justme

My wife is on Naolol as well. It has kept her extremely high heart rate under control, but it is a balancing act because it also can lower your blood pressure, so she is on florinef to bring the pressure back up. She has been on it for quite a while and it works for her when alot of other things wouldn't. It's only function for her is to keep the heart rates under control. She has a pacemaker to deal with the low rates.

My wife is exactly the same way. It is worse when she stands up, etc, but it doesn't matter what she is doing and she can have problems.

Not your fault Earthmother. It had been a bit before I had been out here, so I was responding to some of the strings that I thought I could contribute to.

I found out about the actual subscription type Medic Alert braclets out here. I signed my wife up right away. I bought her one of the fancier bracelets (let her pick it out), so she would be more apt to wear it. You also get a free one. She wears the necklace type one quite a bit. She tries to pick the one that will be most visible depending on what she is doing.

My wife suffers from severe migraines. She takes Maxalt and if that doesn't work, she has to be admitted for about 3 days.

Unfortunately, this is a way of life for alot of POTS patients. My wife and I are talking about moving into a single level rambler because of these issues. We bought an older farm house (one of her dreams), but the stairs and everything are killers for her. She had a really bad year last year and we are starting to make some life adjustments admitting that we aren't going to be able to fulfill some of her dreams. Her doctors have pretty much given up on the situation (they hung in there for a long time). My wife's cardiologist actually had her start exercises where she is supposed to stand in one spot for one minute. She was pushing herself too hard with that. Her physical therapist told her to try to start with 45 seconds. He is a cardiology PT as well. I don't think people realize how devastating dysautonomia can be.

On my old self cleaning oven, that was all you needed. I think all it basically did was heat to a super high temp and cook out all the stuff turning it to an ash like substance you could just wipe out. I applaud all of you who would even attempt to clean an oven. I would be very upset with my wife if she even tried it. I screwed up yesterday and used a mildew cleaner in the bathroom. I don't think it caused her latest migraine, but it sure didn't help it. Even with how careful I am, I still "forget" from time to time.

My insurance covered the monitor for my wife (or at least 90% of it). It really depends on your coverage. If they cover medical devices, chances are they will cover a BP monitor if you have these conditions. I just had my wife's doctor write a "prescription" for a blood pressure monitor.

Don't rule out fibromyalgia. That can cause severe back pain along with other muscular and joint pain. My wife has it really bad. She has been going to physical therapy for about 6 months with limited success. She has to stop now because the insurance will no longer pay for it.

Mayo actually stated that Propel is one of the better "enhanced" waters as it isn't loaded with as much sugar as some of the other ones. My wife's doctor actually did research on it after we asked. The big suggestion was Pedialyte though. Pedialyte is very expensive though. My wife had been using some of the "knock offs" which have the same list of nutrients as Pedialyte.

I'm not trying to discourage you in any way. Your situation sounds very similary to my wife's. She was on several different medications after she got her pacemaker. She also has NCS and her heart was also stopping for extended periods of time (reason for the pacemaker). They put her on a "cocktail" of drugs. I believe Toprol was one of them to start with. She was off work for a year after she had her pacemaker. She attempted to go back to work (she wanted to and her doctors released her). She worked in a factory and they told her the equip was safe. Well, they eventually found out none of the equipment was safe. She got switched to a lower paying job and she ended up leaving. She tried a couple of jobs after that. They both put her in the ER and she was working part time. One of them was even a work at home thing. Back to your medications question. In the years that we have been working through this and with many many doctors the main conclusion is different meds work differently on different people and there is a lot of guesswork and experimentation that goes into it. My wife was having problems where a med would work for a couple of months and then stop. Right now, I think we are sitting as good as we have been in a while. Basically at the point that the side effects of the drugs aren't so severe she can't function and the meds she is on seem to work at least partially. I'm really sorry to hear you have this horrible illness. I hope you have friends and family supporting you. I also hope that this is the end of your journey and will recover rather than it being the beginning.

Happy New Year Stacey!!!

You need to do whatever you are comfortable with. Personally, my wife will avoid a wheelchair at almost all costs, although she has used one when her family was in town and she didn't want to ruin their day. She tries to get out as much as she can (as in outdoors) as it makes her feel alot better. With the colder weather, she is not as apt to want to go outdoors, but makes an effort in any case. If you are comfortable in a wheelchair, then go for it. You need to enjoy everything about life that you can. It's way too short.

My wife was mis-diagnosed and put on Prozac a very long time ago (before I knew her). The doctors told her that this may have actually worsened her NCS condition. I don't know the underlying medical reasons, but you should work very closely with your doctor on these things, especially your cardiologist if you have one.

I just found time to start going through some of the many posts out here again. This is a very good post with alot of good information. My wife has had tremors in the past. They really had the doctors concerned the last time she was in the hospital. Sometimes it is her body reacting to pain before she can actually feel it (just trust me on this one). The last time around didn't seem to be for this reason though. She does not have PD.