

Good points briarrose. It is really hard going into an emergency room with pain. Sometimes they don't want to immediately treat the pain until they try to figure out what the problem is. Sometimes there is a "new" problem, but most of the time they aren't able to find a cause. We finally found a hospital ER that actually listens. That was after several almost horrific visits to a different hospital where the doctors were good but the nurses were horrible. We kept going there cuz we thought we had to with our insurance. It is hard to walk into some place and just say I know I can't be fixed just stop the pain.

I will talk with my wife and see what she says.

This is a really sore subject for me. The insensitivity of a solid majority of nurses is just unbelieveable to me. I try to justify it as them being over-worked and under staffed, but it is still hard. There are some very wonderful nurses out there, but my experience is that even they have a hard time because of not having the time to spend with their patients that they should have. My wife has been in the hospital more times than I can count. Improper nursing care (along with some doctors) almost cost her her life on a few occasions. I feel bad for those who don't have family members there to watch over them when in the hospital because that is almost what is needed to ensure proper care. OK, I'll step off my soap box now.

Should ask them if they know what the "T" stand for in POTS. I know this stuff all too well. This actually sped up my marriage to my wife as insurance was becoming an issue all too quickly. Fortunately, we were able to COBRA her's until we got her on mine. The one thing that alot of folks don't realize about this insurance thing is that just because they are required to provide it, doesn't mean they have to provide it at a reasonable cost. And to boot, if you have a condition that is that bad, you probably can't work to try to get insurance. It is a horrible, horrible Catch-22 situation.

I'll respond for my wife. 1. She does have periods of deep sleep, but many times she can't sleep at all. 2. She rarely feels "well rested" even on nights when she slept soundly. 3. She has some numbness, but she doesn't complain about this much. 4. A ton of bricks would be an under statement. 5. BINGO. She has concentration issues all the time. On days when she has what has been termed "brain fog" out here. She can't do anything including watch TV, read, etc as her brain can't seem to sort through all the input. 6. Wow, she actually called the doctors on this a couple months back. She couldn't handle the white from the snow outside. I caused severe problems basically triggering her POTS with pressure and heart beat issues as well as confusion, etc. 7. I think it is the illness. I also think some meds cause different side effects and other issues that may not even be documented as a side effect though as well. This is just my personal opinion. 8. Yes 9. Exactly the way my wife feels. She even used some of the same analogies. One that she had that hit home for me was she asked me about the feeling you have when an elevator comes to a stop sometimes with your stomach. She told me she has that feeling all the time. That one hit home for me. And then if she actually rides an elevator.... 10. Yes, this is related to the condition.

Really sad part is that this isn't all that uncommon. My wife went through a lot of similar things. "It's all in your head". One put her on anti depressants even though she wasn't depressed. It caused her to lose more weight (which she couldn't afford to lose) and basically made her hyper active. It also turned out that when she got to the point of having a pacemaker implanted her doctor told her that certain anti depressant meds make NCS worse and that she could have probably avoided a pacemaker had this been diagnosed when it should have been.

My wife is really bad in this area. Can't watch movies or anything that have any type of blood. She will actually pass out. We were told that this actually is a part of POTS, but it doesn't look like everybody has it.

There are two kinds of sweat tests. My wife has went thru the one Denabob describes and the one that Louby is going to have. It is not a big deal. Hardest part for my wife was not being able to get up and move for that period of time. They basically cover you in the powder, put you under heat lamps and wait for you to sweat while they monitor your body temperature. It is a test of the autonomic nervous system's response to controlling body temperature. The purple takes a bit to get off, but it isn't horrible.

You can try for a second opinion, but chances are that you will get the same response. They are very "normal" for POTS patients and there is little to nothing that can be done about them. Actually, my wife's Mayo doctors stated that alot of the stuff she experiencing with her heart occurs in "normal" people as well, but she could notice it more because of her condition and her smaller frame. There were about 3 or 4 types feelings my wife described and the Mayo cardiologist knew exactly what each of them were. Some medications can help to ease a few of these symptoms, but they can't be eliminated (at least in my wife's case).

My wife is talking about going to a chiropractor as she is having neck pain once again. We are planning on talking to our family doctor to get a reference to somebody he knows and trusts.

My wife's doctor said there is nothing they can do about the palps at all. The beta blockers are supposed to help at night, but will never eliminate them. She has also had to reduce her doseage significantly because of other side effects. The response she got was basically, "There is nothing we can do for that".

I saw this article too and thought it was very interesting.

My wife has had a few TTTs. She used to fail them, but after the last failure they admitted her and implanted a pacemaker. Her heart would actually stop for a significant period and they would have to bring her back. She has had two TTTs since the pacemaker and "passed" both where her heart was concerned, but watching her vitals on the one they did at Mayo to diagnose POTS made me really understand what happens to her body when she goes through those incidents.

Good luck!!! I hope they are able to find something and can provide you with some type of relief. Luckily my wife doesn't run into this and I'm glad. It would scare the life out of me and crush me. My prayers are with you.

My wife's doctors recommended Pedialyte. We use the generic brands as they have the same ingredients and are cheaper. She also says they taste better. I can't stand the stuff, but she is a trooper. Salt intake is very important. Her doctors also push water though. Water and salt.