cmtaylor5

Hi, Sorry you're having such a frustrating time. I can relate to a lot of what you are writing. I think it will help if you find someone who can actually test you, and maybe start you on some medication to control your symptoms. As for the vitamin B12, there are blood tests that will indicate whether you are low on this vitamin or not. Have you had any bloodwork? None of my bloodwork comes back abnormal, but taking any vitamin supplements makes me very, very ill. Every woman with a difficult to diagnose condition is told it is stress. It wasn't stress, but it sure was a relief to find some answers! I don't know whether or not to tell you to demand an MRI. I had one because I was experiencing disequilibrium. I had my MRI 2 days after I was diagnosed with POTS. Mine came back completely clean, no sign of any lesions (I'm assuming you are worring about MS), however, it did show significant damage to some of the vertebrae in my neck. My electrophysiologist and neurologist both thought that the location of the compression in my neck could be contributing to or causing my POTS. I was sent to physical therapy to help correct the problem. After my diagnosis, I was started on a low dose beta blocker, and that changed my life. I live a pretty normal life now, with just a few limitations. I was exhausted and tachycardic all the time before. My heart would pound when I lay down, and shoot up over 140 every time I stood. These are very rare occurrences for me now. In fact, I have not had an episode of tachycardia (unless I'm really exerting myself) in over 9 months. The key for you is to find a doctor who is familiar with dysautonomia. Repeatedly seeing a doctor who doesn't know what to look for is going to get you nowhere. I was initially misdiagnosed and stumped several doctors. When I finally saw my electrophysiologist for the first time, I described my symptoms, he checked my heart rate and blood pressure resting and upright, and I had a diagnosis within 10 minutes of him entering the exam room. That's because he knew what to look for. I know that you feel scared, anxious, and tired of feeling awful. There is hope, though. Take a look at the list of recommended physicians on this site. Find someone in your area. When you call to make an appt., check with the nurse and make sure they are well versed in POTS. Good Luck! Carolyn

Hi, Since you mention that you have deficiencies in some B vitamins, do you take any Niacin (B3) vitamin supplements? Niacin causes painful, burning flushing in many people. You heart rate increase upon standing does sound like POTS. Good Luck, Carolyn

Hey, Dayna, So sorry you are feeling so frightened and awful. I have had these symptoms before, with the exception of the flushing. The extreme weakness is both weird and terrifying. For me, it has always passed in a few days to a week, but it worried me lots. I don't know if this helps or not, but I will almost always get this horrible extreme fatigue when I'm starting a new diet, or have lost several pounds quickly. I realize this probably isn't the case for you, but I thought I'd share because I explained it to my doctor and he told me that it was an overreaction to a "rev up in metabolism" and it happens to some people who diet. He told me he thought mine was more severe because I suffer from dysautonomia. Since that conversation, whenever this happens to me, I calorie load. Sometimes it takes 24- 48 hours to go away, but often I will notice an improvement in a few hours. Do you see an endocrinologist? I know that "feeling like you're dying". For me, just being that completely exhausted and weak makes me think that something must be terribly, terribly wrong. However, I do always recover. Hope you get some relief soon, Carolyn

Hi, Stacey, So sorry you had such an awful experience. One of my best friends is a doctor. I met him as a patient, and became friends with him in the community later. Knowing him personally now, I have a much different understanding of the practice of medicine (even though I worked in the medical field before my kids were born). The bottom line for my friend (who by the way happens to be an exceptionally empathetic doc), is that his practice is a BUSINESS. He performs a service and in order to make a decent living, his patients have to be satisfied. For years, doctors have been treated like "gods", largely because their services are so valuable to us, and because they make so much money. There are other countries where doctors are not held in any more regard than anybody else with a specialized education. In the US, doctors are like royalty. We all need to adjust our attitudes and realize that they are just people. I can't think of any other profession in which you would pay somebody for their services, and have to endure the kind of unprofessional behavior demonstrated by this doctor and his staff. I don't know if this guy was having a collossally bad day or what, and I'm not sure I would file a complaint with the medical board, but I sure would write a letter. I would address it to the doctor, if he's the practice owner, or group (if it is one) and would very pointedly explain that I found the whole office to be run in a very unprofessional manner- starting with the receptionist who didn't put the letter in your chart, right down to the rude nurse and hostile doctor. Lots of people don't realize it, but it is not so easy to make lots of money in medicine anymore. I see time and time again that people on this board are losing their docs to "moves" and "re-locations". That's because it's hard to keep a practice running and profitable now. Lots of docs end up moving to clinics that are owned by hospitals or doctors that own multiple practices. This guy needs a major reality check. Give him one. Good Luck, Carolyn PS I have found since my diagnosis, that if I call ahead and talk to the doctor's nurse and explain my medical situation, I can usually get a pretty good feel for whether or not the doctor I'm going to see will be willing to treat me, or has any knowledge of my condition. It's been my experience that compassionate docs hire compassionate staff, so it's a good indicator of how I'll be treated at my appointment.

