cmtaylor5

Mine is identical to Mack's Mom.

Hi, Naomi, I don't know if an MRI can image salivary glands, but they can be imaged by CT. How long have you had the metallic taste? If it was within a few hours of the MRI, that could be the cause if you had it with contrast. I read that when researching what's going on with me. It is very rare, though just like with the CT scan. I am starting to think that mine is an allergic reaction, though. Out of desperation, I took 50 milligrams of Benadryl at bedtime and the past two mornings I woke up without the taste. Both days it did return in the evening, though. I also notice that if I start to get upset, the taste is much stronger. I had ideopathic anaphylaxis as a kid, and often becoming upset would start me off with hives, and eventually the full blown reaction. This taste does not taste the same as when I have had anaphylaxis though. My CT scan did not go well. I had extreme flushing and a really disorganized heart rhythm that was very fast. I'm used to tachycardia and even bigeminy, but this was much worse. I had tremendous chest pressure and a choking feeling. The tech didn't know what to do (which is funny, because he knew to warn me what might happen). I laid on the table for a few minutes, tried some valsalva maneuvers and eventually my heart rate returned to normal. I was pretty disgusted that all the tech did was stare at me in fear and so I left. The salty/metallic taste started about an hour later. From the little I've been able to find, and from a little information a friend who is a doctor could find, it seems it was a delayed allergic reaction. I hope you find out what's causing your problem. I know from lots of experience that it gets a little old always being the one with the odd medical symptoms! Carolyn

I am also having this problem, but it's only been happening for 2 days. I had a CT scan with contrast and have had this salty taste ever since. When it's really intense it tastes almost metallic. One of my doctors has heard of this happening before, but has no idea what causes it. I was told if it continues after 72 hours, I'm supposed to contact my regular doc and begin tests to investigate what the problem is. I have had a blockage in one of my salivary glands once, and when it was unblocked during a procedure, the discharge was extremely salty. It may be that your salivary glands are infected or if you tend to be dehydrated, I think that can be another cause. Might be worth discussing with your doctor.

Hello, My son and I both have POTS. He first showed symptoms at the age of 9. He was diagnosed at 12. I was diagnosed at 41 (when he was 11). We saw a geneticist last year and found that we both have POTS secondary to EDS type III. I think my two other boys also have some symptoms- hypermobility, heat intolerance, a little occasional orthostatic intolerance, etc... but they don't have the tachycardia or digestive symptoms that my son and I have. My son is now 16 and has improved quite a bit this year. He does not take medication. I am very well controlled on a low dose beta blocker. I know that I was reluctant to have my son tested once I was diagnosed and made the connection that we were actually having the same symptoms. It ended up being a really simple dx and my doctor informed me that he treated many mother and child patients and that it was very common to pass it on from one generation to the next. As EDS III is genetic, that makes perfect sense. Best wishes to you and your child! Carolyn

I have the Sketchers Shape Ups and really like them. If you order them online at the Sketchers website, you can get more than sneakers. They even have some that are work appropriate. My POTS is very well controlled with medication, so I can't really comment on whether or not they improve those symptoms, but I really feel like they are helping the joint problems I have from my EDS III. I also find that they help with posture. They are not attractive at all, though! Everything I read about them said to buy a 1/2 size larger than normal, and that turned out to be good advice. Some people have numbness in their toes when they wear them for great lengths of time, so having extra room in the toe is key. They also recommend that you gradually begin wearing them, 20 minutes the first day, etc... I didn't, and did not have any ill effects or extra soreness from wearing them all day, but that might just be me. Hope this helps! Carolyn

I do.

I was diagnosed about 5 days ago. I didn't feel that bad, but felt I should go in just in case as I'm asthmatic and on a beta blocker. They gave me Tamiflu and I swear I started feeling better within a few hours of the first dose. It worked really well. I did have a lot of PACs, but I do get them when I'm sick. I never did take my pulse, but I usually get PACs when my heart rate is low, so it's possible that it was low during this illness. The only time I didn't have the extra beats was when I had a fever. Usually my heart rate is higher when I have a fever. For me, H1N1 was the mildest flu I can remember having. But, I got treatment right away and I'm 46, which my doctor said was advantage. Take care of yourself, keep an eye on your respiratory symptoms and try not worry. Carolyn

