cmtaylor5

Hi, I have only a POTS diagnosis. I do not faint, and I really don't have true OI, because my blood pressure doesn't drop when I stand, my pulse pressure just becomes extremely narrow. My condition was progressing until I started beta blockers. I tried just taking them when I had bouts of resting tachycardia, but that didn't turn out to be enough to keep me from feeling really lousy and tired all the time. Until I was on them every day, my symptoms were progressing. I have now been on a low dose beta blocker for over 2 years. It took about 3 months to regain my ability to live a normal life, but essentially, I do live one. I have occasional fluctuations in my tachycardia related to hormones, and/or if I'm doing extremely strenuous work or exercise. However, I have not had a bout of resting tachycardia in 2 years, and I don't have the vision disturbances, shortness of breath, heat intolerance, or chest pain anymore. I can now take very hot showers and baths without being weak and exhausted afterwards. I wouldn't say that "I'm better", because I still have POTS. But my symptoms are manageable and have only regressed, never progressed, since I started low dose beta blockers. I will say that every single person seems to be different, and since there are many reasons/causes for POTS, it's hard to say what will happen for each individual. Mine appears to be primary and genetic. My 14 year old son also has it. Hope this helps, Carolyn

Hi, I've been an at-home mom for 15 years. Recently, I opened my own practice and am working as a dyslexia specialist. I screen, test, diagnose, and write accommodation and remediation plans for dyslexic kids. I also tutor and remediate dyslexia and dysgraphia. It's a great job, very rewarding, and it doesn't conflict much with my POTS. I was very physcially active and energetic before my diagnosis, so it's great to have something meaningful to do that allows me to expend mental energy, yet isn't physically taxing! Carolyn

Has anyone on the forum ever been seen by Dr. Fish at Vanderbilt? He's an electrophysiologist. If so, do you have any information to share? Thanks, Carolyn

Hi, A HUGE thank you to everybody who responded! All of your suggestions and input are so greatly appreciated! My husband and I feel much better equipped to make this decision now! Having POTS is such a drag, but having a kid with it, for me, is just so much worse! It means so much that all of you are here to share information and understanding! Thanks again! Carolyn

Hi, My almost 14 year old son who was diagnosed with orthostatic intolerance in March by our family doctor, saw a new pediatric cardiologist today. My son has been feeling pretty crummy and exhausted lately. Although I'm a POTSie myself, I don't have the terrible problems with blood pooling and presyncope that he has. I am well controlled with a low dose beta blocker. At the appointment today, my son's resting pulse was 98, and his sitting to standing pulse was 196. He also had pronounced blood pooling in his feet, calves, and hands. Naturally, he is exhuasted and feels lousy. The doctor feels that it is time for Florinef. Although I see it mentioned all the time on the forum, and I think it has to do with increasing blood volume, I don't know much about it. Our family doctor had told us that our son was definitely too young for Florinef, and that if it was his kid, he'd never use it. Is there anybody out there who can tell me more about it? Is there anybody on the forum who has a child/adolescent that takes it? The doc today said he'd "never seen anyone have a problem with it". Such differing opinons.....so I thought I'd ask all of you who are the real experts! Carolyn

I switched from splitting my Metroprolol dose to twice a day to Toprol XL (which is extended release metroprolol) for this reason. I was told to take my Toprol in the morning or before bed, but I found that taking it at about 1-2pm works best for me. I didn't have a problem sleeping, and it was still working in the morning, which is my worst time of day. Taking it later than 6pm gives me very vivid dreams that are often unpleasant. Just my own personal experience, and I know everyone is different, but I was severely compromised before I started on Toprol XL, and I have now lived an almost completely normal life for the 22 months I have been on it. Tachycardia was my main symptom. I had given up on the Metroprolol and was only taking it when I had serious episodes of resting tachy. I would say that it took about 3 weeks before I was totally used to the drug. My PCP had suggested I take Ativan or Xanax (I take a quarter tablet of the lowest dose possible because I am very med sensitive) to help me sleep every other night at first. I really didn't need it, though. Best of Luck to you! That "wired but so tired" feeling is the worst! All I can say is that getting my tachycardia under control changed my life! Carolyn

