LindaJoy

Hi again, Just wondering. ARound my period time and / or when my POTS is really bad (especially if it's causing my sugar to be consistently low), I have uncontrollable bouts of anger with frequent outbursts--well, about two a month, especially, as I said, right before my period--like one or two days before I start. Does anyone else have this? If so, is it from the POTS? It seems, the older I get, the worse it gets. Thanks. LindaJoy

Hi, again, I get adrenaline surges with anger, stress, excitement, exercise. You name it, my adrenaline rushes with it, and if it causes my adrenaline to trickle a bit more than usual, I cannot then shut it off without a Xanax. What do you take for your hyperadrenergic POTS? Do you take this on a daily basis? Thanks. LindaJoy

Hi, Roselover, Oh, you're so fortunate to have seen Dr. Grubb. I'm still struggling with my POTS, with hardly any medical advice to help. When you have a moment, could you tell us what Dr. Grubb had to say about your POTS and POTS in general; ie, the latest medical findings on it, any new treatments that seem to be helping, etc. Dr. Grubb will be speaking at a forum in my town on Feb. 21st to the medical community. I know about it because it's my POTS paperwork that I sent to the head of our largest hospital that started the ball rolling on a meeting to learn about POTS. I'm now waiting to hear if I'm allowed to come. I'm really, really hoping. I've had POTS most of my life (has gotten much, much worse over the last few years), and I feel I know less about it now than I ever have--too many opposing opinions on it. Thanks, Roselover. I'm so happy for you. LindaJOy

What SSRI do you take, if any? Too, do you take Xanax or Klonopin (spelling?) for adrenaline surges and / or anxiety? Thanks! LindaJoy

Hi. I'm still doing the "trying to find an anti-depressant that won't send me to the ER" game, and my doctor now wants to try Remeron. I've read some of the threads on it here, and all have been negative. Not just negative, scary, actually. Can you all please tell me what your experiences have been on Remeron? Any positives out there? Thanks. Linda

Hi, Persephone, Just wanted to say congrats on the new bike and the ability to walk 3 miles! Wow. I know how good that must feel, both physically and mentally. I agree, though, to take it easy and build back up. Again, great going for you! I'm so happy to hear good news. LindaJoy

Hi, everyone, It's been awhile. Over Christmas, I went through a severe bout of depression. I couldn't stop crying for days and days. My doctor put me on Paxil, 12.5 mgs. daily, which threw me into tachycardia episodes and POTS symptoms. He now wants to try me on Lexopro. While looking that medication up on the Internet, I came across Anxietol 7, a natural treatment for anxiety and depression. Has anyone ever heard of it or even tried it? If so, what do you think? I'm so afraid to try new things because, as you all know, with POTS, you never know what you're going to do! Hope you all can help me. I'm very, very depressed and know I need a medication, but I just don't know what will work with my POTS. Thanks. LindaJoy

Thanks, everyone, for your words of advice and support. I'm supposed to call my doctor in two weeks to let him know how the Aciphex is working. Right now, my stomach hurts, my guts and back are burning and I feel lousy. Hmmmmmm, maybe not working so good, huh? Again, thanks for the responses. And, Roselover, it's good to be back. LindaJoy

Hi, everyone, It's been awhile. I'm finally doing better, but my gastritis is now acting up. A few questions: One, how many of you have gastritis? Is it caused by the POTS somehow? Does gastritis and delayed gastric emptying have a connection? I haven't been tested for delayed gastric emptying as maybe the reason I have gastritis. Should I be? Secondly, the doctor put me on Aciphex for the gastritis. It seems to help, but I now have headaches, which I know is one of the side effects. Does anyone know of an acid reducer drug that doesn't have headaches as a side effect? And, the Aciphex seems to affect my heart rate. Does anyone else have this with this medicine, or with other acid reducers? Thanks, everyone. Again, sorry I've been gone so long. Between the POTS and other health stuff, life has been really hard lately. Take care, all. LindaJoy

Hi, Rachel, I live in Ohio and have Dr. Fouad at the Cleveland Clinic for my POTS doc. She is, like everyone says, a great one to go to for the initial testing, but for follow-up care? No. She continually refers me to my family doctor, who won't touch my POTS with a ten foot pole, so she refers me back to the Cleveland Clinic. In other words, I'm not getting much done here. I've heard wonderful things about Dr. Grubb, but he's the only Ohio doctor I've heard great rants about. I saw him once. He was in on the ablation that was attempted on my heart back in 1998. It was unsuccessful, thank goodness! But, that's the only contact I ever had with him. Sorry I can't be of much more help there. Hope this helps. Good luck. LindaJoy