Hi, Amber, I'm not a medical person, but from what you quoted, it seems that the long term effect that you are talking about is in people with severe heart disease. Lots of people with heart disease take beta blockers. Some people who have healthy hearts take them (like us) and some people take them for other reasons ie: anxiety, etc... As for your other questions, I don't know whether beta blockers have any affect, either positive or negative, on developing heart disease. I also take Toprol XL. I have not always been great about remembering to take my medication, either. However, with this one in particular, I have found that it causes problems for me if I don't take it at the same time everyday. Hope this helps! Carolyn

Hi, Lisa, Sorry to hear about your scary experience. I have vision problems, too off and on. I have had these episodes of blurry vision, but mine haven't lasted very long. I've also done a lot of wallpapering in my time, and it is very phsycially demanding, especially if you spend any time on a ladder. I don't think you should underestimate the toll wallpapering can take on your body. Do you by any chance have any neck problems? The combination of being on a ladder, having to hold the paper on the wall with your arms up while looking up is really, really hard on your neck. I was told by my neurologist never to hold up my arms and look up at the same time. When I have, I have often had vision problems and terrible headaches for days. Normally, I would have to really get serious with some NSAIDS in order to feel any better. Also, I know that I tend to sweat heavily when doing that kind of work. Is there a chance that you are dehydrated? Hope you feel better soon! Carolyn

I agree with Be Still that this is somewhat of a paradox. I very gradually increased my level of activity once I was properly diagnosed and on medication. I found that if I push myself, but not to the point of exhaustion, I do best. Since my diagnosis, by far my worst days have been days I decided that I would "take a day off" and pretty much lay around and rest. Those couch potato days made me feel absolutely awful. The resting seemed to increase my fatigue about 10 fold. With a gradual increase in activity, I now live a normal life with a few exceptions. Hope that you are feeling better soon. Carolyn

Hi, I think this is an individual decision that you have to make yourself with the help of your doctor. For me, the answer turned out to be "no". I tried taking a beta blocker only when I was really symptomatic, but it seemed like my symptoms progressed and when I felt bad, I felt lots worse than I had before and took longer to have a "recovery period". Also, I had a big increase in the number of resting tachycardia instances with adrenaline surges. My doctors all told me that I could take medication just when I needed it if that was my choice, but none of them thought it was a good idea. I now live almost a completely normal life on a time-release low dose beta blocker. I also have a healthy heart and maybe I should be worried, but I have not been concerned about the effects of long term beta blocker usage. I have several friends with genetic hypertension that have been on them for years and don't seem to have a problem. Perhaps there is negative information about their long term use that I haven't heard about. I do know this for sure: When I used them sporadically, I felt ill in the mornings and my afternoons were unpredictable. I hesitated to make any advance plans. My heart pounded almost constantly, even whey I wasn't having tachycardia. Taking a hot shower was out of the question. Many days, I would stay in bed most of the day because my standing heart rate was so high it was exhausting me. I could do very little physically. In the 7 months since I have been on beta blockers consisitently, I have had only one adrenaline surge (two weeks after I started the medication), my heart pounding is essentially gone, I take a hot shower everyday, and can even tolerate a long, hot soak in the jacuzzi. In the past week, by myself, I have painted three rooms with high ceilings, cleaned out my 110 degree attic for 3 1/2 hours alone, and lugged boxes up and down 2 flights of stairs. I can make appointments with confidence that I can keep them, and am no longer worried that I won't be able to take my kids to school in the morning or be too exhausted to pick them up. In short, even with the risk of long term effects, I am living my life now. I wasn't able to live my life the way I wanted before. For me, the answer turned out to be consistent medication at the lowest dose possible. I think all of us with this disorder are all different. You know your body best and are the best person to make this decision. Good Luck, Carolyn

Hi, So sorry to hear about your daughter's health problems. I have to agree with lthomas. My husband had an employee whose child had a mitochondrial disorder, and I see many, many parallels. They had a very difficult time getting a diagnosis. I think the child's mom did some research and came up with the idea of mitochondrial disorder on her own. I believe the little boy had a confirming biopsy somewhere in Atlanta. His condition is not life threatening. Wish I had more information for you! Carolyn

Hi, I could be wrong (I'm not a medial person), but I thought it was called the conjunctiva. It covers the eye and also lines the eyelids. Carolyn

Hi, Linda, Just a suggestion, but I don't know if it will work. My event monitor kept going off because the leads didn't stay well (when I was wearing the pediatric ones). The monitoring company told me to use Band-aid to stick them on. (remove the sticky stuff and put two Band-aids in an X over the leads). I'm very allergic to the regular leads, but I'm not allergic to Band-aids. It worked very well. Hope you find what works for you! Carolyn