I take 25 mg Toprol XL. Before I started taking it, I was very compromised. I couldn't work and I wasn't able to be fully active taking care of my home and family. With it, I live an essentially normal life. My main limitation is that I can't do anything that requires heavy exertion. Carolyn

Hi, I can't answer your BP question, but I can tell you that watermelon, honeydew melon, and canteloupe very commonly cause food allergies. Watermelon can cross react with pollen allergies, especially grass, I think. Google "watermelon allergy" and I'm sure you'll find it is very common. Carolyn

Hi, LindaJoy, So sorry for all the trouble you are having. Although I want to respond to your questions, I don't want anything I write to be interpreted as advice because after reading all these posts, it seems like allergic reactions really vary and your doctor should be involved in any decisions you make about treatment. Having said that, I know it helps when others have similar stories. I had my first full blown anaphylactic reaction when I was 3, and I had at least 2-3 per year after that until my early 20's. I have very specific food allergies, but the reactions always began the same way. No matter what food it was, I get a very strange taste in my mouth. I'm allergic to goat's and sheep's milk, and I get the same taste in my mouth whether it was goat's milk fudge, or romano cheese in spaghetti sauce. I don't exactly know how to describe the taste, but it is not pleasant. The taste would immediately be followed by the angioedema. For me, that means my lips, eyelids, ears, armpits, behind my knees, and throat would swell. In about 15 minutes, I would not be recognizable. The itching starts a few minutes after the swelling. As a kid, my armpits would usually itch first, then I would get hives and itching everywhere, especially my trunk, neck around my hairline, and my thighs. I learned not to scratch, because it seems to make thing worse. I would also have severe wheezing. My fingernails would always be dusky, so I assume that my oxygen level wasn't great. I'm not sure about my blood pressure. I was too young to really pay attention. I always received alternating injections of benadryl and epi in my hips at the ER. I would usually be given a dose pack of decadron to take home, but I don't remember using it. As for the benadryl, I definitely wouldn't take it again without talking with your doctor, but I had a horrible reaction with it the only time I had it IV. The nurse called it "a flash". I had tachy and shortness of breath and felt dizzy and disoriented. I have continued to take benadryl for the past 20 years in every form but directly into a vein and have never had a problem again. I'm now 43, and react much less strongly to foods I'm allergic to. Instead of the full blown reaction, usually only my eyelids swell and I get a little wheezy and my throat feels thick. I also have times when I eat something and have just the thick feeling throat, the hoarseness, and a little itching. I always assume that it's an allergy, and take benadryl, but I don't go to the ER. I also have reflux disease, though, but it never occurred to me that it could be the cause. The only other thing I can think of to say to you is that througout my life, my allergies have changed. Twice in my life following a surgery, and once after a medical procedure, I had new and different allergies/types of reactions. They eventually calmed down. After one of my pregnancies, I repeatedly had the allergic type feelings that you are describing. I went to my allergist and I reacted to everything but two foods during my skin testing. I tried to avoid those things I reacted to most strongly and after awhile, my sensitivities to them all died down. Maybe you should try another round of allergy testing and see what comes up. The other suggestion I have would be to eat something that has caused you a problem recently, while at the allergist's office and let your doctor monitor your response. Best of luck, I know that it can be really scary. Carolyn

Hi, I totally understand how you feel. My 13 yr old son was diagnosed last month. All I could do was look into the future for him with fear. However, even with an obvious genetic connection, his doctor encouraged me to hope that he would outgrow this after adolescence. I didn't become severely symptomatic until my late 30's, and I live a mostly normal life with a few exceptions and a small dose of beta blocker. My son has terrible bouts of presyncope, which I don't have, so I do worry some that he will end up having a worse case than I do. Having said that, I did notice that he took the diagnosis in stride. I'm sure that part of that is because he's 13, part is because he's seen me living with it for a while, and part is because even though it wasn't officially named, he's basically been living with it since he was nine and it's what he considers "normal". I decided that I would let him set the tone and that we'd take it a day at a time. So far, it's going okay. Best wishes, Carolyn