Hi, everyone, Thank you for your thoughts and your caring wishes. You've made me cry, which I do a lot these days. I will keep Lexapro in mind, as it sounds like something that may help. DancingLight, I went off of Florineff at the end of May, and I still have the weight gain (15 pounds) that I can't seem to lose, which isn't helping my emotional state any. I read somewhere here at the forum that it takes 6 weeks to get the stuff out of your system completely, which would put me right about now. What do you think? Could I still be having some reactions to it? Michigan Jan, thank you for your information. I was on Zoloft for over 6 years. I know, from what I've read, that it takes a month for the body to adjust to it being gone, but it's been well over a month, and I'm more of a mess than I've been in a long time. My POTS is worse than I can remember it being, and my emotions are a wreck. I also feel shaky all of the time, like I have fingers crawling up my back, and I just want to shake. I feel like I'm losing my mind. My body is a wreck, my mind is a wreck, I'm depressed. My daughter called me the other night--I hadn't heard from her in a week, and she lives in Alabama, so you'd think I would really listen to her news, right? Oh, no, not me. I had ADD the entire time we talked, which was around 40 minutes. My husband asked me if Bethany had any news, and I really couldn't say. I just couldn't concentrate on what she was saying. I've had trouble concentrating before, even on the Zoloft, when my POTS is bad, and it's been bad now for awhile. Could all of this be from POTS? I just don't know anymore. Thanks, everyone, for letting me go on and on. I may not be on for awhile because it's getting harder and harder to sit at my computer, but I'll check in as soon as I can. Love, LindaJoy

Hi, everyone. I've been gone for awhile. I'm sad to see the newbies who've come in my absence, but I welcome all of you and am glad you found this site. The support here is great. All of you know, a few months ago, I was put on Florinef and taken off of Zoloft. I've not been right since. Emotionally and physically, I'm a wreck. I have a horrible temper and seem to yell all of the time. I"m in therapy for that, but it feels more physical than emotional. Emotionally, I feel like I'm in a big hole and don't care anymore to climb out. My POTS has good days and bad days--the last few days have been really bad. I can barely sit here to type this. I'm so depressed about having a chronic illness and not being able to work, that I can't stand it anymore. I know I"m depressed, and I should go back on an anti-depressant, but the Zoloft seemed to GIVE me anxiety. Can anyone suggest one that will help and not hurt? I'm sorry to be so down. I know all of you have your daily battles, too. I love all of you. Take care, LindaJoy

Jan, I will keep you and your husband in my prayers. I will let my husband know of your husband so that he, too, can remember him, and you, in his prayers. Please keep us posted. Remember--the Lord gives us nothing greater than what we can handle. When we get to the end of our strength, we become even stronger because that's when we start to use the Lord's strength. Blessings to you both, LindaJoy

Hi, everyone. I haven't been here in awhile. I have a question I need to ask. A few weeks ago, I stopped taking my Zoloft completely (had been on it for around 6 or 7 years). I didn't do it all at once; my doctor had me ween off slowly, but that was hard enough. I feel mentally clearer than I have in years! I also was on Florinef for about a month, the went off of that two weeks ago. I had gained too much weight too quickly (12 pounds in three weeks). Once I got off of the Florinef, I lost a bit of weight, but now I've gained it all back again. It seems all I want to do is eat. I know Florinef is a steroid, so I'm not surprised, but when will the Florinef be totally out of my system, and when will the side-effects of it be gone? I'm heavier than I have been in years, and it's a bit uncomfortable. I've started my treadmill again, and weights. I know everyone is different, but a guesstimation will be very much appreciated. Thanks, all. LindaJoy

Ernie, I, too, am so very sorry for your loss. I really don't have any advice to offer except to do what you feel you need to do, for you, no one else. Again, I am so very sorry for what you're going through. Know you're in my heart. Linda Joy

Born in Lima, Ohio, now live in Columbus Grove, Ohio, about 1 hour south of Toledo, Ohio. Linda Great idea, this thread!!

