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

Hi, My soon to be 16 year old son who has POTS and EDS III, was recently diagnosed with ADD (without hyperactivity). His doctor is currently doing some reading to try to come up with what would be the best medication to try. One of her concerns is that he is 6' tall, and only 117 lbs. He cannot afford to lose any weight at all. We are at the point where medication really seems necessary if he is going to be able to complete his school work. I have read some old threads on this topic, but they only discussed medication options. Has anybody out there had a similar situation? Were you able to find a med that did not decrease appetite, yet did not cause tachycardia? Thanks, Carolyn

I'm going to answer twice. Once for me, and once for my son. 1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? Yes. I've gained a lot of weight since I've been diagnosed, so it seems more like swelling rather than my legs turning purple. 2. Have you ever been diagnosed with EDS or suspect that you may have it? Yes. 3. Do you experience symptoms when lying down even after a night of sleep in your bed? Yes. Especially before I was medicated. 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? Not diagnosed, but I suspect it. 5. Have you ever been informed by a doctor that you have low blood volume? My neurologist assumed it. I have not had testing. 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? Yes. I have had IBS for 20 years. It has gotten more pronounced since my POTS diagnosis. 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? Yes. Extremely cold hands and feet at times. 8. Did your POTS arrive suddenly? I think I had mild symptoms for years. They became more pronounced following the birth of my last child. It took several years before they were completely interfering with my daily life. 9. Is your skin pale? Yes. I come from a dark skinned Italian family. I am the only one who is pale. I was not pale as a child. 10. Please the top 6 worst symptoms that you experience with POTS: Tachycardia PAC's Chest Pain Shortness of Breath Fatigue Heat and Exercise intolerance *I live an almost completely normal life since being medicated with low dose Beta Blockers 4 years ago. My son's answers: 1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? Extremely severe pooling in legs. Slightly less in hands. 2. Have you ever been diagnosed with EDS or suspect that you may have it? Yes. Diagnosed by a geneticist at Vanderbilt. 3. Do you experience symptoms when lying down even after a night of sleep in your bed? Yes. 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? Not diagnosed or tested, but suspected. 5. Have you ever been informed by a doctor that you have low blood volume? My doctor assumes I have low blood volume and I have been treated for it, but not tested. 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? Yes. IBS and intense stomach pain related to blood pooling. 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? Yes. Extremely cold hands, arms, and feet when standing in place for only short periods. Very painful legs as well. 8. Did your POTS arrive suddenly? Over a period of a few months. Symptoms came and went but were severe when present. 9. Is your skin pale? Used to be olive complected, but now pale. 10. Please the top 6 worst symptoms that you experience with POTS: Very large increase in heart rate upon standing. Chest Pain and pressure Fatigue Heat Intolerance Severe stomach cramping due to blood pooling most mornings Greying out upon standing/brain fog accompanies this

Hi, I don't know your age, but rapid cycling is more the norm in young people with bi-polar disorder. Adult onset is more likely to have extended periods of both mania and depression. Young people only rarely have extended periods. Carolyn

I can totally relate! It's a real drag! My son had a large speaking part in a school production this past year and it was totally ruined for me. I was so nervous for him that my heart was beating out of my chest. I thought I would pass out and really destroy his performance. My heart's response was totally out of proportion to the event. My kids' end of year awards program was ruined for the same reason. At least with the play, we could watch it on tape later. The awards ceremony was different. Instead of being able to enjoy the suspense and thrill as he won multiple awards, I could only concentrate on whether or not my heart rate was going to stay under 200. Sometimes with tv programs like you're describing, I'll just have to turn away and stop watching. It does spoil things a lot. Oddly enough, my whole life I have always had a lot of empathy for other people. That used to be a good thing that helped me win many friends. Since POTS, it's like empathy on overdrive! I did talk to my doctor about it, and he suggested taking a larger dose of beta blocker for events I can plan in advance. The problem is, for me, in regular circumstances, more medication means a slow heart rate and extremely low blood pressure. I wish I had the answer, but I wanted you to know, you are NOT the only one with this problem! Carolyn

Hi, My husband took both. Effexor was a nightmare for him. He had horrible headaches and many other terrible side effects. He started taking Cymbalta after he was weaned off of Effexor and he has not had any problems with it. It works very well for him without any notable side effects. Everybody is so different, though. Good Luck! Carolyn