I'm left handed. Only one of my kids is left handed and he's the only one who is also symptomatic. Carolyn

Hi, I emailed the Today show and asked them to do a follow up story on "orthostatic intolerance" and dysautonomia. Often times, when someone famous has an illness, there are in-depth stories that explain the illness. I think this could be a chance for us to get the word about dyautonomia. If anybody else would be interested in emailing with the same suggestion, the email address is today@nbc.com. Carolyn

I live in Georgia. I would recommend my electrophysiologist, Marcus Wharton. He is actually in SC at the Medical University of South Carolina in Charleston. If you want to PM me, I have more information. Carolyn

I tend to agree with Morgan on this one! My new neurologist that I'm seeing for neck problems, told me that "Eventually all you women will realize that POTS is just PAT and it has nothing to do with neurology." I was pretty stunned by his remark. I asked him if he was under the impression that I had never captured my arrythmia on an EKG or Holter monitor. He said, "You mean you have captured it?" I said, "Well, that's not really too tough to do, since when I'm not medicated, it happens every time I stand up! And, by the way, even with rates over 190, it's never a PAT! It never originates in the atrium. It's always good old sinus tachycardia." His response was "Oh, it is? So, I guess you know what a PAT is, then?" I'm thinking, "Why not just admit that you know nothing about this?!" I have never discussed the weird shortness of breath, the unequal dilation of my pupils, the gastric emptying issues, the disequilibrium, etc... or any of the other weird things that I suffered from before my diagnsosis. I think with a doctor like this, it's not worth it. Carolyn

Hi, I have POTS and have a 12 year old son who is symptomatic. Many of his symptoms are the same as you are describing with your son. I would advise you to ask your pediatrician to refer you to a pediatric cardiologist. I would check and make sure that the pediatric cardiologist is familiar with POTS. We were sent to one and he did a very thorough evaluation that included an echocardiogram. I think if there is a hx of subluxations, then you are probably wondering about a dx of EDS and you would also want Marfan's ruled out. My son turned out to have Mitral Valve Prolapse. Another suggestion I have is checking out the Dyna kids website. (www.dynakids.org). Although a dx is not easy for many of us to come by, I found that my son's pediatric cardiologist was much more familiar with POTS than any doctors I had seen for myself. There is a developmental form of POTS that occurs in adolescents that I was told is more common than the adult form. Dyna kids should be able to provide you with a list of health professionals for pediatric dysautonomics. Best of Luck! Don't give up! Carolyn

I'm from Erie, Pennsylvania which is not far from the Ohio border. Erie is not a big city, but I know several people there who have POTS. I have noticed in the year that I've been visiting the board that there seems to be a "Great Lakes" Cluster. If I'm not mistaken, I believe there is a cancer cluster in this area, too. When my neurologist first found out my hometown (I live in the South now), he immediately assumed that I would have MS. It is strange.....