Hey, Mom4 Cem, I used to have POTS problems while driving, if I was singing along to the radio. I would get breathless, then dizzy, and my heart would do funny things. At www.potsplace.com, under "What to Avoid," on page 4, singing is listed. It says, "Singing has been reported to temporarily worsen symptoms in some individuals." I guess we could never win American Idol, huh? We'd pass out on stage!! Hope this helps. LindaJoy

Hi, Monica, How are you doing on your Florinef? I just saw my pcp today because I was having some problems on my Florinef. I gained 15 pounds in 30 days. She said she thought I was overdoing the salt and had to come down on the medication to maybe only half a pill twice a week. I also had muscle pain, a loud buzzing in my ears, dizziness, nausea and felt really POTsy. My bp was also beginning to rise, along with my resting pulse rate. I haven't taken the Florinef since last Saturday, and I feel so much better. Yet, like all of you, my doctor wants me to give it another try. I'm not so sure I want to! Let me know how you're doing, Monica. Maybe you can give me some hope! Linda P.S. I did see a benefit from the Florinef--I wasn't peeing as much, if at all!

EM, You did so well with all of this! And, it sounds as though the ER medical crew deserves a great big hug, as well! I'm so glad that something that can be terrifying turned out so well. I hope you do well on your new medicine. I just wondered, you mentioned a DINET card. I know it's probably been mentioned a million times here, but where do you get one? I think, as many times as I'm in the ER, I need one! Again, I'm so glad that your experience turned out better than expected. Let us know how your new med works out for you. Linda

Hi, everyone. Just wanted to let you know, and this thread is a good place for it, that I got a call from the hospital in my town, where I sent the packet of POTS information, and they are doing two educational POTS sessions for doctors next year, one involving a talk by Dr. Grubb. I'm so excited. Dr. Grubb has already been booked. The doctors in Lima, Ohio, are very interested in this topic. I'm also a writer--had to quit my job last week, but I still have the know-how, I guess--and am more than willing to help with whatever endeavor you all wish to pursue. I've thought of Michael J. Fox, as well, since he has Parkinson's. Has anyone seen where Cameron Diaz, since having her baby, has been experiencing memory problems? I'm thinking maybe POTS after childbirth? If so, maybe she would be a good one to approach at some point. Just let me know what it is I can help with. I've pasted below the letter I wrote to the doctors in my area, just to give you an idea of what I said. If I can help write more letters like this one, let me know. Dear Medical Staff at St. Rita?s Medical Center: Enclosed, you will find information pertaining to the medical condition called POTS: Postural Orthostatic Tachycardia Syndrome, of which I am a sufferer. Dr. Fetnat M. Fouad, of the Syncope Clinic, at The Cleveland Clinic Foundation, recently diagnosed my condition. While my diagnosis has been recent, my experience with the devastating, sometimes debilitating, symptoms of POTS has been ongoing for nearly 14 years. During those 14 years, I had sought medical attention from many of the fine physicians in the Lima community, only to be told that my condition was psychological, not physical, leaving me with virtually no help at all to improve my circumstances. (A simple perusal of my ER records over the past years will give you an idea of my frustrating diagnosis history: anxiety, panic disorder, when it was really POTS.) After so many years of debilitation, I sought help from a specialist at The Cleveland Clinic Foundation, who ran a Tilt Table Test. After only 7 minutes, the test showed, conclusively, that I suffer from POTS, a physical condition. Two weeks later, I returned to The Cleveland Clinic for further testing, in an attempt to determine the cause or causes of my POTS condition. My tests showed low blood volume, extreme venous pooling and rapid circulation (possibly due to hyperadrenergic response). Because research into POTS has truly just begun (see information from the National Dysautonomia Research Foundation, located at www.ndrf.org), the exact causes of POTS, even through current testings, are more speculation than science. I may never know what exactly caused my POTS condition, although I did begin with major POTS symptoms after experiencing a severe virus. What I do know is that my condition is real, as are thousands of other patients? POTS conditions, which need to be heard, properly diagnosed and cared for. That?s why I?ve put together the enclosed packet of POTS information, mostly from the Dysautonomia Information Network, found at www.potsplace.com, that relies heavily on Dr. Blair Grubb?s research. Dr. Grubb is a cardiologist from Toledo MCO and is one of our nation?s leading authorities on POTS. Armed with education, more and more medical specialists in our community will be able to properly treat their POTS patients, restoring in these sufferers a better quality of life. Because the information I have on POTS is extensive, I?ve included, in this package, only those reports I found to be the most direct and informative. I will include, below, other websites, should you wish to further research POTS, that I have found to be useful, as well. I?ve also enclosed, in this packet, my Tilt Table Test report, so that you can see how a POTS patient responds to long-standing. Mine is a typical response in POTS patients. As you can see from the enclosed material from potsplace.com, POTS not only affects one?s ability to stand or sit for long periods of time, causing dizziness, brain fog, anxiety response, blood pooling and syncope, but so many other symptoms accompany POTS, as well, many symptoms that resemble anxiety or panic disorder. Please, keep in mind, POTS patients do experience anxiety, but as a secondary symptom to a primary physical condition. As a physician who cares about his or her patients, I do hope you find the enclosed information to be helpful in working with your POTS patients to improve their qualities of life. Should you have any questions about POTS, from a patient?s perspective, I would be more than happy to answer any questions you may have. Thank you for the time you?re taking to research POTS. I look forward to hearing from you. Sincerely, Linda Parsons Please feel free to access the following websites for further reading on POTS: Dysautonomia Information Network www.potsplace.com  If accessing this site, please be sure to enter the FORUM, where you can read threads from POTS patients around the world! I am a member of this FORUM. The information POTS patients have about their condition is extensive and could be quite helpful to you in your research. National Dysautonomia Research Foundation www.ndrf.org ?Postural Orthostatic Tachycardia Syndrome: Patient?s report on causes, symptoms and treatment? http://home.att.net/~potsweb/POTS.html *Written by a POTS patient. Very informative. Quite extensive research. Vanderbilt University Autonomic Dysfunction Center www.mc.vanderbilt.edu National Institute of Neurological Disorders and Stroke www.ninds.nih.gov ?About Dysautomia? http://heartdisease.about.com/cs/womensiss...autonomia_p.htm * Written by Dr. Richard N. Fogoros Thanks, everyone, and please let me know how I can help get the word out about POTS. Linda Joy

