justme

No, haven't heard of them. My wife has not been treated at UofM or Fairview yet though. Strictly Park Nicollet and Mayo.

Dr. Feeley at Mayo Clinic highly recommended Pedialyte instead of sports drinks. Some are better than others for POTS folks. Make sure you read the labels carefully as some provide little value. There are Pedialyte "look alike" products that sell for less money but have the same ingredients. The Pedialyte option is very expensive however.

I think you'll find alot of folks out here who have that symptom. This happens to my wife all the time (as in several times a day). It has recently got worse and they are trying to figure out what's causing it (yeah, right).

Does your doctor have you on florinef? Sometimes that can help your body retain the fluids it needs.

Happens to my wife too.

My wife gets it all the time. There are some meds that you can get to help the feeling. She doesn't like watching movies much, so we don't run into that very often, but there have been a number of times where it has been an issue. She just went through a bunch of ENT tests that all came back negative.

My wife and I went to Mayo. I have held Mayo in very high regard as I credit them for saving my life and were involved in my father's treatment and currently treat my mother. I was impressed with her cardiologist. They ran a battery of tests and confirmed what was thought that she had POTS. However, they really didn't do much beyond that. They put her on Nadolol and when she called back to say she wasn't feeling any better and it didn't seem to be working, their response was "You shouldn't be doing anything but getting better". Well, as you can imagine this is the wrong thing to say to somebody who has already been through about 30-40 doctors, neurologists, specialists, etc. I was disappointed in Mayo for the first time ever in my life. They confirmed POTS and ruled out some other things, but did not offer any relief. We are also still fighting with the insurance company, although our's has only been for 7 months. Part of the problem is that the plug was pulled when they came up with a treatment plan. They then sent us back here to proceed with the treatment plan (that wasn't working). If you are already diagnosed by Dr. Grubb, I think the only thing that Mayo could do is rule out that there may be other things or possibly a more serious problem as many of these symptoms overlap, but from a treatment standpoint, I would say don't get your hopes up. My wife had Dr. Feeley. I wish she would have got Dr. Low. Can't roll back time though.

My wife also gets these daily, horrible headaches. I think it is something new. It is also something that she is having a hard time dealing with because there is no way to counter act it. Nothing seems to work.

My wife is on Nadlol now. She also isn't sure if it is doing much for her. She was told to play with the doses. If it is making you so tired, try taking the full dose at night to see if it still works and gives you relief from the rapid heartbeat. My wife tried this, but found that she was still having trouble in the morning/day, so she had to take some in the morning. She takes 10mg in the morning and 20 at night I think. Everybody is different. The one thing I have found with her is that the doctors are pretty open to the patient playing with their meds. Like my wife's current cardiologist (she has had many) said, it's like a recipe just that you really don't know the right ingredients or the right amount yet. It was nice to actually hear somebody that was willing to admit he doesn't have all the answers.

I know for sure you can have both NCS and POTS. My wife has been diagnosed with both and those dx were confirmed by Mayo. It does make for a very difficult ride on the health roller coaster though. My wife's heart rate can vary from 50bpm (can't go lower because of her pacemaker) up to 230bpm and can sustain for 20 minute intervals at 220bpm. This takes place for no apparent reason. They are not mutually exclusive.

Personally, I think it is a combination. I think it is somewhat rare. I also think that it is not properly diagnosed because most doctors aren't trained to be able to diagnose it. Heck, most doctors have never heard of it. My wife has POTS, NCS and suffers severe migraines that require hospitalization.

I would say that 60-80% is a very high number. My understanding is that if you have POTS due to a viral infection that your chances of recovering fully are much higher. By default, I think that would indicate that you can get better even if the cause wasn't viral. I have heard that people's symptoms can lessen as well. In my wife's experience, it has done nothing but got worse. She has good days and bad days. It also seems that medication that seems to work only works for a short amount of time and then something else needs to be tried. The other thing to be aware of is that several people have multiple dx. ALOT of times POTS is just adding to other conditions that exist. I admire the fact that you are fighting this and trying everything you can. But, there are alot of younger folks out here that have a hard time accepting their illness for some of the same reasons. My wife as of age 30 could no longer work, has limited capacity to even do simple household chores, can't walk for any extended amount of time, has difficulty riding in a car, etc. She struggles with this stuff every day of her life.