This is such a tough call. I see an internist who admits he doesn't know anything about POTS, but he'll read things that I bring in. He'll also order any test I ask for without putting up any objections. The problem is, I'm not always sure that me directing my care (by getting ideas from my own research) is such a great thing. Because essentially, while I know how I feel, I don't really know what I'm doing. On the other hand, the neurologist I'm seeing for my compression in my cervical spine, told me yesterday, "All you people with POTS are going to eventually find out that all you have is PSVT and that there is no neurological relationship at all." It was an incredibly arrogant statement from someone who admits that he has only seen two other POTS patients in the past 30 years, and treated neither. My response was, "Wow, that's amazing, since all the electrophysiologists I've seen have never found a single thing but sinus tachycardia on all the event monitor, holter monitor readings, and EKGs I've had." He said, 'You mean they've captured the arrythmia?" I said, "It's not really tricky to capture it, it happens every time I stand up! But, I'll have to let my EP know that even though he's the expert, he's been misdiagnosing people all along! I'm sure he'll be relieved." His response was a big smile and he said, "You know what? You're funny!" (thank heavens my co-payment was only $20!) My electrophysiologist is fantastic, but lives 5 hours away and doesn't know everything there is to know as he is a general arrythmia specialist and is very talented when it comes to ablations (which of course, I'm not a candidate for). I think sometimes I should go somewhere that specializes in dysautonomia even though I do really well on just a beta blocker. I have a fear that my POTS is secondary and that I really should be finding out the cause. Then I have an appt. like yesterday, and I get really, really discouraged. I hope you find the right person to treat you. Nobody should have to dread a doctor's appt. because of how the doc makes you feel! Carolyn

Hi, This happens to me at times and will last a few hours to a day or so at the longest. It's not consistent, though. I really hate it. My limbs and nose are very cold to the touch. Sometimes, when it stops, I go the other end of the spectrum and start to feel hot and eventually break out in a cold sweat. Other times, my body temp just returns to normal but during the transition, I have shivers, chatters, and chills similar to what happens after I've been given a dose of epinephrine. Carolyn PS : I typed out a lengthy response to your last PM and it disappeared before I could hit send! I'll respond soon!

Hi, Sorry to hear that you are frustrated with the lack of answers from your testing. Where did you have it done? I thought I would respond because I know from reading your posts that we have very similar main symptoms. My primary symptoms before treatment were tachycardia and fatigue, and I don't get dizzy or lightheaded either. I have never had any flow testing done, but if I had to guess, I would imagine that pooling wouldn't be a problem for me. However, I have had countless EKG's done, and many with heart rates between 160-190+. Some were taken at rest during an adrenaline surge, and some were taken during and after exercise, and every last one of them was strictly sinus rythym with no variations at all. I have been seen by 2 cardiologists, and 2 electrophysiologists, and all 4 of them agreed on that. You do mention that you had a heart rate of 120 supine during one EKG, and I would say that we differ there. Unless I am having an adrenaline surge (and I am very aware of my heart rate during one of those) I never had resting tachycardia. Sometimes if I was nervous, it would hover around 100 at rest, but otherwise, my resting rate was low. Most of the time I have given up trying to find out the origin of my problem. The doctors I see regularly know something about a few causes of POTS, but I don't see anybody who has a grasp of the full picture. They'll order diagnostic tests if I ask them, but not much ever materializes. I feel like I am the one directing my care sometimes. I usually just try and live with it since my symptoms are mostly under control. Just recently my husband has been after me to start persuing an answer again. He believes my POTS is secondary and not primary. I'm not sure what I'll do. Like you are finding out, hitting dead ends and getting no answers is really taxing. I've been visiting the board for a year, and I don't really think the majority of us ever get a really specific answer as to what is causing the problem. Good Luck, Carolyn