Morgan, you're very articulate and very helpful. Thank you. I haven't worried about my heart in a long while because I've had so many tests on it that came out okay, that I just began chalking my tach and stuff up to POTS, but now, when these results came back and said something about block, I wondered what they were thinking up there at the Cleveland Clinic. And, the results were just sent to me with no explanation or interpretation. That's always nice. You had an ablation? I had the electrophysiology study, but they could not ablate because they could not find where the tach was coming from. At the time and for years after (was done in 1998), I was depressed that they couldn't "fix me," but now, after reading all that I have about how the ablations make the POTS worse, I'm glad they didn't ablate. What problems have you had because of the ablation, if you don't mind my asking. Again, thank you for responding, Morgan. I appreciate it because I feel better now! Linda

Hi, janineerrn; You mentioned, concerning my heart monitor results, that the "atrial tachycardia with block" means that I have an interruption in the electrical conduction that reg. my heart rate / beats. What can cause this? Thanks for your response. You were very helpful in clarifying my results. Do any of the results seem serious to you? Thanks. Linda

Hi, Janine, I've already had an electrophysiology study done (back in 1998), and was found to have a dual pathway, but the tachycardia I was experiencing was not coming down through the second pathway so was told they couldn't find what was causing my tach, my irregular beats, etc. and was put on Cardizem CD. I experience these things very irregularly, mostly when I'm stressed or having POTS problems. What kind of conduction problems are there? Linda

Hi. Had to wear a heart monitor for 30 days, and just got my results. Some of the abbreviations my doctor used, I don't understand. Can someone help me? What are ve's? It says, "Demonstrates normal sinus rhythm with ve's." What are couplets? It says, "Demonstrates normal sinus rhythm with pvc's (I know what these are) and couplet." How serious is atrial flutter? It says, "Demonstrates atrial flutter." I know what this is, just not how serious it is. And, what does this mean: "Demonstrates sinus rhythm with ventricular bigeminey." What is ventricular bigeminy? Also, after that line, it reads, "Cannot r/o atrial tachycardia with block." What does that mean? I only received a listing of my call-ins, with no explanation. Thanks for your help. Linda

Thanks, everyone. I did this for all of us! I'm so glad to be a part of this forum, I can't tell you. I've never felt so supported or cared about in my life. If anyting good has come of this condition, it's being here with all of you! JLB, I sent the information, all of it, from the www.potsplace.com website, plus a few other articles: the patient written article found at http://home.att.net/~potsweb/POTS.html, a copy of my tilt table results, this forum's website address so they can peek in at real patients!, a copy of an article from Johns Hopkins Children's Center ("General Information Brochure on Orthostatic Intolerance and Its Treatment"--I think you can find this just by plugging in the title in your search bar), an article written by Dr. Grubb that the Cleveland Clinic sent to me--I can make a copy and send it to you. Actually, if someone can tell me how to post articles on this site, I can post it. It's a really, really good article. Hope this helps. Let me know how else I can help. Hugs to you all, Linda