Hi, Sometimes your insurance will cover it if your doctor calls and says that you already tried the OTC stuff and it hasn't worked. I don't think there are any PPIs on the market that are over the counter, just acid reducers. Also, did he give you any samples? If you can get 30 days worth, that is sometimes enough to get me over POTS-y GI issues. Carolyn

Hi, Janine, So sorry for your lousy experience! I also have medical insurance that only covers prescriptions that are written by participating providers. That is a real drag! This is probaby something you've already thought of, but have you tried calling your old PCP, explaining your situation and then asking if they have any samples to tide you over? (I don't know if that's even possible with this particular med). Also, when you see your new internist next week, if he/she doesn't feel comfortable writing a prescription for an unfamiliar med or prescribing meds for an unfamiliar condition, perhaps you could suggest that they phone your old doc. He should be able to explain the reason for the prescription. My friend who's a doctor always says, "I'll be happy to talk with anybody who's treating you. That's my job!" Good Luck! Carolyn

Linda, I'm hoping all this good new is from your appt. with Kelly Hayes. The monitoring system hopefully will catch what's causing you problems. I think it's great that you'll be monitored in real time. It's got to feel good to know that a doc is really concerned for your well being. I'm wearing an event monitor right now and I am seriously allergic to the pads. I have both the regular and pediatric ones. The pediatric don't bother my skin at all, but they don't stay on that well, either. I went to my doc and got a prescription for a steroid called Diprolene. It is a topical steroid that I have used in the past for severe eczema and allergic dermatitis. My doc thought my reaction was bad enough for a round of steroids, but I prefer not take them. This stuff worked immediately. I use a thin film of it on the allergic area, and move the pads to a new location each day. I have been able to go back and forth like that, alternating the Diprolene and pad placement and it has worked well. I don't know about you, but if I let a skin reaction go for a few days, I end up having allergic dermatitis over 90% of my body. Then I have no choice but to end up having to take a dose pack of predinisone. Good Luck! Carolyn

Hi, Sorry you are having trouble with your meds. I have asthma and just picked up a prescription for Xopenex yesterday. I only get really jittery with Albuterol, but my heart doesn't race. I don't like the feeling I get, though. I'm actually starting Singulair today, so I don't know how that will affect me yet. How high does your heart rate get? Is it a steady increased rate, or are you having periods of tachy that come and go? Wish I could be more helpful. Carolyn

Before I started medication, my worst times for tachycardia were rolling over in bed at night and getting up after sleeping. My heart rate would go from 60 to over 140+. My friend who's a doctor told me that was because the ANS system becomes "quiesent" during sleep. Waking up, rolling over, or getting out of bed sort of "startle" the ANS and mine responds irritably. A phone ringing in the middle of the night can send my heart rate sky high! Before meds, I always did better in the afternoon after I'd been up and about for a long while. Carolyn

Hi, Linda, I'm nervous about taking new meds, too. You aren't crazy! Many people have this problem. Lots of times I fill prescriptions and never have the nerve to take them! I'm also an anaphylactic and have had reactions to medications before. In fact, the first time I had a run of resting tachy was after taking a brand new antibiotic. I had POTS symptoms before that, but that was the beginning of it becoming "full blown." But, we have to face it, our quality of life can be compromised, and if there are drugs out there that can make life better, we really have to try! Here are a few things I do with a new medication. 1) I never take more than one new med at a time. 2) I never take a new medication alone. Somebody has to be with me and for several hours after. 3) I make sure I have liquid Benadryl (I think there are dissolve tabs available now that are even faster acting than the liquid) on hand as well as my Epi-pen handy. 4) I won't start a new med if I fill risk factor-y. By that, I mean if I have been exposed to any other things that bother my allergies. For example, I have an issue with high humidity. I will not take a new drug if the humidity is very high and I feel a little asthmatic. 5) I try to keep myself occupied after taking the first few doses. Otherwise, I am sitting around thinking, "Is my throat closing? I am I feeling itchy? etc...." Hope this helps! Carolyn

Hi, Glad you got the proper diagnosis. I didn't have the tilt, just the poor man's tilt, but my heart rate did (and does) just what yours did. It spikes upon standing, takes a while, then comes down almost to normal, then goes up and sort of fluctuates. The same thing happens when I stand still (like when standing in a line) for a long time. I'm optimistic that you will respond well to meds. I did, and since I was dx properly, live life like before POTS with a few limitations. Good Luck! Carolyn

Thanks, Melissa. I didn't realize that!