Hi, I'm taking my last dose tonight. It made me feel a little weird/tired at first, but then didn't bother me. I had bouts of early heart beats/PACs (I often go into atrial bigeminy and stay that way for a while) but that may just have been because I had the flu and that happens a lot when I'm sick. I normally am very sensitive to meds and this one was just not a problem at all. I was actually prescribed this the first time I was exposed to H1N1 and was too afraid to take it. Then, after multiple exposures, I ended up getting H1N1. It does make the flu go away MUCH faster, so try not to be scared! I would definitely take it again if I needed to. Carolyn

I had identical symptoms when my POTS got really bad (I think I've probably had it mildly my whole life) right before I was diagnosed. Since about 3 months after being put on a beta blocker 5 years ago, I no longer have the suddenly speeded up heart rate at rest (which was not PSVT, but just rapid normal rhythm) or the narrowed pulse pressure. For a few months prior to my diagnosis, I had the narrowed pulse pressure for most of the day and it really made me feel awful. I was almost completely non-functioning. Now I lead pretty much a normal life with some restrictions on activity like climbing lots of flights of stairs, running, or heavy exercise. Carolyn

Yes, my maternal grandfather had cardiomyopathy. I inherited EDS from my mother. No migraines for me, but my son who has EDS and POTS has mild ones (blurry vision followed by moderate headaches). Carolyn

Thanks for posting this. I have probably had POTS my whole life, but it was extremely mild and didn't really interfere with my life. I was given Avelox (one of these drugs) and had an incidence of pounding heart, insomnia, and eventually a resting heart rate in the 160's that occurred within an hour or so of my first dose. My life was never the same after that night. I was given Levaquin a few years later, and was not able to sleep for over 24 hours after one dose. I refused to take quinolones from that point on. I will now make sure my kids' medical charts (they have EDS as well) specify that they never are given Cipro or any others that may be on the market. I did mention my suspicisons to my doctor at one point several years ago, but he was not aware of the link. Carolyn

Hi, My son has the H1N1 virus. I had to pick him up at school. Because I was exposed during our hours long ride home, his doctor gave both of us Tamiflu, even though I'm not ill yet. The doctor said that it's so contagious, "there's no way you won't get it." Like many of us, I don't always react well to medication. Has anybody out there had any experience with Tamiflu? I have asthma, so I am considered to be in a higher risk group for complications from this particular flu. Thanks, Carolyn

Hi, I have not had chest pain since I started on Toprol XL several years ago. Before that, chest pain and heart pounding were my two most horrible symptoms. I have not had either since I started on Toprol XL. I did not do as well on the generic. For me, the difference is quite noticeable. For a brief period this year, I had to go back to the generic. The chest pains returned and my symptoms were not as well controlled. I have received different responses from pharmacists regarding the generic vs. the "real" one. I think there is more than one maker of the generic and this may be why. My doctor writes on my prescription that I am not to receive the generic. Hope this helps! Take care, Carolyn

Thanks to all for you input and empathy! Babette, as far as the brain fog affecting the ADD or causing it, I do think at times it contributes, but looking back, my son has had inattentive issues that go way back before he had POTS symptoms. My older brother has about the most severe case of ADHD I've ever seen. I think because of the severity, ADD without hyperactivity just didn't stand out to me so much. My brother is now a bank president and very successful, but he still struggles with attention issues. I think in many ways his ADHD helped him to develop skills that made him a stronger person, but it was not easy. Maxine, I appreciate all your comments. I am actually a dyslexia specialist, so I am very well versed in fighting for rights and accommodations for my clients and one of my own children who is dyslexic. Dyslexia is co-morbid with ADHD (primarily the inattentive type) more than 40% of the time, and these students are especially in need of accommodations. I will be happy to take all of your comments to my son's internist as she has asked for input from all the "experts" who suffer from POTS! From what she says, it is often trial and error with ADD medication, I'm just hoping that there will be no weight loss during the trial period. My son is just getting back on his feet after a 6 month bout of severe mono, so he could really use a break! Once again, thank you for all your responses! Carolyn

Thanks, Babette, Yes, I also have POTS and EDS III. My son went to a geneticist at Vanderbilt for a dx. I am even more hypermobile than he is, and since it's genetic, even though I didn't see the geneticist, my internist dx'd me with EDS due to my son's dx. (does that make sense?) It was much more helpful than I thought it would be to have that EDS dx. It explains why beta blockers are so successful in treating me (from what I was told), and it also helps to explain the 10+ spinal herniations and subluxations I have. It's good to know that my son can start early protecting his joints. Before Vanderbilt, I had a bunch of tests and had come to believe that my POTS was primary. Where are you going for testing? Carolyn