Hi, I've moved 11 times in 22 years of marriage, so this is something I deal with all the time. I agree that asking a doctor you trust if they "know of anybody" in your new area is a good idea. Only once has this worked for me, though. What I usually do is start by trying to find a good internist. I ask everybody I meet. I don't tell them my life story or anything, but I just say I'm new in town and I want to know who "the best" is. I think nurses are great resources, and if I encounter doctors in my social circle, I'm never shy about asking them who they would recommend for a family member for my health problem. After a while, you start to hear the same names. I most recently moved this past May. My internist, who was great and coordinated my care for me with other specialists, was very worried about me finding proper care in my new town. He gave me some great advice. He told me to listen very carefully for three little words when I was interviewing doctors. He said those three words were : "I DON'T KNOW". He said that going to see anybody who behaved as though they understood everything about dysautonomia would either be suffering from a tremendous ego (believing that their opinion made something a fact) or extremely delusional. He said that finding a physician that was willing to read, learn, and perform tests ordered by other doctors (my electrophysiologist lives hundreds of miles away) and be willing to guide me to other specialists was what I should be looking for. I have found that there is nothing more valuable than having someone to help you navigate the medical field. Talk to everybody you meet in your new town. In answer to your last question: No, I do not usually find anybody who has any new or different ideas about treating me. If I'm really lucky, I will find a doctor with another POTS patient. Usually, I am the one and only, but the last few towns, they have at least heard of it. Usually the best case scenario is getting somebody who listens and will work in collaboration with me. Best of Luck, Carolyn

Morgan, So sorry to hear about this. It's bad enough having health problems yourself, but when it's your kid, it's magnified about 10 fold. (My 14 year old son just had his diagnosis tweaked from orthostatic intolerance to POTS, so I know what it's like!). My husband was recently on Effexor XR for a few weeks. He had a terrible reaction to it (many horrible side effects, it was a true nightmare), but I do know many people that find it really works. Oddly enough, the one side effect my husband had that made me think this drug would be very bad for many POTSies was orthostatic intolerance. He even had blood pooling in his legs and lots of dizziness and greying out when standing. One of the components in this medication can over do the vaso-dialating thing. My husband did titer down on it for a period of two weeks to get off of it, but I don't think it would be helpful to tell you the amounts because of possible differences between height, weight, and time on the drug. He also simultaneously started gradually on Cymbalta. It wasn't pleasant, but he did survive it and after gradually weaning off, he stopped having "withdrawal side-effects" after about 10 days following finally stopping. He did have some anxiety and also migraines (for the first time in his life) which the doctor again attributed to the vaso-dilating. He had no problem with the Cymbalta. In my opinion, there are too many people prescribing anti-depressants that are not qualified to do so. If you can't get any weaning info for your son from the people who have treated him in the past, maybe he could just go to a walk-in clinic and speak to the physician there about properly weaning. Especially if he is having such a horrible reaction to this drug. He certainly deserves some relief! From our experience, if he gradually titers down, and even better if he could begin the Cellexa again, I think he will be fine. My husband had a few really bad days, but they are definitely over now. Best wishes to you and your son! Carolyn

Hi, Dari, My insurance insisted on the change this month, although they did warn me in advance. My doctor's office just called and they were able to write a "no generics" prescription for me that my insurance company did accept. Your doc would do the same for you, I'm sure. Carolyn

Hi, Thanks for your response. I also took the generic Metropolol sporadically before I was diagnosed, and it also worked for me. Once I was diagnosed, my doctor thought the XL would be better. I think there must be a difference between the generic metropolol and the extended release generic. Since I posted this question, I have founded countless other people who have experienced the same problem, and like me, all got better once they resumed the Toprol XL. Apparently, more than one company also makes the extended release generic, so that may be a factor, too. Carolyn

Hi, I've been on Toprol XL since my dx over 2 years ago. I've done really, really well and live an essentially normal life. Most of the things I suffered with before my dx like reflux, gastric emptying issues, heart pounding, vision issues, chest pain, resting sinus tachycardia, heat intolerance, and huge increases of pulse when going from sitting to standing have pretty much gone away. I still have trouble with extreme sinus tachy when running or walking steep inclines, though. I only take 25 mg of Toprol, and while more worked better, it made my blood pressure too low and it also depressed me. Last week, my doctor wrote me a new prescription for 25mg Toprol XL so I wouldn't have to cut the pills in half anymore. When I filled it, I was given the new generic. Since the day after my first dose, all of my dysautonomia issues are gradually returning. At first, I didn't even make the connection between the new medication and the return of symptoms. I have now had heart pounding for the last 5 nights, vision trouble as of yesterday, horrible reflux and now the stomach pain that occurs with my gastric emptying issues has returned. Worst of all, for the first time in two years, I had a bout of resting tachycardia today! I ended up having that wonderful chest paint that had become a distant memory. I called the pharmacist and asked her if the change to the generic could be to blame. She said that on occasion, a generic is bound with a different kind of filler and that it is sometimes not tolerated by some patients, but that she wasn't sure about this generic as it is relatively new. She suggested that I take some of the old Toprol XL's I had left over for a few days and see if there is an improvement in my symptoms. I did that today after my tachy episode and after about an hour I felt better than I have for the past few days. Has anybody else noticed a difference between the regular drug and the generic? Thanks, Carolyn