Thanks for all of the kind words. I don't think I do anything special though. As far as for the almost dying. The three incidents I am referring to happened after she got her pacemaker and complications during the weeks following the surgery. First off, if you are planning on having a pacemake implanted, don't let this scare you. This stuff only happens in a small fraction of the cases. My wife seems to hit that small fraction on alot of different things though. I don't remember the exact order that these happened. Following her surgery, she had a difficult time recovering. Her lungs collapsed and she also had a fluid build-up around her heart. When they put in the chest tube, the anesthesia almost killed her. She didn't come out of it. It took about 8 people to bring her back. We warned the nurse that she was sensitive to anesthesia because she had ran into problems in the past. The nurse told the doctor, but the doctor dismissed it. She needed to have anesthesia because she was very anxious about them shoving a tube through the side of her chest into her lungs (they normally don't put you under for this). In the process of recovering from the chest tube, she had what I would call a seizure. The nurses used the words "passed out". I think there are a lot of reasons for this, but it really doesn't matter. This again took a team of about 6 people to bring her back. It seemed like it took a lifetime, but they were able to do it. The third one was a repeat visit to the hospital emergency room. I don't recall how this visit initially started. She showed all the classic signs of a heart attack. I mean it was unreal. I have had some minor training because of some of the volunteer work I had done in the past. Their opinion was "She has a pacemaker, she can't have a heart attack". Well, that isn't exactly true. I don't think this was officially deemed a heart attack either. Her tests came back with abnormal results. This was a night they sent us home and I think even they were thinking she wasn't going to make it. She also had the fluid around the heart, which was life threatening at the time, but over time they were able to get it under control.

I forgot to add this... I knew that my wife's symptoms were bad and that she went through alot. She almost died on me a few time (prior to us being married). I have also taken her to the ER many, many times. I will say that sitting through the tests that Mayo did with her and seeing how sick she got that first week and hearing some of her explanations gave me an even better idea of the day to day things she goes through.

Your husband should be there if he can. I take an active role in my wife's treatments and attend all pacemaker and cardiologist appointments. I think it does help to have a second person reaffirming the symptoms. I also seem to be able to add things that she really doesn't notice or has gotten so good at dealing with them over the years that it is just a part of every day life (most things are this way now). Our family doctor actually recommended I go to her next appointment with her. We are starting to get a little push back because we don't seem to be making much progress and her symptoms continue to get worse. I agree that POTS is downplayed by doctors and many websites. Even Mayo seemed to downplay it....except for the people in charge of the research studies.

I'll put in some of my "opinions" to the questions I have experience with. 1. Yes, you can have surgery. BUT, make sure that you let your doctor(s) know about whatever you have been diagnosed with. My wife has done well with some surgery and horribly with others. She has had issues with some of the anethesia that was used on her. This is something not to take lightly. 2. Yes, this is safe. However, there are certain conditions that require you to take an antibiotic before having work done. My wife has a leaky heart valve that requires her to take Amoxocillin prior to any dental work. 3. Not sure on this one. From what I have heard this is very low. I hope that is right. I would guess that if you have a progressive deterioration that it could cause serious problems. Many people seem to have more serious problems in addition to the POTS. Some of the other things can be dangerous. 4. Not sure on that one, but interesting question. 5. My wife does not take these. I would recommend that you talk to your doctor about what you should or should not try. 6. You would need a defib type pacemaker. Yes, they can help, but many doctors try to stay away from pacing as a solution. My wife has one for her NCS that keeps her heart from dropping below 50bpm, but it does nothing to stop the high heart rates. You really need to work with a cardiologist/neurologist team to make the determination about what is POTS related and what is not. Even then, they may not agree. My wife's doctors flipped on alot of things. 7. Yes, it can. 8. No, those are not normal rates and are considered dangerous by most doctors. My wife is still struggling trying to get this under control. She runs into the 180-230 ranges for extended periods of time. My wife gets severe muscle pain and chest pain on a fairly consistent basis. I need to get back to work, so will add more later.

Unfortunately, this happens all the time. My wife is at the point that she doesn't even want to see doctors any more. She has been told this so many times. She was just treated by Mayo and when she called her cardiologist to tell him that she was having problems with the new treatment plan, his response was "you should be doing nothing but getting better." Another doctor told her that her 180-200bpm heart rates were nothing to be concerned about. This was an electrophysiologist. Mayo disagreed with that. Now we just went to see our family doctor and he has normally been very understanding with her. This time he basically made it sound like it might be the way she is presenting herself. I was stunned. She has seen dozens of doctors over the last 2 years. Now we have an appt to see the head of cardiology for one of the major hospital chains here in the Twin Cities. We understand that there may not be anything they can do, but then they need to tell us that. It seems that because they can't fix the problem they try to shift the blame back to the patient with the thought "If I can't fix it, it must just be in their head". It is just INSANE. And the best part is that you are paying thousands of dollars for this type of treatment. Sorry I'll step off my soap box now.