Hi, Daniel, My onset of POTS was very gradual. I know I have had symptoms at least since my last pregnancy (8 years ago). It didn't get bad enought to seek treatment until 2 years ago. It took me about 1 year to get diagnosed. To answer your question, all of the things that were "wrong" with me and are listed as my diagnoses all happened before I was diagnosed with POTS. Some I had for years, but most came on when my POTS got bad enough that I had to seek medical help. I had no idea that all of my symptoms were the result of the same illness. I have not had any new symptoms since I have been diagnosed and gotten treatment. Some of the thngs like the breathing problems, and vision problems don't happen to me anymore or are very rare occurrences. All of my symptoms have been drastically reduced since I got the proper medication. When I was diagnosed, my doctor told me that for some[/i people, once they find a treatment that is effective, even if they need to take medication for the rest of their lives, the disease will not get any worse. I now live an almost entirely normal life. There are some things I have had to accept that I cannot do anymore, like running. You probably already know by now that you have the best chance for a full recovery if you had a sudden onset of symptoms. You are doing the right thing by trying to find out as much as you can. I think you should be hopeful that you will improve. I am in quite a different place than I was last year at this time. Before medication, I was really, really compromised. I think most of us with this disorder have come to realize that we can't look too far into the future. Nobody really knows enough to give us an accurate prognosis. For me, this was very hard to accept at first. It took time. However, most days now, I can live with that and I feel better since I have come to terms with that fact. Continue to educate yourself and experiment with the ideas that you will be given from other board members. The people here can help you learn a lot! I'm confident that you'll find the coping skills you'll need to make it through! Best of Luck, Carolyn

I just had a conversation about this with a friend who is on Paxil for anxiety. She wanted to change her medication because she found she had trouble losing weight while on the Paxil. She had heard that it's easier to lose weight on Wellbutrin (we have a mutual friend who takes it) and asked her internist for a prescription at her last visit. He refused and told her that he will not prescribe Wellbutrin for anyone who's main symptom is anxiety. He does prescribe it for depression, though. He told her that since anxiety is her main problem, it would not help her. Since this is your cardio doing the prescribing, maybe you should double check with your internist or GP. They are the docs who prescribe this medication more frequently. By the way, I hope that you mentioned that you found the sighing offensive. That is very unprofessional behavior. Maybe she doesn't realize she's doing it. If she does, she needs to be told that you would like her to "use her words" to communicate with you (just like you'd tell a toddler) because you take your health seriously, and don't want to misinterpret her signals. I'm sure she'd spend an awful lot of time sighing if she had to live with POTS, since she can't seem to even tolerate hearing about the symptoms! You deserve better treatment. Carolyn

I took the same dose of metroprolol as you do, 25 mg 2x per day. I had the same side effects, and eventually, a little depression creeped up on me. I also tried adjusting down to 12mg 2x per day, and that didn't seem to be enough. I still got break-through tachycardia. Finally, my new doctor put me on 25mg of Toprol XL per day (Toprol XL is metroprolol in the 24 hr. time release form). This has worked for me very, very well for the past year. It took me about a week to get used to it (I had been off all beta blockers by the time it was prescribed), and about 3 weeks to see the full effects. After that, my POTS symptoms all gradually improved over the next 3 months, and since then I live an essentially normal life. Best of luck to you, Carolyn

Hi, You don't have to have dizziness to have POTS. I have POTS, and I don't have dizziness. If you haven't already, maybe you would want to take a look at the NDRF handbook. It does a great job of explaining the differences in various dysautonomias. Here's the link: www.ndrf.org You can find a list of symptoms for diagnosing POTS beginning on page 54, of Section A: "What Are Dysautonomias?" (if you are using the free online PDF viewer) or page 112, if you choose to purchase the actual book. I think I have 8 of the 10 or 12 symptoms listed. I always assumed that I didn't get dizzy or faint because I'm not one who has a tremendous drop in blood pressure upon standing. However, as the handbook states, you don't have to have orthostatic hypotension in order to have POTS. Personally, I get a small gradual drop in systolic, but my diastolic raises, and my pulse pressure becomes narrowed. I just feel sick then, but not dizzy. Because POTS isn't a disease, but a syndrome (a collection of symptoms), there are lots of reasons for it, and people experience it differently. That's why what works for some of us can actually make others worse. Best of Luck, Carolyn

I jsut recently developed this, and it's pretty unsightly on me. My doctor said that main causes are thyroid dysfunction, mild ovarian dysfunction, pregnancy, or birth control pills. All four have been ruled out for me. I never heard the connective tissue connection, but that's pretty interesting. It's about the only thing I haven't had checked out yet. Carolyn

Yes, my son has tachycardia. Carolyn