Hi, I live in Georgia (Augusta area) and see Dr. Wharton at MUSC in Charleston, SC (that's about 3 hours from here). I'm told that there are EPs at Medical College of Georgia here in Augusta that are familiar with POTS, but I don't know their names. My neuro from SC (I just moved here) is transferring my care to Dr. Rivner at MCG. My neuro has a few patients with POTS, but feels that Dr. Rivner is very knowledgable about POTS and he's right in town. He couldn't get me an appt. until May, but I'd be happy to let you know how it goes after I see him. Carolyn

Thanks, Melissa. I think I'll check with his office first (I have some event recorder readings to go over with his NP over the phone later this week) and if he doesn't mind, I'll post his info. Janine, I'll try sending you a PM with the answers to your questions. Carolyn

I've been visiting this board since August of 2005, and I'm wondering if anybody else out there goes to the same electrophysiologist as me. His name is Marcus Wharton and he is at MUSC (Medical University of South Carolina at Charleston) He is the Director of Clinical Cardiac Electrophysiology. He used to be at Duke. After 10 months of improper treatment and a misdiagnosis (during which my symptoms got progressively worse), a physician friend found him for me. I got an appt. rather easily after explaining my symptoms to the scheduling nurse (she fit me in in 3-4 weeks). They asked for all my records a couple of weeks in advance. At my appointment, I was interviewed for about an hour by his NP Judy (who is fabulous). She opened up all my records and explained everything to me, including results to tests that the ordering doctors had never reviewed with me. She and Dr. Wharton had already thoroughly reviewed my records. She then reviewed my interview with Dr. Wharton. Once he came in, he asked me more questions about sweating, and GI function, etc.... He told me I would probably need a TTT, but performed a "poor man's tilt" and explained the results and said I didn't need one after all. He diagnosed me with POTs right in the exam room. He also explained why the meds I had used in the past (that had made me much sicker) had been the wrong choices. He spent over an hour with me and has an excellent bedside manner. I only had pretty vague questions, because while I had heard of POTS before, I thought I was going to be diagnosed with SVT that day and was preparing to be told I'd need an ablation. Instead, he told me that ablation was a big no-no for POTS! The reason I'm writing this is because I never see his name mentioned and one of the most impressive things about being his patient is the follow up care. I notice lots of people on the board have trouble with that. If his office hasn't heard from me in more than 3 months, they call me! They always ask me if I need to be seen, have any questions, and "want the details" of how I'm doing. They even ask me to type it up and send it in for my chart! Every time the conversation ends, Judy says, "Let me know if you want me to get you in here!" I have never waited more than 24 hours to have a phone call returned. Usually it is within 2 hours. MUSC in general has been great. They even make hotel reservations for you when you make an appt.! (I lived 5 hours away when I was diagnosed). Anybody else out there with the same doc and the same experience? Carolyn

Hi, Both my neurologist and electrophysiologist think there is a link between my cervical issues and my POTs. I went to physical therapy and I get injections of saline in my shoulders every three weeks to loosen up my muscles. Nobody has ever suggested surgery to me. My POTs is under control now, and I live a pretty normal life, so I'm not sure if the link is real or not, but I know I felt better shortly after I began PT (but I also started on beta blockers close to the same time). I also have a big decrease in chest pain (I get the kind that is centered over my heart) after successful PT and injections. My electrophysiologist is very interested in the connection between my neck injury and my POTS. If the office hasn't heard from me, they call every 3 months and ask how my neck is. Carolyn

Hi, Janine, Sorry to hear you are feeling so badly! I just wanted to share that I had my tonsils out when I was 37 (I'm 42 now), and everybody told me it would be so painful I would "want to die", but it was really a breeze. In fact, I couldn't believe what a difference it made in my life. I had a sore throat everyday for over 4 years and even had a scary tonsillar abcess once. I will add that I had symptoms of POTs back then, but my symptoms weren't bothersome enough to warrant a diagnosis until last year, so I can't say if the surgery will make your POTs worse or not. Just thought I'd share that my experience was positive in case you decide to have them out. Hope you feel better soon! Carolyn

Thanks for all the info everybody! I'm not really sure what I'm going to do now! The low BP sounds a little scary. My normal BP runs a little low/normal, and even with adrenaline surges and tachy in the 190+ I never get even pre-syncopal. I'm very grateful for that, and I don't want to tempt fate! I've actually only had my blood pressure taken once during a surge, and that was before I was diagnosed. It was wierd, 164/60. 60 is my usual diastolic, but the 164 was about 60 points higher than my normal. The ER doc said it was "fine". My friend who is a doctor said that it was a classic "hyperthyroid BP" and I never asked her what that meant (because we both knew I was not hyperthyroid). Luckily, I haven't had a surge since August, but I'm going to make sure and take my BP the next time I have one. Maybe I'm just going to have to accept that this is as good as I'm going to get. Thanks again, Carolyn