How is your blood pressure? Beta blockers can significantly reduce blood pressure causing the symptoms you are describing. My wife fights with what is better: a high heart rate OR dealing with the side effects of beta blockers. The doctors will definitely tell you that the side effects of beta blockers are minor compared to the effects of a heart racing at 220bpm, but they don't live with this stuff on a daily basis either.

That sounds very low. I think I would talk to another cardiologist. They have my wife's pacemaker set at 50bpm if that gives you an idea of what they consider getting too low. She also used to drop into the levels you stated, but that is why they put in the pacemaker. It can be a sign of NCS. Her heart actually stopped on a TTT the two times she failed it (prior to the pacemaker). 42bpm seems low, but when my wife was in for her last pacemaker clinic her pulse rate was at 57 for a bit and they didn't seem concerned. Then again, her electrophysiologist didn't seem concerned about her 180 rates either and Mayo was definitely concerned.

They normally say that you shouldn't notice any ill effects until it drops below 80 (top number I think). BUT, my wife notices ill effects when it starts dropping below 110 or so (depending on some other factors). Doctors would say that is low, but not too low. Maybe others have opinions on this too, but it seems like unless your pressure drops to extreme levels the doctors don't think it impacts you. They basically told me wife, there is no way that could be causing what you are feeling. I hate it when they try to tell you how you are supposed to feel.

Is Kaolectrolyte available at any typical store?

My wife "fired" one of her cardiologists for a similar reason when he was in the hospital once. They can adjust the rate when it kicks in, yes. But it is not a defib pacemaker. There is one setting. She doesn't have an option for it to kick in when her rate goes too high. The reason she has it is to keep her heart from stopping. I wish she would have had Dr. Low. She was treated by Dr. Feeley (or something like that). All I hear is how good Dr. Low is. Can't believe that they didn't send her to him.

Nobody has ever mentioned setting it to kick in at a higher pulse rate. I think she would literally kill me if I suggested it but I will. She has two leads. One is in her upper chamber and one is in the lower chamber. Her heart rate is all over the board and for no reason. She can be at 50 beats one minute and at 220 the next. We are at a loss of what to do next. Mayo told her she should be doing nothing but getting better, so she is slightly bitter about that. She has been living with the "it's all in your head" stuff for a long time. She has also been seeing doctors for over 3 years on all of this stuff. My concern would be that if it was set to go off more, she would need a battery replacement ALOT more often because of the level of voltage that is needed on her top chamber.

I honestly don't know how anybody can do it. If my wife didn't have me to support her, I'm not sure what she would do. I am able to put her on my insurance. She has attempted to hold several jobs, but just can't do it. Her working = Emergency Room visits (just a matter of time). When she first moved here, we were able to COBRA her insurance. Very expensive, but was the only option. Her prescriptions were more than the premium payment, so was a "no brainer". Eventually, that would have ran out though. It is a Catch-22 situation because you have to work to able to afford insurance, but if you are healthy enough to work it isn't as big of an issue. If you can't work, you can't get affordable insurance, but that is when you need insurance the most...when you are sick. The other misconception that many folks have is that many times they can't disallow coverage because of a pre-existing condition. Let's say that is the case, there is nothing stating how much the insurance company can charge for the coverage. Many states have programs to assist with situations like your's. I know our's does, but then you have to meet all of those requirements as well. I offered (my now wife, but at the time wasn't) a place to live to recover from her surgery and other complications. We were just friends at the time, but because she lived in my house she didn't qualify for anything because of my job. Lots of flaws in these programs. All you hear about is how people are on them, but I'm not sure how anybody gets into these programs.

The voltage that is given to the heart can be adjusted. Her top chamber is set to the highest value. It can't go any higher. I believe that the heart can actually become somewhat "immune" to the shock requiring higher voltages. Her's was set high to start with and now it is maxed. The only option now is replacement of the lead if her heart fails to respond to the shock. Her's is a pacemaker, not a defibrilator. She didn't have the high rate issues until after she had her pacemaker implanted (or at least this issue was not identified at that time). They tweaked her's a bit too, but mainly consisted of putting it in sleeper mode at night. Between the voltage of the shock and the fact that it was pacing up to 100bpm when it shocked the heart caused her to wake up at night. It is now in sleeper mode where it paces up to a much lower number. That's what we are hoping for future surgeries. The scary part is that the complications almost killed her. She almost died like 3 times in less than a few days. She was 30 at the time.